Abby Update: 54 Days Old

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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: 51 Days Old

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

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

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

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

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

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

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

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

Abby Update: 44 Days Old

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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:

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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

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

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

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

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

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

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

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

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

Abby Update: 40 Days Old

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

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

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

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

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

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

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

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

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

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

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

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

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