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!!

Wednesday, November 26, 2008

Doctor's Appt.

Today I had another appointment at Vanderbilt. This one actually went better than the last and I was/am more comfortable with them. I talked with them about Dr. Piper wanting me to find another OB which they thought was odd, but called their private practice and got me in with them. I had an ultrasound and everything is still looking the same as last ultrasound. The only thing new they talked about (but said was present on last ultrasound) is that there is something behind the heart on the right side that is showing up cloudy on the ultrasound. The doctor said it could be bowel that has made it that far over and kind bunched up, or it could be lung tissue. She said it didn't look like normal lung tissue and that she could see some normal looking lung tissue next to it, so she wasn't sure exactly what it was. She said that an MRI later in the pregnancy would likely tell us what it is, if it is still there. She said they would watch it, but not to be too concerned. I did get to see some pictures of Maxton's little face. :-) He looks so cute. We also got a good profile picture of him. He was waving his arms all around during the ultrasound.

After meeting with the doctor, I met with the a geneticist. I would have liked for David to have been there. We were supposed to meet with this person last time but she had to cancel. They had said they would reschedule but didn't tell me they had scheduled it for today. Anyways, we talked about the possible causes for CDH and she explained that Max may need some genetic testing after he is born if signs of other things are present. I was already aware of this so there wasn't too much new information there. I did like talking with her and trust that if there are other issues that we will be well informed. That's it as far as they appointments go. Nothing much new.

On another topic, I am trying to decide whether or not to take birthing classes. I'm not sure how I feel about them. I don't think that David will like to go, just not his thing. Also being surrounded by mothers with a normal pregnancy and being asked alot of questions doesn't seem too appealing. However, I always thought I would do birthing classes, so I don't know. I guess I need to decide soon because it is almost that time.

Well, I hope that everyone has a good Thanksgiving. This year has been difficult for us between trying to move to KY and not getting jobs that were very promising to learning about Max's condition (not to mention the other scary things we had to go through during this pregnancy before the CDH diagnosis). However, we need to remember all the things we are thankful for. I am planning to go out and buy a nice book that we can use every year to write some of the things we are thankful for. I heard someone talking about this tradition on the radio and I think it sounds great. :-) I am trying to find all kinds of traditions to start so that Max will have things to look forward to. If you have any traditions for the Holidays let me know- I might steal them. :-)


Wednesday, November 19, 2008

Goodbye to another doctor

So today I met with my regular OB doctor only to be informed by her that although Vanderbilt had suggested I continue routine care with her, she thinks I should go to Vanderbilt. She said that it would make financial sense to have everything at one place and while I could understand this, I think it may have been because she couldn't deliver me and wouldn't be getting that money. So, I suppose I will just suck it up and go to Vanderbilt for everything. I was hoping to avoid this as I have heard they aren't all that friendly there (or timely) but hopefully next Wed. my appointment there will prove otherwise. I wasn't particularly attached to this OB but at least I could get in and out relatively quickly.

On a better note the OB did tell me some stories back from her days delivering at Vanderbilt before she switched to another hospital. Now, I am not sure if this is true or if she was trying to make me feel better about CDH, but she claims that she witnessed one incident where she and others were sure the baby had CDH. She says that there were multiple ultrasounds that were all indicative of CDH and that the diagnosis was made. However, she says that when the baby was born, the condition was resolved and there was no CDH present. Obviously, this was exciting. I am not saying that I think this will happen in Maxton's case... but it is something new to pray about. It would be wonderful if this could happen with us. Again, I don't want anyone to think I am in denial or anything, just thought I would share. :-) (she also told me of some other stories where ultrasounds indicated things were wrong and then the babies were born fine).

Lastly, I wanted to let everyone know that a couple of weekends ago my father and I recorded a Christmas CD with me singing several songs. I think we did 8. I am in the process of duplicating them and plan to take "donations" for them to help pay for Maxton's medical bills. (apparently CDH babies are called "million dollar babies". we do have health insurance but it isn't the greatest. if there is anything raised that we don't use for healthcare will be given to some CDH organizations). For $10 ($12 if the CD will be mailed) you can get an Ashley Christmas Album or whatever I decide to call it. I had a lot of fun doing this and even though it is Christmas music, I plan to also play it for Max while he is in NICU. I figured that this was something I could do for Max now and really enjoyed it. Anyways, if you are interested, let me know at :-)

Thanks again for reading and for prayers and thoughts and those doing lung function chants (those not doing lung function chants should start. :-) ). David and I (and Charley Dog) really appreciate everyone.

Monday, November 10, 2008

4 months

So I just realized about an hour ago that Maxton will be here in 4 months... well his due date is 4 months from now, but they are planning to induce so he will probably be here in less than 4 months. That is CRAZY to me! It's scary to think about how different my life will be in such a short period of time. I am definately excited but also terrified. I am trying to be strong and think I am doing good with everything, but I still have days where I am so scared for Max, and for David and I. Anyways, just wanted to share that little Max will be here soon... well, it's soon to me. :-) I hope by then his little lungs are ready to fight (and maybe aren't so little. :-) )

Monday, November 3, 2008

Goodbye Maternal Fetal Group

Today I had another MD appt. at Maternal Fetal Group. They have been with me through the possible hygroma and the CVS test and now this. I know I only went there a few times, but the doctor there was my favorite and I will miss him. Today they did a scan of Maxton and it showed that the the stomach was up and the liver was definately down for right now, which is good.. lets hope it stays that way. They could also see lung on both sides, which I was very happy to hear. Otherwise, we didn't hear too much new today.

I talked with the doctor about my experience at Vanderbilt and when I mentioned my doctors name he said.. she is really knowledgeable but a little cold, which was the same impression I got. He said he doubts it will get better but to know that Max is getting the best care (even though the customer service may not be the best). Like I said.. I am sad I won't see Dr. Lombardi again, I really liked him and how straight forward he is.

Thanks for the support guys! I really appreciate it. I have been a little drained emotionally lately dealing with all of this. I think I am doing pretty good though, trying to remain very strong so that Max can feel strong too. It's so nice to feel him kicking in there.. it's almost like he is trying to reassure me that he will fight. David and I are going to Ky this weekend, which will be good. I am actually planning to record a Christmas CD to try to take donations for to help offset some of our medical bills. I think I will really enjoy this as it is something I have been talking about doing for a few years. I'll let everyone know when it is done!! Here's to hoping this week goes by fast...

Saturday, November 1, 2008


I wanted to write a special blog for Global CDH. I found them through my facebook page and was contacted by someone from their team asking our address so that they could mail us some CDH awareness bracelets and pins. I sent them our address (my husband wasn't too sure about it) and we got our bracelets and pins on Friday. We also received a very nice note and a $50 gas card. I cried when I opened the box. It was such a nice gesture and we have been contacted by so many wonderful CDH families, I was just overwhelmed by the amount of support that we have received from strangers... strangers who are quickly becoming family. I just wanted to make everyone aware of Global CDH and their organization. Thanks Global CDH!!!!

Next, David and I have begun registering for items as we have decided to still have a couple of showers. I am wondering what types of things I need to be registering for. I thought some CDH moms might have some good suggestions that aren't the typical baby registry items. If so, you can post them here, or email me at I would really appreciate it!!! :-)

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!!!