Tuesday, January 31, 2006
Week 12 - Jan 03 Update:
Happy New Year~
So Elizabeth has been home for over two weeks now. We're adjusting to her cycles and are less freaked out by her vomiting now that we have a suction pump at home...that way we know we can clear her airway if necessary. She's also vomiting less, and after two episodes yesterday morning, she hasn't puked at all! Thank you for your prayers for this area. We continue to ask for healing for her, and wisdom for us to know how to feed her to best address this. She's also doing well with oral feeds...baby steps.
Tonight is Matt's first night of call in over 2 months. We've had the blessing of a really low-key schedule since Elizabeth was born and from here on out, things will get more intense. Please pray for me - I'll be home alone with her overnight a bunch this month.
All in all, we're hanging in there...sleep deprived and still feeling a bit overwhelmed, but when she smiles...well, it all seems better.
Thanks for your prayers and support...though things are quieter from our end, we're still relying on a whole boat-load of prayers right now.
Sara (for all three of us)
Jan 7th Update:
HEADLINE NEWS! For the first time, I took a walk with Elizabeth this week. I just put her in her stroller, walked the 6 block round trip to the produce market, and bought some milk. I took a picture to prove it...WE WERE OUTSIDE! :-) And guess what? We both survived. It was a gust of encouragement to feel more comfortable just "going for it."
On another high note, Elizabeth now weighs 9 lbs 1 oz! Her weight gain is on-track, giving us more flexibility with her feedings. She has been having less vomiting and is getting much stronger in her ability to drink from a bottle. Right now, we're trying to only give her bottle feeds during the day to continue increasing that strength. Please pray for wisdom to know how best to feed her.
Elizabeth continues to live up to her middle name and is bringing us so much "Joy". She is vocalizing a lot (a raspy coo is one of our favorites) and she thoroughly enjoys her daddy's rendition of "I love you, a bushel and a peck." We've have follow-up appointments with our pediatrician and the gastroenterologist next week. We'd love to see a timeline for weaning her from her G-Tube, and would appreciate prayers to that end.
It has been almost 3 months since Elizabeth's birth, and almost a month since we've had her at home. As things have settled down, I'd love to report that I'm feeling energized and capable, but I often feel the exact opposite- exhausted and overwhelmed! Even though Elizabeth's health has stabilized, we're realizing the road ahead still holds the chronic issues of Turner's syndrome and our adjustment to them. We cannot walk this road alone and still need your prayers, support, and companionship more than ever. It's difficult for us to admit that we still need help, especially after all you have already done for us. For almost 90 days now, friends and family have brought us meals, cleaned our home, done our laundry and helped keep our lives running. Thank you for your practical outpouring of love. I literally begin to panic when I think about all that's been done for us. We will never be able to pay it back. Thank you notes have gone unwritten, emails and phone calls have not been returned, but please know that every single email, phone call, card, gift, meal, and expression of care has been a true ministry to us. We don't like being "needy" friends. We prefer envisioning ourselves as capable and self-sufficient. We feel more comfortable being the "givers" of support than we do being the "receivers."
On New Year's Eve, I was hit with the realization that Life is moving on. I'm well aware that Elizabeth is not the center of the world (except ours!). Many of you have also experienced challenges in 2005, and others will face them in 2006. Lives are moving on. And I have to confess, I'm afraid of being forgotten. So out of one side of my mouth I say "Thank you for all you have done," while the other side says "Please don't stop."
With humble gratitude,
Sara and Matt
Week 13 & 24 - Jan 18, 2005 Update:
It's hard to believe Elizabeth has been home for just over a month. She is growing and changing daily, and the task of just making it through the day has prevented us from emailing sooner!
Matt's email is down (thus the email from my account) and it's late (for us) so I'll be brief...
Our doctors appointments went well. Thank you for your prayers. The GI Doc. feels like Elizabeth's vomiting is within the range of normal for babies that have reflux and is hopeful that she'll outgrow it by the end of her first year. Overall, her vomiting has improved, which makes all of us happier. Today was tough, as she had a stomach bug which made her pukey all day (yes, pukey is a medical term now) ;) but she was able to hold down some food and is at the moment sleeping peacefully on her continuous feed...if you get this tonight, you can pray that she keeps it down! The one disappointment from our GI appt. was the information that she'll need to keep her g-tube for at least 2-3 months past the date when she's completely weaned from tube-feeds. Fortunately, when that day comes, it's something we can do at home.
On another GI note...we're looking forward to introducing Elizabeth to breastmilk on Monday. Without going into huge detail...I'll just say, we'd love your prayers for a smooth transition to breastfeeding, that Elizabeth would tolerate breastmilk (it's hard to imagine, I know, but her body may not be used to such a fatty diet, and could take some adjustment time), and that my expectations would be realistic. After 3 months of pumping, it's hard not to get my hopes up.
We had a Pediatrician appointment as well, and Dr. Miller was THRILLED with her progress...good weight gain (9 lbs 6 oz), progress with her vomiting, and she's started reaching for things! The therapy we've been doing at home with her hands (to relax the ligaments which cause her hands to clench) have been really successful, and her hands are more often in an open relaxed position, which makes gripping toys all the easier! She's thoroughly entertained by the colorful toys and every day her coordination gets better. (we'll post pictures of her reaching on the website) Because Turner Syndrome can cause clumsiness and trouble with visual-spatial coordination, the fact that she's doing so well with visual fixation and reaching encourages us.
Matt and I are doing pretty well. Matt's been on call quite a bit and I'm surviving at home (thanks to some wonderful meals and helpful visits from friends, family and a home health care nurse). It's a daily task to try to adjust my expectations for myself to somehow carve out "normal" for us...routine is a long way away I'm afraid.
Thanks for your continued love (and help and gifts) and prayers for our family...we're continually blessed.
Sara, Matt & Elizabeth
Week 15 & 16 - Jan 24, 2006:
So Elizabeth's transition to breast milk has officially begun. Believe it or not, she has actually become quite fond of the foul tasting Portagen (a blessing of babies' underdeveloped taste buds I guess) so she's actually NOT too fond of pure breast milk! As a result, we've been mixing it 50-50 and she does fine with that. The home nurse/lactation consultant visited us on Monday to give us some help and had some great suggestions. All in all, as many of you advised me, it's a process that will take time. So for now, we're sticking to the bottle and slowly getting her used to a new diet, and even more slowly, introducing her to her new method of food delivery. :) She's not thrilled with the changes, but we're all in it for the long haul....
We've got an appointment with her Cardiologist on Thursday...please pray that there will be no signs of fluid re-accumulation! This is the reason we held off on breast milk for so long - to give her lymphatics time to get all sealed up. We can't even begin to think about the consequences of re-accumulation.
Finally, we'll start attending a feeding clinic and working with a feeding therapist next week. Elizabeth needs to learn to suck for longer and take in more food orally. Her vomiting is down to about 1 a day and she's even getting better at gagging, but still holding down the food. We're eager to wean her off of her G-tube, but that's going to take some work on her part. Go Elizabeth!!
Matt's on call tonight and I'm heading to bed to try to get more sleep than he does tonight. (in recent weeks, he's slept better and in fact longer at San Francisco General than he has on other nights when he's at home!) :)
Thanks for keeping us in your prayers. We appreciate you. Goodnight from all of us,
Jan 28, 2006:
Be prepared for the frequent use of exclamation points...
Our appointments went really well this week! After 4 days on 50% breast milk, Elizabeth's chest x-ray showed NO signs of fluid re-accumulation! In fact, our Cardiologist said the x-ray looked "pristine." A word we like to hear. Elizabeth's progress means we can wean her off one of her meds and completely discontinue another one. Yeah!
She has continued to gain weight and now weighs a whopping 10 lbs! It's hard to believe some women deliver babies that weigh as much as Elizabeth does now at almost 3 1/2 months of age. Because of her weight gain, and her continued success at bottle feeding, we decided to completely wean her from her overnight G-tube feeds...so Elizabeth has gone for 60 hours feeding only from a bottle...and she's doing well! We have to go for 3 months without needing it before the tube can be removed, so as far as we're concerned, we'd like to get the clock ticking as soon as possible.
In the transition to breast milk, Elizabeth's reflux has improved and she hasn't vomited in 3 days! Go Girl!
I've got a cold right now, and so far, Elizabeth hasn't caught it...we'd appreciate your prayers that she'd be protected. The longer we can go without her catching something the better.
The transition to nursing is slow going, but I think we're seeing signs of progress, so if you think of it, pray for continued progress and for continued hope. I'm easily discouraged and don't want to take Elizabeth's resistance personally.
Matt and I could also use your prayers for strength, encouragement and grace. We're exhausted emotionally, spiritually and physically. We feel very much at the end of our rope, and as Pastor Paul always exhorts us - we've "tied a knot" and we're hanging on, but we could use some help.
Sara (for all of us)