Two weeks after our initial high-risk appointment where the CDH was discovered, it was time for another one.
It's amazing how you can become an expert on something you've never heard of in just two weeks, but I really feel like a CDH expert now after reading so much on the internet and so many other blogs. I now am equipped with enough knowledge to know what kinds of questions to ask the doctor and I was very glad to finally have an appointment where I could get some answers!
Even still I was slightly terrified. Someone once said, don't ask questions unless you can handle the answers...and quite frankly, I wasn't sure I could handle the answers! I am surprisingly at peace regarding Makenna's condition, as I said in the last post, I know she will be okay. But one unpleasant answer could cause my little bubble of peace to pop and all hope to be gone.
Also, in general we haven't had any appointments that went well. Between the bleed, the cord concern, and then the CDH find, it seems as though every appointment is just set up to deliver bad news. We are doing a pretty good job staying positive through it all, but more bad news really was the last thing we wanted to hear!
Another cause for concern is the fact they wanted me to do an amnio. Around 40% of the time CDH isn't isolated...and the child will have another defect such as trisomy 13 or 18, so amnio is important to rule that out. In general this isn't that risky, there is a 1 in 1000 chance that you could have preterm labor or another complication; however, when your baby has a 1 in 3000 defect, 1 in 1000 suddenly seems a lot less impossible. At this point I was 31 weeks and rationally speaking babies survive at 31 weeks all the time...BUT, my baby can't be born here. If I go into preterm labor I will need to be airlifted to Gainesville immediately so that she can be born in a hospital that is equipped to meet her needs. This definitely added to the stress level I was feeling before this appointment.
After an hour drive to the doctors office, Rex and I arrived at the hospital for our appointment. They did another level 2 ultrasound and this time there was a T.V. screen on the wall in front of me, so I could see what was going on. The lady still wouldn't talk us through anything though...so I was left to make my own assumptions about the gray blobs I was seeing on the screen. Thankfully this one didn't take as long and within about half an hour the Dr. came in to talk to us.
TIME FOR ANSWERS!
We learned that Makenna's CDH was on the right side (only happens about 12-15% of the time) and that some of her bowel and maybe a part of her stomach is through the hole. Her heart has been shifted slightly to the left and has a little fluid around it, but in general it appears in decent shape so far. The doctor seemed more positive in his demeanor this time than he did when he was telling us about it the first time, but isn't a CDH expert and won't be doing the surgery, so we have to wait until we meet with the pediatric surgeon to get a better idea of her prognoses.
Once we were done talking, it was time for the amnio. He disinfected my stomach and then tapped his finger on my stomach so I would know where to expect the needle to be inserted. He then inserted the needle, but it was so skinny I couldn't feel it a bit. It took about 30-40 seconds for him to fill two syringes with amniotic fluid and then he was done! I survived!
Next I had a Rhogam shot because my blood is O-, some blood drawn, and then I had to do a non-stress test for half an hour to be certain Makenna was handling everything well. She was so active during the non-stress test...my stomach was rolling and moving like crazy. It was really fun to watch. Her heart rate was consistently about 140, which is great, and the machine didn't register any contractions....so we both passed! :-)
After being poked and prodded repeatedly for 90 minutes, I decided we should go to Olive Garden, so we did! We had a lovely meal together and I think Makenna appreciated the meal as well. It was nice to be able to breathe a slight sigh of relief that her liver was currently down and the amnio was over. Now to wait for amnio results and for our meeting with Dr. Kays in Gainesville next week!
Olivia, Makenna sounds like a strong little girl, and before you know it, you will be holding your precious baby in your arms. I'm sorry you have to go through these rough patches, but please know that I will be praying for health, strength, and joy for you and your family.
ReplyDeleteDarlene