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.

Tuesday, December 30, 2008

My first BPP

Today I went in for my first BPP. The woman who did it was very nice and explained everything in detail to me, which I appreciated- i love details. Maxton scored an 8 out of 8 which is apparently good. :-) My amniotic fluid level was still high. She said it was 26 today. I wasn't sure what that meant, but I think it means 26 centimeters. (normal is 5-25). Maxton was practice breathing which was nice to see. She pointed out how to watch for it and I got to see several "breaths". She also told me his weight right now is around 4 lbs. 2 oz. Just two weeks ago they told me he was 3lbs 1oz. I was kinda worried because I think the appt. before that he was 3 lbs, so I was glad today to hear that he is growing. :-) The lady also tried to get pictures of Maxton's little face in 3d for me. Unfortunately, I think Maxton was trying to break out. She said the he had his little face pressed up against my uterus. She gave me a 3d pic, but all you can see is his chin and ear and the a smooshed face against a blob (which is apparently my uterus). Once I get it scanned I will post it. He does have a cute ear, neck, and chin thought. :-) Today almost felt like a normal appointment. It was really nice as almost every appointment I have had since being pregnant I have been told about problems. The only concerning thing is that Maxton is still breech. He has about 9 weeks (or less if he decides he wants to come early) to get turned around right. I know he can do it! He's a fighter already- I can tell when he kicks mommy and wakes me up in the middle of the night.

Thursday, December 25, 2008

Merry Christmas!!!! :-) I just wanted to say that I hope everyone has a wonderful Christmas. We did most of our last night with David's parents because David has to work today. Next week for New Year's we will do Christmas with my parents. I hope everyone has a nice day. Last night we went to Maggiano's (a great Italian restaurant). We have gone for 3 years now at Christmas, so I guess it is becoming a tradition. We usually get all dressed up and go. I had to go out and buy a nice new outfit (all my dress clothes no longer fit). I thought I would take advantage of being dressed up to get a picture of the baby bump.. I told my mom I looked pretty, but like a big red Christmas ball. :-) All in all, it was a good night! We even got some gifts for Maxton. MERRY CHRISTMAS EVERYONE!!!

Tuesday, December 23, 2008

Finally a bit of good news!

So I got a call from my OB today and my diabetic screen came back normal. I was very glad to hear this... so I had a doughnut for breakfast. :-) Not really, but someone did bring in doughnuts to work today but I had already eaten. I just thought I would give that quick update! Hope all is well with you all.

Monday, December 22, 2008

10 weeks!

So Maxton will be here in 10 short weeks. It's pretty scary to think about how much is going to change between now and then, let alone thinking about what will happen after. I've been told that I will be induced around 39 weeks, so that is why it is 10 weeks and not 11. I am starting to feel prepared but it is also becoming harder for me not think constantly be consumed by thinking/worrying/praying for Max. I am trying to stop being fearful and remember that God is in control- I am not in control. There is nothing that I can do to change the outcome that God has planned. I'm trying to remain strong and keep my faith that and remember that Max is a perfect gift from God that was designed especially for David and I. 10 weeks... ah!!

Saturday, December 20, 2008

Alina is here!!

Just wanted to let everyone know that baby Alina arrived last night. Her family is from the UK and is one of the stories I have been reading (a link is on the right) She was born at 35 weeks and weighed 4.6 lbs. So far she is doing well and is obviously a fighter. It is possible that she will have her diaphragm repair tomorrow. Please pray for Alina and her parents Alex and Ingrid!

Glucose Test, BPPs, and NST's... Oh My!

So I went in yesterday for my glucose test. I decided that maybe if I got there a little early I could get out in time to beat traffic going back across town. I got my drink (which actually was really good- fruit punch) and drank it. About an hour later I still hadn't seen the doctor so they told me to go ahead and go to another building where their lab is and then come back. All in all, I was at the doctor for about 2 hours. I didn't find out the results from my glucose test ( I thought I would so maybe on Monday?). They also checked me for anemia at my PCPs request. I have been very, abnormally tired lately. I know I am pregnant but I get so tired so fast. On a good note my blood pressure was normal.

While meeting with the doctor he talked with me about doing BPPs, which are biophysical profile's. Apparently the high risk OB wrote in her note that I would be doing them once a week. He asked me when my first one was scheduled and I told him I had no idea what he was talking about, as no one had spoken to me about BPPs. After re reading the note it said something about him doing the BPPs. So, starting the week after Chrsitmas (I told them I couldn't start next week because of work) I will be going in for BPPs once a week.

Basically, A BPP will measure the babies heart rate, muscle tone, movement, breathing, and the amount of amniotic fluid. The NST (nonstress test) is part of this that does electronic fetal heart monitoring. To be honest, I am not sure if there is a difference between BPP and NST but he mentioned both- so there ya go.

I am worried about work and trying to get to all of these appointments but still completing everything that I have to do. Hopefully things will fall into place. For those not aware, I work with mentally ill people doing case management. I go to there homes and basically perform assessments or assist them with needs (like shopping, going to the bank, finding housing). It can be pretty stressful at times. I am supposed to see my clients twice per month and right now I have over 50 (though they do reduce down to 40 people to measure if I am meeting my stats). It will be hard missing work to go to the tests and I will probably have to work extra hard and late to complete everything. I am also worried about going on bedrest at some point. I am concerned that if my amniotic fluid is already starting to get high then I need to be taking it easy. I am going to try to...hopefully the first BPP will show the fluid is better.

I am apparently also starting to swell. Right now I guess I am not that swollen but earlier this week I must have been. I say this because I lost 6-7 pounds from Wed morning to Friday morning. I asked the doctor about this and he said not to be worried. So, I guess I am not.

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.

Tuesday, December 2, 2008

My New OB

So today I met with my new primary OB. I am not sure what the point of seeing two OBs is, but I will go with it. I have been told the high risk OB is really for the baby because I am not high risk, thus I need to continue routine care with the regular OB. My issue with this is that I will be paying someone big bucks to measure my belly with a tape measure and listen to a heartbeat that will likely be looked at on an ultrasound the next week. Nevertheless, I did like my new doctor. Despite being there for 2 hours, he was very nice and funny. I like humor and often need it, especially now. The only "bad thing" he had for me was that my blood pressure is starting to creep up. He thinks I should increase my dose of bp meds, which I will begin doing tonight. As far as appointment go, my next round will be on the 17th when I meet with high risk OB, regular OB, and also get a fetal echo. So.. that will be a BUSY day, but at least it is all on one day.

On another note I am having a few "bad days" lately. My mother says I am being negative but I feel like I am trying to be prepared. I have decided to read as much as I can about CDH, and yes, that includes the babies that don't make it. Obviously, I don't want that to be the case, but I do feel like I cannot think about it ever. My dad is alot like me and has also been reading other mother's blogs. I think he understands what a journey CDH can be. We were talking about it the other night- how for alot of babies the initial hospital stay is only the beginning. I don't really think the rest of my family, even my husband, completely understands this. And for now, that is okay.

I am really excited about moving to the new office at work. Since I am almost in my 7th month, people can really tell I am pregnant. It has been hard working in a big office because only about 10-15 people really know that there is a complication. The rest have no clue. It seems like once a day I have this conversation.
Person A: When are you due?
Me: March 10th
Person A: Aww, are you having a boy or a girl?
Me: A boy
Person A: Is that what you were hoping for?
Me: We didn't really care.
Person A: Yeah, as long as the baby is healthy that is all that matters.
Me: Umm.. yeah.

I HATE THAT CONVERSATION!!! What is even worse is that I am sure I have said those words as well. I promise to NEVER say "as long as the baby is healthy" again. You know, you never know what other people are going through and it hurts every time someone says that. I start to get jealous of the other women who are having healthy babies. I know that we will be able to give Maxton something that other mothers can't give him- our love, but I just wish that I knew what was going to happen. It's hard not knowing. I want to be excited about being pregnant, and most days I am... but some days I am so scared. I do feel like I am doing a good job remaining positive. I think I just needed to vent a little today. :-) Anyways, as always, we want to thank everyone for reading and thinking/praying for us. It really does mean alot!!