Abby Update: 6 Weeks Old

Posted on October 23, 2013 by justeeni

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

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

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

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

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

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

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

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

Abby Update: 37 Days Old

Posted on October 18, 2013 by justeeni

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

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

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

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

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

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

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

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

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

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

then I’ll be fine.

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

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

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

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

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

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

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

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

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

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

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

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

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

Abby Update: 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)

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

This is When Things Get Hard

Posted on October 1, 2013 by justeeni

Life in the NICU is really unlike any other place. On one hand, everything is so medical and sterile. Everything is done according to procedure and an official doctor’s order has to be put in for anything to be changed. On the other hand, as the doctors make their rounds they are discussing things like spit up and wet diapers. To be honest, it’s a nice place. The nurses are (mostly) sweet and the doctors are extremely friendly. Everyone offers to answer questions, bring (somewhat) comfy chairs to our baby’s bedside when we arrive, and even get us bottled or ice water.

With Lydia, I noticed a bit of a progresion. The first week in the NICU was a whirlwind, so busy and exciting. The second week, we fell into a routine and it was almost (I did say almost) fun going to the hospital each day to get our updates and hold our baby. But by the third week it wasn’t fun anymore. No matter how sweet the nurses or kind the doctors, all those runs back and forth to the hospital got old.

In the NICU, your whole life is put on hold. Your schedule revolves around Baby’s eating times (every three hours). You go back and forth to and from the hospital, returning home only for meals and sleep. You don’t keep up on anything that isn’t necessary. You boil your activities down to the most important: washing dishes and clothes, cleaning the bathroom frequently enough so that it doesn’t grow mold, and paying bills. Everything gets done efficiently or it won’t get done at all.

Last night I hit the same wall that I did during Week 3 with Lydia. Yes, there were overwhelming moments in those first couple of weeks. This is a different kind of hard, a long sad hard. We miss Abby when we’re home. I’m just a little down most of the time, and really down some of the time. Even when I’m holding her, I’m wishing for “normal”.

Abby is doing well. Yesterday a physical therapist looked at her left foot, which has been turned inward since she was at least 20 weeks gestation. So now during each “hands on” time we or the nurses do some “exercises” rotating her foot. Today Abby had some blood work done which came back mostly normal, but her sodium levels are low. So she’ll be getting a sodium supplement added to her feedings probably for a couple of weeks at least. Her weight last night was 1320 grams, down from 1330, but the nurse was also using a different scale, which probably accounted for the difference. Overall, she’s just eating and growing with no major concerns.

It’s still hard.

I know that God is still good. I know that Abby won’t be in the NICU forever. The time will go by quickly for everyone else. (But it would probably not be best to approach Dan and I in a couple of months and comment on how quickly the time passed) I know that suffering is used for good in our lives. But it’s still suffering. It still hurts. We’re still hoping and trusting and hanging on, but we still miss our baby.

God moves in a mysterious way, His wonders to perform;
He plants His footsteps in the sea, and rides upon the storm.

Deep in unfathomable mines of never failing skill
He treasures up His bright designs and works His sovereign will.

Ye fearful saints, fresh courage take; the clouds ye so much dread
Are big with mercy and shall break in blessings on your head.

Judge not the Lord by feeble sense, but trust Him for His grace;
Behind a frowning providence He hides a smiling face.

His purposes will ripen fast, unfolding every hour;
the bud may have a bitter taste, but sweet will be the flower.

Blind unbelief is sure to err and scan His work in vain;
God is His own interpreter, and He will make it plain.

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

Abby Update: 2 Weeks Old

Posted on September 25, 2013 by justeeni

Weight: 2 pounds, 13 ½ ounces
Feedings: 23 mililiters fortified to 22 cal every 3 hours given over the course of 1 hour

Abby keeps on cruising along. Preemies are given lipids and TPN through a PICC line. The lipids are basically fat. The TPN is basically food. As Abby has increased her feeding amounts each day, she has needed less and less of the lipids and TPN. On Sunday the doctor gave orders to stop lipids and on Monday her TPN was replaced with clear fluid. Yesterday they took out her PICC line! So now little Abby only has a feeding tube and the leads that monitor her breathing, heart rate, and oxygen level.

Yesterday the nurses started to feed Abby by connecting her food syringe to a pump that slowly gives her the food over the course of half and hour. Today they slowed it to one hour. Previously the food was just “plunged” in the syringe and given to her by gravity. However, research seems to show that babies do better with the slower, consistent rate of food being given using the pump. We’re hoping this helps reduce the amount of milk Abby is spitting up. Preemies often develop reflux, so it’s not terrible if she does too, but we’re hoping to pump will help.

Now that Abby has reached her “full feed” amount of milk, she has started receiving fortified milk. This means that formula is added to the milk to give it extra calories and is pretty typical for every preemie. We’ll wait and see over the next few days to find out how much weight she starts to gain with full feeds and fortified milk.

As for the rest of us, thank you all for your prayers! Yesterday as I held Abby I was so filled with thankfulness and peace as I reflected on God’s leading in all of this. What a change that was from a few nights ago! I am encouraged to think that “the sufferings of this present time are not worthy to be compared with the glory that will be revealed” and also that our trials and suffering produce perseverance, character, and hope. I have also been thinking about how God definitely does give us more than we can handle on our own, but never more than we can handle with His help. God has been helping us and the past couple of days have been so much better. We are so thankful.

On Monday night, a couple from church came over to babysit while Lydia slept and Dan and I got to spend some nice time alone with Abby. Dan also started going in to work for a few hours on Monday and Lydia and I have been surviving alright without him. Since I’m not able to lift Lydia for two more weeks, I’ve been building “stairs” up to her high chair and crib for lunch and nap times. The first day was rough at nap time, but she’s figuring things out and cooperating very sweetly.

We are growing more and more certain that Dan’s nausea was due to stress, lack of sleep, and irregular meals. As we continue to adjust and figure out a routine all of those things have been starting to improve. I am enjoying our new apartment a lot already, even without having unpacked anything yet, and Lydia loves it here now that Dan has started taking her to the pond to feed the ducks every day or so. Since we expect to spend another 6-10 weeks in the NICU and then have a newborn at home, we know that we’ll be sleep deprived for quite a while (though I, at least, get a nap a day when Lydia naps) so if anyone has any tips for keeping our energy up besides drinking caffeine, we’re all ears!

Praise the Lord
We are thanking God for:
-Abby’s continued progress, that she is off her PICC line and continuing to breath well
-a new normal, settling into some sort of structure and no longer feeling quite like chickens running around with our heads cut off
-an apartment that is already feeling like home (to me) and doesn’t appear to be the cause of Dan’s illness
-that our first little munchkin has done so well with an irregular schedule, lots of different babysitters, late bed times, and less play time with Mommy and Daddy
-generous friends who have offered help in so many ways: watching Lydia, providing healthy food and gift cards, and so many who are praying

Please Pray
-that Abby would gain weight quickly, continue to breath and digest well, and not have problems with reflux
-for a more consistent routine for us
-for strength as we are both (Dan and I) very tired

MI Taylor Family

We live in Michigan.

Tag Archives: Neonatal intensive care unit