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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!

4 comments:

Fer said...

I am glad you appointment went well. I'll continue praying for Baby Maxton.
Fer
CHERUBS Mexican Rep.

Liz and Shane Nelson said...

We had a similar appt. where we had to sit and wait for 2 1/2 hours for a Dr. I am sorry that you had to experience that also. It's great to hear your appt. went well. I love that Maxton gave you the thumnbs up, thats Awesome! Nayeli gave us a fist up! We are praying for you and Maxton.
Liz and Shane

Kenny and Jennifer Miller said...

I found your blog through Liviana's. Just wanted to give you hope and encouragement. Our baby, Sofia, was born in March with severe LCDH and is now home and thriving. Check out our story at www.babymiller08.blogspot.com. May I put a link to your blog on ours? Please feel free to add us to yours. We'll be praying for you.

Jen Miller

Tracy Meats said...

I am glad to hear that baby Maxton is doing great!! I do want to say after reading your post, you need to feel 100% comfortable with your doctors, whether they are yours or there for baby Maxton. From my experience with students, "doctors in training" I have never had the lead doctor be talking to them more than the patient. I have had them in the room, listening and observing and asking questions, but they should never take the one on one attention away from you and the doctor. Next time tell the doctors you are not comfortable with the students being in the room and the conversation centered around just teaching and not interaction with you. I hope you feel much more comfortable at your next appointment. The NICU sounds very nice--I would have loved to have Ian in a private room.

Many continued prayers for Maxton--he continues to get stronger everyday. Thumbs up--very cute!!

Hugs,
Tracy Meats - WY and CO State Rep. for CHERUBS and mom to Ian, born with a LCDH on 4/3/04.