We’ve had second round visits with all of our doctors at this point, and all things considered, things are looking great! With the four doctors I now see (up from my original 1 OB) we have lots of monitoring, checking, and re-checking. Now at 27 weeks, I’ve found out that I’ll soon be visiting the OB every week, and perinatologist every other week to check on Wally’s growth and monitor his movement as he begins breathing exercises. Tets babies have a tendency for slower growth and low birth weight, and it is especially important that Wally is on the bigger side for surgery, as this aids recovery.
Some people have asked me about my more compact or apparently “smaller” bump and if Wally is growing ok. Not to worry – he is! My long torso and height allow for some fantastic optical illusion that I am somehow “littler” in the tummy department (which is total news to me). My OB assures me that I am measuring perfect for my weeks, and that Wally is in the 60th percentile for his age: around 2 lbs 2 oz and almost 14 inches long.
Our monthly trip to DC Children’s Hospital went especially well, and it was a treat to have Dan by my side. During our echogardiogram, Wally had the hiccups – which is probably the single most adorable thing I have ever seen in my life. I think I’m going to rock the whole doting mom thing. Likely to my sonographer’s chagrin, I couldn’t help but giggle every time I saw Wally hiccup, so we made quite the pair.
What we learned from Dr. Denofrio (cardiologist) this week:
1) Wally’s pulmonary valve is growing!
The artery is still small, and VSD (hole between chambers of the heart) is still there, but we are headed in the right direction. Our initial prognosis of “pink” holds, and Wally being able to come home from the hospital before his surgery looks like it may truly be a possibility.
2) Surgery time: between 1 -2 months after birth (likely around week 5 or 6)
Of course all this can change at the time of birth, and Wally’s need for surgery will be evaluated each week after he is born. Dr. Denofrio explained and discussed with us surgery options, and why she feels the 1 – 2 month mark is a golden window of opportunity for a full repair.
It used to be standard practice that Tets babies would receive a Blalock-Taussig shunt in the first few weeks of life, followed by a full repair around 8 months to 1 year old. Dr. Denofrio feels that the shunt (unless otherwise deemed necessary) is outdated, and simply adds in another surgery for the infant. Additionally, leaving the ToF unrepaired for up to a year brings on the additional hurdle of hypertrophy (thickening) of the heart muscle due to overwork. Other possible complications due to the shunt (tearing, backflow, etc) make the shunt option less than ideal.
By 1 -2 months a baby has learned to effectively feed and begun establishing baby routines. At this stage in life, a baby is unlikely to “forget” such habits post surgery. A surgery taking place too early, however, can lead to complications in feeding and development as the baby hasn’t had the time to establish these “routines” yet. Newborns have other hurdles when it comes to surgery as they transition from womb to world, making recovery harder and lengthier on their little bodies.
This again, brings us to the 1 -2 month time frame of when Wally will have his surgery and complete repair (so we can pretty well count on a November surgery). If at birth it is decided that Wally needs immediate intervention, that surgery will be a complete repair as well (no shunt) – for which he will be transported to DC Children’s for surgery accompanied by Daddy Dan.
3) We won’t be having any oxygen machines in our home.
Our doctors indicated that if Wally is coming come, he will be stable and not requiring extra oxygen or monitors. If he needs these things, he will stay in the hospital where he can be best cared for in the face of complications.
4) There are in-room pull out sofas in the CICU (Cardiac Intensive Care Unit) and the Cardiac and Kidney Step Down Unit where Dan and I can stay with Walter during pre and post op.
Showers are also available on site. We’ll have to evaluate our situation as we get closer to a surgery date, but it is comforting to know we can stay with Walter and be close to him. Ronald McDondald House is also an option.
5) Wally will need 4 – 6 units of blood to circulate through his body during the course of his heart surgery.
Due to limited timing and the number of donors needed (in the 30’s to find enough matches), we’ll be using the blood bank at Children’s. We are hoping that if Dan is a match, one of his units will be incorporated in the mix. Still, as most of you know, I am very passionate about blood donation, and anyone who would like to donate blood to Children’s Hospital (or anywhere, really) has my gratitude.
In our visit, we also had an MRI done of Wally’s brain (see photos below). It was quite the experience. I had never had an MRI before, and I found it fairly blasé’ – laying there for an hour listening to Garth Brooks over a series of loud beeps and cranks from the machine. Wally on the other hand, was alert and ready for action. The techs said they had never had a baby so active during an MRI before. This merely confirms my initial assumption that Dan and I will very soon have our hands very full.
We also visited the CICU and walked by a few rooms with babies recovering from heart surgery. Dan and I had seen pictures before of the massive amount of tubes, wires, and systems hooked up to recovering babes, but seeing their tiny little selves in person was eye-opening. I know I’ll hate giving Wally away to his doctors when it comes time for his surgery, and I’ll be crushed when I can’t hold and comfort him as he recovers, but knowing that he will be in the hands of such an excellent team makes it merely another hurdle to clear.
As for us, Dan has been keeping busy with TBS, and doing a knock-out job per usual. He’s a dutiful husband and Marine – I only know that will translate seamlessly into being a father. We’ve been enjoying weekend time with friends/family, and largely basking in the joys of married life – weekend dates to Costco and all. I’ve recently resigned from my position at GEICO, and am excited to begin transitioning into “mommy mode” – or as Dan likes to call it, my career as a “home economist”. Either way, it means more time for appointments, prep, general homemaking, and a whole lot less stress. With my long tiring hours out of the way, we make a united front for Wally and for the Marines. It feels so right having our focus centered!
Looking ahead we have a busy calendar leading to October, and can’t believe there are only about 11 more weekends until we hold Wally in our arms! And so begins the third trimester…