2nd UCSF Appointment - NICU tour

Today we went to UCSF for my follow up appointment. I had another ultra sound and AJ is approximately 3.7lbs now. He is growing quickly! After the ultra sound we met with a social worker and a neonatal specialist to discuss the care for AJ after birth. I guess they have to be very upfront but it sure does sound hopeless sometimes when they talk. I realize my baby has a very severe CDH but it would be nice to hear just a little bit of hope. Towards the end of the conversation the social worker started to come around and sound more positive. I think they finally got the picture that I'm not trying to hear the negative. I know the odds and have mentally prepared myself. I now want to focus on what can be done to save my child!

When we toured the NICU, we were surprised. It wasn't as bad as we thought. I have spent so much time reading about CDH babies that are real sick so I was prepared to see them in person. There were two babies with CDH in the NICU today. One baby was on the ECMO. He was lying there lifeless because while on the ECMO, they give the baby medicine that basically paralyzes him so the lungs can rest. The other baby had been there for 10 weeks. He was born premature and only weighed 3.5lbs at birth. Today he was 7lb 4oz. and had a nasal cannula and feeding tube. He looked great! I was shocked that a CDH baby born so soon would look so good. I'm not sure the severity of either baby as the parents weren't present to ask questions.

After the tour I met with one of the fetal team members. Unfortunately they had two emergency fetal surgeries today so I didn't get to meet more of the team. We discussed the date I would come in to be induced, March 23rd at 8pm. Hopefully all goes well and I will be delivering March 24th. I will be 39 weeks at this point. I hope to stay in S.F. the week prior just in case I go into early labor. The social worker said I wouldn't check into the Ronald McDonald house until after delivery. I have to check with her again to see if there is any way I can stay the week before as well so I don't have to pay for a hotel. I'm sure it'll depend on availability.

 Here's a video clip of AJ yawning.


Definitions:

CDH - Congenital Diaphragmatic Hernia

LCDH - Left Sided Congenital Diaphragmatic Hernia

LHR - Lung to Head Ratio

NICU - Neonatal Intensive Care Unit

ECMO - Extracorporeal Membrane Oxygenation - A heart-lung by-pass machine that takes over the work of the heart and lungs.

NASAL CANNULA - A special tubing that is used to give oxygen through the nose, making holding and feeding easier.

NG-TUBE - Nasogastric Tube(aka feeding tube) - A plastic tube inserted through the nose into the stomach or intestines to aid in digestion when baby cannot eat by mouth.

30 weeks - baby shower planning

30 weeks now...WOW!

I remember with my other two children, my pregnancy seemed to last forever. Much different experience with this little guy. Time is just flying by! I assume that is because I know he is safe inside me and a part of me doesn't want him to come out because I know that is when all the scary stuff comes. Well I can't think about that. I need to enjoy these last two months. I've decided to have a baby shower next month, Feb. 27th. Even though I have family members willing to put it together, I can't help to get involved since I enjoy planning events. Plus, this will be my first baby shower where I know the sex of the baby. It's going to be a lot of fun!

A night in pain - not related to pregnancy

Last night was a rough night. My stomach started burning and then the pain moved into my back. I couldn't sit or stand comfortably. All I could do was pace and take deep breaths. I took some Tylenol and tried to relax but my body just wouldn't let me so I decided to go to the ER. Being pregnant does have it's perks! In the ER I was seen right away, nothing I've ever experience before! I was given some pain meds which eventually kicked in and calmed me down. Then the OB nurse came in to check on baby. I've had this severe stomach pain twice prior two being pregnant but in the last week, it's happened twice! Before I was given meds for an ulcer and then had an Upper GI but by the time I had the Upper GI, either the meds worked and got rid of the ulcer or there wasn't ever one and they just contributed it to Acid Reflux. They've even checked my gallbladder in the past and it wasn't that either. This time the pain was worse, maybe because baby is pushing on things, I don't know but it was unbearable and I never want to feel it again. The doctor came in and basically said stomach pain could be a variety of things and gave me some mylanta......typical ER experience for me! The burning was still present even though the pain meds helped the severity of the pain, especially the back pain. He then gave me a pill that prevents stomach spasms and another dose of mylanta, this time coated with some numbing substance. These seemed to help and I was able to rest. Good news is baby was okay through all of this. His heart rate was normal and I wasn't having contractions :). I knew it wasn't the baby but didn't know if the severity of the pain I was in could effect the baby. Guess I'll add this problem to the list of appointments I need to make. Fun never ends.....

Where to deliver? Who to trust with my baby's life?

This week has been rough for me as I'm trying to decide where I want to deliver. Earlier in the week I called UCSF and Stanford to get stats for their 2009 CDH deliveries. The nurse at UCSF was able to give me stats right away. She said last year they delivered 20 CDH babies, 11 survived and out of the 11 only 1 had an LHR of less than 1.0. This information was not very uplifting. The nurse at Stanford said she would get back to me and it's been two days and still not response :(. I am also trying to get into Stanford to meet with the pediatric surgeons, however, they said they are waiting for approval from my insurance. My insurance covers me at both hospitals so I'm not sure what the hold up is but this is definitely swaying me away from going to them.

I also emailed a doctor I read great things about, Dr. Kays, who is the Chief Pediatric Surgeon at Shands Children's Hospital in Gainesville, FL. I know this is VERY FAR from where I live but his stats show a 92% survival rate for CDH babies. He emailed me back stating he was in the process of bringing all of their data up-to-date (over 200 cases) but gave me the following info:

Last death in Aug '09, a child with chromosomal defect who was not repaired and had support withdrawn. Death before that was a 32 week preemie with CDH. Of their last 34 consecutive cases, 30 patients survived to discharge. These patients had the full gamut of severity from mild to very severe. He also stated he does NOT select his cases. 95% of his patients are prenatally diagnosed, and they take everyone who wants to come, mild, severe, whatever. Therefore their survival data are not biased by selection.

Now who could not look into this? It makes it so hard having this information on my shoulders. On one hand I feel like going to Dr. Kays will give my baby the best chance at life, on the other hand, UCSF is a wonderful hospital and is capable of making sure my baby has the best care. Going to Florida would mean coming up with money to go now for an initial consultation and then going back in a couple weeks to live for however many months it'll take to get my baby healthy enough to travel home. I also have my other two kids to think about and who need me and family/friends I will need for support as well.

What does a mother do? I'm so afraid that if I choose UCSF and baby doesn't survive, I will be thinking I could have saved him by going to Florida.

Appointment with my regular OB/GYN & the High Risk OB/GYN

It had been a month since I last saw my regular ob/gyn. She went over my records from Stanford and said, "I'm so sorry Nichole" and she started to get teary eyed. Of course this set me off and we were both sobbing. She listened to the baby's heartbeat and went over some lab results I had. My Vitamin A and protein levels were low. She ordered some more blood work to check my glucose levels again.

I will continue to see her monthly until I fully transfer to Stanford and/or UCSF. I still need to tour the NICU facilities at both hospitals and meet with the pediatric surgeons at Stanford.

At the High Risk OB/GYN's office, they did another growth ultrasound. Baby is growing at normal rate, he's approximately 2 1/2 lbs now. I can't believe in just two months he'll be a full size baby! My stomach is going to really be popping out soon.

So far I've only told a couple close friends/co-workers at work (besides my boss) that I'm pregnant. It will be interesting to see how long I can go before it's just obvious. Who knows, I might be out on maternity leave before anyone finds out :). With everything that's going on, I haven't been enthusiastic about telling others. I try to stay buried in my work to prevent myself from crying. God knows I do enough of that at home. It's sad that I'm feeling this way but it's just still to hard to deal with.