Our son Maxton was diagnosed with left-sided congenital diaphragmatic hernia (CDH) at his 19 week ultrasound. Maxton was born on 3/3/09 at Vanderbilt University. He fought hard for 18 days but earned his wings on 3/21/09. Maxton was an inspiration to many during his brief time on earth and has forever changed our lives. If your child is diagnosed with CDH, please feel free to contact us. Maxton may no longer live here on earth, but he will live forever in our hearts...

To start at the beginning of our story click here and scroll all the way to the bottom.

Saturday, January 31, 2009

Maxton's loot

I have been meaning to post some pictures from the aftermath of Maxton's showers but havent had internet most of the week.

This picture is from the shower that Sharon's (my mother in law) friends had for us:

My mom, Me, and Sharon

This is a picture I took after going through all of Maxton's things and organizing them. He is going to be SOOOO spoiled. :-) ( note the super cool clock that Sharon gave us and the cute things with Maxton on them )

These are the ornaments that I was talking about in my shower post. My friends each wrote inspirational messages to Max on the back of them. I LOVE them and can't wait to decorate a tree in his room with them. :-) His nursery themes are construction and sports ( yes, he has two- I found a great deal on bedding sets a Kmart and had to buy two different ones. :-)- see what I mean about being spoiled!)

On a different note- please pray for my family in KY (my parents, brother, grandmother, aunts/uncles- pretty much all of my family). They have been without electricity since Tuesday due to the ice storm there. It doesn't look like my parents will get it back for several more days and it is still in 30s there so they are VERY cold. They have been staying at the hospital where my mom works or at the radio station where my dad works, but I know this isn't ideal. Also, pray that I don't go into labor as they are very hard to get in touch with right now due to the many problems up there related to the ice. I need my mommy here when I am in labor and will be very sad if she can't get here! :-)
One last note- a new CDH baby has been born- Davis Ashworth!!! Check out his family's blog on the side. Also, baby Carter was finally released from the hospital after 115 days!!!! His blog is also on the right!!!
Maxton will be here in about 4 weeks or less (if he decides he doesn't wanna wait). I am so excited to meet him and know he is gonna kick CDH booty!!!!

Tuesday, January 27, 2009

MRI and 34 week BPP

Last night I went in for my MRI to see exactly where Max's organs are. The appointment was very exhausting and something I never want to do again. When I got there the tech explained that I was "very pregnant" and might not fit into the machine. She said she didn't know why they waited so long to do the MRI. I explained that my doctor said that they needed to wait til around 24 weeks so they could get a good picture of just where the baby's organs are. Then she asked what exactly was wrong with the baby. This upset me as she should have read my chart since she was supposed to be taking pictures!! Anyways, after alot of prodding and me refusing to go in on my back, I was put in on my side. It was pretty awful as I was basically jammed in there and every part of my body was touching the machine. AN HOUR AND A HALF later I was finally finished. I kept telling myself to suck it up because Max will be going through alot worse when he is born, so I think that is what made me get through it. :-( Here is to hoping they got some good pictures... they better have!

Today I went for my BPP and routine appt. The BPP was very short as Max was wiggling all over the place. He was practice breathing (it was neat to watch). My fluid level has gone up again. It was 31 today. I am hoping it goes back down. My uterus is also measuring full term. The doctors didn't seem too concerned.

We get the results of the MRI next Wed. when we are at Vanderbilt Children's Hospital. Hopefully we will hear some good news!!! Pray for lungs and liver down!!!

Friday, January 23, 2009

33 weeks

First of all, let me say that my shower on Sunday was also very nice. I plan to post some pictures from it and a picture of all of Maxton's nice new things. He is going to be so spoiled. It is funny, before I found out I was pregnant I talked with my parents about what type of parent I wanted to be. My family is pretty overweight and I had decided that I didn't want Maxton to eat a lot of junk food. I also didn't want his grandparents to buy him anything and everything without checking with us first. Small gifts are okay, I just didn't want us to tell him he can't get something and then grandma show up with it the next day. Anyways, now I am like- Maxton can have whatever he wants :-) but more importantly, from reading other CDH blogs, Maxton can eat anything he wants to!!! Most CDH babies have trouble with feeding so I am thinking if I can get Max to eat it then he can have it. :-)

Today I went for a BPP. It went well. Maxton was practice breathing and as the tech said "he is breathing away". I hope that this is a good sign for things to come. The first thing she scanned was his head, then she scanned his hand. Little Max gave us the "thumbs up" again. I swear, he is trying to tell me not to worry and that he will be okay. He wiggled around alot today. I am hoping that he is able to stay still on Monday when we have our MRI. The big news from today was that Maxton has gained 1.2 lbs. He now weighs in a 6.2 pounds. He really is my little Hoss (who isn't so little) :-). My fluid is creeping back up and was 26 today. I figured it was going up because my tummy has been more sore this week. Hopefully it will go back down over the weekend. I have the MRI monday, then a BPP and doctor appt. on Tuesday. Anyways, thanks for praying for little Maxton. I feel strong for him. I have started to want to nest, even though we have decided not to fully do a nursery yet (we are hoping to move and would like to not have to move a bunch of baby furniture). I have been looking at furniture and wanting to buy it but my husband still thinks we should wait. I agree, but want my baby's room to be all cute and ready for him when he comes home. He will have a bassinet ready for him and I guess that is good enough. :-) Plus, I have plenty of clothes and things to wash to nest. :-) Hope everyone has a good weekend!

Sunday, January 18, 2009

1 down, 1 to go :-)

Yesterday we had my first baby shower with my friends from work. :-) It was super fun. Maxton got all kinds of very nice things and I am SOOO lucky to have such a wonderful support system and group of friends. My friend Racheal threw the shower (with help from several people) and had a great idea that I wanted to share. She found some little wooden decals/ornaments (she put string on them to make them ornaments) that she had each guest write on the back of- basically words of encouragement for Maxton and I. :-) Then I can use them to decorate a tree in his room with. I LOVED the idea. :-) Here are some fun pictures from the day!!! THANKS GUYS!!!!!!! :-) ( I actually forgot Max had CDH for part of the day, which means more than I can say :-) )

Wednesday, January 14, 2009

Update on little Hoss. :-)

I had another BPP yesterday and things are still looking good with little Hoss. My amniotic fluid has gone down from 27 to 23, which I was excited about. I have actually even lost a little weight, which I am assuming is because of fluid retention. Maxton was pretty wiggly yesterday and it was nice to see him being active. He was doing everything he should be doing and scored another 8/8. On a fun note I got to see his little "package" in 3-D after the tech commented that "he is definitely a boy". They tried to get some good 3 D pics, but Maxton is pretty clever when it comes to avoiding the camera and definitely wasn't having any pictures taken of him. I can tell he is going to be quite the handful. I think I can already sense what his personality will be like... of course I have had probably 20 ultrasounds by this point. My uterus is measuring larger than it should- 35 weeks instead of 32, but the doctor didn't seem too concerned with that. Little Hoss was diagnosed with a new condition- large for gestational age. :-) I figure it's good to have a fat baby. They said it should help with his surgery. The only bad thing from my appointment was that I felt very faint during the ultrasound and had to lay on my left side. It was weird as I hadn't experienced this before but was told it happens sometimes because of the baby pushing on a nerve. After switching positions it got better.

Today I met with a client who has a 5 week old. She asked me to hold him while she got his formula ready. It was nice at first, but then I started thinking of Maxton and how he might be 5 weeks old and still not held. Then I got pretty sad. Luckily she came back and got her little one. He was so precious though!

I am getting very excited about Maxton's arrival, but also very anxious. This weekend we are having baby showers. I had debated on whether to have them but decided that I should celebrate Maxton and give my family a way to celebrate him as well. I am getting excited about the showers and that has helped me remain positive this week. Yay for baby showers!!!!

Thursday, January 8, 2009

A Good Dr.'s Appt!!!

Yesterday I went to the high risk OB at Vandy Children's Hospital. I see her about every 3-4 weeks. Anyways, things with Maxton are looking good. So far nothing new has herniated- so it's just bowel and part of his stomach in his left chest. His heart rate was good. He is head down again instead of breech (and kicking momma like crazy- i think he was throwing a temper tantrum the other day because I could feel all four limbs moving around). His kidneys looked good. Pretty much everything looked good. I asked about lung tissue and she said that they could see some on the left but that it was tricky to say how much because your lungs are deflated until birth. She said that his chest circumference is growing like it should be so she is assuming that means lungs are growing also- that was good enough for me! I have decided to nickname him Hoss, as he now weighs 5 pounds!!!! He was 4.2 last week and 3.1 3 weeks ago. He is my little Hoss, which should help him fight CDH booty!

When I first went in for my scan there were still some pictures on the machine and the tech was talking to another tech or student and was pointing out something and said "right sided CDH". I knew those weren't my pictures because Max has left CDH. They then said they have seen several CDH people lately. Afterwards, I asked the woman who is sort of the program coordinator if I could leave my contact information for the other CDH mothers in case they are interested in talking. She seemed to think that was a good idea, so I gave her some information. I figured I have been lucky to find so much support and want to make sure these other women know this support is out there. The coordinator did say that CDH was the "diagnosis of the month" a couple of months ago. I feel bad that it sounds like several other women are going through all of this too. I was also concerned about how many women there are and when they are due since Vandy only has 3 ECMO machines. I will probably be asking about that at my next appt.

Next up- a BPP next week. An MRI at the end of the month. Then Feb. 2nd (i think) we are meeting to discuss Maxton's birth plan!! He will be here before I know it!!! Thanks for following and praying. We appreciate everyone of you!

Monday, January 5, 2009

Please pray

Please pray for Ryann Smith's family. I have been following Ryann's blog and learned today that she passed away. Please keep her family- Jaime, David and Reggan in your prayers. You can find a link to Ryann's blog on the right if you would like to let her family know you are thinking of them, or to read about Ryann's story.