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

Abby Update: 33 Days Old

Posted on October 15, 2013 by justeeni

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.

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.

(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

Posted on October 11, 2013 by justeeni

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

Posted on October 9, 2013 by justeeni

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)

Suffering and the Sovereignty of God

Posted on October 7, 2013 by justeeni

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.
2 Corinthians 1:3-4

Edit: The sermon mentioned in this post is now online in video and mp3

Sundays are the hardest days for me. It was the same when Lydia was in the NICU. I’m not sure exactly what it is…maybe it’s seeing all the families together at church. Maybe it’s all the babies being held by their mama’s when I don’t get to have mine with me. Partly, I think it is the worship songs. Songs that we sing during church are full of deep truths about God: His lordship, His holiness, His sovereignty. They confess that God is in control, that He is good in all He does, and that we are joyfully, willingly surrendering all and worshiping this God. On a typical Sunday these are all fine and wonderful things. However, when you’re struggling through a trial, those truths hit a little deeper and a little harder. You think a lot more before you sing something out loud. Surrendering to God’s control carries a new weight to it because you know that it might mean going through something hard and still confessing God’s goodness.

Anyway, whatever the full reason is, Sundays are my hardest days. When our kind friends at church ask “How are you doing?”, half the time I start crying. Then I have to reassure them that Abby is doing fine, great, in fact. “So, what’s wrong?”

Dan asks me the same thing when I get down sometimes at night, right before I go to sleep. “What’s wrong?” And he is usually rewarded with a drawn out list:

Our sink won’t drain. The garbage disposal is broken.
The handle just fell off our laundry room door.
My peanut butter spatula** is gone.
I’m tired.
Our house is a mess.
And my baby is in the hospital.

**my peanut butter spatula, which I was thrilled to re-discover when we moved after a summer of being packed away, is a thin “icing spatula” that I use to clean out jars, mainly peanut butter jars which we go through multiple times a week. Since the first time I got to use it in this apartment, it has mysteriously disappeared.

The list varies, depending on what new stressors have come up, but I always end it the same. My baby is in the hospital.

And then, at other times, I feel perfectly fine. Sometimes I can prance into the NICU like it’s “just another normal day” and smile and hear an update on Abby. Sometimes it doesn’t feel like a big deal at all. She’s stable, doing well, doctors are pleased, and will be home in a month or two.

Is this suffering?

Prior to our latest discovery during Abigail’s birth, I never really had a reason to grieve. I’m sure I’ve heard loads of sermons, and plenty of Biblical teaching on grief and suffering, but I must never have had enough motivation to really pay attention. Starting the night after Abby was born, I began to wonder what the Bible really says about grief.

Since I know others have suffered far more than me, is it ok for me to be sad?
Do I deserve to be rebuked for being so down?
Is it wrong for me to be hurt when people act like this is all “no big deal” and tell me it will “be over before you know it”?
Am I overreacting?
How much of this really is just postpartum hormones?
Will I offend those people who have suffered greater things?
How do I respond when well-meaning people say things that don’t comfort me at all?
Since our troubles are small to God, is He annoyed that I can’t just “get over it”?

How fitting it was yesterday, when our guest speaker at church preached a sermon on “Suffering and the Sovereignty of God”. Not only was it a fitting sermon, our speaker was a pediatric heart surgeon who operates on babies, has operated on preemies at the very hospital where Abby is, and knows all of her doctors and much of the other staff there. And he is one of those people who has suffered greater things than I have.

But at the same time, he was full of compassion. He spoke with gentleness and kindness and wisdom and truth. Early in the sermon, he made the point: we should never trivialize the sufferings of others. And we should never claim to fully know God’s purpose in allowing suffering into someone else’s life.

And so, in perfect timing, God answered many of my questions. No matter what trial I am going through at any given time, it is the trial which God has allowed into my life for a reason. It may not be hard in someone else’s life, but it will be hard in mine. And God, who created me, knows that and has compassion. God, who sees all and knows deeper love, joy, hope, and pain than I ever will, isn’t offending by my suffering. He offers comfort. And He uses suffering to fulfill His purpose in my life.

As far as others are concerned, it isn’t a ranking system of suffering. Just because someone has suffered more than someone else, doesn’t mean they are special, or stronger (or weaker), or godlier than anyone else. As Christians, we aren’t supposed to compare or belittle anyone’s sufferings. God only asks us to enter in to their suffering, to “weep with those who weep” (Romans 12:15).

I hope that, through this time in the NICU and the disappointment of never being able to have a full-term baby, Dan and I will become more compassionate Christians who are equipped to enter in with others who are suffering. Even if the suffering seems small in our eyes. Even if the suffering seems like something harder than anything we’ve experienced, something with which we could not honestly relate.

And now, because I know Abby’s fans, followers, and prayer warriors need their update…

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

Abby had another pleasing weight gain last night. She has been struggling to digest lately, having more leftover milk in her tummy at the following feeding times, and going whole days without a dirty diaper. She has also started spitting up again. For now, we are just waiting it out. She’s still young and small and will, hopefully, outgrow these problems.

Now that Abby is 32+ weeks old, she will start receiving iron in a couple of her feeds. Lydia, when she was in the NICU, hated her iron and it always made her spit up. Preemie’s aren’t able to produce red blood cells on their own without receiving extra iron, because most babies get their iron stores built up from Mom during the last weeks of pregnancy. Abby never got that. So we’ll see how she does with these supplements added to her “salted caramel lattes”.

On a brighter note, the physical therapist stopped by today and took a look at little Abby. She was impressed. Her feet may or may not be improving, it’s hard to tell. However, Abby is “very social”. Most babies favor either their hearing or sight, but apparently Abby is excelling at both. When Dan talks to her, she will turn her head and look at him. At the same time, when she’s awake she is “bright eyed” looking around at everything. Tonight we’re going to bring in some family pictures to put above her in the isolette, so that she can “look at us” even when we’re not there. (Just a side note: Dan and I recently learned that Lydia’s isolette, her “bed”, costs $45,000. Yikes!)

Lydia remains the NICU’s favorite toddler. A while ago one of the neonatologists (there are five that rotate) tried to befriend Lydia a little unsuccessfully. Dan informed the doctor that Lydia likes stickers (which are available in ample supply at the reception desk). Yesterday the doctor was back on and brought us two packages of stickers that she had gone out and bought just for Lydia. Originally she bought her some other toy but it was for ages 3 and up, and she didn’t want us to sue her. Lydia happily took the stickers and ignored the doctor. Dan says you just can’t buy her friendship.

Praise the Lord
We are thanking God for:
-Abby’s development: seeing and hearing
-Lydia slept in this morning, which meant Dan got to work a little more and I got to sleep at little more
-answers to my recent questions regarding suffering
-that God is compassionate and gracious to us all

Please Pray:
-that Abby will stop spitting up, start digesting more regularly, and that her feedings will be able to be reduced from 1 1/2 hours long to just 1 hour
-that Abby will tolerate the iron well, and it won’t cause her to spit up more
-that Abby would continue to gain weight and that her exercises would work to straighten out her left foot
-that Dan and I will figure out a better routine now that I am (close to being) able to drive (starting Wednesday)

Abby Update: 24 Days Old

Posted on October 6, 2013 by justeeni

Weight: 3 pounds, 4 ounces
Feedings: 28 milliliters fortified to 24 cal every 3 hours given over the course of 1 1/2 hours

Abby has had two solid weight gains in a row and is now up to the same weight Lydia was when she was born. Maybe she’s getting older and more stable, or maybe it’s all the avocado we’ve been eating around here lately. Most certainly it is an answer to many, many prayers.

The doctor ordered a repeat sodium urine test, but it still came back low (even with sodium supplements) so they believe her kidneys are actually doing a good job. The doctor seemed to be going a little fast during rounds as they discussed her sodium, guess he was afraid we’d hold him to his one month salary bet. 🙂 Abby will stay on sodium supplements and they will continue to check her sodium levels in her blood until things balance out.

Meanwhile, nurses have been commenting that Abby “acts like an older baby”. She can keep her temperature up well and is very alert at feeding times. All of these are very good things. Now that Abby has reached 32 weeks, we have the go-ahead to let her try and nurse, although she probably won’t actually succeed for a while. It’s good practice.

The rest of us are “hanging in there”. We’re tired and we miss Abby. But we are happy to have another week behind us, one less to go. My recovery is going well and today I was even able to watch Lydia (by myself!) for Abby’s hour and a half feeding while Dan held her. Sometimes Lydia will cooperate enough to stay in the NICU for a while when one of us is holding Abby and those times are extra special because we actually get to feel like one whole family.

Praise the Lord
We are thanking God for:
-Abby’s weight gain and her alertness during feeding times
-Another week down and that Abby has reached the 32 week mark
-My healing and ability to do more now so that Dan can hold Abby more often

Please Pray:
-that Abby will continue to gain weight as that may very well be the limiting factor in when she can come home
-that we will have a good opportunity to let Abby try to nurse, when she is very awake, and that she’ll learn quickly
-for continued perseverance

Abby Update: 22 Days Old

Posted on October 3, 2013 by justeeni

Weight: 3 pounds, 1 1/2 ounces
Feedings: 28 milliliters fortified to 24 cal every 3 hours given over the course of 1 1/2 hours

No news is good news.

We don’t keep babies until Kindergarten.

Lydia is so cute!

These are some of the most commonly used phrases in the NICU (lately).

First of all, Abby is continuing her stable pace. She’s has officially reached her birth weight, and passed it. And her feedings have increased along with her weight. Over the past couple of days her spit ups have decreased significantly, which is an answered prayer. The nurses (and Dan and I whenever we’re there) are doing some foot exercises at each feeding time to try to straighten out her left foot. We’re unsure yet whether or not we notice any improvement.

Abby’s recent blood work showed that she was very low in electrolytes so she has been receiving a sodium supplement which is added to the milk at each feeding. Because of the gestation at which she was born, Abby also received caffeine in each feeding (that’s to help stimulate brain activity). So we’ve dubbed her feedings salted caramel lattes. An interesting little tid-bit to go along with the sodium update is that it’s common for preemies to have trouble holding on to sodium because their kidneys are immature. To check this, the doctor ordered a urine test for sodium. Typically the urine test comes back high in sodium because the baby is losing sodium in the urine as the kidneys are failing to absorb the sodium Baby needs. However, despite our doctor’s insistence (he jokingly bet his monthly salary) that the urine sodium count would come out high (around 70), it came back very low (14). In fact, we tried to hold him to his bet, but he ordered a repeat test today because he’s convinced it must have been a bad test. Dan and I are trying our own little experiment upping my sodium intake to see if that helps Abby out any. I’ll have to report back later on the results of our experiment and whether our doctor can keep his salary or not!

So Abby is cruising along. Most times when we show up our nurse welcomes us with “no news is good news”, and we continue our long wait for Abby to come home.

The rest of us are doing fairly well. Life is a roller coaster as we keep trekking back and forth to and from the NICU, leaving Lydia with different church families while we go, and getting way too little sleep. Dan is trying hard to get in his time for work and spend time with his girls. We sure do miss Abby. While the hours go by way too fast (to get anything done), the days are still long, and the weeks are longer.

Meanwhile, Lydia has made a name for herself among the medical personal at St. Joe’s! The techs (clerks at the front desk of the NICU) shower Lydia with praises and stickers. The janitor does too. The nurses welcome her as we enter and head to Abby’s bed. The respiratory therapists stop by to marvel about how well she is talking. The neonatologists gush to others about how Lydia was in the very same NICU two years ago, and “just look how cute she is!”. One doctor opened our curtain while we were holding Abby this morning because she “just had to see Lydia”. Then, as the small team of doctors, therapists, and nurses made their way to our bedside for rounds, we heard some exclamations of, “Oh! Is Lydia there?” from behind the curtain. And of course, everyone we passed on our way out said goodbye…to Lydia. Yes, she may just be the most popular NICU visitor these days.

Praise the Lord
We are thanking God for:
-Abby’s steady progress, reduced spit up, and recent weight gain
-Lydia’s good behavior and that she is handling this crazy-ness so well
-Dan’s employers patience and understanding as he works odd hours and doesn’t often make it in to the office

Please Pray:
-that Abby would gain weight, and that her sodium levels would reach what they should be even without supplements
-that Abby’s foot would straighten out and she wouldn’t need any invasive treatment
-that the rest of us would get more sleep, or that God would graciously multiply the sleep we are able to get
-for wisdom as we try to see Abby, parent Lydia, and get Dan’s hours in at work
-for our patience and perseverance for the still long road ahead

Abby Update: 18 Days Old

Posted on September 30, 2013 by justeeni

Weight: Almost 2 pounds, 15 ounces
Feedings: 25 milliliters fortified to 24 cal every 3 hours given over the course of 1 1/2 hours

This week Abby is just making slow and steady progress. Now that she is off the breathing support and has reached full feedings, she really just needs to keep doing what she’s doing and gain weight. Once she reaches 32 weeks, she’ll be allowed to start learning to nurse (although it will probably take two or three weeks before she “gets it”). Until then, this Saturday, no news is good news.

Abby has continued to spit up at the end of her feedings. On top of that, her blood sugars were starting to drop. So the nurses began to check her blood sugars a couple of times a day. This weekend they extended her feedings to stretch over 1 1/2 hours to try to help the blood sugar issue. Dan and I were just thinking today that Abby is literally eating half of the time! Today her blood sugar levels were nice and high so tomorrow she will probably go back to hour long feeds. As for the spit up issue, she continues to spit up, especially if we move her at all, but the amount is small and no one is really concerned.

For about the past week Abby has only been gaining about 15 grams (half and ounce) every two days. Now that she is getting 25 ml every three hours and it’s being fortified to 24 calories, she is expected to gain faster. Since the last weight check (they weigh every other day) she gained 45 grams (about an ounce and a half) which is much better.

On Friday Abigail reached the age at which Lydia was born. I pulled out Lydia’s NICU scrapbook and have been reading my updates that correspond to Abby’s current age. Contrary to how things have seemed to us, Abby is not progressing faster than Lydia. In fact, they’re pretty much at the same pace. However, with a busier schedule and a toddler to chase around, time seems to be going faster this time. And Dan and I were commenting that, although we never would have expected to say this a couple of years ago, Abby makes Lydia look like a chubby baby. Hopefully that won’t be the case for long!

As for the rest of us, we’re doing much better than we were a week ago. Dan’s Mom came down last Wednesday and stocked us up on some fresh produce. Then, his Aunt Debbie joined her on Thursday and together they unpacked us and moved us in. This is the second time we’ve had a baby in the NICU and had to have others move us in and it is SUCH a blessing. Now we don’t have to go home to boxes and dig around to find our stuff.

Our NICU Routine

How do you manage parenting a toddler and spending time with a NICU preemie? Leading up to Abby’s birth I really thought this would be completely impossible. When Lydia was in the NICU we were busy enough, never eating regular meals, never getting to the grocery store, never getting any sleep…however God gives us the grace we need to meet our present needs. Three different families are taking turns watching Lydia from Sundays through Fridays and we keep her all day on Saturdays. For a family that never left Lydia with anyone ever, it’s a little strange to pack her a lunch and drop her off at someone else’s house, but we are grateful for the help. Another family is picking up fresh produce for us once a week and bringing it to us at church. We’ve put together a weekly meal plan and have actually been able to sit down together for dinner almost every night. Other families have helped by bringing food, gift cards, and gifts for Abby. We certainly would be floundering without our family and church family.

Others have asked how they can help. At the moment the best thing anyone can do for us is pray. For those who are able, we do enjoy having visitors and showing off our tiny bundle. I’ll post the times we are usually at the hospital and available for visitors, but it’s always best to give us a call ahead of time to make sure we’ll be here so you don’t waste a trip. The bold times are when we have Lydia with us and are easier times for us to have visitors as we probably won’t be holding Abby during those times. (Getting to hold Abby is quite the process. We have to get her out of her isolette with all those wires and wrap her up in warm blankets with Mom or Dad. Then she gets her feeding while we hold for an hour or more. We usually don’t have people in to visit while we are holding.)

Sunday: 1:30 PM – 2:30 PM (we come right from church) and 7:30 PM – 9:30 PM
Monday: 10:30 AM – 11:30 AM and 7:30 PM – 9:30 PM
Tuesday: 10:30 AM – 12:30 PM and 4:30 PM – 5:30 PM
Wednesday: 10:30 AM – 11:30 AM and 4:30 PM – 6:00 PM
Thursday: 10:30 AM – 11:30 AM and 7:30 PM – 9:30 PM
Friday: 10:30 AM – 12:30 PM and 4:30 PM – 5:30 PM
Saturday: 10:30 AM – 11:30 AM and 4:30 PM – 6:30 PM

Praise the Lord
We are thanking the Lord for:
-Abby’s continued progress with no major bumps in the road yet
-generous friends and family who have helped and are helping with moving, food, and watching Lydia
-a more relaxed pace as we settle into a routine
-a sweet husband who has been sacrificing his turns to hold Abby and letting me hold her instead (he says it’s “good for a Mommy’s heart)

Please Pray
-that Abby would gain weight and that spitting up would not be a problem
-for continued healing for me…it takes a long time to recover from a c-section, I am learning
-for strength, energy, and endurance for all of us as this is a tiring lifestyle

The Birth Story I’ll Never Tell

Posted on September 27, 2013 by justeeni

As our due date approached, Dan and I felt very prepared for labor and delivery. I had studied up on childbirth and knew what to expect and different methods for coping with the contractions. I had written up a “cheat sheet” for Dan, telling him what I wanted him to know and what I wanted him to do to help me during labor, without getting into too much of the medical jargon or graphic details (he doesn’t do so well with anything medical). We were hoping for a natural birth, but were surrendered to whatever course God had for us. When my water broke, I called Dan at work and let him know. Soon enough we were at the hospital, and Lydia was being watched by a family from our church. Labor progressed steadily and just when I didn’t think I could take it anymore, our sweet baby was born. She let out a cry and the doctor handed her to me to hold right away, just like I had wanted. The next couple of days were filled with happy phone calls, lots of pictures, and some welcome visitors. Lydia came to the hospital to visit and we let her hold her new baby sister. She was so proud, and she even started learning to say her name! Two days after delivery, Dan wheeled me down to the hospital entrance and our nurse followed wheeling a cart with some flowers, a balloon, and the rest of our stuff. I got to hold the baby. Dan went to get the car and we loaded everything up and drove home. It felt good to sleep in my own bed in the apartment we had just moved in to a couple of months before our due date. Dan’s mom came down for a week to watch Lydia and I mostly rested with the baby as generous ladies from church provided us with two weeks worth of meals…

If you have been following this blog for any amount of time, you know that this was not our story. Lydia, our first little munchkin, was born 9 weeks early. Abigail, our second, was born 11 ½ weeks early. The births were eerily similar: my water broke when I was sleeping at around midnight, contractions started within an hour, the doctors were unable to stop or slow labor, and we found ourselves in the NICU with a preemie. This time, however, we had to have a c-section.

While the doctor was “putting me back together” and I was laying paralyzed on an operating table, she told me that she thought she knew the reason I was having early babies. Then Dan and I both thought she said I had a unicorn inside of me. Finally we got things cleared up a little bit and learned, as the doctor and nurses looked inside of me like some sort of weird science project, that I have a unicornuate uterus.

Photo Credit: loveandmarriageblog.com

Basically that means that, half of my uterus is just solid muscle with no cavity, and the other half is normal. That also means that, when I’m pregnant, my babies only have half of the amount of room to grow, so when Baby reaches about 3 pounds, she runs out of room. My water breaks, labor starts, and we have another preemie.

I had a long talk with my OB a couple of days after Abby was born. Yes, I am still able to have more children. However, I will probably never make it past 32 weeks gestation. And, I have an increased chance of having breech babies.

The night after Abigail was born, I woke up in the middle of the night and was awake for a couple of hours trying to process this new information. I had a few difficult realizations:

I will never get to nurse my newborn.
I will never get to hold my newborn baby.
I will never get to bring my babies home with me when I’m discharged from the hospital.
My deliveries will always have to take place in the operating room adjacent to the NICU so my babies can be rushed out of my sight to the waiting team of doctors and nurses.
My babies will always have to spend weeks or months in the NICU.

There have been so many thoughts swirling around in my head since this discovery. This is perhaps the most significant event in my life so far that has made me mourn the affects of sin, the curse, and the brokenness in this world. It makes me long for heaven.

This morning, as I was thinking about all of this once again, I pulled out one of my favorite missionary biographies on Amy Carmichael, A Chance to Die. There is one chapter in particular that describes a year in Amy’s life when two of her spiritual mentors died and then one of the children that she had rescued as a baby also died. Many people began to console Amy by saying “It is very hard to see how this can be for the best”. Amy responded,

“We are not asked to SEE. Why need we when we KNOW? We know – not the answer to the inevitable Why, but the incontestable fact that is is for the best. “It is an irreparable loss, but is it faith at all if it is ‘hard to trust’ when things are entirely bewildering?”

So, as Dan and I continue our NICU visits, and eventually bring Abby home, we’ll keep processing this news and its implications for our family. And we will continue to cry out to God for grace to trust that all of this is for the best. I know there are plenty who have suffered far greater losses than this, and I don’t mean to minimize their trials. I’m just trying to be a little transparent about the trials God has allowed into our lives, hoping that some will be comforted or encouraged.

And shall I pray Thee change Thy will, my Father,
Until it be according unto mine?
But, no, Lord, no, that never shall be, rather
I pray Thee blend my human will with Thine.

I pray Thee hush the hurrying, eager longing,
I pray Thee soothe the pangs of keen desire –
See in my quiet places, wishes thronging –
Forbid them, Lord, purge, though it be with fire.

And work in me to will and do Thy pleasure
Let all within me, peaceful, reconciled,
Tarry content my Well-Beloved’s leisure,
At last, at last, even as a weaned child.

Amy Carmichael

MI Taylor Family

We live in Michigan.

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