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. :-)

HAPPY THANKSGIVING!!!

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 Ashleynaye@aol.com. :-)

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.

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. :-) )

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...

Blessings

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 Ashleynaye@aol.com. I would really appreciate it!!! :-)

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!

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.