Week 35

week 35

So far week 35 has proven to be yet another emotional roller-coaster like other weeks.

This week was yet another week of many, many doctor's visits.  We had our regular check-ins on Monday and Wednesday with our high risk doctor.  On Monday, he spoke with our neuroradiologist and confirmed that we could reasonably carry the baby until 39 weeks and that we are safe to deliver at our hospital Kennestone.  Therefore, on Wednesday when I went to see my OB she was already working on booking our C-section for a week 39 mid-morning slot. Mid-morning is chosen to avoid shift change and so the horrible Atlanta traffic can be reasonable in case baby girl needs transfer to the downtown Children's.  Our doctors did agree that our daughter could possibly be born at 39 weeks with minimal complications and/or minimal heart issues that would be easy to manage with a short stay at the NICU at Kennestone and then potentially discharge to home within a few days.  This was a really exciting potential and made us feel really hopeful for the chance of starting out our days as a "normal" family with a lot less medical involvement from the onset!  I am also really encouraged to be able to have my OB deliver our baby because she has been such a tremendous advocate for us and is working so hard to make sure all the right people are in place when we go to have the baby.

Tuesday we were able to meet with a pediatric neurologist, Dr. Berenson.  He apparently has tremendous experience treating neonates with brain issues.  He was very frank with us and expressed that the damage is extensive throughout the left side of the brain.  Therefore, our baby girl is very likely to experience motor weaknesses and/or paralysis on the right side of her body.  He also expects a high likelihood for seizures.  He assured us that we will start therapeutic interventions proactively within the first month of her life.  He also expressed that seizures can often be controlled with medicine or surgical intervention.  He did express tremendous hope in the fact that the right side of her brain looks completely intact.  He feels that the healthy right side of the brain is already trying to do rerouting and help improve her intellect by making up for the left sided loss with the healthy tissue on the right side.  Overall, this information was not surprising but of course it is terribly hard to hear.  We keep wanting to hear "that everything will be fine" so anything other than those words still sting even though we KNOW everything won't be fine.  To stay positive from what Dr. Berenson said we are very hopeful that she will have minimal problems with intellect and speech.  This would be amazing since we just want her to have a good quality of life and a chance at an independent adult life.

Wednesday when I saw my OB, I was experiencing considerable swelling of my right lower leg and right hand which I had not experienced previously so my doctor was worried about the unilateral swelling and felt best that I get it checked out.  Luckily Heath has an "in" with the vascular doctors since those are the guys he works with everyday.  They snuck us in quick and scanned my arm and leg for blood clots.  The test took only about 10 minutes since we were doing it off the books and luckily it came up clear! So I just got to go home and prop my feet up!

Friday was our regular follow-up with the pediatric cardiologist.  If you remember from a previous post, the cardiologist had pushed our appointment out by 2 weeks because baby girl had been remaining so stable.  This day he spent a lot longer looking at images and then spent a lot of time doing measurements prior to consulting on the results with us.  We learned that he had actually called another pediatric cardiologist down at the downtown Children's hospital to consult on our daughter's findings.  He felt that the heart had definitely enlarged, the right sided heart failure had gone from mild to a definite moderate state and that her tricuspid valve was experiencing increased regurgitation.  Based on these findings he made it clear that she will not be able to stay in utero until 39 weeks.  He feels that 37 weeks would be good because that would be considered term but I got the feeling that she might need to come even earlier than that.  He expressed that she will be sick when she is born and gave me the feeling that she will definitely need to transfer to the Children's hospital downtown. He was going to put in a call to our high risk doctor and asked us to come back in 1 week.  We see my high risk doctor again on Monday and I suspect we will have a much sooner delivery date to discuss at that appointment.  Based on the current condition of her heart, the doctors need to start deciding whether she is safer in or out at this point. As you can imagine, this is certainly not the news we wanted to hear.  Again it is not at all unexpected and the doctors had warned us of this but it is the kind of news that keeps knocking us down from that pedestal of high hope that we keep striving for, the one where we hope for the best possible health for our daughter. Overall, we still feel relieved that the doctors are monitoring her condition and making the best medical decision for her overall well being.  We know that even if she has to come in January that she is going to be surrounded by the best possible doctors to give her the best possible outcomes.  

I think she just wants to get here in time to cheer on the Packers in the Super Bowl!!  She sure was cheering a lot against the cowboys!  She'll hopefully be cheering hard again against the Seahawks tomorrow!

In other news we have gotten a lot closer to getting her room ready.  She now has a crib, mattress and all clean clothes ready to go!  Her dresser and book case were custom made this week and we will be picking them up this weekend!