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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.

Thursday, December 18, 2008

Will we ever get a break?

Today I went to Vanderbilt for some more appointments. I was scheduled to see the high risk OB at 2, a fetal echo at 2:30, and then my regular OB for my glucose test at 4. I never made it to the glucose test because the other appointments lasted forever. I suppose I will have to call over there this morning. Someone at the doctors office was supposed to be calling and get back with me but they never did.
The first appointment went okay- except for the fact that it was already 2:45 before I was seen. The cloudy spot behind the babies heart that was there at last ultrasound was not there today and the OB could see normal lung tissue. However, I asked what his lung head ratio was (since they have never said) and she told me they don't measure it everytime- only my first visit. She said in October it was .5 or .6. I was pretty suprised by this number because she has also told me that his case doesn't appear to be one the most severe, but I know that number isn't good. She said not to worry about it because the latest research is showing that LHR is not as a good a predictor of outcome as it once was, but of course, I was pretty upset. Then, she also told me that my amniotic fluid levels are starting to get high. This is of concern because sometimes CDH babies have problems sucking and can go into preterm labor because of the fluid level. She talked with me about watching for signs of labor (though never told me what the signs were- luckily I have already read about it and know) and told me that if I am having any signs to come in and they can drain some of the fluid off.
I made it to the fetal echo around 3:30. These doctors were very nice and took time to explain everything that was going on, which I appreciated. Unfortunately, I never hear good news when I am at the doctor and this was no exception. Maxton was diagnosed with possible coarctation of the aorta. Basically, this was diagnosed so that the doctors would treat him after birth as if he has it, but the doctor stressed that she really wasn't sure because little Max would not move his arm out of the way so she could get clear pictures of the aorta. Maxton's left ventricle and atrium on his heart are smaller than the right- a little smaller is normal, but his appeared to be alot smaller. The doctor explained that this could be because there are so many things in his chest that it just appears to be smaller due to things pushing on his heart. However, with the smaller side and her inability to see all of his aorta, she decided it would be best to go ahead and treat him like he has coarctation so they will be prepared after birth. Basically, this means that after his surgery to repair his diaphragm, he will also have a surgery to repair his heart. Not what we were hoping for but at this point I am learning to roll with the punches, so to speak. I left this doctor at 5:30. It was a very long day.
While typing this, I received a call from Vanderbilt stating that I can come in for my glucose test tomorrow at 3:15. So I will know if I have gestational diabetes or not then. I am worried that I will but my mom checked my fasting blood sugar last week and it was 88- so maybe I won't. I am not sure why I feel like I will, just kind of a feeling. Anyways, I guess I will be updating more tomorrow.

6 comments:

Jaime Smith said...

I feel for you, if you have read any of posts I went through the same things. You feel as if when you go, what could they possibly tell you next. Hang in there and stay positive, they can not see everything on US and they never seem to be 100% right about everything going on with our babies.

Praying for you (and hope your glucose test comes out ok).

Jaime Smith
http://www.caringbridge.org/visit/ryannsmith

Jonathan and Sarah said...

I just found your blog through another CDH family. Our son had a right sided DH and is now 2 years old. We will be praying for you & Baby Maxton!

mummy to angel SKYLA said...

Hi there, im sorry that you got the news about the coarctaion. Like the Drs said they couldnt get a clear picture so try to stay positive. My daughter also had CDH and Coarctation. She also had a small hole in her heart. My daughter had her coarct repaired on day 3 and then the hernia repair on day 9. She did really well after that but it was all the other problems like the pulmonary hypotension and infections that started to creep up on her. I will keep praying for Maxton and your family. Hang in there and try to stay positive. Have a Merry Christmas and a safe new year.

Kristy, mum to angel SKYLA, LCDH
13/10/07-13/6/08

http://skylacdhbaby.blogspot.com

Marion said...

I know exactly how you are feeling. It is a roller coaster ride. If you need anyhting or a kind ear, contact me at marionacord@hotmail.com.

Tracy Meats said...

From experience, ultrasounds can be deceiving and are not 100% accurate. Remember to stay positive and continue to have faith for Baby Maxton--he is going to do amazing things. I hope your glucose test comes back normal today. I am so sorry that you had some difficult news at the doctor appointments--my heart goes out to you and your husband. I am praying for Maxton.

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

Brad, Kellie, Lucy and Baby Carter said...

Tracy is right--Ultrasounds are not 100% so try to remain positive. In utero, Carter was diagnosed with a coarctation of his aorta and hypoplastic left heart. We were so scared that he'd need heart surgery and repair surgery. As soon as he was born, the cardiologists did an echocardiogram and reported to us that his heart is normal--no coarctation and no hypoplastic left heart! Due to the defect, he said sometimes the heart can look defective on u/s but they just won't know for sure until he's born. Hang in there!