A day without a blog

Saturday, March 19, 2011
God is Good

Every family of a NICU or PICU child at UCSF gets a social worker. Their job is to support the families emotionally, doing paperwork for us, etc. and they also help try to make us more comfortable. For breastfeeding moms, we recieve a 15 dollar food card to use in the cafeteria. Mind you, 15 dollars gets you about 1 meal, but its still something!

Our social worker stopped us in the hallway as we were leaving yesterday and told us we were moving up on the list for the Ronald McDonald house. Last night, she called to tell us that we were in! Now, we had no idea what that entailed, but she said we'd need to be available to 'move in' immediately when they did call. She said that John would be calling from RMH and we would have 24 hours to get to the room. John called just a few minutes later to let us know we were in!
The Ronald McDonald house is located in the Mt Zion district of San Francisco. We were to meet with John before 11 am this morning so that we could go over paperwork, get a tour and get settled before the end of his shift at noon.
So this morning we brought all of the kids with us and made the trip to San Fran. After getting a little lost, we found the house nestled in the middle of an unassuming block of businesses. The front door was locked and we had to buzz in. John is a very, very tall, slim older man with gray hair, black rectangular shaped classes. He sits down with Nic and I as the kids go into the gigantic play room to start playing with a little girl who was also in there. Her name was Daisy and her sibling was also at UCSF. We went over all of the house rules, paperwork and where to park and then went on a tour. Staying here is similar to staying at a house in that we can use the kitchen, do laundry and we have our own room. There are common areas and play areas for the kiddos. A few nights a week people come in to make dinners and they have coupons for us to take the kids to the Zoo or Science Museum if we want to.
I don’t know how many times Nic or I thanked John for the blessing of being able to stay here. We’re both still quite taken away by this incredible blessing. People wait MONTHS to get in. But, thankfully there were 2 families (both of whom were, at one point, in our room at the NICU) who got to take their incredible little babies home recently. Double the blessings I suppose!
At any rate, we’re all settled in and have been here with the kids today getting adjusted. We’ve been calling to check on Cayleigh all day. Earlier this morning we called and she’d had a mild desat and they suctioned her, gave her a little O2 and she was ok. I called the next time and the nurse said she had a mlld desat and she suctioned a huge booger out of her nose and then was fine. I called the next time and they said she had just an O2 slight desat (called an apnea) but recovered all on her own. Basically, this is when they hold their breath. She said its common in preemies and babies who’ve recently undergone the G-tube surgery because their tummy is tender. This last time I’d called they said that she was doing terrific and that, since noon, she’d been off her nasal cannula. This was around 4 pm. I called just now (its 10 pm) and the nurse said that she had started desating more and dropping her heartrate a little bit so the nurse restarted the cannula at room air like she had last night. She said she doesn’t know why she started it but that just having some flow through her nose to help her – she said her secretions are definitely better. She said that they don’t have O2 in the nasal cannula .. just the flow in her nose. They’re just going to wait and see how she does and eventually they will try again. She’s still -1 week old gestationally. Apnea is common in preemies.
What I mean by this is that I delivered Cayleigh at 37 weeks they did the evaluation they do on every child and adjusted her to be an actual 35 weeks. So at 4 weeks she’s actually -1 week. Thus, still a preemie.
As far as her feedings goes, she is doing much better. Continued prayer in this area would be greatly appreciated so that she can be moved up in her feeding amounts.
So that’s it. We definitely need prayers for Cayleigh still.
Prayer that she begin doing better with her breathing and not have anymore Apnea/Bradia ‘s
Prayer that she does well with her feedings and digesting
Prayer for the kids that everything is as normal as possible with this change. (they’ll be staying home and my mom will be taking them to school/etc and caring for them Monday-Thursdays)
Prayer for God to continue to sustain us
And prayer that we are continually faithful to our Lord

Thank you all – pictures to come tomorrow!