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.

Wednesday, October 29, 2008

A Day at Vandy

Today David and I spent the majority of the day at Vanderbilt Children's Hospital meeting with several doctors. I can't say that I was overly impressed and am hoping that it is just pregnancy moodiness or something, but I wasn't really all that pleased with today. The one exception for that is the NICU, but I will get to that in a minute. First, we had an ultrasound, which the tech was an hour late for. (we were the first patients). Then, of course, there was a student with him so he mainly talked to the student and would eventually sort of tell us what they were talking about. I did feel slightly comfortable with the OB doctor, but she too mainly talked to the student and not so much to me. I am hoping that my next visit with them will be more comfortable. The good news is that the babies heart looks normal, he is over normal weight, measurements are normal.. everything is normal except the CDH. Today the scan showed that part of his bowel and only part of his stomach were in his chest cavity, no liver, no spleen- which I was excited about. In fact, I think Maxton was excited too because when they went to scan his little hand he did the thumbs up for the scan. :-)

After meeting with the OB doctor, we met with the surgeon and neonatologist together. They were both there to basically explain CDH, but I had already read everything they told us, so I didn't really learn much other than they won't know who will be our actual surgeon until right before surgery because they each take turns and it will be assigned to someone then. I am not really sure how I feel about this. That makes me fearful that the person who is assigned won't necessarily be an "expert" in this type of surgery, but I am not going to worry too much about that until the time gets closer. He did say they see about 15-20 CDH babies a year, which sounds pretty good (though lower than I had expected).

Our genetics appt. was cancelled due to us running late (though not our fault that the tech was an hour late) and because she had a sick child.

We did get to tour the NICU today. I wanted to do this because I am not sure how often David will be with me. I was very pleased with the NICU. The staff seemed friendly and I was excited that there are not really any set visiting hours, though there were hours posted, but from what I understand it doesn't apply to parents really. The hours listed from 9a-9p, so even that is really good! Also, the best part, was that each baby gets their own room with a rocker and some even have windows. I like that Maxton will have his own room to get well in. I also like it because we will have some privacy with our baby. :-)

The only other thing that bothered me today was that I was told I will not likely be seeing Dr. Lombardi after Monday. He is my favorite of the 3 OBs I have seen and would prefer to keep seeing him. I plan to discuss this with him further on Monday and am hopeful to continue to see him, but we will see. He is a high risk OB and I will be assigned one at Vandy, so I don't guess I really need two.. I just felt most comfortable at his office. I forgot to mention this last week, but the woman who did my ultrasound at his office was amazing... she made me feel so comfortable and even shared some of her life with me. She also told me that she felt like my gift from God was mercy and that I would be very good with Max. This made the diagnosis much less traumatic and I hate to think I won't see her anymore.

So all in all today wasn't all that great in terms of my care, but it was pretty good in terms of Max's care and that is what is most important. I am hopeful that I will feel better at the next visit. By the way, Vanderbilt Children's Hospital is so nice. It is very kid friendly and I feel lucky to have it. I used to volunteer there before the actual separate hospital was built. It was nice to see the new building today.

I am going in for another appointment on Monday (then hopefully less frequently) and plan to update again at that time. Thanks to everyone for their support. We really appreciate it!

Friday, October 24, 2008

Doctors, doctors and more doctors.

So I got my first letter from Vanderbilt Children's Hospital, where Max will be treated. I was told by my OB that I would have an appointment with a surgeon on 10/29. Well, when I got the letter I actually have 4 appointments with 4 different doctors. Little Maxton is going to be VERY well taken care of. I have an appt. with another OB doctor, a surgeon, a neonatologist, and a genetics counselor. David and I will have a busy day. I requested that he ask off, which of course, he did without hesitation. However, he is still unsure about when to tell people where he works. Most of my coworkers already know, but that is because we are pretty close and I think (in part) because I am a woman. David is different in regards to this and I respect that, and understand, but at the same time he is going to have to tell them eventually. If any other CDH moms, or anyone for that matter, have any advice on when he should do that, I would appreciate it. Otherwise, I am keeping my spirits high and trying to remain very positive as I believe that Max can tell when I am sad and happy, so staying happy has to be good for him. :-) I have heard from some other mothers who have experienced what we will be going through over the next few months and am looking forward to hearing/reading more about their stories. David and I really appreciate everyone thinking of us and little Max. I will likely update after our long day at the hospital next Wed.

Tuesday, October 21, 2008

Learning about CDH

Last Friday I went in for my 19 week ultrasound and was told that baby Maxton may have CDH (congenital diaphragmatic hernia) and that I would need to see a specialist on Monday. Unfortunately, this was the second scare we had during pregnancy. At 11 weeks, we were told that Max had a cystic hygroma and we were advised to take a CVS test. The CVS came back normal, which we were very excited about. However, deep in my gut, I still felt like something was wrong. Unfortunately, I was right and Max was diagnosed with CDH yesterday. Since Friday I have been reading all I can about CDH. Basically, right now it appears that Max's stomach and possibly part of his liver are occupying his left chest, which has caused his heart to move to the right side. This is caused by a hernia or hole on the left side of his diaphragm. The main problem will be with Max's lung development, which is due to the fact that other organs are invading the lung space which doesn't allow them room to grow.

David and I are both very hopeful that our little man will do just fine and are very excited to be his parents and help him through all of this. Most likely, after Max is born, he will be placed in NICU and will be monitored until he is stable enough for surgery to fix his hernia and move the organs back to their right place. This is typically a few days or a week after birth. Max will then remain in the hospital for several weeks to give his lungs time to develop. Luckily, we found this problem early and are able to get good prenatal care. I was told that Max (and I) will likely be started on steroids to help aide his lung growth. I am meeting with a surgeon on Wed. October 29th to discuss Max's plan of care.

We appreciate your support and thoughts during this difficult time. Luckily, we are blessed to have a good team of doctors at Maternal Fetal Group and look forward to meeting some of our new doctors at Vanderbilt next week. Check here often for updates as it will be easier for me to update here than to email everyone. We appreciate you all!!!