Gathering the Edelweiss of God

Abby Update: 7 Weeks Old

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Gestation: 35 weeks, 4 days
Weight: 4 pounds, 9 ounces
Feedings: 42 milliliters every 3 hours by gravity or bottle

Abby has been taking about half of her feeds by mouth lately. After our last nurse had a day off, we were greeted by a new nurse who was quite the opposite. She was determined to give Abby every chance she could to eat out of a bottle (which we appreciated). She agreed with us that Abby always looks sleepy but seems to do just fine at eating while she either is asleep or looks very much so. (I wanted to correct my previous post just a little and let everyone know that Dan didn’t actually snap and bite our nurse’s head off when she last tubed Abigail, as it may have sounded. We were disappointed at all the “tubing” but Dan was very calm and kind in his discussion with the nurse.)

Abby had her hearing test yesterday and passed. One step closer to discharge.

Abigail’s blood count for this week was a little low, 24.5. As I mentioned once before, if Abby’s blood count gets too low, she will need a transfusion. It’s pretty standard for the count to continue to decrease until around six weeks and then head back up. However, at seven weeks, Abby’s went down again (from 27 to 26.5, to 24.5 over the past three weeks). However, no one is too concerned at this point and she is already taking a multivitamin with iron.

The rest of us are doing ok. We sure miss Abby though. I was reading a book recently that introduced me to the helpful concept of “gathering edelweiss”. (You’ll have to forgive me for referencing a book that is referencing another book, but I don’t have any way of obtaining the original at the moment) The book I read is called Isobel Kuhn In the Arena and is part of an autobiography of the missionary, Isobel Kuhn. As she discusses her struggle with cancer, she says:

Another thing that has helped me to keep a sound mind is the gathering of the edelweiss of God. I owe this thought to Amy Carmichael. In her book Gold by Moonlight, she has a whole chapter on it. Edelweiss grows on barren mountain heights, and its soft beauty is a cheery surprise to the toiling climber. So Amy Carmichael likens it to the little things of joy which can always be found in any painful experience, if only we will gather them as we go along.

So I have been gathering edelweiss over the past few days and thought I would share some of my little flowers.

Last Thursday Dan, tired of being cooped up inside all the time, declared that we were going to the playground. Together we spent about 15 minutes playing on the slide, swings, and merry-go-round (before Mommy got too cold). It was 15 minutes full of fresh air and laughter that we all found to be a refreshing change from our usual routine.

On Monday evening I decided to take a few minutes to play with Lydia instead of tidy our living room before our babysitter came over. In the end, I didn’t even have time to clean up the dinner dishes before we left for the hospital (much less tidy the living room). Later that night I came home to find the dishes all washed and put away, the living room tidy, and the floor vacuumed. I was so relieved and grateful that I could have cried.

Last night and this morning I found myself with a few minutes to spare. I took the time to clear off the kitchen counter of all its clutter for the first time since we moved into this apartment. Now it looks so shiny and clean!

With our crazy schedule visiting Abby, it is sometimes difficult to find the time to cook and eat. So, Dan and I started getting Qdoba every Tuesday night for dinner. Once the Qdoba manager started recognizing Dan and successfully guessing our order, Dan told him that we have a baby in the hospital and that we’ll probably continue to come on Tuesdays until she is home. This week the manager got a quick update and more workers heard about little Abby while we ordered our burritos. When we neared the cash register to pay, the manager swiped his card and said he wanted to buy our meal this time. He handed the receipt to Dan out of habit, and down at the bottom was the total: $0.00.

Fifteen minutes at the playground. An uncluttered kitchen. A late night free from chores. A delicious free meal. These are my little flowers that I have been gathering into a bouquet, now on display for you all to enjoy.

Praise the Lord
We are thanking God for:
-Abby’s hearing test results
-Abby seems to be digesting the Nutramigen well
-the edelweiss of God

Please Pray:
-that Abby would eat more
-that Abby’s blood count would start to increase soon

Abby Update: 47 Days Old

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Gestation: 35 weeks, 2 days
Weight: 4 pounds, 7 ounces
Feedings: 40 milliliters every 3 hours by gravity or bottle

Total feeds by mouth
Friday: 27%
Saturday: 46%
Sunday: 31%

We were happy to hear that Abby had gained weight by the time she was weighed on Saturday. She has been receiving milk fortified with Nutramigen and, so far, seems to be handling it ok. She is back to spitting up a little and having a little residual, but nothing compared to the issues she was having on the other formula fortifier. Today we had a long chat with the doctor about different ways to fortify and what exactly Abby needs from the fortifier. Primarily Abby needs it for calcium, phosphorus, and the extra calories. We’re waiting to hear if there is any other way to supplement the calcium and phosphorus so that once we transition Abby off of bottles, she can still be getting those to help her bones grow strong. It doesn’t really matter (according to the doctor) if I’m getting a lot of calcium and phosphorus, because term babies don’t need it so it just isn’t in a mom’s milk in the amounts a preemie needs.

We also asked the doctor what all is keeping Abby from coming home. It’s just eating. As soon as she can take all of her milk by mouth, she’s home free (unless there are any unexpected problems). At first, we thought this would be a quick and easy ordeal. However, Abby is slower to pick up on bottle feeding than Lydia was. Day after day we would come home so disappointed that I finally gave up any come-home goals. If she’s home by Christmas, I’ll be happy. If she’s home by Thanksgiving, I’ll be very happy. I’m not allowing myself to think any further than that.

When Dan and I find something funny, ironic, or so overwhelming that we need some comic relief, we talk about our made-up sit com called “Life in the NICU”. Season One revolved around our neighbor Baby and his family on the NICU side. Often, the curtains around our bedsides would be closed, but they don’t block out sound and neighbor Baby’s family was quite comical. As a twist near the end of Season One, we were transferred to Special Care and found ourselves neighbors with the same Baby. He’s been home for a while now, so Season One came to an end.

Well “Life in the NICU” surprised us with a Season Two premiere this weekend! Early episodes revolved around one nurse, in particular, who we’ve had for the past few days. Every time we came in to the hospital, we would ask how her feeds went while we were gone and she would always say the same thing, “She was looking a little sleepy, so I tubed her” (fed her through her feeding tube, that is). Over and over we’d hear the same thing. However, whenever we fed her or a different nurse had her, she would eat well even though she did look sleepy. The latest episode finally ended when Dan about lost it hearing her say “She was looking a little sleepy, so I tubed her”. He explained that she always looks sleepy, but still eats for us (and everyone else who tries to feed her). At the last feed our nurse gave her a bottle, even though she looked sleepy, and Abby didn’t take any of it.

So, last night was when I gave up my goals and surrendered to just living this lifestyle for a while longer. In light of my recent change of mind, I thought I would share a typical Monday schedule for our family:

7ish AM: Rise ‘n Shine
wake up, brush teeth, pump, get breakfast ready

7:45 AM: Breakfast

8:15 AM: Clean Up
put away clean dishes, load dishwasher, take a break to play with Lydia, pack Dan’s lunch

8:45 AM: Bath time for Lydia

9:10 AM: Morning chores
fold and put away laundry, reload washer, get dressed, pump, transfer yesterday’s milk from kitchen freezer to chest freezer, start afternoon blog post

10:30 AM: Get Ready and Go
pack up everything to bring to hospital (pump, purse, diaper bag), get everyone ready (socks, shoes, coats), head out

11:00 AM: Abby’s late morning feeding
get update from nurse, change diaper, take temp, switch pulse ox, do foot exercises, nurse, walk around with Lydia while Dan holds Abby and feeds her a bottle if she’s still awake, pump, say goodbye, head home

1:30 PM: Lunch (Dan goes to work)
eat (leftovers), clean up, update blog

3:30 PM: Afternoon chores
pump, start dinner, get Lydia up from her nap

5:30 PM: Dinner
eat, Bible Time, clean up, pump

6:30 PM: Bedtime routine
get Lydia ready for bed, play and read until 7ish

7:00 PM: Babysitters arrive, head to hospital

8:00 PM: Evening Feeding

10:30 PM: Home from hospital, sleep

Praise the Lord
We are thanking God for:
-weight gain!
-Abby seems to be digesting the Nutramigen well enough

Please Pray:
-that Abby will learn to eat soon
-that Abby will have the energy and motivation to eat at every feeding
-for our patience as we approach our ninth week in the NICU

Abby Update: 44 Days Old

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Gestation: 34 weeks, 6 days
Weight: 4 pounds, 6 ounces
Feedings: 40 milliliters every 3 hours by gravity or bottle

Wednesday Night: nursed 14 ml
Thursday Morning: nursed 14, bottled 24
Thursday Night: nursed 16, bottled 25
Friday Morning: nursed 30, bottled 8

Wednesday total: 44%
Thursday total: 42%

The past couple days have been much better for Abby. At 11 AM yesterday (24 hours after they stopped the fortification) she had the first dirty diaper without a suppository in over a week. She had two more Wednesday night! Dan and I returned to the NICU Wednesday evening to find this note from Abby’s morning nurse letting us know the news:

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Wednesday night, some of the ladies from our Bible study came to the hospital and each took a turn praying for Abby at her crib side. It is exciting to hear such prayers and then come back Thursday to find out that Abby was having quite the turnaround.

Since stopping the fortification, Abby has also had less residual (leftover milk in her tummy) at each feeding. In the past she has had residuals greater than 10 ml at times, but in the past couple of days she has consistently had 0 to 1 ml. She has also started nursing a little better, although she’s still not up to her numbers from last week. And she’s been taking more and more of her bottles. Last night was the first time she finished a bottle that either Dan or I had fed her. And this morning she was back to her old self, taking in 75% of her feeding while nursing (and 20% more by bottle).

The problem is that Abby didn’t gain any weight. She didn’t lose any, but she didn’t gain any either. The doctor is giving her until Saturday to see if she starts gaining. If not, we have to figure out another way to get her extra calories. Another issue is that Abby needs extra calcium and phosphorus to help her bones grow. If she was still in utero, she would be getting these things from Mommy, but as a preemie, she’s not able to get enough of these just from Mom’s milk. Depending on the weight gain Saturday, she may be started on a different fortifier called and “elemental formula” that would provide what she needs while being easier to digest than regular formula.

Abby also had a follow-up head ultrasound yesterday to make sure there is still no bleeding in her brain. Dan and I happened to be there for the ultrasound, and everything came back normal.

Praise the Lord
We are thanking God for:
-drastically improved digestion off of the fortifier
-better nursing and bottle feeding
-no brain damage from being born early

Please Pray:
-that Abby will have a substantial weight gain (at least 1-2 ounces) tonight
-that Abby will have more energy at meal times
-that Abby would continue to take more and more of her feeds by mouth
-for wisdom for Dan and I and the doctor as we decide how to fortify Abby’s milk