Abby Update: 2 Months Old!

Posted on November 11, 2013 by justeeni

Gestation: 37 weeks, 2 days
Weight: 4 pounds, 5 ounces
Feedings: However much she wants by bottle, every three hours

Abby seems to be slowly improving. By Saturday morning, she was pulling new tricks with tons of periodic breathing and some cardiorespiratory events. Periodic breathing is when babies slow their breathing way down for a while then start breathing very quickly to “catch up”, and then they repeat the cycle. Often associated with periodic breathing are respiratory events, which are when the breathing and/or heart rates drop. Abby pleased us early on by having almost no events, but now that she’s losing weight everything else seems to be unraveling as well. So, she’s been having events.

Abby also pulled out her feeding tube again. She had gone three days without stooling and was starting to have residuals again (leftovers in her tummy that hadn’t digested). Our concern was that every time this has happened in the past, the doctors have started subtracting the residual from her next feed. For example, Abby was getting 39 ml feeds; if she had 18 ml residual they would only give her 21 ml at the next feeding time. For a baby who is already losing weight, we didn’t want them subtracting from her feeds! So the doctor decided to leave the feeding tube out and stop checking residuals. So far, Abby’s taken enough milk by mouth to keep the tube out! She has not, however, been nursing well for the past few days.

The doctor was wringing her hands on Saturday because she was at a loss to know how else to help poor Abby. Our sweet nurses have been patiently feeding Abby slowly, burping her often, holding her upright for half an hour after feedings, and often changing out of spit up covered scrubs despite all of their earnest efforts. It’s hard to say what, if anything is helping. Some of you have given suggestions (different medicines, adding oatmeal to the milk) and we’ve been talking over all of these with the doctors. In fact, Abby has become quite a demanding baby as far as doctors and nurses are concerned and it is not uncommon to find a small crowd gathered around her isolette trying to figure out what to do next or asking for updates on how she did at the last feed.

On Sunday, finally, Abby gained some weight! She will continue to be weighed daily (instead of every other) until she is more stable. Last night some tests were taken using urine and blood to rule out the possibility that Abby has some sort of infection contributing to her troubles. (I don’t know the results of those tests yet)

If Abby becomes more stable, the doctors are hoping to have her hernia surgery done this week, as early as possible. The main reason is, it would be a bummer to get her all ready for discharge and then send her in for surgery and get set back a few days. Why not do the surgery while she’s still not ready to go home, so she can recover while she had to be here anyway and get her home a little fast, our doctor suggested. Of course, they won’t do the surgery unless she is stable, has no infections, and will be able to recover without any added risks.

Sundays, as I’ve mentioned before, are always the hardest days. A part of that is that on Sunday we go to church in the morning and miss our morning visit with Abby. We visit in the early afternoon, instead, straight from church, and don’t get home until around 5. Then it’s nap time, dinner time, and back to the hospital. As a result, we often don’t eat any lunch (or not much of one in the car) and our nap time is often cut short. Everything proved to be a little too much for me this week and I came down with a relentless headache during church which lasted all day. Some sweet friends had us over for dinner and I spent that time lying on their couch. Ultimately I threw up, missed my evening visit to the hospital, and rested at home for a few extra hours. Today I’m feeling much better and should be able to get to the hospital for the 2 pm feeding. (We are sure that I’m not sick, the throwing up was due to the headache, and I am safe to visit Abby)

Lydia hasn’t seen Abby all weekend because at the end of last week she had a runny nose. She was all set to go see her today, but woke up with a new runny nose. So it’ll be at least a couple of days more before she’ll be allowed in the NICU.

The Doctor who was at the hospital Saturday is also on next week, Monday through Friday. She is trying hard to get Abby home to us (it is well known that preemies do much better when they get home, and, of course, their family does too!). She said that if Abby doesn’t get sent home this week, she’s going to get her home the next week, which would be in time for Thanksgiving. However, we know that unexpected things can happen and it’s impossible to know that Abby will be ready that soon. We’re hoping so.

Praise the Lord
We are thanking God for:
-that Abby is taking her feeds by mouth again and that the feeding tube is gone
-that Abby gained some weight on Sunday (still 4 lb, 5 oz, but closer to 4 lb, 6 oz now)

Please Pray:
-that Abby will gain weight, spit up less, and keep her temperature up
-that Abby will stop having events
-that Abby doesn’t have an infection
-that Abby will be able to have her surgery this week
-that Abby would start nursing again

Abby Update: 58 Days Old

Posted on November 8, 2013 by justeeni

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

Abby Update: 8 Weeks Old

Posted on November 6, 2013 by justeeni

Gestation: 36 weeks, 4 days
Weight: 4 pounds, 10 ounces
Feedings: However much she wants by bottle

Abby is still not gaining weight. However, she is stooling on her own now. Yesterday we were disappointed to hear that she lost another ounce, but the doctor decided to wait another day and weigh her again to see if she started gaining. Today her weight was exactly the same. She didn’t lose. But she didn’t gain either. Dan and I aren’t able to be at the hospital for rounds today so we’ll find out tonight what the doctor decides to do. Abby is still spitting up a lot. If we could get that under control, she would probably start to gain weight again, fortifier or no.

Abby stools when she’s off of the fortifier. But she gets more calories on the fortifier. Maybe they’ll put her back on the fortifier, or maybe they’ll alternate days when she gets fortified milk. We’ll see.

This morning during her daily exam, the doctor told Dan that Abby has a big hernia. That is, the “gap” through which something is protruding (probably her left ovary) is large so it’s easy to see the bulge. It is good to have a big gap because that means there’s less risk of the gap closing and requiring an emergency surgery. The pediatric surgeon has been on vacation and will see Abby today or tomorrow and decide when she should have the surgery.

Today Abby will have some routine blood work done. We’ll get an updated blood count. She’ll also have her biweekly eye exam. These exams will continue until the blood vessels in her eye finish developing.

Things are pretty quiet in the NICU these days. As of last night there were only 11 babies, so they moved all of the babies back over to the NICU side to keep them all together for now. This is Abby’s fifth move of her life. Maybe the next time she moves it’ll be move home! One of Abby’s preemie friends, who we’ve nicknamed “Belleville Baby” might be going home this Sunday after ten weeks in the NICU. We’re happy for them, and hope that Abby will soon follow in Belleville Baby’s footsteps.

Praise the Lord
We are thanking God for:
-that Abby didn’t loose weight last night
-that Abby has a large gap so it is likely she won’t have trouble with the hernia while we are waiting for surgery

Please Pray:
-that Abby gain weight!
-that Abby will spit up less
-wisdom for all involved in making decisions regarding Abby’s fortifier

Abby Update: 51 Days Old

Posted on November 1, 2013 by justeeni

Gestation: 35 weeks, 6 days
Weight: 4 pounds, 12 ounces
Feedings: 42 milliliters every 3 hours by gravity or bottle

The roller coaster continues. Yesterday our nurse was pleased to tell us that Abby took all of her feedings by bottle overnight. At rounds the doctor said she may come home next week.

Last night we found out that Abby stopped stooling again. And she’s been back to having residuals. I was surprised, though, when she nursed 20 ml and then took a few more from a bottle. Still, it’s hard not to wonder if we’re going to have a repeat situation with the residuals and no dirty diapers. The nurse ended up giving her a suppository, which helped her to go.

This morning Lydia started throwing up. Dan and I have tried to be very careful about staying away from anyone who is sick because of the strict NICU rules about not allowing sick people in. NICU rules are that no one is allowed in if they’ve had any signs of illness within the past 48 hours. Dan stayed home with Lydia while I went in to nurse and hold Abby this morning.

Abby didn’t want to nurse. She took all but the last 6 ml from her bottle. Then, as I was burping her, she had a big spit up. All over me. All over herself. The nurse put her back in her crib to change her clothes and she started spitting up more and just didn’t stop for a while. She even spit up out of her nose and pushed her feeding tube out. Everything was a mess and we had to call the doctor to report it all. The doctor put in orders for Abby to get an abdominal x-ray to find out what’s going on down there. I had to leave before they came to do the x-ray, so I guess you’ll all just remain in suspense until Monday. Hopefully it’s good news.

It’s possible that Abigail could have come down with whatever Lydia has. However, by this afternoon, Lydia appeared to be better. She’s eaten two meals without any problems. And she’s been energetic and cheerful. Now, she’s down for a nap (she was a little sleepier than her normal healthy self).

Praise the Lord
We are thanking God for:
-Abby’s progress on bottles (64% yesterday)
-the possibility of going home as early as next week (depending on recent developments)
-that Lydia appears to be improving already

Please Pray:
-that we would be able to figure out what is causing Abby’s residuals and spit ups, if anything of concern
-that Abby would not get sick (that goes for Dan and I too!)
-that Lydia would get better soon
-that Abby would eat more

Gathering the Edelweiss of God

Posted on October 30, 2013 by justeeni

Abby Update: 7 Weeks Old

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

Posted on October 28, 2013 by justeeni

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

Posted on October 25, 2013 by justeeni

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:

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

Abby Update: 6 Weeks Old

Posted on October 23, 2013 by justeeni

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

Monday Night: nursed 14 ml
Tuesday Morning: nursed 14 ml
Tuesday Night: 0
Wednesday Morning: nursed 6 ml, bottled 19 ml

Abigail is still struggling. She has yet to stool on her own, and has been given suppositories once or twice in the past couple of days. Monday night she was given a suppository at 11 PM. By 2 AM she had a dirty diaper and when it was time to eat she ate her first complete bottle! This further supports our thesis that if she could just start to go on her own, she would be back on track! She hasn’t nursed well since Saturday but is taking a larger portion of her feeds by bottle.

Yesterday at rounds we started talking to the doctor about the trouble Abby’s been having. She suggested that we’re going to need to try some different things to help her start going on her own, because it’s obviously becoming quite a problem. Dan asked if, before trying anything too strange, we take her off the formula (fortifier) to see if she digests a little better. Even though the nutritionalist insisted that Abby needs the fortifier, the doctor wanted to see what she’d do off of it.

For Abby’s first few feeds on pure milk, she had little to no residual in her tummy (leftover milk from the previous feed)! However, she still hasn’t been able to stool. The major concern is that without the fortifier she won’t get enough calories to grow. At just 34 1/2 weeks (gestation) she’s really not even “supposed” to be eating yet, so all of the energy she burns by being awake and trying to eat requires more calories than she’s getting from straight milk. Tonight she’s scheduled for the next weighing so we’ll see how she does.

Dan and I are concerned that she might do better without the fortifier, if she’s given enough time to get everything else out of her system, which she obviously hasn’t done yet. However, we don’t know how long they’ll let her try because it’s routine practice to keep all preemie’s on those extra calories.

Praise the Lord
We are thanking God for:
-a chance to try feeding Abby pure milk without anything added
-that Abby is continuing to increase the amount of milk she’s taking my mouth
-no spit ups in the past couple of days!

Please Pray:
-that Abby will not become suppository dependent, that she would start to go on her own
-that Abby will have a substantial weight gain (at least 1-2 ounces) tonight
-that taking Abby off the fortifier would help her digest better and that the results would be clear
-that the doctors won’t put Abby back on the fortifier too soon, and miss any positive results that may occur
-that Abby won’t be so sleepy when it’s time to eat
-that Abby would get back to nursing more than half of her feeds

Abby Update: 37 Days Old

Posted on October 18, 2013 by justeeni

Weight: 4 pounds, 3 ounces
Feedings: 36 milliliters fortified to 24 cal every 3 hours by gravity

One of the most exciting things to track as NICU babies get closer and closer to discharge is how much milk they’re able to take in on their own, either by bottles or nursing. Abby hasn’t started on bottles yet, but here’s her success nursing from the past few attempts:

Wednesday night: 14 milliliters
Thursday morning: 28 milliliters
Thursday night: 26 milliliters
Friday morning: 2 milliliters

Wednesday night our nurse was skeptical about weighing Abby before she ate. “It’s still early. We don’t want to set parents up for disappointment”, she told us. Then, after Abby ate for a short amount of time, and fell asleep, we weighed her again. I couldn’t see the weight but I heard the nurse say, “Well, look at that!” when she saw that Abby had taken in 14 milliliters. The next morning was her personal record so far: 28! When doctors came for rounds they were surprised at her progress. Babies aren’t really expected to succeed until about 35 weeks. Abby was only at 33 1/2 at the time.

So the doctor asked us when we’d like to start bottles. However, she also told us that Abby is so young and small that she probably still won’t come home for two, maybe three weeks. Well, we don’t necessarily think it’s going to take her that long to figure out bottles (it took Lydia less than a week) so we haven’t started them quite yet. We will probably give her her first bottle tonight or tomorrow. Often, the bottles are the last step for NICU babies, but because Abby is so small and young, that may not be the case for her.

This morning we were told that Abby has not had a dirty diaper in quite a while, although she did have another solid weight gain (3 ounces). Dan and I suspect that the HMF (human milk fortifier), which is cow’s-milk-based, may be part of the culprit, as it is known to cause gas, pain, and constipation. Tonight we may talk to the doctors to find out if there’s any possibility she could come off of it, since she has been having quite large weight gains.

Our doctor also examined Abby’s foot yesterday and announced that she thinks it looks good. It is still turned in, but she’s getting better and moving it on her own. We probably will not need to do any more to fix it then the exercises we have been doing with her. Abby also gets to come off of the sodium supplements. Yay!

The real disappointment came today when Abby didn’t have any interest in eating. She took in a whopping 2 milliliters. Not at all impressive in light of her 26 ml and 28 ml feedings yesterday. Again, she hasn’t had a dirty diaper in quite a while so she had a very full belly. We suspect that is probably the reason for her lack of appetite.

Over the past couple of days I have been reflecting on what God has been teaching me over the summer. With two moves, three months of being unable to unpack, weeks of morning sickness, Abby’s early birth (right before a third move!), and our time in the NICU, I’ve been realizing a bit of pattern. I’ve mentioned before that I thrive on a schedule. Routine, stability, and familiarity make me feel comfortable and happy. When something happens to disrupt those pillars I freak out and then stable myself by thinking, “Well, as long as …. I’ll be fine.”

As long as we don’t have to move again
As long as I can unpack at the end of the summer
As long as we can get onto a routine
As long as I get to take a nap
As long as I can still have another baby
As long as…

then I’ll be fine.

Over and over again Dan and I have been put in situations that are just beyond our control and over and over again I would pick out one little thing and say, “well, as long as…”. I realized last night that God is teaching me something. We need to trust Him with no “as long as” attached. Even if He took it all away: all the routine, structure, and comfort. All of the hopes, dreams, plans, and expectations. My hope should be in God, not in my “as long as”.

I decided it’d probably be good to learn this before any more crises arise.

After pondering all of that last night for quite a while, I started off today without really thinking about it. After Abby only took in 2 ml this morning I started to get a little down, and a little stressed. On the way home from the hospital I caught myself thinking, “Well, as long as she does better tonight…”

Why are you cast down, O my soul, and why are you in turmoil within me?
Hope in God; for I shall again praise him, my salvation and my God.

God is the only pillar I can stand on that won’t crumble under my feet. He is the only cleft I can hide in that won’t fail me. So I am learning to stand on that rock and not my own little sand castle, to hide in that cleft, and not my own little nook I’ve carved out for myself. Everything else will fail, but God won’t.

By day the Lord commands his steadfast love,
and at night his song is with me,
a prayer to the God of my life.

I could go on to make some bold statements about how I will choose to trust God “even if _____”, but I won’t do that here. I figure, my future actions and blog posts will reveal enough of that. Hopefully they will reveal that I am learning to stand on Christ, the only solid rock.

My hope is built on nothing less
Than Jesus’ blood and righteousness.
I dare not trust the sweetest frame,
But wholly trust in Jesus’ Name.

When darkness seems to hide His face,
I rest on His unchanging grace.
In every high and stormy gale,
My anchor holds within the veil.

His oath, His covenant, His blood,
Support me in the whelming flood.
When all around my soul gives way,
He then is all my Hope and Stay.

When He shall come with trumpet sound,
Oh may I then in Him be found.
Dressed in His righteousness alone,
Faultless to stand before the throne.

Praise the Lord
We are thanking God for:
-Abby’s continued weight gain and nursing success
-no more sodium and no need (it looks like) for further foot treatments
-important lessons in learning to lean on Jesus instead of happy circumstances

Please Pray:
-that she will get back to her successful nursing and have a smooth transition to bottles
-that Abby will be able to come off of the HMF if that, indeed, is causing any problems
-for wisdom as the doctors are allowing us to make more of the (timing) decisions

Abby Update: 5 Weeks Old

Posted on October 16, 2013 by justeeni

Weight: 4 pounds!
Feedings: 33 milliliters fortified to 24 cal every 3 hours by gravity

Yesterday Dan and I were able to be at the hospital while the doctor did rounds and we got to hear a lot of news.

The amount of sodium Abby is receiving each day has been cut in half. At the end of the week, she’ll have her levels tested again to decide if she still needs it or not. Today they took some blood for some routine tests. Of particular interest to us this week is her blood count. At birth, it was 51. Last week, it was down to 27. This is normal, and it is expected that it will decrease again next week before starting its way back up. If it gets below 23, Abby may have to have a blood transfusion. When they took her blood this morning, they were hoping to also do a test to measure how well her bone marrow is doing to see if she is producing blood well on her own yet. If she’s producing well, or if she has no other symptoms, she will probably not need a blood transfusion unless her count goes as low as 20.

Abby gets to try to nurse twice a day now. On Monday night Abigail succeeded for the first time and actually ate a little all by herself. She wasn’t successful on Tuesday morning, but on Tuesday night she succeeded again and ate for six minutes before falling asleep. This morning we started to weigh her before and after feedings to find out how much milk she’s eating. Today, she didn’t get any, but we’ll try again tonight. At rounds, our doctor said that we want to wait a few days to see if she’s more consistent at “transferring milk”. Once she has a few good transfers in a row, they will talk about starting her on bottles. Our doctor warned us that it would probably not be until the end of the week or until early next week and asked us if that sounded reasonable.

Now, for anyone unfamiliar with the whole NICU routine, bottles are the final hurdle. Once a baby gets started on bottles, they will be offered bottle feedings every three hours. The amount that they take in will be subtracted from their full feed amount, and the rest will be fed by gravity. (Oh yes, I forgot to mention that Abby is off the pump! From now on, her feedings are just going in by hanging a syringe and allowing gravity to pull the milk down into her belly) Usually it’s a week or two before babies can stay awake long enough to eat all of their feeds by bottle. Once they take in all their milk by mouth, it’s only a day or two before they go home!

So, all that to say, I was thrilled at the prospect of starting bottles next week. It’s really all up to Abby, though, to see how fast she learns to eat, and can stay awake long enough to eat. Our doctor ended rounds by saying that it’ll probably be a couple more weeks before we talk about discharging her. She was sounding apologetic the whole time, but Dan and I were so happy to hear her say a couple of weeks when we were originally planning on it taking another couple of months.

Recently Dan and I bought a chest freezer where we can store Abby’s extra milk until she needs it. As I transferred the milk from our regular freezer to the chest freezer, I sorted out a lot of bottles from the first five days after Abby was born. This early milk (colostrum) is different from regular milk. It has a much higher fat content and is yellow instead of white, which is why it is referred to as “liquid gold” in the NICU. I started bringing in this colostrum on Sunday to give to Abby in hopes of boosting her weight, along with the other good stuff she gets from colostrum. Well, it must have worked. Babies are routinely weighed every other day and expected to gain around 30-40 grams (about 1 ounce). When Abby was weighed last night she had gained 142 grams (about 5 ounces). So she is now up to 4 pounds! The nurse was so incredulous about such a large weight gain that she weighed her again to check, but the second weight matched the first. Abby is officially heavy enough to ride in some car seats.

It may not be good practice to set a coming-home-date in our heads (lest we end up being disappointed), but it’s really hard not to do it. Things just seem so much nicer when there’s an end date in mind. So, after rounds yesterday, my coming-home-date-goal is November 5. Dan thinks it’ll still be a month before Abby’s home, but I’ve always been the more optimistic (impatient) one. It seems probable that Abby may be with us for Thanksgiving after all, as long as things continue on the way they have been going.

Praise the Lord
We are thanking God for:
-Abby’s success nursing on Monday and Tuesday night
-decreased sodium supplements
-the good news that we may get to start bottles soon
-a very large weight gain

Please Pray:
-that Abby’s spit up, which continues to be a nuisance, will not cause problems or get worse
-that Abby will learn to eat, and that she will be able to eat consistently
-that Abby’s blood count will not decrease very much in the next week, that she won’t need a blood transfusion

MI Taylor Family

We live in Michigan.

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