2 weeks before Jack

This post originally dated 08/12/10.

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Earlier this week we had a visit set up at Le Bonheur. It was tough (for several reasons). We definitely got what we wanted - to see the place, to know where to go, to see the units where Jack will be staying, and to meet some of the staff. I was already emotional enough going in that morning, from general fatigue and really high stress levels with everything going on to prep for Jack... by the time we got to NICU, I think my body just had it with couped-up stress and I just broke down, sending the nurses in search for Kleenex.

We saw both ICU's (cardiovascular (CV) and neonatal), the 'bunny' room (pre-op, where kids usually get a toy before going in the surgery), the waiting room for parents, etc. Michelle (the CVICU nurse that took us around) was spectacular - very thorough, detailed, answered all the questions we had, routine or not. A big plus was her taking us to the surgeons' office. Dr. Knott-Craig was not there (out of town) but we met several of the other team members, including Steven (Dr. Goldberg) who, as it turns out, had TGA as well and went through surgery in the 70's. The conversation with him and other surgical staff was my personal highlight - Steven was so firm and optimistic about Jack's prognosis that I felt immediate relief. He spoke of the method used in the surgery, especially on coronary arteries ('buttons'), of excellent prognosis for kids for whom total transposition is the only defect - including normal life expectancy and activity levels, and of the progress made with the Arterial Switch Operation just within the last few years. I was surprised to hear such a definite, strong, and positive opinion (doctors are usually, and understandably, very cautious) but I appreciate that everything is contingent, and that he spoke of what we currently knew about Jack. He also confirmed how blessed we are to know this ahead of time - he mentioned that up to half of kids with this defect go undiagnosed even with a 20-week ultrasound, and then chaos ensues after birth, and valuable time may be lost. I really need to send a huge Thank You note to the ultrasound technician at Dr. Bannister's office - Wanda, I think - who first saw this in Jack, which gave us a chance to prepare for all this.

Jack will likely go to cath lab to have balloon septostomy first (to create an opening between heart atria and allow his blood to mix and have acceptable oxygen saturation levels). From there, he'll stay in CVICU until surgery (some time... soon thereafter depending on his well-being) and will be brought back there afterwards. When considered stable, he may be moved to NICU for further observation. They do have lactation consultants on staff as well as place for pumping so he can have breastmilk as long as he can be tube-fed or, later, start to eat.

In total, it sounds like we should be planning on a couple of weeks of hospital stay - shorter if everything goes ideally smooth and he recovers like a champ. We'll figure out who stays there when as that time comes... I think we're both planning to being there quite a bit, though Michelle warned us about lack of sleep and being too fatigued - if he's stable, she suggested we spend the night after the surgery at home just to get rest, and come back the next morning.

The surgeries take place early in the morning (after 7am) and, according to Steven, on average (without complications) last 5-6 hours.

Day after Le Bonheur's visit I had my last (as it turns out) appointment at UT high-risk group (everything looked stable, and Dr. Scheider was OK with 25-ish as the proposed date), as well as my regular appointment with Dr. B. She says my cervix is a little softer (about a centimeter on external) but Jack still hasn't descended (thank you Lord - I cannot possibly imagine suddently going into labor with no one to watch Maya until Mom comes on the 20th, and with all the work still going on at the house!). I have two more appointments scheduled with her (18th and 23rd), and induction scheduled for 9pm on 8/24 (Tuesday night) with hopes that he's born early in the day on the 25th. I really, really hope he holds out until then - I know I'm pushing time limits everywhere, at work and at the house, but I really need this time to finish everything up and be able to just concentrate on him and him alone.

I've really taken up too much to do in these last few weeks... Pretty worn out physically from, well, pregnancy and the heat (and keeping up with Maya)... and emotionally. And when I sit down to write a list of things I still need (or want), it really looks overwhelming and unachievable. Lord - please let me coast through next week and check off things that will no longer hang over me when done (locks, paint, deck, Maya's furniture... tickets + licenses... windshield... moving furniture in our room to accomodate Jack's temporary quarters... steam-cleaning the carpets...). I can do all things through Christ who strengthens me.