So much has happened since the last post in terms of emotions but not terribly much in terms of actual new events that it’s hard to know what to write about/where to start. So, I think I’ll catch-up with the events today and try to write about the emotions (the harder part) over the next few days.
The only major baby events were the 2nd opinion and our visit with the pediatric cardiac surgeon who will be doing Wal.nug’s surgery. (His or her in utero name has evolved from Nugget to Wal.nug. My sister-in-law started calling him (or her) Walter because she thought that was a strong name that suggested a good long life. Combine that with Nugget and voila…)
After much debate, we decided to get one…not so much to confirm the TGA diagnosis but to make certain that there is really no sign of a rhabdomyoma. We started with the 2nd major children’s hospital in the city. They turned out to be quite uncooperative and wouldn’t even speak to us unless we provided an order from our doctor and full medical records. We had hoped to get the opinion somewhat “stealth” – mostly because of my weird issues around not offending doctors. (I know that I’m going to have to get over this now that I have a little guy I need to protect.) However, after the first reaction, LG phoned our OB’s office, and while he said they seemed a little surprised, they did provide us with another local pediatric cardiologist based in the suburbs. She agreed to see us. Even better, she comes into the city once a week and practices at the same office where we did our initial Level 2, so she was able to see the original films and compare her reading against that. In great news, she agreed that no rhabdomyoma was present, so we can finally stop worrying about tuberous sclerosis. She confirmed the diagnosis of TGA. Also consistent with our first consult, she told us the heart was too little to make a definitive diagnosis on anything else at this point. We do another fetal echo this coming Monday and another at 33 weeks so hopefully that will tell us more, but all the doctors have said they won’t know with true certainty until the baby is born and they can see the actual blood flow/oxygenation patterns. That leaves a lot of time for worrying.
Meeting with Surgeon
This turned out to be a tougher meeting than I expected. (I think LG had more realistic expectations of the relative toughness.) Even going into Children’s Hospital – a building both of us have walked by a million times but never imagined ourselves actually in there because of a sick child — our sick child – was an eerie feeling. The surgeon seemed very capable and talked about the hospital’s experience and success rate with the arterial switch procedure. LG felt like he was getting a bit of a sales job, but I took a measure of comfort from the facts and statistics. What surprised both of us was that when we asked how many of these had been done, he said about 230…over 30 years. That was a stark reminder that this is anything but routine surgery. Both the surgeon we met with and the head of the department will be in the actual procedure. Between them, they’ve performed nearly 150 of these surgeries, so I feel like we’re in good hands. The doctor was direct with us in that this a surgery that they know how to do and have very high success rates, but that it is technical and complex especially given the size of the baby’s coronary arteries (which will all need to be reattached). In a full-term baby, he said they are approximately the diameter of the opening of a ballpoint pen (read: very very tiny).
They also took us on a tour of the NICU and the PICU. I’m delivering at a different hospital (more on this in the emotion post), so the baby will be immediately transported across town to Children’s where he or she will go to the NICU to be stabilized. The baby will stay there until surgery – probably on Day 5 or Day 6. After surgery, the baby goes to the PICU as that is where they care for all post-op cardiac kids. Once Wal.nug is cleared from a surgical sense he or she will either be discharged or go back to the NICU if there are feeding issues (which are common in these kids apparently).
I’ve read so many gut wrenching accounts of kids who started their lives in NICUs so I felt prepared in concept but not in actuality. Walking into the place knowing that your child was going to be relying on this place to live was a terrifying feeling. Knowing that our child is going to be alongside other children fighting for their lives… I wanted to escape the minute we walked through the doors. Somewhere between now and when Wal.nug is relying on his or her father and me to provide strength and protection, I’m going to need to find more internal fortitude.
Where we are now…
Pregnancy-wise everything is going along normally – which is just about the most blessed word I can imagine given how everything started. I passed my 1 hour gestational diabetes test, which was the first test through this entire pregnancy that didn’t plunge us into a place of worry and distress. Blood pressure is good, weight gain is good if I’m training to be a sumo wrestler (somewhat less than good according to my doctor’s guideline, but eh…), baby’s heart rate is nice and strong, and I’m finally starting to feel Wal.nug kick pretty regularly.
So, those are the facts…the emotions behind everything are a little less straightforward as we bounce between excitement and anticipation to the normal fear felt by all new parents to the abject fear that our child may not make it through the surgery or may not have the smooth recovery we’re all counting on.
Through it all, though, I’m grateful to be in this position. Blessed to be in a place to worry about our child. The all encompassing pain of infertility is still very close to my heart.
Filed under: Heart Stuff, Infertility General, Pregnant! | 8 Comments »