Gathering the Edelweiss of God

Abby Update: 7 Weeks Old

 photo fingers_zps7ad5c8e2.jpg

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

 photo Danmakingfaces_zps8d84576a.jpg

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

 photo snugglingwithMom_zps3e77ef5f.jpg

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:

 photo note_zpsdccec66f.jpg

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

 photo sleeping_zps1d494491.jpg

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: 40 Days Old

 photo bottle_zps2590cffc.jpg

Gestation: 34 weeks, 2 days
Weight: 4 pounds, 4 ounces
Feedings: 39 milliliters fortified to 24 cal every 3 hours by gravity or bottle

It has been a hard weekend for Abby. Here are her numbers from nursing and bottle attempts.

Friday Evening: Nursed 0, Bottled 10
Saturday Morning: Nursed 0
Saturday Evening: Nursed 34!
Sunday Afternoon: Nursed 0
Sunday Evening: Nursed 10 (Mommy’s estimate), Spit up 10, Nursed 12 more
Monday Morning: Nursed 0, Bottled 6

Percent of total feeds taken by mouth Saturday: 20%
Percent of total feeds taken by mouth Sunday: 18%

Friday night we gave Abby her first bottle. She took 10, and went on to take about 6 or 7 ml per feeding over the weekend. In the past day she has upped that to about 12 per feeding and she took half of her bottle (!) at one feeding this morning.

Abigail has been and still is fighting with spit up and digestive problems. She has not been able to fill a diaper on her own yet, but the nurses have started giving her glycerine suppositories that help her to go. The doctors don’t really like giving suppositories at this point because babies can become dependent on them. However, when Abby isn’t able to go on her own, her belly fills up, she stops digesting, she won’t nurse or bottle feed, and she spits up.

Saturday, after the suppository, Abby reached a personal record by nursing 34 out of her 37 milliliter feeding! We were thrilled. Sunday afternoon I was set up for another great success. Instead it was the worst feeding session ever.

Dan had to stay outside with Lydia because she was very tired and more than just a little too loud to be brought in with us. Now, usually, Dan takes care of getting Abby out of her crib, unhooking her wires, weighing her, plugging her back in, and handing her to me. This makes it very easy for Abby and I to get comfortable, and it’s efficient so we’re not wasting Abby’s limited awake time. Without Dan’s help I was on my own to do everything (for the first time) and it didn’t go nearly as smoothly. By the time I was finally situated and ready to feed Abby, the new neighbor baby next to us started crying. I think that distracted Abby a little more. I was flustered and she was flustered and ended up doing nothing, even though I’m sure she was hungry. Then the nurse gravity fed her too quickly and she had a couple massive spit up episodes all over me.

Sunday night Dan had a terrible headache and was stressed out and tired, but he graciously came with me so I wouldn’t have a repeat of the afternoon feed. Abby started off well, but spit it all up. We reweighed her to find that, sure enough, the weights were the same before and after. She tried again and took in 12.

Today Abby is being switched from HMF (human milk fortifier) to a concentrated liquid fortifier. Dan and I have been concerned that the cows-milk based formula may be contributing to some of Abby’s problems and don’t know if this will cause things to improve, stay the same, or get worse. We are hoping to talk to a doctor at some point about the possibility of taking Abby off of the fortifier or fortifying some other way, but we’ll wait to see how she does on this new one.

It was just last Wednesday that the doctor said she’ll probably be home in 2 or maybe 3 weeks. Today the doctor (a new one) said, “Well, it sure would be nice if she could make it home for Thanksgiving, but…we’ll see.” It’s amazing how quickly things can change.

Praise the Lord
We are thanking God for:
-Abby’s occasional nursing success
-continued weight gain
-that Abby has finally started bottles

Please Pray:
-that Abby will not become suppository dependent
-that spit up will not continue to be a problem, and that we would know if there’s something we can do to help her out
-that Abby will get back to nursing well
-that Abby will start succeeding more with bottles
-that we will be able to trust God and anchor our emotions and attitudes to Him, not being so easily elated or devestated by Abby’s success or failure

Abby Update: 37 Days Old

 photo Abbybareface_zps8a19e0d0.jpg

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

 photo smilingAbby_zps2623ea82.jpg

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

Abby Update: 33 Days Old

 photo Abbyopencrib_zps1a00664d.jpg

Weight: 3 pounds, 10 ounces
Feedings: 33 milliliters fortified to 24 cal every 3 hours given over the course of 30 minutes

I have big news to announce in today’s update: Friday afternoon, after the last update was posted, we returned to the NICU to find out that Abigail had graduated to Special Care! Furthermore, on Saturday morning we walked into the NICU to find Abby out of her isolette and into an open crib! I had been feeling a little down, praying for some sort of obvious movement forward, as we walked back into the hospital on Friday and the Lord graciously heard my prayer and answered.

On Saturday, Abby stopped receiving caffeine in her milk, but she is continuing with her sodium. Her foot also seems to be improving as she is able to move it into a “normal” position when you tickle the outside of her left foot and calf.

The next big hurdle for Abby to overcome is learning how to eat. Right now she gets to try to nurse once a day. Once she is making progress there, eventually the doctor will put in orders to start offering her bottles for her feedings. As eager as I am for that order to be put in, I know it will probably be a while (at least days, probably weeks) before that happens.

 photo LydiaandJustine_zps9e4fa094.jpg

Mini-Munchkin Update: 28 1/2 Months Old

Because I haven’t had a chance to post Lydia’s monthly update, I thought I would post at least a mini report.

Navigating the NICU with a two-year-old is no easy task, but Lydia is a sweet big sister and is handling everything remarkably well. As I’ve noted before, she just loves Abby, and all of the staff in the NICU absolutely love her. Her social skills (which were already great) have been growing as she interacts with new nurses, doctors, and techs every day. There is a “parents pantry” in the NICU with juice and some snacks for parents and siblings of NICU babies. In particular, they have these mini water bottles which are just Lydia’s size. Every day we take one trip to the reception desk and ask to be let into the pantry to get a water bottle for Lydia. Recently she became brave enough to be the one to ask “water bottle?” and even more recently she’s been able to say “pantry?” to the techs who have the access to unlock the door.

Lydia seems to be getting smarter and smarter, and her vocabulary has been growing in leaps and bounds. Her favorite phrase is “I do it!”, which she gets from her Daddy, who often says: “I’ll do it!”. Many days a weeks she spends time with a family from church and when we pick her up she’ll tell us what she did while she was there: “toys!”, or “bunny”, or “treats” (when she fed the cat treats). She has also started praying with our help and sometimes on her own will pray, “Dear Jesus, help…” but then she gets stuck. At the end, if we say “In Jesus’ name”, she’ll finish with the “Ah-men!”. She does tend to get her pronouns mixed up at the moment and often asks us to “read to you?” or “help you?” (instead of “read to me?” or “help me?”). Or, if she wants you do do something that she was doing, she’ll say “me!”(instead of “you!”).

There’s a little wooden chair in the NICU that Lydia loves to sit in. It is painted blue with a big frog on the back. On the front, underneath the seat are some smaller frogs painted in a row. This morning, Lydia surprised us by bending down, pointing to the frogs one at a time, and counting them, “one, two, three, four, five”. We’ve never had a two-year-old before to compare mathematical skills, but Dan and I were impressed. I’ve also been practicing John 3:16 with Lydia for many weeks and she’s starting to memorize parts of it. I have a cute video of her saying it with our help, and one or two videos of Lydia and Abby in the NICU, so hopefully I’ll get those posted to my Facebook page soon.

 photo Lydia_zps3dd1518b.jpg

(End of mini-Munchkin update)

As for Dan and I, we are learning that this lifestyle is not sustainable. It’s just not possible to do all of the necessary things in a day and still get a decent amount of sleep. On top of that, while we do get in three meals a day, they are often spread out. Many days I leave the hospital torn between my need to eat and sleep. If only I could do both at the same time!

Dan especially has had so much stress. On Saturday it got to be too much and, as he says, his brain exploded. He was bending over and suddenly got dizzy. For the rest of the weekend he would occasionally get dizzy and he had a headache and just felt altogether unwell. He has adopted my coping mechanism of not thinking about anything, and that seemed to help a little over the weekend. Now, however, he’s back to working, and that requires the use of his recently “exploded” brain.

While my brain hasn’t “exploded” just yet, my memory is struggling. If I don’t say what I’m thinking the moment I’m thinking it, I can’t remember what it was. Sometimes I forget my thoughts while I’m saying them and have to stop, think, and be reminded what I had just said before I can figure out what was just happening. In short, we’re tired and ready for Abby to come home! That, and Dan says we need a vacation. We continue to think, “this has got to get easier when Abby comes home”, and I’ll be sure to let everyone know which is easier when we get to that point.

Praise the Lord
We are thanking God for:
-Abby’s recent steps forward: coming off of caffeine, moving to Special Care, and graduating to an open crib
-continued weight gain: slow but steady
-Abby’s alertness, our nurse today said she’s the most alert baby she’s seen

Please Pray:
-for Abby to continue her steady progress and gain more weight
-for Dan to be able to relax and recover in spite of all the stress
-that we won’t completely lose our minds before Abby comes home!

Abby Update: 1 Month Old

 photo Abbyonemonth_zps06bc2296.jpg

Weight: 3 pounds, 8 ounces
Feedings: 32 milliliters fortified to 24 cal every 3 hours given over the course of 30 minutes

Today Abby’s nurse told us that they’ve labeled her the preemie model. She doesn’t alarm or fuss, and she’s doing exactly what they want her to. The doctor did rounds early this morning, so we missed them, but she stopped by later to give us a summary. She said that Abby’s turning the corner from “just being on the edge” (needing extra things like caffeine added to her feedings, breathing help, temperature monitoring, 1 1/2 hour long feeds to keep up blood sugar etc.) to becoming one of their standard “eat and grow babies”.

Tomorrow they will stop adding caffeine to Abby’s milk. Yesterday they reduced her feeding times to half an hour. She is gaining weight at a pleasing rate. Everything looks good. If there’s anything to complain about, it’s Abby’s frequent spit ups and her left foot, which is bent inward. Neither are a big deal right now. Eventually they will probably take x-rays of Abby’s foot to see what exactly is going on in there.

We recently had a nurse who offered to let us put Abby back in her isolette after we held her. Now, we routinely take her out and put her back for our twice-a-day holding times without the nurse’s help. This is significant because it’s difficult to maneuver all the wires, cords, and blankets, and to hold on to such a little baby and position her correctly so that her head is supported and she can breath easily. Having accomplished this task, some nurses point out that we’re practically qualified to work in the NICU ourselves. I can’t say I like having spent so much time there that I know how to do a lot of “nurse tasks”, but it does feel nice to be the one to pick up your own baby.

Abby’s neighbor was recently transferred across the hall to the “Special Care” unit. When Lydia was in the NICU, she was transferred to Special Care early because there were a bunch of preemies admitted at once and they ran out of room in the NICU. Usually Special Care is for the “eat and grow babies”, those that have no real problems, just need to get bigger and learn to eat. With Abby’s progress lately, I’ve been curious when she’ll be transferred, and maybe a little impatient. Abby’s next stops will be learning to eat (that one will take a while), graduating to an open crib, and moving across the hall.

Praise the Lord
We are thanking God for:
-continued weight gain and steady progress
-nurses who let us take care of our own daughter

Please Pray:
-that Abby, Lydia, Dan and I will stay healthy…it was around this length of time in the NICU that Lydia got sick and we don’t want the same thing to happen with Abby
-that Abby would soon be able to come off her sodium and grow big and strong enough to make more “steps” forward (mentioned above)
-for our patience and perseverance

Abby Update: 4 Weeks Old

 photo LydiaandAbby_zps07ace87d.jpg

Weight: Just under 3 pounds, 6 ounces
Feedings: 30 milliliters fortified to 24 cal every 3 hours given over the course of 1 1/2 hours

Well, that’s right. Abby lost a little weight. It’s nothing to be concerned about, especially because her digestive system decided to kick in and she’s had three very full diapers in the past couple of days. Overall her weight trend is increasing, so no one is worried.

We’ve finally surrendered to the fact that Abigail has reflux. She just spits up. She especially spits up if you move her when she has recently eaten. She’s a strong breather though, and even when she does spit up she manages to (usually) keep her oxygen level, breathing and heart rate up. Often spit ups trigger respiratory and cardiac events, which is when the heart rate drops very low, the breathing slows down or stops, and the oxygen level in the blood drops. Lydia had more events than Abigail has so far and on one occasion Dan was there when she started turning blue. So, we are grateful that Abby doesn’t seem to have the same troubles.

This morning Abby had an eye exam while Dan was holding her. It is very common for preemies to have eye troubles, but some of them can be corrected if caught early enough. Todays exam was normal. Her eyes are developing just how they should.

The doctors and nurses are full of encouraging words for Abigail (and us). She’s right on track and, mostly, we’re just waiting for her to get a little bigger and a little older. Then the next hurdle will be learning to eat.

On Monday night we had our first real difficulty with Lydia. She’s been a trooper all along and has even enjoyed spending so much time with other families while Dan and I go to the NICU. This Monday we decided to let her stay up a little later while a couple from church came over to babysit. We got her ready for bed but told her she could play for a while after we left as long as she would go to bed when she was told to. When Dan and I were about to walk out the door, Dan turned to say goodbye and Lydia suddenly realized we were leaving and just lost it. Dan held her while she cried for a while and eventually we were able to distract her a little, and then we left. I guess she was fine after we were gone, but Dan and I think she’s getting just a little tired of spending so much time away from Mommy and Daddy. Having to leave a crying toddler to go see your other baby makes the goodbyes a whole lot harder.

On the other hand, Lydia absolutely loves her little sister. Often when we are in the NICU together, Lydia asks if she can “hold her!”. At home, she asks to and practices sometimes with her dolls. When we leave the NICU, Lydia insists that we all hug and kiss Abby’s isolette. When we have her out, Lydia often gives her a kiss or pets her head. When we read books, Lydia points to the girls in the pictures and says, “Abigail”. And when we pray for Lydia at night, she interrupts our prayer whispering, “Abigail! Abigail!” until Dan prays for Abigail too. We try to encourage her to look forward to when Abby can come home and then we’ll let Lydia hold Abby.

Praise the Lord
We are thanking God for:
-the good report from Abby’s eye exam
-Abby’s strong lungs, able to keep her going even when she spits up
-that Lydia loves Abigail so much

Please Pray:
-that Abby will not have any more weight losses, only gains (and big ones!)
-for Lydia as we continue to leave her for a few hours almost every day
-for us as we often have to leave one daughter to be with the other, Dan often tells people this feels like having two separate families and it really wears you out (in every way)