Maxton David Standifer

Update

2010-10-08T14:49:00.000-07:00

It's been forever since I have updated here. I just wanted to let everyone know that Gatlin Grant Standifer was born 4 weeks ago on 9/10/10 at 7:49am. He weighed 9lbs. 4 oz. and was 23 in. long. He was born 18 days early... the same number of days his brother lived. I found that interesting.

Since Gatlin has arrived, life has been good, but he does make me miss Maxton more. I can't believe my Max would be 19 months old now! I wonder how he would be with his brother. We have already been telling Gatlin about his angel brother. I am sure he will grow up knowing about Maxton and loving him just as we do. I posted Gatlin's birth story and some pictures on our family blog. Please feel free to visit it!

www.ourstandiferfamily.blogspot.com

Will Max have a brother or sister?

2010-04-05T13:44:00.000-07:00

We had an ultrasound on Sat, at 15 weeks, to see if they could tell the sex of the baby. We are fairly certain Maxton will have a little.... BROTHER!!!! Let me know what you think!

I am excited. We will have an ultrasound in May to confirm this and more importantly to make sure the little one is healthy! We are planning to name him Gatlin Grant!

In other news, I have decided to start a new blog about our life. I do not want to continue to post about this pregnancy here as I want this blog to be used for CDH awareness and to be seen by families who need it. Our new blog is- www.ourstandiferfamily.blogspot.com

Please visit the new blog for updates about the pregnancy and our lives. I plan to only post things related to Max and CDH here.

Thanks for checking in on us!

Happy birthday baby boy!!!

2010-03-03T18:05:00.000-08:00

A year ago tonight, my Maxton was born. This time a year ago, I was in the hospital anxiously awaiting my fighters arrival and watching The Biggest Loser. :-) I was terrified that I would be in the position I am in today. When he was born, he did not cry. He was such a shade of purple, that I was scared. But, after some work and ventiallation he pinked up and looked pissed that he was no longer safe inside mommy... and frankly, I was upset too! He was beautiful. I only saw him for a few minutes from across the room while the team of doctors worked on him (he seriously had like 10 people all to himself!)... but he was beautiful. He was then taken to be stabilized... I was taken to my room and waited for them to call. They were supposed to call in about and hour and a half to let us know his status. He was born at 11:30... we didn't hear from anyone until about 4am. I would have been worried, but I had fallen asleep. They called and told he was doing great! I was skeptical, but excited... and my mom took me to officially meet my little man. He was sooo big. Much bigger than I expected... He looked so much like me. I loved him sooooo much and was so worried that he wouldn't be here today.

Happy birthday little man!!! Mommy will never forget the day you were born- one of the days that changed her life forever.

Big Brother Maxton!

2010-01-17T10:41:00.000-08:00

So, we found out on Friday that we are expecting again! Tentative due date is Sept. 25th. I am very excited, yet terrified all at the same time. :-)

We decided to go ahead and share the news with everyone because we could certainly use the prayers and good thoughts. I know that our newest "soybean" (because he was conceived using soy- if you are having trouble getting pregnant, let me know because I am confident the soy helped...) has the best group of angels watching over him. i don't know what God's plan for this pregnancy is, but I pray that come Sept. we will be bringing home a beautiful baby! I just wanted to share our good news with you all so that you can call be praying....

I'm Spending Christmas with Jesus this Year

2009-12-23T19:25:00.000-08:00

I'm Spending Christmas with Jesus this Year"

I see the countless Christmas trees
around the world below
with tiny lights like heaven stars
reflecting on the snow

The sight is so spectacular
Please wipe away that that tear
For I'm spending Christmas
with Jesus Christ this year

I hear the many Christmas songs
That people hold so dear
O', the sounds of music can't compare
with the Christmas choir up here.

For I have no words to tell you
of the joy their voices bring
for it's beyond description
to hear the angels sing.

I know how much you miss me,
I see the pain inside your heart.
but, through our memories so dear..
We're never far apart.

I can't tell you of the splendor
or the peace here in this place
Can you just imagine Christmas
with Our Savior.......face-to-face.

I'll ask him to light your spirit
As I tell him of your Love.
Then I'll pray for 'One another'
As you lift your eyes above.

So please let your heart be joyful
and let your spirit sing
for I'm spending Christmas in heaven
and I'm walking with the king.

Update

2009-12-21T19:36:00.000-08:00

Today it has been 9 months since saying goodbye. Lately, I find myself missing him more. I think this is in part due to the holidays. I LOVE Christmas. I am a Christmas person. I cannot wait to decorate and shop and just simply love being with family. (that doesn't sound very "true meaning", but I love that part too!) This year... it's just not right. He is missing. I should have a child to buy for. He should be here in our Christmas picture. He should be wearing the cheesy cute snowman outfit I bought for him last year when it was on clearance... He should be enjoying his first Christmas. 9 months is the perfect age! Still a baby, but old enough to enjoy it... It's simply not fair! Instead of buying gifts for my baby, I bought things to take to his grave. I am angry and bitter. I feel stupid to have thought that he would be here... I knew he was sick, yet I bought all these things for him last year... and now they sit in our house. A reminder of lost dreams.

I am also upset that I have not been able to successfully conceive again. At this point, it seems like getting pregnant is going to take some time... my horomones are still not normal and are not conducive to a pregnancy. I am going to the doctor to discuss this, but am not sure what to do. I've been taking some natural supplements, so we will see how that works this month,... but to be honest, I am not expecting anything. I keep telling myself that if I am not pregnant by Max's first birthday, I will likely be buying for David only next Christmas too.... my heart is broken and I simply don't know how to fix it...

And the winner's are...

2009-12-19T21:53:00.000-08:00

First of all, I didn't realize just how blessed I would be by participating! I wish I could send you all paintings. If anyone decides they really want one, I would be more than happy to make you one for $10. This will cover the cost, plus mailing, and extra will be donated to a CDH organization, The Parker Reese Foundation. Just email me at Ashleynaye@aol.com.

Anyways, the first winner was randomly chosen by random.org. The first winner is Jamie W, comment number 11!

The other two winners are winners that are not so random... they are Maxton's special days.

Candice Beal- comment number 3... because Maxton's birthday is 3/3/09
and
Lost for Words- comment number 18... because Maxton lived for 18 days with me before going to heaven.

Congrats you guys!!! :-) Please email me or leave a comment here so I can get in touch with you.

Much love to all my new friends during this difficult time. I will be visiting your blogs in the coming days and praying for you families. Thank you for stopping by.

25 days of Giveaways! :-)

2009-12-18T19:11:00.000-08:00

Tomorrow- Dec. 19th- is my turn to give away my item to those who have lost a baby (or more...). I am going to post my giveaway today and I will announce a winner tomorrow night. For those of you who are new to my blog, welcome. I am so sad that we have met under such heartbreaking circumstances, but I look forward to visiting your blogs and reading about your angels.

I reinvented myself after Maxton, and one of the things I found was that I love to be crafty. This was really something I have always known, but not something I have neccessarily always done. Anyways, after Maxton passed, I began painting...

So, I would love to paint a canvas in memory of your little one. By no means am I a great artist, but i can promise that I will put a piece of my heart into your work. I cannot show you what I will be sending because I like to read through the persons blog and create something especially in honor of their angel, but if you would like to see some samples, please go here

Some of you may already have a painting... if this is the case, I have something special in mind, so please still enter!!! :-)

AND... in honor of Christmas and my sweet son, I would like to give away 3 prizes..... so, there will be three lucky winners.

To enter, please leave me a comment and tell me what makes you think of your angel... I will go first!

turquoise makes me think of Maxton. Turquoise is the color of the CDH awareness ribbon. Maxton was born with CDH- congenital diaphragmatic hernia. I LOVE all things turquoise now... Also, butterflies make me think of Maxton... specifically, turquoise butterflies.

Now it's your turn! :-)

25 days of giveaways... day 2!

2009-11-28T08:03:00.000-08:00

Visit Jeanette to win today's prize- a beautiful handsown doll! Check it out.

25 days of giveaways.... day 1

2009-11-27T11:55:00.000-08:00

Visit Tina's blog to win a beautiful hand stamped necklace with your little angel's name on it. Tina makes awesome jewelry that you can also buy if you aren't the lucky winner. :-)

Hope everyone had a good holiday!!

25 days of Christmas!

2009-11-25T12:21:00.000-08:00

This is for all you mommies with babies in heaven. Tina had a great idea of hosting blog giveaways for all those who have lost babies to help cheer them up this holiday season. I can atest that this holiday season will definately be difficult. I have moments where I am REALLY missing my Max and when I look for christmas gifts I see all kinds of awesome things I should be getting for me sweet baby. Instead, I am making him a wreath for his grave.

Anyways, ths giveaways will start the day after Thanksgiving. I will be hosting a day, but I am not going to disclose which one! :-) You will just have to check back!
Thinking of everyone during this holiday season! Check back on Friday for more information!!

Pregnancy and Infant Loss

2009-10-15T12:32:00.000-07:00

PLease light a candle tonight in memory of Maxton and his many angel friends as today is pregnancy and infant loss day! Time is 7pm. Leave your candle burning for an hour. This will creat a wave of candles as one time zone blows theirs out, another will light thiers.

Thanks for participating!

Just an update..

2009-10-02T13:32:00.000-07:00

I just wanted to update you all- I have been trying to get pregnant for several months... since probably May. I have also not had a cycle since Maxton was born, so I have taken COUNTLESS pregnancy tests.. all negative. I had a dream/feeling... something.. in June that told me I would get pregnant in September... well, I thought I would get pregnant in September. I was wrong... I did,however, FINALLY start my cycle again!!! :-) Sept. 30th, no less. Thanks God.

Just wanted to update you all since I know many of you know we are "trying" and now hopefully, my cycle will regulate ( I had NEVER missed except one month before I was pregnant) and we can really start trying..

Stay tuned!

Also- happy 7 month birthday to my beautiful son and to his best friend in heaven Kaden- happy 6 month birthday! I know our sons are best friends Kristi! I won't be able to post... nor do I really want to... tomorrow because I am moving out of my parents house and in to our new house- which is conveniently in their back yard! ha! :-)

Happy 6 month birthday Max!

2009-09-03T10:00:00.001-07:00

My dear sweet Maxton,
Six months ago Mommy was anxiously awaiting your arrival. I was laying in the hospital bed completely terrified and excited at the same time. I knew that your battle against CDH would be very difficult, but you were my rockstar and I knew that you would be able to do it. I remember getting an epidural and being completely terrified that childbirth would hurt.( Mommy got lucky because she didn’t feel a thing. Grandma had to tell me that you had been born!) I remember being upset because my labor wasn’t progressing and being afraid of a c section.I remember being upset that you might be born on 3/4/09 instead of 3/3/09. (silly, I know!) I remember that when the nurse came to check so that they could put in an internal monitor, I was already 10cm dialted! I remember having to wear oxygen and hating it because it was in my way! I remember laying there still waiting to push because we were waiting for the doctors from the children’s hospital. Annie later told me that she heard my doctors announce “delivery in 2” and then a large swarm of doctors came running in. I was terrified at the last moments before you were born because the swoosh, swoosh of your heart monitor wasn’t swooshing near as loud. I remember Grandma telling me you were born and looking up to see you. You were so purple! I had to ask if you were alive because I honestly thought we had already lost you. I remember looking over my knees and watching them clean you. I remember daddy getting up from his seat (he was waiting to watch you be born, but got pretty pale… yeah, daddy almost fainted, but don’t tell him I told you!) and looking at you. He had this sparkle in his eye- something I hadn’t seen before. I remember he and Grandma going over to take pictures of you while the doctors worked on you to get your breathing tube in. I remember daddy coming back and saying you were the absolute most beautiful thing he had ever seen. I remember watching them wheel you away. I remember being terrified that I might not see you alive again. I remember everything that night so vividly. Maxi, you changed my world and I am forever grateful for that one night, the night I turned into your mommy.
I remember the nurse from the NICU coming back to clean up your area while I waited to deliver the placenta (it took about an hour!). I remember that she told me you were a big boy- 8 pounds, 11 ounces! I remember that she said that you were stabilized enough to move you to the children’s hospital instead of the transition nursery and how this was a good thing! I remember going to my room and waiting to hear about you. I remember calling the children’s hospital and trying to get an update before I went to bed, but they didn’t know yet (or couldn’t put me through to someone who did). I fell asleep waiting to hear about you, and when the doctors called at 4am I was terrified because they had told me they would call in 2 hours, so they were 2 hours late! I remember the doctor telling me you were great! I was so relieved, but cautious because I had read many stories about CDH babies. Mommy never let her guard down. She was so worried about losing you. I remember Grandma wheeling me over to look at you- you were sooo beautiful! You looked like the perfect mix between mommy and daddy. You wiggled you toes when I touched them. You were so precious and I immediately loved everything about you. I just knew you were going to make it.
I remember on Day 3, when Mommy was getting ready to be discharged, getting a call saying they may have to put you on ECMO. I was SO upset and scared. I remember signing the ECMO papers and the doctors telling us that it would take about an hour. Twenty minutes later they came to get us- I was TERRIFIED! I was so afraid you were gone. They told us that they were able to stabilize you, but didn’t really expect you to make it- that the next 24 hours, if you had an “episode” there was nothing they could do. That you didn’t qualify for ECMO because of your brain bleed. I remember the look on daddy’s face. I will never forget it. But you proved those doctors wrong! You lived for many days, when they had doubted you would have them. I knew you were my hero. You are and always will be! I will be forever grateful for those days you proved those doctors wrong. In the end when God called you home, mommy didn’t want to let go! Mommy had so many dreams for you, but God had bigger plans. I still don’t know why you can’t be here for your 6 month birthday. Why we can’t be outside playing instead of me standing outside alone at your grave, but I do know that I love you. I will always love you. People will know you. People will love you. You will forever be a part of me and daddy and we will always celebrate your amazing life! Miss you sweetie. I would give anything to kiss your sweet baby face right now and have you giggle and pull on my hair. Happy 6 month birthday!!!! Know that mommy has so many memories of you that she will always cherish on your special days!

Love Always,
Mommy

Babies in the Sky

2009-08-31T17:52:00.000-07:00

I have been working on a new website:

www.skybabies.blogspot.com

This website is for anyone with an angel. Much like, Carly at www.namesinthesand.blogspot.com, I have this dream where Max is playing in the clouds. I dream that one day the clouds will spell out his name to me. As of yet, this has not happened. I decided that I wanted a picture of Max's name in the sky. Then, I wrote other babies names in the sky- some CDH, some not. I would love to honor your little angel. Please check the site and see if your child's name is on there. I still have these names to do:

Grayton
Ireland
MJ
Caleb
Sophia and Ellie

If you are not on the site and not listed here, please email me or leave a comment and I would be more than happy to make you one.

Maxton's Tombstone

2009-08-31T16:39:00.000-07:00

I just wanted to post a picture of Max's beautiful tombstone. I LOVE it!!!! :-)

Change CDH

2009-08-26T18:21:00.000-07:00

Change CDH is a fundraiser that I am doing to benefit Parker Reese Foundation. PRF is a non profit organization based out of North Carolina that provides a home to CDH families delivering at Duke and UNC. they also provided us with tons of support during Max's life and after his death. They sent a beautiful arrangement to his funeral that made me cry when I received it. I am so proud to be a part of this foundation.

Change CDH involves collecting your loose change to help PRF! Simply put, I would like everyone to collect their change until October 31st (or you can keep it going forever!) and take the change to the bank and then write PRF a check for that amount. Pretty simple. If you would like to get others involved you can put a jar on your desk at work or anywhere for that matter. You may think that change doesn't matter, but my family has collected over $100 in the past couple of months! $16 sponsors one family per night, so change can definately make a difference!

Thanks to those who are willing to participate. I plan to do several fundraisers over the next few months (years, etc) so I understand not everyone can participate, but I would love to know who is participating! :-) Please help us CHANGE CDH!!!!

Prayers please!

2009-08-25T13:01:00.000-07:00

Just a quick note to ask for you to please, please pray for Ireland and Max (Maximus). They are both on ECMO now and need prayers!!! Links to their blogs are on the right.

Update

2009-08-18T14:40:00.000-07:00

Just wanted to post an update. David and I are now living in Kentucky- with my parents. Please pray for us. :-) No, really, it is going fairly well. David is starting to get a bit stressed out because he has yet to find a job. Please pray that he finds something soon. I am currently teaching kindergarten as a resource teacher. Basically means I pull kids who are having trouble and work with them in small groups. Going good so far!

In other news, I went to my obgyn back in July due to not having a cycle since Max has been born. She gave me some progesterone which started the cycle and did some blood work. She is thinking I may have poly cystic ovary syndrome. This is not good news when it comes to try to conceive. I will likely see a specialist in October about this (as I won't have health insurance until then!) Please pray that maybe this month I will have a cycle! I never had problems before Maxton and was always regular, so I am hoping the horomone that way too high (DHEA-S) is coming down and that my ovulation will return to normal. Sorry if that was TMI. :-)

Also- please pray for Ireland as she is making her entrance today!!!!

I have also gotten Maxton's gravestone! It is beautiful! It has a big butterfly at the bottom and the four smaller butterflies. The big butterfly represents my Maxton and the smaller ones represent his angel friends. I will post pictures as soon as I can! I cried when I saw it. I miss my sweet baby soooo much.

2 New Angels

2009-08-09T08:10:00.000-07:00

I wrote on my blog a few posts ago about a sweet family- the Snyder's, whose son was battling cancer. It is with much sadness that I reports that Sweet Benjamen passed away yesterday. His fight was amazing and my heart goes out to his family. Please visit Benjamen's story and send his family some love.

Also, as many of you know who follow CDH blogs, sweet baby Jackson also passed away today. Please pray for Candice and Rob and their new family as the begin their journey of grief. CDH is simply NOT FAIR!!!!

Many prayers for all those families out there facing hardship. Prayers for Max's (another CDH baby named Max!)family in Florida as he is set to be born on Monday and for Ireland's family who is about to be born as well!

What Makes You Happy?

2009-08-01T14:16:00.000-07:00

I've been tagged by Tina. Here are the rules to this tag:

1. Mention and link back to the person that tagged you.

2. List 6 little things that make you happy.

3. Tag 6 other bloggers and let them know "They're it".

Here are some of the things that make me truly happy:

1. Thinking of my sweet Maxton. :-) Sometimes it does make me sad, but truly happy at the same time. When I think of everything I have gained because of him my heart smiles... which bring me to number 2.

2. All of my new friends. I am truly so grateful for everyone who has supported me recently. It is so awesome to have such a network of friends. Even though I have not met many of you, you are truly such a part of my life and I think of your babies/families often.

3. God! :-) Nuff said.

4. My family. My husband is awesome. My mom and dad are awesome! David's parents are awesome. I feel super blessed to have such an awesome family.

5. My new job in Ky. I am going to be teaching special ed. I will get to work with kids... what could be more happy than that!?

6. Painting and Singing. When I down, one of these things usually helps me.

What makes YOU happy?
Tag! You're it:

1. Kristi

2. Lisa

3. Marion

4. Bree

5. Jess

6. Patty

:-) Share with me what makes you guys happy, please!!!

Some thoughts

2009-07-28T17:41:00.001-07:00

I have been so stressed lately about moving to Kentucky. Not because I don't want to, but because I was supposed to be there with Maxton. But he is not here. It simply stinks- big time. I was up on my soap box tonight wondering why bad things happen to good people. I have a friend back home in KY who is watching her son slowly go to heaven as we speak. He has cancer. His parents are WONDERFUL people who adopted him and loved him much more than many parents love their children. He is their son and soon he will be in heaven with my Max. Jennifer- if you are reading this, I so admire your family. You were such a source of strength for me during my CDH journey, and I don't know if you ever even knew it.

Anyways, back to what I am saying- why do bad things happen to good people? I think it is because if we were bad people, would we even care. Would we feel half the emotions that we have all felt? I hope this doesn't come across as me saying I am better than others, and I hope that it makes sense. But, I guess I am trying to say that we care so much because we are good people. God chooses us because he knows that we will put all we have into it- all of our feelings, all of our love. I am sure that he has many other reasons. But tonight, for me, something about that thought clicked. God knew that I would love Max more than any one else ever could... and that is "why me?" He knew that I was perfect for Max and he was perfect for me. And that is all I need to know about it..

On another note- please visit :http://www.caringbridge.org/visit/benjamensaigesnyder

Please pray for Benjamen and read some of his story if you have time.

Autopsy

2009-07-21T17:24:00.000-07:00

Today we went in for Maxton's autopsy. It has been 4 months today since my angel grew his wings, so it was an especially hard day. We learned that I was wrong (Thank GOD!) and that there was no underlying blood clotting issue. Unfortunately, during Maxton's repair surgery his liver was lacerated, twice. It is believed that due to this laceration Maxton's crit levels plummetted early on the 21st. I had posted that they were hoping that the bleeding would eventually swell his abdomen enough to clot, which it likely did. Unfortunately, this was a double edged sword, as it caused so much pressure to be put on his bowel that it ended up killing his bowel. Because his bowel had died, his other organs and blood and things went into overdrive and tried to fix the problem, but ultimately caused all of his systems to fail. My poor baby bled... from basically every organ he could possibly bleed from. It was very hard to hear this. I saw the word "hemorrhage" too many times in that autopsy report. We know that his doctors did the best they could, but it is hard to not second guess our decision to have him here. It's hard to not imagine- what if? The doctors did tell us that at one time (I am assuming the Friday after he is born when we almost lost him) it was thought that he was "unrepairable". I smiled when he said this. He kind of stared at me, but as a mother i was SOOO proud. My baby proved them wrong- at least to me he did. They thought he would never make it to the repair, yet he did. I laughed and said he was one tough little guy and the doctors certainly agreed.

My mind is in overdrive tonight, so I don't really feel like writing much more, but did want to let everyone know just what happened... no matter how sad/unfortunate it was. Thanks for thinking of us.

On another note- I have a job in Ky as an elementary special ed teacher. :-)

Letters

2009-07-15T20:22:00.000-07:00

I mailed my letters today. I mailed 119- for some reason there were 19 extra envelopes in my package. My mom also mailed 116 (she had 16 extras!). :-) Thanks to all who gave us stamps so we could mail letters from you!!!

We are going in next Tuesday to hear about Maxton's autopsy. I know this will be a difficult day. Coincidentally it will also be the 4 month angelversary of our little guy. :-( We will be sure to update with what they tell us. I am expecting to hear of an underlying blood disorder, so we shall see.

Big News!!

2009-07-11T14:38:00.000-07:00

I have some big news. PLease pray for us as things here are kind hectic.

David and I are moving to Kentucky. We both quit our jobs this week. My last day is on July 29th, his on July 24th. Please pray that we quickly find jobs there. It is VERY unlike me to quit my job without having one, but I have decided to have faith that I will find something! We will be living with my parents until our house sells, so pray for that too... :-) Kinda scary!!

We are very excited about this move, but understandably scared. We had been trying to move last summer when we found out we were pregnant. We ended up staying here (thank goodness!) and now are ready to go. Our life has been so uncertain lately and it felt good to finally decide where we would be and what direction we are taking as a couple. It will be nice to be closer to my family and closer to Max's grave. It will be sad to leave David's parents though.

This past week I was able to meet with Kristi and Craig, Kaden's parents. It was wonderful- like visiting with old friends. Thanks Kristi and Craig for letting me invade your vacation. :-) I think it really helped me to visit with you all.

The hospital called yesterday about Max's autopsy (I think). They left a message and it was too late to call back when I got home, but I will call them on Monday. I know this will be a difficult thing to do, but we are ready to hear the results. They were specifically looking at his brain bleed and other bleeding issues, as well as possible organ damage during his repair surgery.

Remember, there are only a few days left if you are planning to mail blue envelopes for CDH to Ellen show. If you are not able to mail envelopes, please email Oprah on WEDNESDAY JULY 15TH to suggest CDH as a show topic. We are hoping to raise awareness about this awful defect! Thanks guys.

Pregnant/ 4 Months

2009-07-03T07:00:00.000-07:00

Let me start this off by saying.. no, I am not pregnant. A year ago today, I found out that David and I would become parents. Little did I know, just how much our lives would change. I had taken off of work for some prebirthday pampering (my birthday is on the 6th) and drove David to work and went to get my hair colored. It had been years since I had gotten my hair colored, but I decided to just do it. I came home, made my hair look all cute, and then went back to work to get get David. We went to Fazolli's for dinner. We were planning what we would do for the weekend as my parents were coming down the next day and would stay through my birthday. I was super excited. I am not a big drinker, but was hoping to get a nice big margarita. :-) Anyways, I knew I should have started my period about 2 days before, but sometimes I am a couple of days late. I talked with David and we decided to stop and get a pregnancy test on the way home just to be safe. We weren't really trying to get pregnant, but we weren't not trying either... Anyways, came home and took the test. It said "pregnant". I was thinking wiat... what!? I told David. He said- "no way, you read it wrong." I said- "It's the one with the words". Freaked out a little.. got super excited, then tried to figure out if we should wait to tell our parents until we were all together, or just tell them. Of course, I called my mom... she wasn't home. Called my grandmas looking for my mom. She had just left there. Grandma could tell something was up, but I didn't tell her. Finally got in touch with mom and told her. :-) Then we called David's parents and told them too. Then I took another test just to make sure. :-) Went out the next day and bought another test to take it also. All said pregnant... very quickly I might add.

In hindsight maybe the universe was trying to tell me something as my mom had appendicitis that weekend. They came here, even though they shouldn't have. She thought she had her appendix out when they removed her gall bladder. She was here Friday through Sunday in pain, but still went out to celebrate with us. Her appendix burst sometime on Sat. (most likely) She went to the hospital where she works as an RN on Monday and looked up her records. Confirmed she had an appendix still and then informed them that it burst on Sat. Praise God that he let her live through all of that.

My pregnancy was not an easy one, to say the least. Every appt. except for one I was told "bad news". It started in July- Sept (when we had a CVS) then the one normal appt (liekly because it was the only one that didn't contain an ultrasound), then the CDH diagnosis in Oct.

Anyways, sorry for the rambling. The last year has been crazy. It has been so profound in reshaping my life. Today my sweet baby would be four months old.. or a year old, depending on how you look at it. I miss him so incredibly much. I see 4 month old and wonder if their parents realize all they have been given. I wonder what my sweet baby would be doing.

The question people keep wondering is if we are trying again. I would like to say that we are... but I have yet to have a cycle. It has been 17 weeks and nothing. I have called my doctor (about a month ago) and was told to call back in August. I talked them into letting me call back in 4 weeks instead. So, this week I will be calling to schedule an appt. I feel like I need to be pregnant again in the near future. I feel like each day that passes without a cycle I start to get more down, wondering what is wrong. I am so worried that I will never be able to have another baby. It terrifies me. I have taken several pregnancy tests (like at least 10) because I am always wondering... what if? The nurse at my OBGYN said "well you've been under a lot of stress so that is likely why you havent had a cycle" and I said " i think not haveing a cycle is causing me stress". Hopefully, they will agree to see me this time.

To end this post on a positive note, I am soooo excited to be meeting Kristi and Craig, angel Kaden's parents, this week- on Monday! I think it will be great to meet a family that I feel so close to throughout this. Kaden was born 3 months ago today, one month after Max. He also passed away one day short of a month after Max. Whenever I think of Max on his special days I am always thinking of Kaden too. I can't wait to meet his awesome parents. Happy 3 month birthday Kaden!!! I know that you and Maxton are keeping each other company in heaven and know that your mommies wish we were able to be spending time with you here instead!!

Under the Tree

2009-06-27T09:21:00.000-07:00

Carly, the mother that photographs the beautiful sunset/daytime pictures of babies names in the sand, has a project 'Under the Tree' for grieving mothers. Read more about it here.

Here are June's questions with my answers.

Hair Color: Brown.

Eye color: Hazel/Greenish

Profession: Adult Mental Health Case Manager

Relationship status: Married

My Favorites
Favorite color: It was green.. but I now love turquoise as it makes me think of my Maxton.

Favorite movie: I have way too many... maybe A Walk to Remember

Favorite animal: hmm... butterflies. :-) I have become obsessed with blue butterflies. Although, maybe my favorite is my doggie, Charley Dog!

Favorite store: Target

Favorite childhood memory: spending time with my Maw Maw eating frozen hamburgers with extra salt and tons of ketchup.. :-)

Favorite hobby: singing, painting, crafting, writing...

Favorite song/singer: Right now- One Moment More or Praise You in the storm.

Favorite book/author: this will sound funny since they are young adult books, but I love Lurlene McDaniel books.. I also love Jodi Picoult

Favorite school subject: hmm... choir or psychology

Favorite vacation destination: Id like to go to the beach soon

Favorite food: Cheeseburgers or mexican food

Favorite restaurant: Maggiano's... they have the best pasta.

This or That
Coke or pepsi : I like Coke Products.. I have a nice collection of coca-cola things.
Beer or wine: neither... i like margaritas though.
Coffee or tea: tea
Apple Juice or O.J.: Apple Juice..
Summer or Winter: um... Fall? :-)
Cats or dogs: Dogs
Salty or sweet: Sweet! or a nice combination of both..
Plane or boat: hm... boat
Morning or night: night
Money or love: Love.. all you need is love.
Breakfast or dinner: I like having breakfast for dinner!
Forgiveness or revenge: Forgiveness... most of the time...
House or apartment: We live in a townhouse.. I would like to have a house with a big back yard.
Like to cook: sometime..

Have You Ever
Got a speeding ticket: Yes
Wished you were someone else: Sometimes I think about it, but if I really had a choise I would probably stay right who I am.
Cried during a movie: Of course... moving, advertisement, song...

Describe yourself in one word: Determined
Biggest fear: never getting to experience motherhood to a child who stays with me
Biggest mistake: I'm sure I've made several
Your proudest accomplishment: my Maxton, of course..
Dream job: I would love to work/play with sick children... that seriously is my dream job.. always has been. ( i don't know any other 12 year old who would say they want to work with kids with cancer)
Special talents: I can turn my right foot backwards and still walk... yeah, I am weird.
Where would you rather be at the moment: in Kentucky with my family
Famous person you want to meet: I dunno...
Song to be played at your funeral: I'll let my family pick... though I love Amazing Grace...

Father's Day

2009-06-21T08:58:00.001-07:00

I wrote this poem for David for Father's Day. I had planned to put it in a photo video, but instead made a photo book with it! I gave it to him last night because he is working today and I didn't want him to be too sad.

Dear Dad
Don't be sad
I know you had your hopes for me
To sit in your lap while you watch TV
To play tennis like Rafa
Or wrestle like Chris Benoit
To learn to fight in the UFC
To grow up to be the best I could be
But God had other dreams in store
You needed me here but he needed me more
Don't worry Dad, I feel no pain
And because of me, look at what you've gained
A wife who sees a father's love
And an angel watching from above
It's okay for you to miss me Dad
But please, oh please, don't be sad
I'll be in heaven waiting for you
Until you finish what God sent you to do
And when that day comes I'll smile bright
And be in your arms, where I fit just right.
Until then, Dad, I'm always here
To listen when you need an ear
To watch over you and send you my love
From heaven, up here above.
I love you forever, Dad, that's a fact
From you sweet baby boy, Max.

Coincidentally, today is also 3 months since Maxton has been gone. I cannot believe it... 3 months. I miss my little man more than I can even describe, but I am doing pretty well coping with my feelings. I have been painting and sending paintings to other angel families. It has definately helped me to cope. If you are reading this and would like one or want to refer someone, please click on the picture at the top right. It will take to you that blog. This weekend is especially hard for me- not only is it father's day and Max's 3 month angel day, but Max was also conceived on June 22nd last year. :-( This day last year, I had no idea my life was about to change. We weren't trying to have a baby, but it was the one time I had thought.. "we might get pregnant" and we did. Now, I cannot stop thinking about getting pregnant again. To be honest, I am pretty much obsessed with it. I know that having another baby will not replace Max, but it will give me something to look forward to. I am so ready to be a mommy to a child who gets to live on earth with me. I am ready to watch David be the awesome dad that he is. I know it will happen when it is supposed to, but I can't help but want it to happen now. I know that Max is up there trying to find the perfect little soul to send back down here to us.

Happy Father's Day to all the daddy's out there!!!

Maxton, sweetie- we miss you so much. Not a day goes by where we don't think of you and wish that you could be here sharing your life with us. I know that you are in heaven and I cannot imagine the things you are seeing there. I know that one day we will be together and you can show me all the fun things you have done and we can do them together. Please continue to watch out for us. We love you little angel and miss you so much!!!

Letters for CDH

2009-06-19T15:10:00.000-07:00

Alright, so I said I was going to post this the other day... but didn't. :-) We are mailing letters to the Ellen show on July 15th! I am hoping I get close to 300 letters mailed from the Maxton team! :-) I have some blue envelopes if anyone in Nashville reading this needs some. I already have finished about 100 here, and my mom has some in KY. Please check out this blog for helpful hints. Since several of you have asked- this is what I am putting on my envelope

Every 6 minutes a baby with CDH is born. (sometimes I spelling out CDH,sometimes not)

HALF WILL DIE!!!

My son did.

For more information, please visit:

www.babymaxton310.blogspot.com
or
www.lettersforcdh.blogspot.com

I am writing all of this on the back of the envelope. If you are mailing some and find this too time consumeing, try to at least put a one liner on the envelope.

I am also writing a short, one page letter to include in my envelopes with maybe a few pictures of Maxton. I plan to finish it this weekend. If you are mailing envelopes and would like to include my letter, let me know, but mailing empty ones is fine too! We just want to flood the mail with blue envelopes!!! :-)

For those who want to help, but don't have/can't find blue envelopes or don't have time to write the out, you can help by donating some stamps if you can afford to.* I know I have asked alot of everyone lately, and if you can't help with this one, I understand! I love you guys and thank you so much for you support. I plan to do numerous things in the near future to help raise CDH awareness and funds, and I understand that peopel can't participate in every one of the events

Thanks guys!

2009-06-17T12:50:00.000-07:00

This was a picture done by Carly, a mother of an angel baby at Names in the Sand. (www.namesinthesand.blogspot.com) Thank Carly!!! This turned out awesome.

PRAYERS!!

2009-06-17T11:09:00.000-07:00

Kamryn and Brooke (twins) have arrived!!! Please pray for them. Kamryn has CDH and is relatively stable now in the NICU. Brooke doesnt have CDH but has some pneumonia so she is also in the NICU! Please pray for them. Their parents are wonderful people and they have a super big sister named Hollie who I am sure will need your prayers too!!!

Also- Please pray for Baby James. He is fighting over in the UK. He is doing well and is a CDH superstar!!!!! His parents are also wonderful. :-)

Please keep the other CDH babies- Avery, Carter A., Jaime, Gia, Ruby and any one else that is in the hospital- in your prayers.

I plan to post more tonight about letter for CDH and also about a picture I had done for Max. Check back later!!
Ash

My 100th post

2009-06-11T20:08:00.001-07:00

I borrowed this from another site. I had so hoped to be blogging about all the cute things Max was doing... or perhaps how we were bringing him home... It's still all so surreal.

What Makes A Mother

I thought of you all, I closed my eyes
and prayed to God today.
I asked what makes a Mother
and I know I heard him say,

"A Mother has a baby.
This we know is true."
But God can you be a Mother
when your baby's not with you?

"Yes you can!" He replied
with confidence in His voice,
"I give many women babies,
when they leave is not their choice. "

"Some I send for a lifetime
and others for a day.
And some I send to feel your womb
but there's no need to stay."

"I just don't understand this God,
I want my baby here.
"He took a deep breath and cleared His throat
and then I saw a tear.

"I wish I could show you
what your child is doing today.
If you could see your child smile
with other children and say.."

"We go to earth to learn our lessons
of love and life and fear.
My mommy loved me oh so much
I got to come straight here."

"I feel so lucky to have a Mom
who has so much love for me
I learned my lesson very quick
My Mommy set me free."

"I miss My Mommy oh so much
but I visit her each day.
When she goes to sleep
on her pillow's where I lay."

"I stroke her hair and kiss her cheek
and whisper in her ear,
Mommy don't be sad today
I'm your baby and I'm here."

"So you see my dear sweet one,
your children are OK.
Your babies are here in my home
and this is where they'll stay."

"They'll wait for you with me
until your lesson is through.
And on the day that you come home
they'll be at the gates for you."

"So now you see what makes a Mother.
It's the feeling in your heart.
It's the love you had so much of
right from the very start."

"Though some on earth may not realize
that you are a Mother until there time is done.
They'll be up here with me one day
and know you're the best one."

Hanging in there

2009-06-07T19:53:00.000-07:00

This weekend was nice. I went to KY to a wedding. The ceremony was beautiful! I drove up by myself because David had to work. I went by the grave and talked to Maxton for a bit. This was my first chance to go by myself. There was cute teddy bear made from flowers that my grandma had brought for memorial day. It was very cute. I put his blue butterfly stake that I bought down also. I gotta say that it will be nice if we can get back to KY someday so I can be near him and go see the grave whenever I want.

I held my first little baby since Max this weekend. My friend RheaAnn has a 6 weeks old, Whitley, that I held for about an hour or so at the wedding. I thought I wouldn't be able to hold her when someone asked me to so they could get food, but I did just fine. In fact, it felt good. ( I was worried I might completely lose it!). I think it helped that little Whitley is a girl. But, I am proud of myself and thankful that God was able to help me get through that. Of course, right before that we were sitting behind a baby boy who was born on March 11th ( I hear his grandma talking about it). We ended up moving seats and I gotta say I was glad to.

I am still trying to adjust to my new normal. I miss Max everyday. Somedays I cry when I think about him and all the things I am missing, and somedays I smile because of all the things he gave me/taught me.

Please pray for little James' family as he is set to arrive tomorrow I believe. They are in England and his parents are awesome! I know James can fight CDH!

Please also pray for Stephanie as she goes to the hospital this week in preparation for birth of the twins, Kamryn (CDH) and Brooke. Stephanie is hoping they wait a few weeks before coming but will be at the hospital just in case.

Thanks for checkin in on us. We are doing our best with what we have been given.

Keychain

2009-05-31T15:47:00.000-07:00

Thanks to Ashley for this tutorial on how to make a key chain using an awareness bracelet. David doesn't wear his Max bracelet all the time because 1.) he forgets to 2.) he isn't a big fan of bracelets... and probably other reasons too. :-) Anyways, Ashley made a keychain out of one that I sent her. I know alot of you probably have bracelets you are not wearing and thought might be interested in doing the same. I made some earlier today and it was SUPER easy. Check out Ashley's blog to read more about it! She also has some super cute crafts on there, so check it out!

Featured

2009-05-28T19:17:00.000-07:00

Our family's story was featured in my hometown newspaper, Union County Advocate this week. The piece is really nice and well done. My mom said several people have asked about mailing blue envelopes!! :-) Hopefully we will be flooding Ellen's mail with blue envelopes. I think I have mentioned it on here before, but if not, many CDH families are going to be mailing blue envelopes to the Ellen show and emailing Oprah on JULY 15TH!!! Please participate in any way you can. If you can't mail envelopes or are afraid you will forget, if you could just donate a stamp or two I will mail envelopes for you. Click on the blue envelope to the right to read more about this project.

David and I are doing well. In fact, today is our four year anniversary. We went to Tunica from Monday-Wednesday with our parents. It was a very nice vacation. David won a little money and we basically ended up with a free vacation, free vet appt. for Charley and also a little extra for bills. :-) We had a nice trip and it was our anniversary gift to each other. Tonight we have just hung out. Thanks for checkin in on us.

Sponsor a Night

2009-05-28T07:51:00.000-07:00

I am taking orders for shirts for Parker Reese Foundation throught tomorrow at 3pm. If you are interested in purchasing a t-shirt, the cost is $16 a night. This money sponsors a CDH family for one night stay at Parker's House, which is a home that allows families of a CDH child to stay FOR FREE for hospital stays, checkups, pretty much anytime they need a home away from home during the CDH journey. It is located near Duke and UNC. The stylish shirt is available in numerous colors and has some great CDH info on the back. Please let me know if you are interested an I can mail you an order form. I am sending mine off tomorrow, but they are taking orders through Sunday!! I'm torn between pink and purple, so I think I will get both. Please support this awesome cause!! Several families I have met during this time stayed at Parker's House and had we not been fortunate enough to live in a city with a major hospital, we might have stayed there as well! Email me at ashleynaye@aol.com for more info.

2 months

2009-05-21T15:22:00.001-07:00

I cannot believe that it has been 2 months since I lost my beautiful son. So much has changed in those 2 months, but not in the way I thought they would when I first found out I was expecting him. I figured by now I would be tired of changing diapers, but I only changed 1. I figured I would be tired of hearing him cry, but I only heard him cry once exactly 2 months ago. I figured I would be tired of picking him up everytime he cried, but I only held him once. Mothers, please cherish every moment you have with your little ones. I know that when I am blessed to have another child, I will certainly never take a moment for granted.. even the "not so fun" ones.

I am doing well. I have good days and bad days... days where every time I think of Maxton I get sad because I want him back here... and then days where everytime I think of Maxton I am happy because I had him in the first place and because in 18 days my life changed forever. It really is amazing how quickly things can change in your life. I am in a big period of change and trying to adjust to my new "normal". I wish that Maxton was here and I was adjusting to having a baby at home, but instead I am adjusting to the fact that there will always be an empty place in my heart, a place longing for the beautiful child that I was given, whom I will never see grow up. And you know what... that is okay. It is okay for me to continue living without him... it is okay for me to miss him everyday, because it will be something I will do forever. But it also okay to think of the future and the good things that it holds.. some of them because of Maxton and because of the change he has instilled in me. I am going to be working with The Parker Reese Foundation and I couldn't be happier about it. I am working on planning a few fundraisers for them right now... most will take place this winter and next Spring. I am excited about honoring my Maxton that way and I know he is excited about it to. I am also excited about Maxton's Memorable Moments... I have been working on a few projects for it. If you have a referral, please visit the page and email me the info. David and I have some other exciting things in the works as well. So, simply put, we are living.. we are doing the best we can, with the circumstances we are given.

To my Maxton~
I cannot believe it will have been 2 months tonight since I held you in my arms. I miss you and my arms still long to hold you. I know that my life is better, because of you. I almost feel guilty that God felt that I needed to be given you to teach me so much... like it was selfish of me in some way to need you as a gift. I know that you are watching over me and I feel your presence every day. I cannot imagine what heaven is like, but I know someday I will be there with you. I have been reading a book called 90 minutes in heaven and if it's description of heaven is accurate than I cannot wait to get there and hold you and sing praises to God with you! I truly feel blessed to have been your mother and to be able to call you mine. I love you sweetie and miss you everyday.
Mommy

Pray for Colin

2009-05-18T20:33:00.001-07:00

I just wanted to request prayers for Colin. He is at UCSF. He was there when Kaden was there and you may have read a little about him on their blog. His mother, Hayley, is on breath of hope and I read tonight that Colin is not doing well. He reherniated last week and has surgery to fix it. (he had never made it home before reherniating, I believe he is about 7 weeks old). Anyway, tonight he has a fever and they cannot figure out exactly what is causing it. They have sent out for blood cultures and are thinking infection but aren't sure. His crit levels are off too. Anyways, just wanted to request a few extra prayers for him. I don't believe they have a blog.

Thanks!

2009-05-15T15:05:00.001-07:00

I want to thank everyone for getting Maxton's bracelets. If you ordered some from me I am putting them in the mail tomorrow (if I make it to the post office in time). I think I have emailed most of you about them. Also, if you need silicone bracelets anytime for anything, I ordered mine from www.ybuw.com. They came from China (if you ordered one please don't chew on it ;-) ) but they were the cheapest I could find. Almost half as cheap as most of the other companies. I also emailed to see if I could put a butterfly on the bracelet (it wasn't an option at the time) and they went and added it to options. they were awesome and I am very pleased. Also, if you plan to get a Parker Reese T-Shirt, let me know. The deadline to order is May 31st!

This week has been pretty good for me except that it seems like everyone is getting pregnant. Everyday this week I found out someone was expecting except for today (and yesterdays was just on a TV show) but it seems like babies are popping up everywhere!!!! I just want my Maxton back. It's so hard to believe he has come and gone. It's almost surreal if you have never experienced it. Those of you who have, I am sorry, but I know that you all understand. I hope everyone has a good weekend! Thanks for checkin in on us.

Mother's Day

2009-05-10T20:58:00.000-07:00

Happy Mother's Day to all the mother's out there, especially those who have lost their children. This weekend was very difficult for me, more so than I expected it to be. I decided to go to Kentucky to be with my mommy and my baby. This was the first time we had been back to Maxton's grave since the week he was buried. The grass has grown out and his things are starting to get worn. It has been 7 weeks and 1 day since my baby has been gone. It is simply not fair that he isn't here to spend the day with me. I mourn for all the things that could have been, and for the reality that is. As I have said numerous times, I know Maxton is safe and not in pain and breathing easily, but I simply miss him. He will always be my son and I will forever be a mommy. It is sad to me that I don't feel like a mother. I never knew the true joy of motherhood. My brief time as a mother was spend with the consuming fear that my child would be taken from me and my only real act as a mother was to tell them to let him go and not put him through more pain. As I listened to speeches from mothers talking about what motherhood is like, I thought " I never did any of that". I think reality of all the things I am missing out on is truly finally starting to sink in. This time next year, I will still likely only have Maxton. When will I get to enjoy motherhood. I miss him so much and most days I am "okay". Most likely, when you are reading this, I am "okay". "Okay" is relatively speaking. I will never be who I used to be and those expecting that person will have to get over it. But, I think I will be "okay". Today was just especially difficult and unless you have been there or are there, then you can't understand. I hope that you never will understand. And, sorry, but if you aren't there or have never been there, then I probably won't want to talk about it with you. I know that you all love me and care, but it is just easier to talk to someone who truly does understand. If I need you, I will call you. :-)

Projects Galore!

2009-05-07T16:11:00.001-07:00

Finally, my bracelets have come in!!! I think I said I would be selling them for $5 dollars before, but I have since decided on $3!!! The money will be used to fund Maxton's Memorable Moments. I have redisgned what will be sent, so click on the blue butterfly in the top right corner to check it out! Thanks.

I am also going to be working with Parker Reese Foundation. Parker would have been 3 years old today, so please keep her fantastic parents, Ashley and Jessica in your thoughts today. HAPPY BIRTHDAY PARKER!!! Currently, Parker Reese Foundation has a fundraising project going now as well. They are asking for $16 which will sponsor a night at their house for a CDH family. I know several families who have stayed at Parker's House. This home is near Duke and lets families of CDH babies stay there for free for initial care and all follow up appointments. The Foundation also does other wonderful things for CDH families and sent us a beautiful arrangement at Maxton's service. For your $16 donation, you will receive a stylish t-shirt to help make others aware of CDH and it's devastating effects on families. To order a shirt, please contact me!

The last project to mention is letters for CDH. We are all going to be mailing our blue envelopes on July 15th to Ellen Show. We will also be sending emails to Oprah. For more information on this, click on the blue envelope in the right corner of the page. :-) Thanks guys. I know I ask alot, but this can be your way to help out a very worthy cause.

2 months!

2009-05-03T11:26:00.001-07:00

It's so hard to believe that my little man would be two months old today! I miss him so much. I've grown up so much over the past 2 months. I wonder what Maxton would look like today. What color would his eyes be? How much hair would he have? Would he find mommy and daddy as funny as we think he would? Would he have cute little baby giggle? I am sure he would. I am sure that he is up in heaven entertaining everyone with his cute little antics and spitfire personality. It makes me want to have a "day pass" to heaven just to watch him and all his new friends play. 2 months old.... it really feels like yesterday that I was in labor with him. I was so excited to meet him, yet terrified that I would be here two months later with only memories. I never knew I could love this much. Being a mom is different then I thought. As mother's day approaches it seems surreal... I am a mother, yet never truly got to experience motherhood. I changed his diaper a couple of times... got to see him open his eyes only twice...really my only act of true motherhood was letting him go. I made the hardest choice any mother truly has to make. Actually I wasn't really given much of a choice, anyone could have seen it was time. I just miss him. Today is a bittersweet day. I am not sad, despite the general tone of this post. I am reflective. I am celebrating my son, my two month old son! No matter where he lives, he will always be mine. My baby, my sweet little man. Happy 2 month old birthday sweetie! Mommy loves you and misses you...

Maxton's Memorable Moments

2009-05-01T16:25:00.000-07:00

After a few weeks of planning and starting to get the project going, I have made Maxton's Memorable Moments it's very own blog. I am very excited about this project and it has been very therapeutic for me. I hope that the families that it can help will be touched by Max's story and also be able to remember their beautiful angel whenever they look at it. :-) I added a link on the right side of this page (see the pretty butterfly at the top) to the blog for MMM. Anyways, I just wanted to thank everyone for their support. I have received great feedback on this project and look forward to helping many families in the future. I also have received good feedback on the book and am working on trying to find a way to publish it. Not sure if it will happen anytime in the near future or not, but I am hoping so!

My CDH family

2009-05-01T08:41:00.000-07:00

Hey everyone. Things are going okay here. I have my good days and my bad days, but am managing. It is weird how life seems to go on even in the midst of such tragic events. I miss my baby everyday and think of him. I wish that he could be here with me. I wish I were still at the hospital seeing him and preparing to bring him home, but I still believe that all of this happened for a reason and am at peace with the fact that Maxton likely would not have had a very good quality of life, despite how awesome I know I would have tried to make it. :-) Anyways, this post is to give all my non CDH friends some people to add to their prayer lists- all of these blogs are on the side, I am just to lazy to link them here. :-)

In the hospital:
Ruby- on ECMO, needs many prayers that she will stabilize soon!
Carter A- was born earlier this week, having some big ups and downs. ECMO has been mentioned but not utilized as of last update.
Jaime- this little guy is a few weeks old and having his repair surgery TODAY! Please pray extra hard for Jaime, who also has hemophilia and possibly a skin disorder.
Sofie- Sweet Sofie had reherniated and has had another repair. Hopefully, this will stick, at it was a more invasive procedure than the rest. She is doing well in recovering. Sofie is 1 year old.
Jon- Jon was born a couple of weeks ago and is doing well. Has had his repair surgery and was able to be held by his parents recently!
Rory- Rory was born in Feb. at Vanderbilt. I met his family while there with Maxton. Rory is improving and will hopefully be making the journey home here soon! Pray that he continues to do well!!!
Jacob - Jacob is another baby I met while at Vanderbilt. He was born in Jan. and will also hopefully be making the journey home too! His family is awesome and I know they can't wait to have him with them.

Recently went home:
YAY!!! Kayla and Charlie were both discharged this week from the same hospital. :-) I know their parents are so happy to have them there and I am very happy for them.

Expecting:
Avery- due here in a couple of weeks. Those last few weeks were super hard for me, so please pray for her family!
Kamryn and Brooke- the twins are due here in June, though the may be early since they are twins! :-) Kamryn has CDH. Please pray for her awesome family.
Giavanna- also due in June!
James- also due in June in the UK!
Ireland- I think is due in August. Her family recently found out about the diagnosis and her mom seems like such a trooper. They have a hard road as well trying to learn all about CDH.

Thanks guys! There are alot of CDH babies due soon and alot still in the hospital. These families are all awesome and each has their unique struggles. It amazes me how little is truly known about CDH. Spread the word!!!

Children's Book

2009-04-25T10:21:00.000-07:00

So, it has been suggested by about 10-15 people that I need to write a book, more specifically a Children's book. I decided yesterday when my nurse at work said it, it was clearly God reminding me that this was something I needed to do. I saw down this morning and in about 20 minutes (no joke- god is so good) came up with this. Seeing as how Max is my only child, I am needing suggestions from those with children, if the content makes sense to a child or would be too scary. Let me know... and please don't plagerize my work or I will come after you. hehe. :-)

"Baby Maxton earns his Angel Wings"

The day baby Maxton was born, he knew he would have to fight.
Because some things inside of him were not working right.
But Maxton was a warrior, right from the start.
His mommy and daddy were so proud of how hard he fought.
He would fight and fight his illness with the help of his friends
Who were angels in heaven watching out for him
There were Ryann, (another angel- waiting permission), Addison, and many, many more
With their special help, Maxton tried to win his war
But his illness was too strong and tough for him to beat
And God decided it was time for he and his angel friends to meet.
Mommy and Daddy and many others cried
The day that sweet Maxton left their side
But they know that Maxton earned his angel wings
And now he soars above with the angels and sings
He's watching out for family, for friends, and for you
And making sure we're safe in all that we do
And if your dear sister, brother, or friend
Earns their angel wings too, and joins him
He and his angel friends will welcome them and play
And listen anytime you talk to them or pray
Remember they are all in heaven watching from above,
Laughing and playing, and sending down their love.

The Project- or two... :-)

2009-04-23T14:55:00.000-07:00

Alright, so I have been talking about wanting to do something for CDH families with angels. (and maybe just CDH families in general, but right now I only have enough money to focus on angels) Thanks to David's cousin Ashley for giving me this idea. She sent us a beautiful painting as a memorial for Maxton. Anyways, I wanted to do the same for some of my Angel friends. I have already sent out a few and have a few more ready to go out soon. (like when i get to the post office to send them and stop being lazy :-) ). So here is a picture of one of the ones I have done... Some are picture frames and some are on canvas. I forgot to take a picture of the canvas ones before sending them.. but you get the idea. :-)

I am planning to order turquoise bracelets with Max's name on them to raise CDH awareness and to sell for $5 to help fund this project. The more I sell, the more people I can send these too. I would really like to send them to all CDH families in the future! My project is titled: Maxton's Memorable Moments. The painting has been very therapeutic for me and I feel it is a way to keep Maxton with me always (not that I have problems with that, but you know. hehe) So, if you are interested in donating to this fund by getting a bracelet let me know. I am trying to gauge about how many bracelets to get. It costs me about $7.50 to do the project, so by buying 3 bracelets you will be funding two paintings! (that includes me mailing the person their project). All the future ones will be on canvas. Email me at ashleynaye@aol.com if you are interested in this.

Also, some of you may already know, but there is a new project being started to raise CDH awareness. (if you click on the blue envelope in the top right corner you can read more about it/get updates) I vaguely mentioned it on my last post. Basically, it involves mailing blue envelopes to several different places in hopes of getting on a TV show to raise CDH awareness, or having more articles done, etc. I am planning to buy a bunch of blue envelopes (they come in packs of 100) and will work on getting anyone who wants to participate some envelopes if you need them. Just think for about $10 you could mail 20-30 envelopes out! If you don't want to take time to mail the envelopes but would like to help by sending me $10 to mail yours for you, just email me that as well! :-)

Much love guys!
Ashley

A Whole Month

2009-04-21T20:04:00.001-07:00

Tonight at 11:56pm it will have been one month since Maxton passed away. This is so crazy for me to think about. It seems like yesterday, but a lifetime ago. My heart aches for myself. I know that Maxton is in heaven playing with his new friends, but I am left here. I should be rejoicing that he is with God. I mean, that's my goal. To live my life so that I can be with God one day. Maxton is lucky. He isn't in pain and is certainly enjoying himself there. I cannot begin to imagine what heaven is like. I am so curious now. More curious than I have ever been. I am sure is getting into mischief and "flirting" with Addison, Ava, and Ryann and buddying up wiht Joseph and Kaden. I can only imagine the fun they are having. In a way, I am jealous. I wish I could be care free like they are.

The past few days have been a little rough for me. I just miss him and wish he could be here. I was thinking about the upcoming year and all the things Max will miss. I wonder if he is heaven thinking of all things I am missing up there because I am stuck down here. :-) It seems like every month there is soemthing that will make me think of him. May- mother's day; June- father's day/ conceived; July- found out we were pregnant, my birthday; October- diagnosed/Halloween; November- Thanksgiving; December- david's birthday/christmas... it just goes on. Not to mention every 3rd of the month i will think about how old he would be; every tuesday i think about the tuesday he was born; every saturday i think about when he dies; every 21st i think about when he died... it's crazy!!! That is alot of thinking and "anniversaries".

There has been some talk of me stopping following other blogs because it is too heartbreaking. I CANNOT do that. The other families are a part of my family to me. It's my new CDH family and I won't stop reading. I rejoice with each successful, positive thing. And my heart breaks with each family facing new struggles or the loss of their child. For those of you who arent CDH families, just because your baby lives, doesn't mean that things are all peachy. These babies often have many struggles to continue to overcome.

When I read about Kaden today I was pissed! I am so angry that someone else is where I was a month ago. How many more will their be! It is simply not fair and I am sick of it! 50% survival rate... that is ridiculous! In fact, all the babies that I have followed recently seem to be passing away! It makes me so ANGRY!!!! Kellie, Carter's mom, has created a blog. I encourage everyone to check it out. It is a new idea to spead awareness.

www.lettersforcdh.blogspot.com

Kaden Alex Kuehl

2009-04-21T07:01:00.000-07:00

It is with a very heavy, sad heart that I wanted to inform you all that Kaden passed away yesterday. Please continue to pray for Kristi and Craig on the road this jounrey has taken them. Pray for peace and understanding and healing. I understand far too well what they are going through and it is so difficult to imagine another family suffering from this stupid defect! I was so angry this morning when I read the news. Please also spread awareness in Kaden's memory!!!

I Will Praise You in This Storm

2009-04-19T12:58:00.001-07:00

The day after I found out Max was sick I was thinking about it the whole way to work... why me, what are we gonna do, what if he doesn't make it, this isn't fair... all of those things were running in mind during that car ride. Then, this song came on the radio. I immediately burst into tears. Why is it that we tend to forget to praise God when we are going through the "rough patches". We pray alot, but forget to praise... Everytime I hear this song I think of my sweet baby boy.. and the line that says "The God that gives and takes away". God is merciful. I've said this before and may have written it on here.. probably have, but God didn't have to give me Max. Sure, it hurts right now, and some days I am plain pissed off about, but in the end.. God didn't have to give me Max, but he did. Would I ever change that? NO WAY!!! I am so grateful for those 9 months and 18 days... God gave me a new reason to praise him, Max. Sure I miss him and am sad that he was taken away, but that doesn't mean I shouldn't be praising. In fact, it makes me wanna praise God more than before... what a precious gift I was given, the most perfect gift. I wish I could tell you that the days are getting easier, but they aren't. Every day I wake up and he is the first thing I think about, and then I praise God. :-)
"Praise you in this storm"
I was sure by now
That You would have reached down
And wiped our tears away
stepped in and saved the day
but once again, I say "Amen,"
and its still raining

As the thunder rolls
I barely hear you whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God that gives
And takes away
I'll Praise you in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I've cried
You hold in your hand
You never left my side
And though my heart is torn
I will Praise You in this storm

I remember when
I stumbled in the wind
You herd my cry
You raised me up again
My strength is almost gone
How can i carry on If I can't Find you

Pampered

2009-04-18T19:50:00.001-07:00

I figured it had been long enought since I had pampered myself so today I went to get a haircut. The last time I had my hair done was on July 3rd, later that night we found I was expecting Max. I felt bad because I had my hair highlighted that day and didn't think I should've done that since I was pregnant (of course, I didn't know I was at the time) So it was definately time. The sad part is that David didn't even notice... men... :-)

I also went and got a pedicure today. My mother in law had given me a gift card for one on my birthday, July 6th, but I had been afraid to use it because I didn't want to hurt the baby. Almost comical now. :-) Anyways, now I have cute little purpley/pink toes. :-)

Today has been good. David and I went out to dinner tonight at Gerst Haus and then went out for dessert at Cracker Barrel. :-) I just didn't feel like coming home... I was finally able to get a good nights rest last night. Hopefully I will be able to tonight as well. Thanks for checkin in on us!

Work

2009-04-17T14:22:00.000-07:00

I have been back at work for two days now. It has gone pretty good. I've seen a few of my consumers (or clients) and none have brought up Maxton. I brought it up with one of them because it felt like the big "elephant" in the room, but this is someone I have worked with for over 4 years now.. so it makes sense to talk to her. She didn't push me for information and now she knows about CDH! I had a really rough night last night and simply could not fall asleep. I am hoping for a better night tonight, otherwise I may need to seek out some medicine to help me sleep. I think the reality of everything is finally starting to set in. Being a psych major and working in that type of position for 4 years, I am now going to psychoanalyze myself. :-) I think that I was busy "planning" for Max since last July. In October, we found he was sick, but I still planned for his birth, his nursey, his care,etc. Then I had to plan his funeral, then the balloon release... and now... now, I am out of planning for him. I do intend on doing some fundraisers, but there is no more planning. No more searching the internet for baby furniture (we never bought any), no more obsessively trying to figure out which CDH spectrum he would be on, no more anticipation for his arrival and care. Sometimes I forget that it is "over". I hold my belly and wait for him to kick, but he isn't there and then I remember that he is gone. (the epidural was so good, i forgot i gave birth, hehe). I am doing okay, just typing what goes through my mind 1500 times a day.

Please continue to pray for Kaden, Ruby, Jon, and Jaime.. all recently born and fighting CDH.

Please pray for sweet little Sofie, who has reherniated for the 3rd time. She is one and super cute!! Max was due on Sofie's first birthday.

Also, please pray for Ireland and James' family as they recently found out their child will have the CDH fight as well. There are also several other babies due soon- Avery, Kamryn... sorry if I missed anyone!!! Thanks for checkin in.

Unbelieveable

2009-04-14T15:43:00.000-07:00

Today I had my 6 week checkup with my OB doctor. In July when I found out I was pregnant I didn't have an OB here, so I started to go to one associated with Baptist hospital. When Max was diagnosed with CDH in Oct I had to switch to a Vanderbilt doctor. Many of you who have followed the blog all along know my distaste with Vanderbilt. In fact, I was telling Marion yesterday that I was suprised my doctor had not called to make sure I was doing okay. I went in the day after Max's death to talk to them about how to stop my breastmilk, but only met with a RN. Anyways, today was rough because there were pregnant women everywhere. Most of the ones who weren't pregnant had small babies with, who I assumed were also there for their 6 week check up. :-( It was sad because I wanted my 6 week old with me too! Anyways, then I get to go back and see the doctor and the doctor has the audacity to come in and say "Good to see you, how is the baby doing?"... I just looked at stared at him and said.. well, he passed away. Then he asked what happened. I am thinking to myself" does he even remember that the baby has CDH? or should I start with that". I just started with what happened the last day, but I CANNOT believe that he did not look at my chart and notice. HE tried to pretend like it was not on my chart, but I know it was. My old OB, who I only saw 4 times sent me a sympathy card! If she found out and she is not even associated with Vanderbilt, then I feel like this guy should have known. I mean, he is in a large practice, so I didn't see everytime and he didn't deliver me, but it is still unexcusable! At the end of the appt, which went well by the way, the doctor said that if I planned to go back to the previous OB that was okay... I was thinking, why because if your doctor was too negligent to notice that your baby had died yo uwould switch doctors too. Yes, Dr. B, I will be going back to my OLD ob. (Vanderbilt hospital care- great; clinic care- this is typical).

On a much happier, not crazy, note- I met with Marion (Addison's mom) yesterday in Chattanooga. I felt like I had known her forever. It was very nice to talk to someone that is where I am. Addison passed about a week before Max, so we are kinda in the same place with our grief, I think. It was very nice and I hope to see her again soon. She also sent me this really nice cross ornament in the mail! Thanks Marion!!!! :-)

I am planning to go back to work on Thursday, so I will be sure to let everyone know how that goes. Please keep Ava Daher's family (Lisa and Rich) in your prayers as their daughter was born sleeping yesterday. I am so very sad for them.. also please keep Kaden and his family in your prayers. He seems to be holding his own after coming off of ECMO! Go Kaden.

A Place Where Children Are

2009-04-12T20:25:00.000-07:00

This was what we had in handouts from Maxton's service. We picked it, but I didn't remember any of it when I was rereading it today (which is funny because David picked a different one and I said no because this one talks about music in it.) Anyways, I thought I would share it...

What kind of place would heaven be
with all its streets of gold,
if all the souls that dwell up there
like yours and mine, were old?
How strange would heaven's music sound
when harps begin to ring.
If children were not gathered 'round
To help the angels sing.
The children that God sends to us
Are only just a loan,
He knows we need their sunshine
To make the house a home.
We need the inspiration of
A baby's blessed smile.
He doesn't say they've come to stay
Just lends them for a while.
Sometimes it takes them years to do
The work for which they come.
Sometimes in just a month or two
Our Father calls them home.
I like to think some souls up there
Bear not one sinful scar.
I love to think of heaven as
A place where children are.

How true is that? What kind of place would heaven be if everyone were old. I can't imagine a place where everyone is old. I am sad that mine had to be one of the children but I guess maybe it is an honor. An honor that God wanted Max to be one of the fun, young souls in heaven. I find comfort in that...and just felt the need to share.

Happy Easter!

2009-04-12T11:42:00.000-07:00

I just wanted to say Happy Easter to everyone. God is so good... I know that he is with me everyday on this difficult journey and I can feel his presence. I just wanted to take a moment to thank everyone for their gifts, prayers, cards, love, and anything else you have done for our family. We are so thankful and can feel everyones love around us through God. My grandma was able to decorate Maxton's grave for Easter since I do not live there to do so.... Thanks Grandma!

please continue to pay for baby Kaden and his family. They are doing a trial run off of ECMO today and I am sure Kaden will do just great. It is amazing just how nervous I am for them. They have become some of my best friends even though we have not met in person. Please just think of them today as this is a big hurdle to cross for little Kaden!

New Layout

2009-04-11T11:12:00.000-07:00

So I changed the layout last night. (when I was up til like 3 am because I couldn't sleep) I am an idiot and deleted everything on the right side of the blog.. all my links and everything, so if you would like to be listed on here let me know. I tried to get everyone that I used to have but may have missed someone. Just let me know. To explain the blog, I had read somewhere that CDH angels/babies were like butterflies. The flutter by but leave a lasting impression. I found this layout online and thought it looked like a person giving up their butterfly, not to mention, the butterfly was blue. It seemed perfect. At Maxton's funeral we had some blue butterflies in the flower arrangements. We also had a blue butterfly on his casket (see picture below), so thus, this seemed like the perfect layout. (the only problem is that if I change it I think it will delete everything again, so hopefully you all like it because I think it will stay!)

I have been working on a few CDH projects and am not quite ready to disclose them, but please pray for them. I am super excited about each one and can't wait to get them into full swing.

David and I are doing pretty good. We both miss Max and have moments where we are very angry and confused, but also have moments of peace about it. I would say right now the moments of peace are definately outweighing the confusion, which is good. I've been told the "reality" of it all will likely hit in a few months, so I am glad for the days of peace now. This weekend my parents are coming to take some of the baby things back home with them as we don't really have room to store it all here... not to mention alot of it makes me sad (like the stroller and playard that are permanent fixtures in our living room right now!). I am not ready to go through and clean out drawers or anything yet, so that stuff will be staying. Hopefully this emotions will be "okay" this weekend as we begin to pack up things. I am excited to see my parents though and love it when they come to visit.. even though my mom was here for 3 weeks straight just 3 weeks ago! That's right.. little man has been gone for 3 weeks.

Maxton, buddy, we love you and miss you and we know you are watching out for us and guiding us in this new path our lives have taken us. We wish you were here to take our lives journey with us, but you will always be in our hearts. Much love sweetie...

19 days

2009-04-09T19:40:00.000-07:00

Maxton has now been gone for longer than he was here. I miss my little man and was re-reading part of his journey. I am so sad that he was taken from me but am so thankful to have received the gift of him in the first place. I've had people tell me they wish they could take it all away, but I certainly don't wish that. If I had to do it over, the only thing I would change is the outcome. It's probably hard for people to understand, but I am not sure that I would change Max being diagnosed with CDH. I have so many new people in my life because of it that it is hard to wish that it never happened. I learned so Max from Max in his 18 days, many of it I wouldn't have learned if he didn't have CDH. You may think I am crazy because CDH is what took him from me, but it also brought me so much. So, I think the only thing I would change is still having him here with me. ( catch me on a bad day and I will likely have another, more vulgar opinion of CDH!) :-) Really CDH does suck... and I certainly wouldn't wish it on anyone else. I guess I am just trying to say that I am so very thankful of the strangers that are now like family. I know I have crossed paths with so many people on this journey that I would have never met were it for Max. With the birth of one son, we gained a family. Max, though no longer here, will always be a part of this larger family. I know that when some CDH parents think of their children, then think of the others lost, and the others who survived. I know when I think of Max I think about the other stories I have read. The people whose lives have been changed forever because of this horrible birth defect. The lessons that this has all taught me will stay with me forever, and unless you have lost a child you can't really understand. I would never want to take back what happened, but if I could change the ending that certainly would be nice. :-) It's hard to believe he has been gone for 19 days...

OK

2009-04-07T20:56:00.001-07:00

I am doing okay. I just wanted everyone to know that. Today has been a better day for me. I suppose there will always be "good" days and "bad" days. Today I went to my office and talked with my boss some about when I am coming back. That should be fun. :-) (read sarcasm) I really wanted to post tonight to ask for prayers for Kaden. He is on ECMO and is having some problems getting his lungs to function properly. His parents are very worried and I remember being right there a few days after Max was born. CDH is such an emotional journey, but Kristi and Craig have been SOOO supportive of me through my whole journey and even find time to support me now when they are in the "thick" of theirs. Please pray for them and their sweet son. When I first saw his picture he reminded me of Max... we have been saying they are "brothers". I know Max is watching out for him but I just thought a few extra prayers certainly won't hurt! Thanks

Rambling On.

2009-04-06T22:03:00.001-07:00

I am not able to sleep- again. I lay down and try to sleep but just can't get there. Too many things running through my head. I miss my baby boy. He would have been 5 weeks old tomorrow... Going into this, I knew something like this could happen. Of course, you have to believe that your baby will be in the 50% that survives, but there were days when I would think about "what if?" I am actually handling it better than I thought I would... most of the time anyways. It's just at night. At night I lay there and think.. I think about how soft he was, and how much I wanted to hold him- just pick him up from the hospital bed and run away with him. I think about the only time I really saw his eyes and how hard he was tryign to focus on me but couldn't. I think about the only time I heard him cry and really wish that he hadn't cried then. I think about all the dreams I had for him, like playing games with him. And how I wanted to bake cookies with him. And read to him. And how I wanted him to love music like me. And love to work out like David. We had so many plans for Max. I know that Max is in a better place and I know that he is at peace but I just can't let those plans go. I have so many images from him in the hospital that play through my mind... I want to see the good images, not the bad ones, but for some reason it's like my mind is on replay of that last day... over and over. Whenever we bring up Max (which is often) we talk about how he is heaven and how he is safe, but I can't help but think... but I wanted him here. I needed him here. I think about how selfish that is for me to say. I went to dinner with some other CDH moms last night (their kids are at Vandy now)and we were talking about how we just wanted our kids to have a good quality of life. And I think that maybe that is why Maxton had to go, because he just wouldn't have been able to overcome everything and might not have had a good quality of life because of it all...And sometimes that does make it easier to think about. I didn't make him stay here only to have a bad life... but in my mind, his life would have been great because I would have made it that way for him. And it is sooo hard to get those dreams for him out of my head. I wonder, when I do have children again, what will my dreams be for them? Will I want to do all the things I had dreamed for Max, or will I not, because those are Max's dreams and I don't want to replace him. It's just hard... I had planned for a baby since July. Sure, i found out in August that something might be wrong.. and confirmed in October.. but I still let myself have dreams for my baby, what mother wouldn't? It's just that the death of those dreams has been hard to take. I am not sure if this is making sense.. I sure hope so, but it is late, and I am tired.. I just can't sleep. I wish I had my Max to hold or feed or something. I know I am going to be okay, and I know that this will get easier, it's just late at night... if only we could skip night time. :-)

2009-04-03T15:10:00.000-07:00

KADEN ALEX KUEHL

Kaden was born this morning at UCSF and has been stabilized. I just wanted to remind everyone to pray for him and his family... Isn't he cute!! I know Maxton and his angel friends are helping watch out for Kaden and are going to help him fight CDH!

Some Thoughts

2009-04-02T11:25:00.000-07:00

First of all, I wanted to say thanks to David's cousin, Ashley, for making us this beautiful memorial for Maxton. We LOVE it!!! It is so unique and beautiful. Ashley is very talented and does all kinds of crafty things- please visit her website www.ashleyhackshaw.com or www.lilblueboo.blogspot.com. :-) Thanks Ashley!!!

Secondly, I wanted to share something that has been on my heart. David and I have decided to start a CDH project of our own. I am not sure of what all we plan to do, but I know what we plan to start with. We plan to offer unique gifts to other CDH families. We received so many wonderful keepsakes to help us remember Maxton (like we would every forget!) that we want to share this with other Angel's families. I have a few things in mind but don't want to disclose too much as I want it to be a suprise when they get their gifts in the mail. So many people gave us monetary donations at Maxton's funeral that we have set some of that money aside for this project. I am very excited about it and have decided to call it "Maxton's Memorable Moments". This came to me in a dream last night- the name, that is. Anyways, just wanted to share what has been on my heart. Hope all is well with everyone.

Also- please pray for Kristi, Craig and baby Kaden. Kaden will be here tomorrow morning via c-section. I am sure Kristi and Craig are very anxious and could use everyone's prayers as they begin their CDH roller coaster journey!!! Kaden's blog is located to the right if you would like to check it out!

In Memory of Maxton

2009-04-01T08:17:00.001-07:00

Grab the Kleenex and watch this tribute to my sweet baby.

Make an on-line slide show at www.OneTrueMedia.com

Turquoise Pics!

2009-04-01T06:44:00.001-07:00

Make video montages at www.OneTrueMedia.com

I am still waiting on some other pictures from KY. The last picture is from my mother's workplace, Union Co. Methodist Hospital. The two pictures before that are from my cousin Kristi's office. Thanks for participating and spreading the word about CDH!!!!

Balloon Release!

2009-03-31T20:12:00.000-07:00

Tonight's Balloon Release was amazing. Thanks to everyone who participated. There were releases in Nashville, TN- Sturgis, KY-Frankfort, KY- Louisville, KY- Pawhuska, OK- and some CDH families in Cleveland and California also released balloons. We had about 50 people at the balloon release in Nashville and about 30 at the one in Sturgis. This is a testament to how many lives Maxton touched! At the one in Nashville a stranger came up to see what was going on, so I shared Max's story with her and educated her on CDH. :-) We released 18 turquoise balloons with Maxton's name on them for the 18 days he was here with us. We also released some nice white balloons for all the other CDH babies, both heavenly and earthly. My friend Racheal took a bunch of pictures that hopefully I will get into a slide show, but for now here are few!

Today Maxton would have been 4 weeks old. It's crazy to think that just 4 weeks ago I was at the hospital about to have a baby and now it has been 10 days since he has been gone. He is certainly missed by many and I know he will never be forgotten!

CDH Awareness Day!

2009-03-30T18:41:00.001-07:00

Please remember to wear turquoise tomorrow in memory of Maxton and all other CDH babies! Please also tell someone new about CDH to make more people aware! If you are in Nashville please attend Max's balloon release. Hopefully it won't rain! We are having it at Centennial Park (main parking lot in front of parthenon) at 6pm. There will also be several other balloon releases around. Please take pictures and send them to me!!! :-)

By the way, we are still doing well. I know people keep asking, so I thought I would throw that out there. Thanks for praying for peace for us!

One Week

2009-03-28T11:41:00.001-07:00

I sit here alone for the first time since Maxton passed. I cannot believe tonight it will have been a week. In some ways it seems like yesterday and in some it seems like a lifetime ago. I wonder, was I ever even pregnant? Was this all a bad dream? Like Marion said, I have the battle scars of pregnancy with no baby to hold. This time last week I was very concerned over my baby and was so fearful that he would pass away, and just a few hours from then that became a reality. I am now a childless mother. Every time someone asks, 'Do you have children?', the question will be bittersweet and the answer will probably make them feel sorry for me, or sorry for asking. I don't want people to feel sorry for me. I just want them to learn. To learn to love. To learn to hope. To learn to be a better person. Those are just a few of the things I have learned from this journey. I will always have Maxton in my heart.

Shockingly, I have not been sitting around wondering "why?" I know that Maxton was sent to me for a purpose that he fulfilled. What I don't exactly understand is why he had to be taken. I'm not sure why he couldn't have stayed here and still fulfilled his purpose. One day, I am confident, I will be able to ask God this question, and until then, I have a certain peace about it. A peace that I am sure will grow over the next few days, months, and years. I know my Maxton was loved by multiple people while on this Earth and I know that his death, though untimely, was not in vain. I am forever grateful for you all reading this and sharing it with your friends. I find comfort in knowing that Maxton was able to touch multiple lives, the lives of friends, the lives of strangers. It may sound odd, but it makes me find hope in his death. I am hopeful that those who read this will love their children or family that much more. They won't take as many things for granted. I know that when God decides to bless us with another child, we will certainly be better parents because of Maxton. I cannot say this enough, but Maxton has forever changed my life, my husbands life, and our marriage.

I feel as though I have to mention my CDH friends in this. These women are the most amazing women I know. Regardless of individual outcomes, the women I met through this journey are so strong and inspirational. I have made some forever friends and I am grateful to God for that, as well. I think that God chooses us mothers for a reason. I don't think I am any stronger than any of them. I plan to be a part of this community of love and support for the rest of my life.

Having said all of this, I miss my baby. I wish I was holding him now, or watching him take a nap, or even visiting him at Vanderbilt. I suppose I will always miss him. We had a very nice service for him. Thanks to PJ, my pastor, for making it extra special. It is so surreal to be here... in this place.. somewhere I never thought life would bring me. I see that I am starting to ramble so I will leave you all for now. I intend to continue to post here as it is very therapeutic for me. Read at your own will, as it may make you sad depending on my mood.

Balloon Release

2009-03-26T07:23:00.000-07:00

I just wanted to let everyone know that we continue to appreciate your thoughts. We has received so many kinds words and gifts, as well as hearing of some nice donations made to CDH foundations. We know that Maxton's life was not in vain and I have found so much comfort in that. I can tell that people are praying for peace for me because I definately feel it. I desperately wish that my baby was here with me but understand that God needed him there.

As for the balloon release, it will be next Tuesday, March 31st at 6pm at Centennial Park in Nashville, TN. We plan to celebrate Maxton's life and the lives of other CDH angels (both heavenly and earthly). Regardless of whether you are able to make it to the balloon release or not, please wear turquoise in rememberance of Maxton and all the other CDH babies. CDH affects roughly 1600-1800 families per year, and half of those do not survive. We are certainly not the only ones who are grieving for our child. As always, thank you for checking on us and praying for us.

Arrangements

2009-03-23T14:44:00.000-07:00

We have decided to have Maxton's final resting place in Kentucky. Partially because we hope to move there one day, and partially because it is so much more peaceful than the city.

Visitation
Wednesday March 25th
4-6pm
Whitsell Funeral Home
609 N Main St.
Sturgis, KY

Funeral Service
Thursday March 26th
2pm
Henshaw Christian Church
237 Chapel Hill Rd.
Morganfield (Henshaw), KY

We will also be planning a memorial service here in Nashville for Maxton. It will take place on March 31st and will serve to remember Maxton with a balloon release. We will also hope to raise CDH awareness on this day due to it being CDH awareness day. I am not sure of the time or place yet (if anyone has a location suggestion let me know, I am thinking some park maybe?)Please wear turquoise in rememberance of Maxton on the 31st for CDH awareness. We continue to appreciate everyone during this difficult time.

If anyone would like to do anything in memory of Maxton, we request that you consider donating to a CDH foundation in his name. The following organizations all help families within the CDH community:

Parker Reese Foundation
P. O. Box 2199
Elizabethtown, NC 28337
Jessica Singletary at (888) PRF-CDH0
http://www.theparkerreesefoundation.com/

Breath of Hope, Inc.
PO Box 6627
Charlottesville, VA 22906
Elizabeth Doyle-Propst at (888) 264-2340
http://www.cdhawareness.com/

Global CDH
P.O. Box 209
Hasbrouck Heights, NJ 07604
(201)984-5830
http://www.globalcdh.org/

CHERUBS
3650 Rogers Rd, #290
Wake Forest, NC 27587
(919)610-0129
http://www.cdhsupport.org/

Our sweet angel baby

2009-03-22T00:26:00.000-07:00

After 18 days on this beautiful earth, our sweet baby earned his angel wings tonight at 11:56 while David and I held him. They had done everything they could for him throughout the day, but he was not responding and David and I made the gut-wrenching decision to allow Maxton to go to heaven and be with God. I am completely heartbroken over this but we had to put Maxton before ourselves and he had just fought so hard he wasn't able to fight the newest battle. We had prayed that God would let us know when it was time and about 1 mintue later there was a knock at our door to discuss the day. We knew our little warrior was not able to win the battle. We are currently considering arrangements and will be sure to post them. We want to thank everyone for praying for our son. I know that he has touched many people and has accomplished so much in the past 18 days. I know I have said this before, but I cannot begin to describe how much Maxton's life has meant to me and my husband. We will never be the same people and have been changed for the better. We could have only hoped to share this with Maxton while here on earth, but know that we will be able to hold his beautiful little soul again in heaven. Thanks so much for praying for us.

Silo

2009-03-21T16:20:00.000-07:00

So Maxton now has a silo. Plan A did not work and things got very bad, very quick. While waiting for surgery to come up to Maxton he coded- his heart stopped and he quit breathing. Luckily, the surgeon arrived as this was happening and opened his incision and after 10 minutes of chest compresions, his heart restarted. All of this happened in a matter of about 30 minutes. His heart is now beating but his oxygen is not too good. For a while it was running in the 50s-60s ( and for a brief time much lower than that), which is why they decided to do the silo. Max is very purple, but is starting to regain some of his color. The next few hours are very critical, as he has alot of acid in his system. His level should be less than 1 and it is at 14. There is risk that this could poison him, but they are giving him a lot of fluid to hopefully combat this. There is also risk that he could desat again or his heart could stop again. Right now his oxygen is in the low 80s pre and the 70s post. They think after a few hours the numbers should be getting closer to each other. I am holding it together as best I can. My little man has been through so much but he is clearly not ready to leave us just yet. I am praying that God has plans for him that involve and nice long life with his loving parents. David and I are staying at the hospital tonight to be near him in case he has another bad episode. We appreciate everyones prayers and know that this what has kept Maxton alive. Every time I see him I remind of everyone praying for him and how much love people are sending our way.

The plan

2009-03-21T11:39:00.000-07:00

As we speak they are switching Maxton from the high oscillating vent to the jet. Due to the bleed and the swelling, Maxton's tummy area is now pushing on his diaphragm, which is pushing on his lungs. His sats have dropped off dramatically this last couple hours to about 60 right now. The good thing is that his pressure is now up and staying up which makes them think the bleed has likely stopped. His heart rate is also in the 140s-150s. Hopefully the switch to the jet will help his oxygenation improve.

Plan B- If the oxygen doesn't improve then they will open his incision from yesterday, look around for the bleed and try to fix it, and then put a silo on. This would be a bag on the outside of his body to hold his intestines, which would remove some of the swelling volume and let his lungs expand more.

Plan C- If neither of these works then ECMO may be used.

Please pray that the doctors are able to stabilize our little man soon. We are so very concerned about this. We knew that he would likely be sicker after the surgery, but were hoping for the best and may have tricked ourselves into thinking he was going to do great. Today has been especially tough and it seems like it is only just starting.

Ashley and David and sweet baby Maxton

Bleeding

2009-03-21T08:50:00.001-07:00

Maxton did great overnight but when I got here this morning they had just had a bad blood gas. Apparently his blood volume has dropped and he has some internal bleeding. They are trying to figure out where, but have not been able to as of yet- though the think it is likely in the abdomen. He is tolerating the bleed well, but that could change at any minute. Right now they are going to start giving him quite a bit of blood products to get his pressures back up (they are in the mid 40s) and hopefully get his heart rate down- it is in the high 170s-low 180s. The fellow told me that if the bleed is in the abdomen it should swell and the bleeding should stop if it gets to the point where the abdomen is too swollen. Please pray for my little man today as I cannot imagine losing him.

Little Man

2009-03-20T18:35:00.000-07:00

Maxton is still looking pretty good. He is obviously pretty swollen, right now mostly concentrated to his abdomen. They have been weaning his oxygen tonight and he is down to 73 (or was when I left). They will continue to wean throughout the night if Max's blood gases look okay. So far they have looked good and improved throughout the day today. By no means does this mean he is "out of the woods" but I am definately encouraged that they are able to wean some things. They have been giving him blood products because he is draining quite a bit through his chest tube and because he lost some during surgery. However, I think they are planning to stop/slow down because he blood pressure is getting a little too high. They are trying to keep it above 50 due to the potential for his pulmonary hypertension to worsen after the surgery. When I left it was running in the low 70s. I think they would prefer it to be in the mid-low 60s or high 50s. His heart rate was in the 130-140s. He was satting 100-100. His delta p was at 33-34 and his MAP was at 14.0. I am praying that he can keep this up for the next couple of days. I am so inspired by him and can't wait to scoop him up and giving him little kisses! Thanks for checking in on us.

Warrior Scar

2009-03-20T12:38:00.001-07:00

Little Maxton now has his very own warrior scar. Surgery got underway around 10am. At about 11:30, the RN came out to tell us things were going well and they were in the process of finishing with the patch, then they would be closing up and coming to get us. So, about 12:40, they came out. ( I was a nervous wreck that last hour wondering what was taking sooo long!). Maxton's defect was "large". I asked the surgeon what organs were up and he kept saying "all of them". I plan to get more clarification on this, but regardless, they are all back down now. :-) He could not sew Maxton completely up, due to skin not stretching enough to allow a complete close. (basically since there hadn't been any organs in his tummy area, it was pretty small) His outer layer of skin is sewn up, but the more muscley skin underneath is still open... so Maxton now just has a real hernia (like what most people think of when they hear hernia). This will have to be fixed at some point, but not to be worried about for right now. He apparently did good during the surgery. The fellow (one of his doctors) told us that he did better than they expected. His oxygen is obviously back up to 100% and his nitric is at 19. His delta P is set at 29 and his MAP is at either 14.5 or 15 (it was fluctuating so I couldn't tell and didn't wanna ask while they were still cleaning up). He looks really good. His is swollen, but looks like a new man! The goal today is to keep his blood pressure mean above 50 and to keep him satting well. They are just going to let him rest right now. The only drips (other than food and stuff) that he is on is still the morphine and the versed. I anticipate that they will start a blood pressure med later today but it is good that they haven't yet. He mean was like 49-50 when I was back there. I think they were trying to give him a little time to see if he would get it up on his own during recovery. Obviously, the next 48-72 hours are critical. I am hopeful that Maxton will not decompensate (alot of CDH babies do). Please keep us in your thoughts. I cannot even begin to describe how greatful and thankful we are! We truly appreciate each and everyone of you..

Tomorrow and Pretty peepers!

2009-03-19T18:46:00.000-07:00

I just wanted to let everyone know that the surgery is expected to take about an hour half. We are looking at like an hour prep time because they are moving the OR to the NICU. Then, the surgery, then about 1-2 hours of clean up/stabilization. I figure that I won't know much until like 2 or 3. I know the surgeons are supposed to let us know how it went, but I may not update the blog until I know that he is stabilized. I just wanted to let you all know that I plan to update it fairly soon after I find anything out. Of course, this time frame is assuming things happen on time. :-) We all know how that goes!

Everything is looking good for tomorrow. Max's heart rate was from 118-138 most of the day, ocassionally in the 140s. His nitric is off for now. He is on phenobarbital, versed, and morphine. He is on the vent still (delta p) and it's settings were 24, with the MAP at like 12.0-13.0 (depending on how much he is breathing). I know the settings will all be different tomorrow, but it is so good to know that he can wean off of things and do well!

Despite all the sedatives that Max is on, Max opened his beautiful little eyes more today. I went to pick up David at work and when we came back David said "Hey buddy" and that eye opened really wide and he was moving it around looking for his daddy. :-) Everytime David would say something he would open his eye (or try to open it) and look around. ( I must say, I was slightly jealous.. hehe) Poor kid can't really focus on anything due to being overly sedated, but he looks so cute trying to see us. :-) I, of course, did not have my camera with me and had to run down to the car to get it. I got some video and a couple of pictures. I cant wait til we see his eyes and he is able to be more awake, but this was awesome. I think Max is really trying to tell me not to worry, that he will be fine! :-)

Friday is now THE day!

2009-03-19T11:00:00.000-07:00

So when I came in the morning- big shock- the nice nurse told us that surgery will be tomorrow. I pretty much knew this because of my conversation with the doctor last night. I do have a time though, 9-9:30. So I am glad that it is tomorrow. At least the doctors will be fresh and we won't be squeezed in. Max is doing good. His heart rate is in the 130s-140s, which is the best it has been in a few days. He is nice and wiggly and smiles sometimes even though he hasn't really opened his eyes yet. Doctors rounds went pretty good this morning. The did a head ultrasound yesterday and I have been anxious to find out what it said. Apparently, the bleed has progressed some, with new vessels being dialated, but they are also able to see clotting, which is an improvement from before ( I think). Basically, this would make him a candidate for ECMO if needed because the bleed is still a grade 2. Of course we are hoping he won't need it, as it still increases his risk of a bleed while on ECMO. The doctor did say this morning that they were pleased with how much they have been able to wean things and "fine tune" them before surgery. He said "this is as close to perfect as we can get with your intestines in your chest". It was nice to hear that he is doing well and we are hoping this means no ECMO. (ECMO is like a heart-lung by pass machine that helps oxgenate the blood. You are given blood thinners which is what would make the risk of bleeding increase) Max's nitric was stopped this morning and he was satting okay when I left (low-mid 90s) so we will see if he was able to keep that up or not. I am sure he will be back on the nitric after surgery but it is good that he can stop now. I think that is about all for now. I know you all will be praying for Maxton tomorrow and I am so grateful. It is amazing to read posts from everyone, especially those who dont even know us. We are so honored that you take time to pray for us. I can't wait to tell Maxton about all the lives he has touched when he gets older. I've been telling him now, but he is pretty drowsy. :-) Of course, who knows what all he will remember...

Surgery Update

2009-03-18T19:18:00.000-07:00

I spoke with the surgeon tonight who explained that surgery may not happen until Friday. He said that the schedule is very busy tomorrow and that Maxton's surgery still might happen, but it would probably be on Friday. I am okay with this as David is off on Friday and I sure don't want them doing surgery when they feel rushed, so we will see what happens. I have been praying for the surgery and feel like God will let it happen when it is time. :-) Just wanted to let you all know that it may be tomorrow or it may be Friday! Other than that Max is doing well. Thanks for all the prayers and love and concern. We sure do appreciate it and I know it is nothing but the grace of God that has allowed Maxton to be such a fighter!

No more Nitric?

2009-03-18T13:52:00.000-07:00

Maxton is still doing well. He is now on the morphine and has been having little shivers today. I am not sure if it is from the switch or not but I covered him up really good before I left for the afternoon. He has been able to lose his brain oximeter due to it running pretty high. He was down to 1 on his nitric when we were there and they were planning to turn it off sometime this afternoon. Hopefully when I go back he will have it off and still be satting fine. :-) His oxygen is back down to 40 and his delta p is back down to 24. All in all, he had a good night last night and a good day today. They also took one of his IVs out of his hand so he has a free hand to grasp mommy's finger. :-) When I went this afternoon they let me change his diaper because he had wet over his cathater again. They also let me take his temperature and swab out his mouth again. I love being able to help and interact with him. The other big news of the day.. Maxton had two poopies last night!!! Thsi was his first since birth so I made a big deal about this morning!!! GOOO MAXTON!!! :-)

The surgeons came in before we left to look at him. One commented how much better he looks this week than last week and I must say- I Agree! She also said that they weren't sure when they were doing surgery. We told her we were told that it would be tomorrow but she acted like that might not happen. She said that it really depends on how many emergencies they have come in because they are short staffed because it is Spring Break. I was not too happy to hear that- especially since my mom used her vacation to stay here another week (this week) so that she would be here for surgery. Hopefully he really does have surgery tomorrow. I am going to plan that he will anyways. Many thanks for all the prayers. I know that is why we still have Maxton with us!

Happy St. Patrick's Day!

2009-03-17T19:46:00.000-07:00

Happy St. Patrick's Day! :-)

Had to make sure MAxton has on some green... not to mention keep his little feet warm.

Maxton with a miniature plush version of Charley Dog (his big brother!)

Some of the high tech equipment in Max's room.

This is the full version of Max's room. I had trouble getting it all in the picture!

Today was a good day. When we left the hospital tonight Maxton was still breathing a little over the vent, but not as bad as before. His heart rate is a little better. His nitric was weaned to 1.5 and his oxygen was at 46. :-) I am sooo proud of him. He is such a trooper. ( I know I say that every time, but it is so true. ) He was moving a lot tonight but they had just changed him from the fentanyl to the morphine. He kept raising one arm. It was almost like he was trying to wave. :-) Not much else to update. Surgery is still set for Thursday. Hope everyone had a good day!

I don't need no stinkin vent

2009-03-17T13:33:00.000-07:00

I am not sure what the deal with Max is, but I think he got perturbed when they said he wouldn't have surgery until Thursday. Yesterday evening and all day today Max has been breathing WAY over the vent. While it is good that he wants to breath he still needs to rest. He is taking these huge breaths regularly and it is interfering with the vents job (not to mention causing his heart rate to go up from running in the 130s-140s to the 170s) Apparently, he also peed over his cathater today. I told his nurse that he is ready to graduate to being a baby who doesn't need all this equipment. I've been telling him all day that NEXT week he can try to be a big boy, but this week he needs to rest. :- )

This morning rounds went okay. They are going to switch his fentanyl to morphine because of the breathing. They decided that since he has been on fentanyl for about 2 weeks that he is likely just used to it, so they will make the change over sometime today. They turned off his dopamine. This means Max is only on morphine and versed! Go Max! His brain oximeter is reading way high (which is good) like in the 90s. This measures how much oxygen his brain is getting. They want him to stay above 50. His nitric oxide is down to 2.5 and his oxygen is at 52-55. His delta p is at 28, and the MAP is at 12.0. ( I am writing all of this in case some CDH mom in the future finds it useful and to explain things to Max one day). All of these numbers are good. We had to bump up the delta p due to his over breathing. The oxygen is up a little because they are weaning the nitric.

David and I are going back to check on our sweet baby later today. I got some cute pictures of him in his green socks (so that the nurses couldn't pinch him). Hopefully I will post them tonight! Happy St. Patricks Day!!

Surgery Date

2009-03-16T13:46:00.000-07:00

Today we met with the doctors during rounds and apparently Thursday is surgery day. It was either Tuesday or Thursday because those were the only days with enough time on the schedule to move the surgery room to Max's NICU room. The doctor said they picked Thursday so they could fine tune things until then and get everything ready. Max is doing good. His vitals and sats look good. The delta p is weaned to 25 with a map setting of 13.5, but Max has it running at about 12.3. The doctor was asking the attending why this would be and the attending said that it is because they turned Max yesterday and his good lung is up so the machine isn't working as hard. Max is breathing pretty regularly and I love watching it. They are planning to wean his nitric today until he can't tolerate it. This morning it was set a 5 (actually 4.5). They are thinking he will let it go to 3, but not below that. I think it would be awesome if he could tolerate not having it at all. His oxygen setting is at 46. :-) I am SOOOO glad! He is such a little fighter! Anyways, keep little Hoss in your thoughts! I am worried about how he will react after surgery, but hopefully he will be just fine.

New Pictures!

2009-03-15T14:40:00.000-07:00

This is from last weekend when little Max was about twice his birth weight!

So swollen.. luckily he was able to pee alot with the help of some lasic. :-) Note the cute little hairdo.

His lovely nurse turned him on his side on Thursday and he looked so comfy! Note the shrinking baby in there. I was excited to see he has elbows.

Sucking on the breathing tubes.

Sleepy time.. of course if you were on 3 sedatives you would be sleepy too.

Family picture from yesterday. We are so proud of our sweet baby boy!

A Wean Away

2009-03-15T13:06:00.000-07:00

First off let me be a typical mom and just say that Maxton is soooo amazing. :-) Yesterday and overnight he was doing well with the nitric oxide weaning so it is now weaned down to a setting of 5, which is as far as they are wanting to wean. Everything else is pretty much where they want it pre surgery so the only plan for today was to try to wean his oxygen some more. They are pleased with where it is but I think they are figuring if they can wean it some more, why not? It is at 55 this morning and the plan is to wean it until it gets to 40 if possible. I am so proud of my little man and think he is just letting them wean away. As far as surgery goes we aren't sure when it will happen. The nurse said that she thinks it will be either tomorrow or Tuesday. As of now, it is not on the schedule, but hopefully we will know more tonight.

In exciting "mom" news- Yesterday I was able to clean out his mouth with a little antibacterial swab. I thought for sure he was going to flutter open one of those little eyes, but never did. His eyes have not been open yet due to being on so many pain meds. Well, today that little stinker opened his eyes. Of course he waited until Momma left to go get some lunch. I had cleaned out his mouth again this morning and he made some really cute faces and tried to move his arms and legs. Then he started sucking away on his breathing tubes. He looked so cute. I stood there for about 30 minutes staring at him hoping he would open those eyes. I could see his eyes moving behind his eyelids, but nothing. So I resigned myself to the fact that he was not going to open them because he was just on too many pain meds. Then when I came back about an hour later I was informed that they had opened and he had looked around a little then closed them again. I tried to clean out his mouth again in the hopes he would open them back up, but alas, nothing. I am okay with this, but sure would like to see those pretty baby eyes looking up at me. Maybe tonight when his dad gets off of work and we go over there he will open them for the both of us.

Are you impressed yet?

2009-03-14T13:59:00.000-07:00

I think Maxton is trying to ask me if I am impressed with him yet. Since this time last week Maxton has lost a TON of fluid. Probably like 5 or 6 pounds of fluid. He has weaned his Delta P from 49 to 23. His oxygen from 100 to 52. His MAP on the vent from 18.0 to 13.0. His dobutamine is gone as of today and his dopamine has been weaned to where they want it (3). I am just so impressed by little man. The nurse today said she thinks that he is letting them wean more than they thought he would. So, today they decided to wean his nitric oxide. They are planning to wean it to 15 I think. So far is he down from 21 to 18 with the plan to go down by 1 every hour as long he is still satting well. When I left he was still satting 100 pre and 100 post. His heart rate was in the 130s-140s and his blood pressure mean was in the 60s, which is where they want it. His ECHO this morning showed his pulmonary hypertension was improving and is now about 1/2 of his systolic pressure. I am not sure exactly what this means, but I do know the doctors were pleased with this progress. Surgery is still likely next week. The plan now is to wean as many things as they can before surgery so that there is more room to go up after surgery if it is needed. of course we know they will have to go up on some things after surgery but the less they have to go up the better. Also, Maxton is breathing over the vent some today and it is pretty regular. They said this is fine as long as it isnt interfering with his blood gases, which looked good so far today. Just thought I would give an update since we came home this afternoon to rest. :-) Thanks for checkin in!

Holding His Own

2009-03-13T13:58:00.001-07:00

Maxton is such a little fighter! He is hanging in there and still letting them wean away. I am so glad to see him making progress. Last night he was weighed and weighed 10 pounds 4 ounces. This morning in rounds the doctors were pleased that he had gotten down closer to his birth weight. I think they forgot he was a big baby again because after the resident said how much he weighed at birth both the fellow and attending were like.. oh okay, so he is close to his birth weight. :-) I was like yeah... he was a big boy! Anyways, basically it looks like surgery will likely happen sometime next week. I am thinking earlier in the week, but a date hasn't been discussed. I know he is pretty much weaned down to the levels they want him to before surgery so he just needs to lose a little of the swelling. He looks so much better now... like a baby again. :-) I love looking at his little face.

The doctor took time to caution me that Maxton could be very sick again after surgery, possibly worse than he was before surgery. I am hoping that this is not the case. ECMO was mentioned again- that he might need it after surgery, if he is a candidate at that time. David and I are very nervous about ECMO due to the previous brain bleed. It hasn't been checked lately, but would be before going on ECMO. I was aware that he would possibly get very sick again but am hoping and praying for the best. I know my little man can do anything as he has proven this several times now.

The plan for today was to continue to wean his dobutamine from 8 to 3.. which may possibly be done by this point as they were weaning one an hour. I think that was the entire plan other than losing some more weight. Doctors rounds go much quicker when you are doing "well". :-)

As always, thanks for the prayers and kindness and support. You other CDH moms are awesome! And obviously I love my family and friends and everyone else who also checks the blogs. Please continue to pray for us and also all the CDH families out there as this condition is so very serious and scary.

Uneventful day

2009-03-12T18:58:00.001-07:00

I am almost scared to post this, but so far today has been relatively uneventful. Maxton continues to allow the doctors to wean his meds and settings, which is exactly what they are wanting to see. :-) His delta p (vent) setting is down to 24 with the mean on 13.5. His oxygen was down to 62 when we left, but they are turning it down every hour as long as he tolerates it. Today they also weaned one of his blood pressure meds, dobutamine from 20 to 10 and they may continue to wean overnight. I am so proud of him. I had a pep talk with him and he is doing so well with what the doctors are wanting to see. There is talk of possibly doing his hernia repair next week as long as he continues to do well and gets some more of the fluid off of him.

Today his super great nurse was able to turn him and now he is laying on his side. The only "hiccup" today was that he has a small bed sore on his bottom where he was laying in the same position for so long. Poor little guy. He now has some meds and dressing on it, so it should heal in about a week. I am hoping that he is able to continue to tolerate the weans. :-)

Oh yeah, I forgot to metion that they never did put in a second tube. The doctor felt it was unneccessary due to Maxton tolerating the leak very well and continuing to be weaned off of meds. Hopefully this leak will not interfere with the weaning tonight. His tummy looked much less "ballooned" today so some of the air must be getting out the other tube.

As always, thanks for checkin in on us. We really appreciate everyones support during this difficult time. David and I are already learning so much and growing so much. It's amazing what one little guy can do!

Chest Tube- Take 2

2009-03-11T17:28:00.000-07:00

Apparently sometime this afternoon Maxton developed another air leak in one of his lungs, so this evening a second chest tube will be inserted. His settings pre leak were down to 28 on the vent with a mean of 12.5 (where they are wanting it) and his oxygen was at 67 (it was at 58 but due to weaning the vent they had to go up a little on the oxygen). The air leak was noticed because he was starting to split in his sats and when his RN went to check on him (by the way I LOVE his nurse) his tummy looked pretty full. So after they did a chest X Ray they confirmed that he was leaking air. Luckily, his settings were only minorly adjusted on the vent to get him back to not splitting. His vent is now at 32 and the mean is 13.5. His oxygen is at 96 though, but I am hoping after the second chest tube they will be able to come down off of it some overnight. My poor guy keeps getting these little "glitches" but hopefully he will continue to well with the weaning. They also weaned his dopamine slightly today.

This morning the doctor called him the amazing shrinking baby. :-) He is ALOT less swollen today than he has been and sort of looks like he did after he was born again. Another doctor commented that it was nice to see a baby in there again. :-) The docs were pleased with the weaning and Max's ability to tolerate it, so if we could just get these little leaks under control I think we would be much more comfortable. I gave him a pep talk so hopefully he will listen to me and be good for the nurses and docs tonight.

On a sad note, please pray for Marion and Jason as their precious daughter Addison lost her fight with CDH today. It brings home the reality of just how lucky we are to still have Maxton with us and just how serious his condition is. I have faith that God is answering prayers and we appreciate everyone thinking of us but if you could, please pray for all the other CDH babies as well. The families listed to the right (and many others that I havent had time to put up) have been so supportive. If you are bored, check out their blogs as well.

Quick Update

2009-03-11T06:56:00.001-07:00

I was so scared that the chest tube would cause an episode and Maxton's settings would have to be increased. Luckily, that has not been the case thus far. This morning his oxygen was down to 62 and the vent setting is now down to 39 from 49. :-) I am so happy my little Hoss is hanging in there. I know he is fighting so hard and am hoping he has another day with some baby steps forward.

Chest Tube

2009-03-10T19:45:00.000-07:00

About 10 minutes after leaving the hospital (and making sure with the nurse that there hadnt been any talks of chest tubes lately) we got a call from a surgeon saying they were putting in a chest tube. Things really do change minute from minute. After about an hour we got a call saying that it had gone well and they were waiting for the chest Xray to confirm correct placement, but that Maxton had tolerated it very well. I asked about his settings and it sounded like everything was kept the same, so I was very pleased with that. The procedure took about 10 minutes and seemed to go perfectly. Little man is SOOO strong and I am so very proud. He continues to amaze me everyday.

I heard in rounds this morning that they are using him as one of their case studies. I think he has the doctors a bit baffled. :-) The RN said this today "No offense, but Max is one weird little guy". I think God sent him here to challenge those doctors and I am glad he is teaching them too. I hope all is well with everyone. As always, thanks for checking and praying/thinking of us!!!

"Why Rock The Boat"

2009-03-10T17:28:00.000-07:00

When I went back to see Maxton late this afternoon the doctor was back there because he was having a "mini episode". He quickly recovered (with the help of little pain meds) . The doctor said they were pleased with the way Maxton was able to now self regulate during an episode without a lot of fluids and also pleased with the way the weaning was working. In the time since the morning, they have decided not to do anything about the air link at this time. Tomorrow may be a different story, but for right now the hole will just be there and the air will be drained later. Maxton has been weaned down to 69 on the oxygen and also further weaned on his pressures on the vent. The next thing is to wean the other vent setting ( I am honestly not sure what it does, but I know it is set right around the maximum). Basically they are suprised his still tolerating weans with the leak and the doctor said since he was doing well with it "why rock the boat". I am praying that Maxton continues to tolerates the weans throughout the night. He is also getting some good doses of lasics and seems to be putting out alot of the fluid that has accumulated. The doctor said today that Max was probably double his birth weight. I think he may have forgotten that he was a big boy to begin with, but I would say he has several pounds of extra fluid right now that needs to go away before they can do surgery. Here is to hoping for good night and good day tomorrow. Thanks for the prayers, they are definately working.

Uncharted Territories

2009-03-10T12:30:00.001-07:00

When I called this morning I was very pleased to hear that Maxton was being weaned down on his oxygen to about 94 and he didnt have any episodes overnight. However, when I got here this morning the nurse was telling me that they may have to put chest tubes in. apparently, Max's left lung now has a hole in it. This is not uncommon in CDH babies, but the typical treatment is a stay on ECMO. As I have already said, MAxton is not really an ECMO candidate. Yesterday his head ultrasound showed that his brain bleed was still a stable grade 2, but it had not improved any. The doctors are sort of confused as to what treatment would be best. A few doctors still recommend ECMO so as to not further damage the lung, but the risk for brain damage because of the preexisting bleed is still very high. Another set of doctors feel that perhaps a "chest" tube should be placed in the abdomen to allow the air to escape. Typically, a chest tube is inserted between the ribs, but with Maxton's organs still being herniated this is not safe. They would like to be able to just repair his hernia and then put in chest tubes, but they feel like the amount of swelling on Maxton would not allow for a good repair of the hernia. They have been debating since early this morning trying to figure out what to do. David and I feel like the tummy chest tube is the best option as we would not want MAxton to have a huge brain bleed on ECMO resulting in death or severe brain damage. The doctor we met with agrees, so hopefully the surgeon will agree as well.

In the meantime Maxton is doing very well being weaned. I am so proud of him and feel like the prayers and pep talks David and I have been giving him are definately working. He hasn't had an episode today and his oxygen is now at 78 and he is still satting 100 both pre and post. His vent setting is still high but they are hoping to wean that starting possibly this hour. His bi carb drip is gone and his dopamine is down to 10, which was the goal from yesterday. His vitals are right where they want them. If it wasn't for this hole in his lung we would be having a good day. I appreciate everyone checkin in on us and have read everyones comments. I wish I could reply to you all individually, but know that I have been reading your well wishes!! I will hopefully update later about what the doctors decide!

Extra prayers today please!

2009-03-09T10:57:00.000-07:00

After meeting with the doctors this morning it has been decided that Maxton needs to prove that he can be weaned on some of his support. Yesterday his oxygen was bumped down to 80, but overnight his nurse moved his head to the other side and he had an episode, so it was bumped back up to 100. His vent was also bumped back up to 47. Basically, they will be weaning both of those meds today, along with his dopamine. Please pray that he tolerates this well! They are very concerned about the amount of support that he has needed thus far and really want to see him needing less to maintain himself. I am praying that everything goes well. ECMO was again mentioned as a possibility if nothing else is working, but the risks with it are HUGE due to Maxton's brain bleed. The are doing another ultrasound today to determine if the bleed is still present. Please pray that it isn't, then maybe Maxton can be placed on ECMO. I feel guilty because I prayed so hard that he wouldn't need it and now that he does he doesn't qualify for it due to his brain bleed. Hopefully, he will be able to maintain himself today and show the doctors just what he is made of.

Also, they have mentioned the possibility of his "episodes" being seizures. They are giving him some anti-seizure meds in the event that they are seizures. If they are seizures it could indicate that the brain bleed has caused some damage. However, it could also mean that he will be able to be weaned off the support that he is on. He was doing well yesterday with the weans other than the episode after his head was moved.

I feel like today is going to be a long day for us. I am really praying that he does well with the weaning as this would make the doctors much more comfortable with the inability to go on ECMO and comfortable with Max's plan of care. I plan to update later assuming there is a computer available. Thanks for everyone's love and support. My little guy is fighting as hard as he can and I cannot explain just how proud of him I am. He has already taught me so much and I will never be the same.

Teeny Tiny Steps

2009-03-08T18:48:00.001-07:00

Maxton has had a pretty uneventful couple of days. He has a few "mini" episodes but is able to recover pretty quickly with his preferred regimen of fluids and a bump up on the vent or oxygen. I think the doctors have finally figured out exactly what he needs when he is starting to have an epsiode and have been able to keep a larger one from happening. Today they were able to wean his oxygen down to 80 but he had a mini episode so it was back u pto 84 when I left. The plan overnight is to simply wean it back to 80. The larger picture goal is to get it down to 60.

I think the doctors wanted Max to make bigger progress in the beginning but have now learned to listen to him and to understand that he will do things in his own time. I am so proud of how hard he is fighting. Whenever I visit him he looks so precious and tries to wiggle his little toes (nice to see but I wish he would just rest).

The good news is that CO2 levels are up. Today one was 38. The doctors had said yesterday they would like to see them above 30 (yesterday morning his highest was like 26). So I was very glad to hear 38 this morning.

Overall I think Maxton is doing a little better. I think the doctors would like to be able to put him on ECMO but are still not able to because of his brain bleed. It is not any worse, but still not any better so for right now the plan is still the high oscillating vent. We were told today that Max is basically getting the treatment that would have been given to ECMO babies before ECMO existed. I am okay with that.

Thanks for checking the blog and leaving posts. Everyone is so encouraging. I am so proud of my little Hoss. Praying for a restful night.

A little Better

2009-03-07T11:45:00.001-08:00

Last night they got us a room at the hospital so that we would be close if Maxton had another episode. So far he has done well. The vent was at it's maximum setting of 50 yesterday and today they have been able to wean it to 42 and change the way Maxton is laying, all without an epsiode. I am hoping that this trend continues.

The doctors in rounds this morning were much more positive than the doctors yesterday. They are pleased that Max has been doing well with his sats. The main concern is some brain damage due to low CO2 levels because the vent has to be so high. As of right now ECMO is still not possible due to the brain bleed. They are doing an ultrasound today to check the bleed in case Maxton has another episode to see if ECMO if possible later. The doctor said they have learned that Maxton doesn't like too many changes at once and hopefully they are figuring out his "plan of treatment". I have learned these babies are so tempermental and each has their own plan of their treatment.

Todays plan: very, very slowly wean the vent
try to wean off of most of the antiobiotics
wean the dopamine a little
Add a monitor to montior blood flow to the brain to see if brain damage is likely occuring or not.

I think that is it for the plan. I am so proud of my little man. I told him we couldn't wait to hold him and love on him and he kicked his little foot this morning. I think he can't wait either. Oh yeah, they are also increasing his fentanyl to try to stop some of the movements. he was awfully wiggly for a sedated baby this morning. :-) Of course we liked to watch him move a little.

Thanks for you support and prayers!

Still Trying to Fight

2009-03-06T18:22:00.000-08:00

Maxton is still trying to fight. When we got here around 6 he was in the middle of one of his episodes. We walked back to a room full of people and monitors beeping with levels falling. After about an hour and a half he is now "stable" again. Unfortunately, he is also on the maximum amount of support that they can do for him. Now, it is up to him. We know that he is a fighter and will do his best. We are praying that God be with him and fight along side him. We were told that at this time he has about a 30% chance of making it. We are praying like crazy that he doesn't have another episode during the night because there isn't anything they will be able to do. They did mention ECMO again. The brain bleeding is not any better, but it is also not any worse. They are not sure whether to do ECMO but will likely do it if he has another episode. Please pray for our little man. I can't imagine losing him as we both love him so very much. We are trying hard to stay positive and know that other babies have been in position and come through just fine. This gives us hope and we try to remember everyones stories when meeting with the doctors. We appreciate you all, more than words can ever say.

Holding his own

2009-03-06T14:09:00.000-08:00

Maxton has been hanging in there today. I called to check on him in the middle of the night and he was doing pretty good. He is on alot of support right now, which has them concerned, but he is maintaining his levels. His blood pressure looks good. In the middle of the night he wasn't splitting, which is a sign of pulmonary hypertension. His per and post sats were both in the high 90s. When we got there this morning; however, things weren;t looking all that great. His heart rate was in the 190s and his pre sats were like 80 and post were in the 50s. They decided to bump up his vent a little and things started to improve. Within about 30 mintues his sats were back in the 90s (pre) and 80s (post), with his heart rate in the 150s. When we left both sats were in the 90s or even 100. I called a few mintues ago to check on him and he has maintained things this afternoon and he has even tolerated a small bump back down on the vent. They are going to try to wean it a little more and hopefully he will also tolerate that.

As far as the brain bleed goes, I haven't really heard much about it today. They did an ultrasound earlier but since we left before the results we havent heard. I do know they haven't had to give him any blood products today so I am guessing it has not been continuing to bleed. They gave him some plasma yesterday so hopefully that did the trick.

We were told that little Hoss is the sickest baby in the unit right now, which was pretty hard to hear. I feel blessed that he is here and love every minute I can spend with him. I am hoping that he maintains himself today and continues to be able to tolerate the small weans. :-) Thanks for checking in on little Hoss and know that we feel so blessed by your support and prayers!

Pics

2009-03-05T19:26:00.000-08:00

I decided that I had to come home and get some rest. I know Max will be trying to get some rest tonight too. He hasn't really had an episode since 5, so hopefully he will do okay tonight. We are planning on going to rounds in the morning so maybe we can get some more information tomorrow. Here are some pics of our little man from yesterday. :-)

Here is little man hoss right after birth before going to Children's

First family picture.

Little Hoss trying to get some rest.

Isn't he beautiful!!!!

Mommy and Max when I finally got to go check on him.

Another Update

2009-03-05T17:26:00.000-08:00

Earlier today we were told that Maxton would definately be on ECMO and they got us to sign consent and everything. we were told the procedure would take an hour so when they called 30 minutes later and asked us to come back for a patient consult I about freaked out. I was half crying going back there and my poor "rock" of a husband looked like he was about to lose it. We thought the worse had happened.

I am not sure if what they have told us is neccessarily good news but he is not on ECMO at this time. Maxton has small bit of bleeding in his brain and it has increased slightly since yesterday so they decided that they cannot do ECMO on him at this time. Basically the docotr said that if they did ECMO today there would be a 5% chance that he would live but that he would mostly bleed out. They did tell us that that may change and he still may end up on ECMO but that it would be unlikely unless they thought death was certain. Pretty scary to hear that, let me tell you.

Luckily, in the 30 mintues between doing ECMO and then not doing ECMO they were able to get him stablized. His sats are still splitting. He has sats being monitored in two places and they would like them to be close together, within about 5 numbers, but Maxtons are 100 in one place in the 70s-80s in the other. He is now on a high oscilating vent which is working fairly well. He has had a couple of episodes since the ECMO talks but has been bagged and been able to recover. He is also on several new meds. His blood pressure seems to be somewhat stable. His pulse is fairly high, at around 160. (earlier it was like 220 so we will take 160!) They also had to put in another PICC line earlier as they have been sticking him all day trying to get him stable.

They also mentioned earlier that Maxton may have an infection because some of his liver readings were "off". The doctor said that they actually hope this is the case because that would explain many of the problems that they have had today. They have swithced antibiotics hoping that the switch will knock out any infection and help stabilize little man.

I cannot decide whether I need to go home and rest (Iknow I should) or stay here overnight in case something changes. I am leaning towards going home since we live like 20 mintues away, so if I do I will post some pictures. Thanks for praying for us and we appreciate everyone.

Keep Max in your prayers

2009-03-05T10:08:00.001-08:00

Overnight I called a couple of times to check on Max and his sats were splitting, which is not good. Sometimes his oxygen is at 97 and sometimes in the 80s or 70s. This morning he had an "episode" and was pretty hard to get stabilized so I was trying to get discharged so I could come over here and be with him. Well, when I got here he had just had another episode and they were working with him to get him stable. Right now they are giving him some blood since some blood work showed he was predisposed to bleeding. They also talked with us about ECMO. It looks like he may be on it by this evening, obviously we are really hoping not but know that if that is what the doctors feel is best then we will be okay with it. They are also in the process of changing him to a different vent so hopefully that will help and he will become more stable. He is still either trying to breath over the vent or getting hiccups alot. When I was back there it looked like he had the hiccups so I asked and the RN told us that they have been trying to figure out if it is him trying to breath or hiccups all morning.. she said they just aren't sure. I think that is about all for now. I am officially discharged and will be over here for a while, but will hopefully be able to post some pictures of Maxton later today! Please keep him in your thoughts!
Ashley

Hangin in there.

2009-03-04T13:14:00.000-08:00

I got to meet my beautiful son officially this morning around 4:30. I did see him after the delivery when I leaned up on the table to get a quick peak before they intubated him. He looked so pitiful at first. His heart rate had been kinda dropping the last few pushes and when he was born he was purple and his little mouth was open without any sound. At first I was worried he wasn't alive, but he pinked up and he was doing very well when I met him this morning. His blood gases were good. According to the doctor he is doing "great"... he said that twice, once when we spoke at 4 and once at 8, so I am assuming it is true. His sats were between 96-100 with the vent and he was really breathing over it. He is still trying to breathe over the vent. They have him on fentanyl but he is pretty stubborn and isn't wanting to rest too much. His pulmonary hypertension is doing well with the nitric oxide they are giving him.

I just saw him again about 30 mintues ago. They put a PICC line in this morning. They also had to add some dopamine for his blood pressure. Overall, they are still telling me that he is looking "great". I feel very relieved to hear this and am so glad to see him looking so well. Apparently the surgeons met this morning and think that if he continues to do this well they may do surgery on Saturday. I was very suprised to hear this and wasn't thinking about surgery talk at all.

Hopefully I will be able to get out of the hospital tomorrow. I am looking forward to going home and getting some rest and of course, coming back to see my little Hoss. He weighed 8 lbs 11 ozs last night and was 20 3/4 inches long. I appreciate all the prayers everyone has said and feel so lucky to have such a good support system. Plan to update tomorrow unless something happens tonight.

Maxton's arrival

2009-03-04T00:39:00.000-08:00

First let me say this is Ashley's dad and we appreciate all the prayers and concerns for Maxton. May God Bless You. Maxton arrived in this world at 11:30pm 3-3-09. He weighed in at 8 pounds 11 ounces. As of this blog he was being examined. Everything went fine. Ashley is resting comfortably. I will update you tomorrow. Again from our family thanks for everything!