Warning: this post contains some post-surgical photos that might bother the wound-faint-of-heart.
I'll start by saying that things are looking good for Katherine right now. It has been a time of ups and downs emotionally for all of us, and physically for her. For a while there it was two steps forward, one step back for our poor little girl.
If there was a complication to be had, it seemed like she had it.
Here's a brief rundown of events.
1. Katherine on her birth day.
2. Two days old. Audrey finally got to hold her. The purple patch on her forehead (we called it her "sleeping mask") monitored her oxygen.
3. This looks much more uncomfortable than it was for her (so they told us). She's in the middle of one of her pre-surgery echo cardiograms. They found a second hole in her heart from these. I was there when this was happening.
4. Resting: still pre-surgery. She loves her binkie. Ray said when he was there she was trying desperately to suck her thumb. I guess that makes her my granddaughter!
5. So many machines. And this is not even all the monitors and gadgets she ended up with. Here's what is incredible to me - you pay by the day for each of those little monitors, which are each hooked to a lead or IV into her body.
6. Awake!
7. I brought the kids up to see her. Audrey and Joseph wanted them to see her before her surgery - no scar, etc. This is me and Elizabeth with Katherine.
8. This may be one of my all time favorite pictures of Ray. I may have to have it framed.
9. Those nurses just can't help themselves. If there is a baby girl, she's got to have a bow!
This is at three days old, post surgery. She has her ventilator in, and you can see the feeding tube going into her nose. The white bandages on her chest are protecting her open incision. When they closed her up originally after the surgery, she wasn't oxygenating correctly, so they had to open her back up again. Her chest was open from Thursday until Saturday.
10. A full body shot.
11. All closed up! Still on the ventilator. She was on the ventilator for a week, and she did not like it. They had a hard time managing her pain for a while as well. It was a tough few days for our little girl.
12. Here's her original incision. At this point the line going into her left hand leaked some very strong acid, and it burned through the skin on the top of her hand. She had a hole the size of a quarter. It had some problems, but is now healing pretty well. Another scar for our little girl.
You can see how bloated her belly is. That is normal post-surgery, but hers took a long time to go down. That's why she had to be on the ventilator so long.
13. Awake! No more line into her head. They ended up putting a PICC line into her arm. It failed and they had to put another one in that evening.
14. Ventilator out!! That was a good day. She's still on oxygen, but just a cannula. She has a birthmark on her forehead. It's raised, and has uneven edges. My math major daughter told her siblings: it looks like a fractile. At first the nurses thought it was residue from all her tape and they tried to scrub it off. Some bleeding ensued. Finally Audrey found a picture from before that showed the birthmark, so now they leave it alone.
15. We are so blessed to live close to Primary Children's Medical Center. Audrey and Joseph sleep here at night, and spend their days with Katherine. The care has been amazing. There are also many volunteer organizations that bring treats and gifts to the children and their families. This cute candy corn hat was just the ticket for an October baby.
16. See where they tried to scrub off her birthmark? I love these pictures of her sleeping.
17. Here she is right before she's going in to get her pacemaker. Her little heart is all repaired, but won't pace on its own. So she had a pacemaker put in last Monday. That was a surprise, and according to her surgeon, pretty rare. She'll have it at least three years, and maybe the rest of her life. It means more surgeries down the road, and no contact sports. It also means perhaps some hassles in airport security. But no worries: she already has her authorization card.
18. Post-pacemaker, with all her EKG wires attached. She looks much better than she did after her first surgery (still has her bow). Back on the ventilator. Not all bloated.
19. Sweetest picture of all: Audrey holding Katherine. After 12 days of waiting, she finally gets to hold her again (ventilator out).
20. Her new incision: there were a few complications before she got her pacemaker, some of which involved maceration around one of her drains. That's part of the reason her incision is extended. The pacemaker is in her abdomen.
21. Looking much more peaceful.
22. A Halloween costume for our baby girl. Those volunteers are wonderful.
23. Joseph holding Katherine. For the first time in 15 days. Words can't express how wonderful this is.
24. Today! All leads and PICC line out. All drains removed. Hair nicely coiffed (not my doing). She failed her swallow test, but may be able to go home with the feeding tube. Optimistically she may be able to come home in a few days. However, with her penchant for complications, that might not happen.
We are so blessed that she is doing well. There are so many other children in that hospital for months and months. I admire those families and all they do.