Abby Update: 58 Days Old

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Gestation: 36 weeks, 6 days
Weight: 4 pounds, 5 ounces
Feedings: 37 milliliters every 3 hours by gravity or bottle

If you’ve been paying close attention to Abby’s weight, you’ll see that she’s lost 7 ounces in the past 7 days. In the past couple of days she’s made more steps backward, which is always hard, but we got some answers too.

On Wednesday, I got a call from the NICU doctor. Now, in the six weeks Lydia was in the NICU and in the 8 weeks we’ve spent there with Abby, we’ve never gotten a call from the doctor before. He was calling to tell us that Abby was being taken to radiology for an upper gastrointestinal test to find out why she was losing so much weight. The test revealed that everything is normal, but the esophageal sphincter (that is, the valve at the top of Abby’s tummy) is wide open. Therefore, anything that goes down into her little tummy can come right back out without much trouble.

There’s not a lot that can be done to help with reflux. Abby has been taking Zantac, but it doesn’t seem to be doing much so they will be upping her dose today to see if it helps. Neonatologists differ about their use of antacids in preemies, but in this specific case, our doctor thought it was worth a try. In addition, Abby is being held upright for half an hour after a feeding. Today they also started to thicken her milk with rice cereal.

As Abby has been spitting up a lot and loosing weight, she has also started to drop her temperature. Yesterday morning we were running late to the hospital so I called our nurse to let her know we were still coming. After I let her know, she informed me (so we wouldn’t be surprised when we got there) that Abby’s temperature had dropped a lot so she was put back in the isolette. During our visit Abby was too exhausted to nurse and she only took 16 ml from a bottle.

Yesterday afternoon we got another call from the NICU (which we’ve learned is never good) informing us that Abby had failed to take in much milk by mouth so often that they had to put her feeding tube back in. Now she’s back to her old feeding routine: she eats as much as she wants by mouth and whatever she doesn’t take is put in through her tube. At our evening visit she nursed about 15 ml and got the rest through her tube.

Abby has been on a new formula for the past couple of days, and in that time she has failed to stool on her own. This is something Dan and I are watching out for, because every time she stops stooling, she stops digesting well, and then she stops eating as much. However, this time the doctor isn’t concerned how long it takes her to go as long as her tummy stays soft. We’ll wait to see if she can handle the fortifier this time.

The pediatric surgeon came by Wednesday afternoon to take a look at Abby’s hernia. He recommended the surgery be done before she comes home. However, he’s a busy surgeon and the surgery couldn’t be scheduled until at least halfway through next week. This is no longer a problem, because Abby is not going to be home that soon.

Finally, the good news is that Abby’s blood count was up to 28.3 this week (from 24.5). Now that it’s increasing, it should continue increasing until it reaches a “normal” level.

Throughout the time we’ve spent in the NICU, I’ve tried to include on our updates how the rest of us are doing. This time, it’s more difficult to put into words. We are so ready to be home with Abby. We’re tired and weary and longing for home and togetherness and to be one whole family. The past eight weeks, however quickly or slowly they may be going by for others, have dragged on and on for us. Unless you’ve spent an extended amount of time in the NICU with your own baby; unless you’ve seen her make so many tiny steps forward from the isolette to the open crib to bottles to being feeding tube free, only to hastily return to the isolette and get her tube back in; unless you’ve heard the doctor predict “home” in two or three weeks, only to hear three weeks later, “she won’t be going home for a while”; unless you’ve watched your tiny little blessing put on weight one ounce at a time, only to see her once chubby cheeks shrink back down, I don’t think you can completely understand what this specific situation feels like. And I’m sure all of the moms who read this can imagine the fears that temp to fill a Mommy’s mind as she watches her little one grow too tired to eat and too weak to keep herself warm.

We’ve had a hard, a very hard week. I’ve recently been dropping Dan off at work and driving home, then driving in to pick him up later. One day I decided to start putting on music, and I found that listening to worshipful songs was helping my attitude. This morning as I drove home an old song came on that resonated with our situation.

I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say “Amen”, and it’s still raining

I remember when
I stumbled in the wind
You heard my cry to you
And you raised me up again
My strength is almost gone
How can I carry on
If I can’t find You

As the thunder rolls
I barely hear Your whisper through the rain
“I’m with you”
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

And I’ll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I’ve cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

Praise the Lord
We are thanking God for:
-an increased blood count
-that we won’t have to come back to the hospital for surgery once Abby comes home

Please Pray:
-that Abby will gain weight, eat more, and keep her temperature up
-that Abby will be able to tolerate this new formula being used for fortifier
-that the attempts to fight Abby’s reflux (Zantac, upright holding, and rice thickener) will be successful
-for Mommy, Daddy, and Lydia, who are heartsick and wanting Abby to thrive and come home

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