Sophia had a busy week this week. Luckily for her, it started off with a continuation of the massage lesson. We learned the tummy and back massages, which are supposed to help with constipation. Massaging her feet and hands is supposed to help with her grasping and eventual walking. We also did some face work, which should help with her oral aversion. The teacher seemed to think she was especially tolerant of all of the touching.

Wednesday morning we set off for Duluth. Since I had a meeting there, we thought it would be fun to take Sophia on her first overnight adventure. After all the things we needed to pack, it seemed like we’d be gone for a week! We needed the pack ‘n play, all of her meds, syringes, bottled water, pre-measured formula, bottles for pumping, 4 pairs of pjs, 6 outfits, all the burp cloths we own, her feeding pump, pump bags…you get the picture. (With all of that, we didn’t have room for Mukwa, so she got a special overnight at Grandma’s house where she got to run, play and swim). Sophia did great in the car both there and back, as long as we gave her a break mid-way. We just fed her with the pump so we didn’t have to worry so much about her spitting up from the car seat. She had a good time walking by Lake Superior in her new little snowsuit and going to her first real candy store. The air in the hotel room was pretty dry, so she was up a lot during the night coughing, which made her pretty tired in the morning. But, she seemed to recover pretty quickly.

Friday we had her pre-op appointment. Luckily, she didn’t need another echocardiogram or a urine sample, so it only took a little over three hours. She started off with her weight (14 pounds, 1.9 ounces) and height (25 3/16″), then we moved on to the EKG (which had great results). She stayed really still watching the rain stick Papa held for her. She even tolerated the multiple stickers being removed. Then they sent us down for a chest x-ray (which was unchanged from the last one, which is a good sign). Next stop was the lab for a blood draw. Unfortunately, this did not go so smoothly. The first tech tried her foot and when she couldn’t get a vein pretty quickly, stopped and called for back-up. Back-up (a woman we’d had in the hospital) arrived and tried Sophia’s arm. She stuck the needle in and kept moving it around and around trying to get it into a vein. This went on for way too long–while Sophia wailed the whole time. (Sweet-ease has lost its charm). The other tech and I finally got her to stop (right before I would have fainted). The next step was to bring in the nurse practitioner who was going to tell us all about surgery. She decided to try Sophia’s femoral vein in her upper thigh. It took her two tries and a lot of maneuvering as well, but she did finally get the 5 mls of blood they needed. This was scary, because she had to give us all of the risks before she did it–possible blood clots, etc. Apparently, the techs aren’t allowed to do this type of draw because of the risks. This bruised her and really seemed to hurt. Of course, this was all during nap time too, so she was really unhappy with all of the pain. Hopefully, they’ll be able to put a line in during surgery that allows them to draw blood for future tests (but so far, they haven’t had much luck doing that). It is so hard to watch her go through so much pain. You can tell she wonders why we aren’t putting a stop to all of this pain she has to go through.

At the end of the appointment, the nurse practitioner went through all of the information about surgery. We are to arrive at 5:30AM for a 7:00AM start to the operation. They won’t be done by noon, but should be done by 3:00PM if all goes well. She said that if everything went perfectly (which she doesn’t expect for Sophia with all of her breathing problems), she could be back home in 4-6 days. We are not getting our hopes up after 5-week and 4-week stays before. The main thing will be to make sure her heart is stable and for her to get off of the breathing machine. They will only require that she can handle enough food in her stomach to keep from being dehydrated–we’ll work on getting her volume back up at home. During surgery they will need to do a sternotomy (cutting through her chest bone) and put it back together with wires. Because of this, we won’t be able to lift her under her arms for 4-6 weeks. I guess she can turn over to her stomach whenever she does so voluntarily and can tolerate it. This will put a little delay on her move toward crawling. The ASD (hole between the atria) will be repaired with stitches; the VSD (hole between the ventricles) will be repaired with a patch. She’ll be on a heart-lung bypass machine while they do all of this, then they’ll have her heart start to do the work before they take her out of surgery. They will also put temporary wires to her heart so they can use an external pacemaker if necessary once she is out of surgery. One of the main risks of surgery on a baby this small is that they could damage the electrical functioning of the heart during surgery, which would require an internal pacemaker. They will apparently know this during the operation. As far as the other risks go, she primarily talked about infections. We felt much better that the odds the nurse practitioner gave us of Sophia not surviving the procedure were 1% (much better than the 25% I had read in my 10 year old book). However, since our odds that Sophia would have Down Syndrome were 2%, we don’t dismiss these odds either. She is going in healthy, so we feel good about that, but like the nurse practitioner said, there is no such thing as low risk heart surgery.

On Saturday night Grandma came to stay with Sophia so we could go to a concert (planned before we knew this would be our last pre-op weekend). Sophia ended up crying quite a bit until we got home, so we don’t know whether she is developing separation anxiety or was just overtired. Although she’d developmentally be at the stage to start developing some separation anxiety, it would be too bad if she has it while in the hospital. Even though we didn’t leave her that often during her other hospitalizations (and won’t this time), we cannot stay over night while she is in the PICU. We’d feel pretty badly if on top of all of the pain, she was missing us too. They’ll be waking her up periodically to get her vitals, etc., so I imagine she’ll be looking for us. We aren’t far away, so if when I call in overnight, she is upset, we can come in to comfort her.

We gave her two special cleansing baths tonight to reduce the risk of infection. We also have to stop feeding her at 1AM. Since she has reflux so bad, they won’t allow her to even have breast milk or Pedialyte closer to the time of surgery (like other patients could). We’ve been flying her around, holding her under her arms and giving her lots of tummy time since we won’t get to do that for awhile. We’re also trying to give her lots of snuggles without dripping tears onto her. It will be scary to send her off in the morning. It’s also hard because she is so much more aware this time. We won’t know until the morning whether they’ll let one of us go in for the anesthesia; it is unlikely, but we’ll ask. We’ll try to update the blog with the results from surgery as soon as we can. There is usually a delay from the time they tell us she is out of surgery until we can actually see her in ICU (the nurses have to get her all set up from the operating table to her room).


  1. Sandy Danks says:

    I know you won’t get this until after surgery – but Sophia, you & all the surgery staff are in my prayers! Love you!!!