Abby Update: 9 Weeks Old

Posted on November 13, 2013 by justeeni

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

Right now, everyone is just waiting on Abby. On Monday she had lost 10 grams (1/3 of an ounce). Tuesday she stayed the same. Today, however, she gained 36 grams (1 ounce)!

Every feeding time has become a circus act of trying to feed, frequently burp, and hold Abby all while moving her as little as possible. I think it might be working, even though she still spits up at almost every feed. The nice part for us is that she eats like a champ, and frequently wants to eat more after spitting up. On Monday night Abby finally nursed again, and then spit up more than she took in. Then she followed up with a full bottle which she did manage to keep down. Other than that one feed Abby still won’t nurse. We’re trying not to focus on that right now and just try to get enough food in her however she will take it.

Edit: Abby did nurse again this morning and took in 42 milliliters, a full feed!

Abby’s blood and urine cultures came back looking good, which means she doesn’t have an infection. Still, we’re holding off on the hernia surgery until she is a little more stable, consistently gaining weight. It’s possible that she may have her surgery Monday morning.

Abby’s isolette temperature is set at 27.5 degrees Celsius. Every three hours, they take her temperature, and if it’s a little high, they’ll turn down the isolette by half a degree. When it gets down to 26, she can move to an open crib again.

Everyone was so excited at rounds today because of Abby’s big weight gain, that they jumped right to talking about discharge. No, she is not ready to go home yet. But now that she gained weight once, everyone is eager to send her home soon (babies always do better once they get home).

Dan and I are hanging in there. One night as we walked into the hospital, I was insisting that I can’t take any more. It’s one thing when you feel like you can’t take it. It’s another matter when your body starts having problems. Dan and I have been getting a lot of headaches, and mine threaten to become migraines that make me sick and keep me from being able to do much. Dan suggested that it must be possible to handle all of this without “freaking out” or completely “losing it”, because “Hudson Taylor could do it”. I pointed out that, while Hudson Taylor was able to handle trials, heartache, responsibility, and all other sorts of stress all while calmly and peacefully “resting in Jesus”, he did have two wives that both died. Well, in light of our stress and that conversation, we’ve been re-reading a favorite book of ours, Hudson Taylor’s Spiritual Secret during our numerous car rides to and from the hospital. I think it might be helping.

Praise the Lord
We are thanking God for:
-that Abby gained weight!
-that it seems like Abby might be spitting up slightly less
-that Abby doesn’t have an infection
-a couple of successful nursing attempts in the past few days
-Hudson Taylor’s story and the encouragement it has given us

Please Pray:
-that Abby will continue to gain weight, spit up less, and keep her temperature up
-that our family will continue to “hang in there” until Abby comes home
-that Abby won’t have any more setbacks

Abby Update: 54 Days Old

Posted on November 4, 2013 by justeeni

Gestation: 36 weeks, 2 days
Weight: Not sure…
Feedings: However much she wants by bottle

Between going to church and visiting Abby yesterday Lydia didn’t get laid down for a nap until well after 4:00. And when we did lay her down she was so overtired that she just cried and screamed. Finally I picked her up and sat with her curled up and sniffling in my lap as I rocked in the glider.

Overtired myself, I thought, “I can’t do this anymore.”

For a while my mind continued to list all of the things I have to do and how I just can’t take anymore. Then, it was almost like someone said to me, “What are you doing right now?”

Rocking Lydia.

Then that’s all you need to do.

And so, in a simple way I was reminded that God never promises strength in advance for everything we have to do next, but He certainly provides the strength we need for the moment. So Dan and I have been living lately, drawing moment by moment the strength we need from the only One who won’t ever run out.

Are you ready for a crazy weekend?

Friday, I left you all with Lydia sick and Abby about to get an abdominal x-ray. Thanks, I believe, to the goodness of God and lots of prayers, Lydia was sick and better all within three hours. It was a rough weekend keeping her out of the NICU, but it was really only for a couple of days and we made it through. Friday night was almost a disaster for me when Dan went to see Abby and I stayed home with Lydia. I decided it must be a crime to keep a parent from being allowed to see their baby. Lydia and I did some projects together to pass the time and ended up setting up Abby’s bassinet for when she comes home. We made it.

Abby’s x-ray was normal. However, she continued to spit up through the weekend, and she continued not stooling.

On Saturday, while Dan was helping feed Abby in the morning, she got her feeding tube out. Dan quietly suggested that if she was eating well maybe they would just leave it out this time. At the next feeding, the nurse put a new feeding tube in, but Abby promptly got that one out too. So they left it out! At 5:00 on Saturday night the doctor put in order that Abby was to be “Ad Lib”.

Ad lib feeding is usually the last step for NICU babies. It means they have taken their bottles well by mouth (Abby was at 74%) and are close to discharge. It’s usually only 24-48 hours before they go home, once they’re ad lib. During this time, babies can eat any time they are awake and looking hungry within 2-4 hours from their previous feeding time. While their amounts are still recorded, they can eat as much or as little as they want as long as they gain a decent amount of weight.

On Sunday, Abby had lost weight and still wasn’t stooling. She spit up at four feedings in a row. And no one was talking to us about discharge. So Dan and I sat down with a doctor and asked if Abby could just be taken off the fortifier. We did some research on the importance of supplementing calcium and phosphorus for preemies so that their bones mineralize well and we found one hopeful paper that suggesting fortifying is unnecessary. I’ll spare all of the details, but basically this whole topic of fortification is really unsure. Research hasn’t been going on long enough to determine if preemies who don’t receive the fortification may have weak bones as adults. Anyway, there seem to be pros and cons either way. Our doctor agreed to give Abby a trial off of any fortifier to see how she does. They’ll watch her calcium levels and weight gain in the process.

Then Dan and I found out that Abby might have been home by Tuesday as long as she had gained weight. This particular doctor (who is on all week) wasn’t concerned about her spit up or her lack of stools and thought she was ready to go. Dan and I quickly explained that we weren’t set on taking her off the fortifier. We just want our baby home! But the doctor seemed to think it was a good idea to try her off the fortifier and keep her in the hospital in the meantime.

Bummer.

Then we went on to tell us that a recent exam revealed that Abby has a left inguinal hernia. This is very common in men and in preemie boys (about 1/3 of preemie boys have a hernia), however it is less common in preemie girls. Of the 700-800 our NICU sees each year there are usually only one or two. So Abby decided to be one of the two this year. By tomorrow a pediatric surgeon will take a look at Abby and decide if she needs to have surgery quickly (this week) or if it’s less serious and we can wait a couple of weeks.

This weekend, more than ever, I have been tempted to “lose it”. That is why, as I was rocking Lydia Sunday afternoon, I wanted to say “I can’t take it anymore!” But we know that God is taking care of us, and of little Abby.

Hernia surgery, from my best understanding, isn’t too serious. But it is still surgery. We are eager to talk to the pediatric surgeon and find out more about how serious it actually is. Our neonatologist didn’t seem too concerned though.

Today we found out that Abby has been eating about every four hours. In all of her short little life, Abby has never been a very awake baby for feeding times. We always have to wake her up. You may remember our frustrations last week when our nurse wouldn’t give her a bottle because she always “looked sleepy”. We’ve slowly been assuring the nurses that Abby always looks sleepy but she still eats great. That in mind, we thought it might be nice to keep Abby on the three hour schedule. More frequent, smaller feeds might help with the whole spit up issue. And it’s what she’s been doing all along. Once again, our doctor said that sounded fine, so tonight we will switch back to a three-hour schedule and see how Abby does on that.

Between the three hour schedule and the unfortified milk, we are hoping Abby will have less spit up, more stools, and bette weight gain. As long as she is gaining weight, it is still possible she could come home this week. Or, it may take longer for clear results. Or, she may go back on the fortifier and we may have to wait to see how she transitions to that before taking her home.

I’m still trying to gather my edelweis. Right now Lydia is walking around wearing my flip-flops and carrying a reusable grocery bag. She recently walked around the corner and I heard her say, “Dear Jesus, please help Abigail sleeping, grow”. So Lydia is joining you all in your prayers, all of which are edelweis to this Mommy’s heart.

Praise the Lord
We are thanking God for:
-a doctor who will consider our ideas
-no more feeding tube!

Please Pray:
-that Abby will do well off the fortifier and on a three-hour schedule
-that Abby will eat well and gain weight
-that Abby will spit up less and stool more
-that Abby’s hernia won’t be serious, painful, or become incarcerated
-wisdom for all the doctors involved

Abby Update: 44 Days Old

Posted on October 25, 2013 by justeeni

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

Wednesday Night: nursed 14 ml
Thursday Morning: nursed 14, bottled 24
Thursday Night: nursed 16, bottled 25
Friday Morning: nursed 30, bottled 8

Wednesday total: 44%
Thursday total: 42%

The past couple days have been much better for Abby. At 11 AM yesterday (24 hours after they stopped the fortification) she had the first dirty diaper without a suppository in over a week. She had two more Wednesday night! Dan and I returned to the NICU Wednesday evening to find this note from Abby’s morning nurse letting us know the news:

Wednesday night, some of the ladies from our Bible study came to the hospital and each took a turn praying for Abby at her crib side. It is exciting to hear such prayers and then come back Thursday to find out that Abby was having quite the turnaround.

Since stopping the fortification, Abby has also had less residual (leftover milk in her tummy) at each feeding. In the past she has had residuals greater than 10 ml at times, but in the past couple of days she has consistently had 0 to 1 ml. She has also started nursing a little better, although she’s still not up to her numbers from last week. And she’s been taking more and more of her bottles. Last night was the first time she finished a bottle that either Dan or I had fed her. And this morning she was back to her old self, taking in 75% of her feeding while nursing (and 20% more by bottle).

The problem is that Abby didn’t gain any weight. She didn’t lose any, but she didn’t gain any either. The doctor is giving her until Saturday to see if she starts gaining. If not, we have to figure out another way to get her extra calories. Another issue is that Abby needs extra calcium and phosphorus to help her bones grow. If she was still in utero, she would be getting these things from Mommy, but as a preemie, she’s not able to get enough of these just from Mom’s milk. Depending on the weight gain Saturday, she may be started on a different fortifier called and “elemental formula” that would provide what she needs while being easier to digest than regular formula.

Abby also had a follow-up head ultrasound yesterday to make sure there is still no bleeding in her brain. Dan and I happened to be there for the ultrasound, and everything came back normal.

Praise the Lord
We are thanking God for:
-drastically improved digestion off of the fortifier
-better nursing and bottle feeding
-no brain damage from being born early

Please Pray:
-that Abby will have a substantial weight gain (at least 1-2 ounces) tonight
-that Abby will have more energy at meal times
-that Abby would continue to take more and more of her feeds by mouth
-for wisdom for Dan and I and the doctor as we decide how to fortify Abby’s milk

Abby Update: 6 Weeks Old

Posted on October 23, 2013 by justeeni

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

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

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

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

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

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

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

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

Abby Update: 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

MI Taylor Family

We live in Michigan.

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