Elizabeth is six weeks old today! These last 42 days have lasted forever and flown by in an instant at the same time. We would have given her some cake to celebrate, but she's still having trouble keeping her tube feedings down. In addition to delaying her release, she's close enough to throwing up at most times that anything in her mouth (a pacifier, a bottle nipple, her own fingers) can tip her over into vomiting. So we haven't been able to keep her sucking skills up like we were hoping. Whether this will delay her learning how to eat remains to be seen.
Sara mentioned the swelling of Elizabeth's left leg in yesterday's note. It improved with elevation of the foot, but an ultrasound was done to look for clots anyway. Not surprisingly, she still has extensive clots, prompting The Team to reconsider blood thinners to prevent their growth. Unfortunately for poor Elizabeth, they want to give it as a twice daily shot into her belly fat (what little there is of it)! As if her belly hasn't already been through enough...
Elizabeth had to say goodbye today to some of her and her parents' favorite people. Svea (Sara's older sister) flew in from Canada with her new baby Eiley to meet Elizabeth and went home today. My younger sister Julia had been visiting from Germany and left too. We were very sad to see them go. And though she expressed it by sleeping soundly, so was Elizabeth. I'll tell you who Elizabeth would love to see leave- that poor kid in the crib next to hers! He cries ALL the time and loudly. Somehow, she manages to sleep though most of it.
The photo is of the "New Mommy Shuffle" and shows Sara's sister-in-law Tawni holding Svea's Eiley (7 months), Svea holding Elizabeth and Sara holding Tawni's Rachel (4 months). We are praying hard that God allows a re-shoot of that photo somewhere other than the hospital by Christmas.
Our prayer requests are nearly identical to yesterday's:
- Sara is still coughing enough to interfere with her sleep and complicate our time with Elizabeth
- Elizabeth being on blood thinners places her at risk for bleeding (around her brain as before or elsewhere)
- Before moving to take the chest tube out, Elizabeth needs to be getting 20 milliliters of food per hour, but so far vomits with anything over 15
- We'd love to be giving Elizabeth a bottle or pacifier to help her learn how to suck and swallow
- We want her HOME!
- A larger, quieter rooming situation would be nice.
Hope you're enjoying good left-overs,
Matt and Sara
Day 43 (Nov 26) Update:
We finally got moved to our long-awaited quiet, spacious room. The move happened today because the other two infants sharing our space took the only two routes out of Step-down. Little Shaun went home and little Alberto went back to the ICU. Shaun had a similar surgery to Elizabeth's, but without the complications of Turner's and at 14 days old was good enough to leave. Alberto has been in the hospital for all of his 6 months of life and because of a very high fever and trouble breathing had to return to the ICU for the umpteenth time. So our new digs are bittersweet as we think about these two babies. Obviously we're sad that Elizabeth didn't have the quick happy recovery that Shaun had. At the same time we're grateful that Elizabeth is stable and making small steps forward. We're also very aware that tomorrow might bring something new and we struggle not to fear more complications.
Elizabeth continues to be stuck at 15 cc of Portagen per hour. Today, even at that rate, she spent much of the day gagging and threw up multiple times. It's very hard to watch her struggle, and the baby dry-heaves are heart-wrenching. We know she needs food and nutrition but sometimes we just want them to turn off the Portagen altogether.
We haven't mentioned her chest tube output in quite awhile because it's been close to nothing each day since her surgery. Today however, she began putting out more fluid. None of the doctors were around to discuss this change, but we're concerned at what it might mean- mainly that going up on her feedings will prevent her chest tube from coming out and delay her homecoming indefinitely.
So please pray for:
- A reversal in her chest tube output trend back toward drying up.
- A breakthrough in her toleration of tube feedings.
- Stamina for Elizabeth and her parents to persevere as the days continue to drag on.
Matt and Sara