Tuesday, February 28, 2006
Week 17 (Feb 03 to Feb 09) Update:
It's been way too long. I realize we ask you to pray for us, and then don't keep you up to date on the outcomes! So here it goes...
We're seeing a slow and steady upward trend in Elizabeth's health. We're finally getting to slow down on all the doctor's appointments and home nurse visits (this week we had only TWO!), which means we can actually try to keep a similar eat/wake/sleep routine for more than a day at a time! This means Elizabeth is sleeping better, eating better and for the first time in her life, I feel like I have some idea of what to expect from day to day. (pukes excluded of course) :)
The update on the breastfeeding is a disappointing one. Last week, during our weekly home-nurse visit, we learned that Elizabeth had stopped gaining weight and was in fact losing weight in the transition to breast milk. (it's lower calorie than Portagen) That combined with the fact that we were doing all oral feeds meant that she wasn't getting what she needed to grow. So we had to backtrack in two ways. We restarted her overnight tube feeds, (thus delaying the timeline for removing the g-tube) and we had to start fortifying the breast milk with Portagen powder. The good news is, she gets all the benefits of breast milk AND the extra calories she needs. The frustrating part is, that means breastfeeding is not a viable option. Of course I am really disappointed. After 4 months of pumping, I can't help but wonder what exactly all that effort, energy, and time away from Elizabeth was for. I had a lot of hope that we could make it work, and even felt like we might see a miracle in this area...and to have invested all that time and hope only to see one more thing not work out at all like we'd planned...well lets just say it's working against me in my efforts to resist a feeling sorry for myself these days. However, it's what is best for Elizabeth that's important, so I'm doing my best to move on.
In other news, we had an intake appointment for the Regional Center last week, (they provide and coordinate resources free-of-charge for children and adults with developmental disabilities) and because of Elizabeth's gross motor weakness (we're still unclear whether it's related to her extended hospital stay, or her neurological deficits or some of both) she qualifies for early intervention, so we'll receive home-visits from an occupational therapist once a week to help her get on track. The good news from that visit is, she seems to be doing great in all the other developmental areas...so that's a blessing.
Finally, it's been 8 weeks since we brought Elizabeth home from the hospital and we haven't ever made the trip back to the 7th floor since we left it. So Monday we went to say "Hi" to all our friends up there, and they were thrilled with how well Elizabeth looks and is doing. In spite of all the bumps in the road, she really is thriving. When we take a few steps back it's hard to believe her short life has been so full. She's started cooing and talking all the time, she is beginning to put things into her mouth, she gets better at the head control thing every day and she continues to live up to her middle name. She is our joy for sure.
Matt and I are hanging in there. This month is a busy one for Matt with lots of hospital responsibilities and nights on-call, so I don't see much of him, but my mom will come over next week to help out for a few days and we continue to be encouraged and blessed by your meals, gifts, phone calls and emails. Thank you for hanging in there with us.
Sara (for all 3 of us)
Week 20 (Feb 24 to March 02) Update:
Sent Feb. 28, 2006
Hi friends and family,
February is over, March is coming and Elizabeth is 4 1/2 months old! Time seems to just fly by. The lesson for me this month has been acceptance. A while back we sent an email out containing a poem called "Welcome to Holland" (Day 52 for those of you who want to go read it again) Though it's been months since we sent it, it remains a daily battle to accept that "Holland" is where I am, and "Italy"
is not my final destination. 'Cause see, I really want to go to Italy. I want to be "normal". And normal means - the removal of Elizabeth's g-tube, full feeds, breastfeeding and the timely reaching of developmental milestones. And all of this I equate with my competence as a mom. I guess I've been exerting so much energy to get Elizabeth "on track" so that I could feel "like every other mom" and not like the incompetent mom who can't get her daughter to eat enough, stop puking, stop needing her g-tube, learn to breastfeed, sleep through the night, or keep the same schedule for more than a day. As it turns out, so many of my efforts have been so that I would feel better. But over the last few weeks, it has begun to sink in that Elizabeth's challenges are not a reflection of my lack of competence; our "Holland" may include g-tubes, puke, meds, and "low productivity" for a while, and the sooner I stop fighting it, the sooner I can receive the blessings that this season has to offer: endless hours playing with my daughter, minimal requirements for my time outside the home; numerous friends and family still helping us out in so many ways and a nice-size serving of humility - I can't do this on my own, and my value isn't based on my daughter's speedy recovery or my ability to get control.
also realized that I've been holding out on some of my acceptance of our situation because at root, I think I've been afraid that if I got too happy in Holland, God might think I want to stay here and that I didn't still desperately want him to heal Elizabeth. It's silly I know, but that fear has kept me from experiencing a full measure of contentment and joy here. Lots to think about. And lots to be joyful for.
Along those lines, here are a few answers to prayer (based on the prayer requests list on our website) and updates from the last few weeks.
On Feb 12, We made our first visit to church since Elizabeth was born. It was incredible to see so many of our friends at Abundant Life (www.alcf.net) and together praise God for what He's done. We had to get up at 7:30am to make it to the 11:00am service. ;) (we're still rookies at this) but it was worth it. God truly has done great things.
My mom came to help us out last week/end and took the overnight shift, so I got 3 good nights of sleep in a row! She on the other hand, went home with a sleep-deprivation-induced migraine, and we all agreed that God knew what he was doing in giving babies to young women. ;) She's a great blessing and our hero.
Future singer? - As far as we can tell, Elizabeth's voice is back...completely. I can't tell you what a relief this is. She's cooing, and mostly says, "aaaahhhhh" in a dozen pitches. :) She loves to sing along with me and I think she really enjoys hearing her own voice finally! So do we...
Feeding - she's got the suck/swallow thing down, and regularly drinks at least 2/3 of her goal and sometimes gets the 3 1/2 oz down at one time! Additionally, she's actually managed to nurse a few times! It's rare, and more often she gags, and cries, but we'll take what we can get. We're still fortifying her milk, but (in the spirit of acceptance) I've decided to continue to pump as long as I'm able...so Elizabeth will continue to get "the good stuff" a while longer and we can continue to practice nursing as she is willing and able. She continues to puke, but we're learning to "roll with it" and she now weighs over 10 1/2 lbs!
G-tube - friend or foe? With the help of a dose of perspective from a dear friend. We've decided it's our friend. As long as she has it, we're going to use it! It is really helpful for giving her meds, and "topping her off" when she won't eat a full feed...this allows her to go longer between feedings and sleep better...and gives her mama a little bit of the schedule I've been longing for. :) It's actually helpful that her muscle tone is down, because she can't get a good grip on it to pull it out yet! :)
Scarring - All of her scars are healing beautifully.
Kidney - though she's only got one, and it's horseshoe shaped, it's functioning perfectly and the appointment with the pediatric urologist went well...and they never need to see us again! :)
Continued prayer requests:
Elizabeth's gross motor development is way behind. She's getting stronger as the weeks go by but remains floppy. She's going to need to develop those muscles so she can sit up, crawl and eventually walk.
Elizabeth's mom & dad. We were able to have a wonderful date night while my mom was here, but that's just the tip of the iceberg. We really need to take advantage of the lighter schedule Matt will have in March to re-connect and invest in our relationship.
Thanks again for your friendship, prayers and encouragement.
Sara (for all of us)