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: 2 Months Old!

Posted on November 11, 2013 by justeeni

Gestation: 37 weeks, 2 days
Weight: 4 pounds, 5 ounces
Feedings: However much she wants by bottle, every three hours

Abby seems to be slowly improving. By Saturday morning, she was pulling new tricks with tons of periodic breathing and some cardiorespiratory events. Periodic breathing is when babies slow their breathing way down for a while then start breathing very quickly to “catch up”, and then they repeat the cycle. Often associated with periodic breathing are respiratory events, which are when the breathing and/or heart rates drop. Abby pleased us early on by having almost no events, but now that she’s losing weight everything else seems to be unraveling as well. So, she’s been having events.

Abby also pulled out her feeding tube again. She had gone three days without stooling and was starting to have residuals again (leftovers in her tummy that hadn’t digested). Our concern was that every time this has happened in the past, the doctors have started subtracting the residual from her next feed. For example, Abby was getting 39 ml feeds; if she had 18 ml residual they would only give her 21 ml at the next feeding time. For a baby who is already losing weight, we didn’t want them subtracting from her feeds! So the doctor decided to leave the feeding tube out and stop checking residuals. So far, Abby’s taken enough milk by mouth to keep the tube out! She has not, however, been nursing well for the past few days.

The doctor was wringing her hands on Saturday because she was at a loss to know how else to help poor Abby. Our sweet nurses have been patiently feeding Abby slowly, burping her often, holding her upright for half an hour after feedings, and often changing out of spit up covered scrubs despite all of their earnest efforts. It’s hard to say what, if anything is helping. Some of you have given suggestions (different medicines, adding oatmeal to the milk) and we’ve been talking over all of these with the doctors. In fact, Abby has become quite a demanding baby as far as doctors and nurses are concerned and it is not uncommon to find a small crowd gathered around her isolette trying to figure out what to do next or asking for updates on how she did at the last feed.

On Sunday, finally, Abby gained some weight! She will continue to be weighed daily (instead of every other) until she is more stable. Last night some tests were taken using urine and blood to rule out the possibility that Abby has some sort of infection contributing to her troubles. (I don’t know the results of those tests yet)

If Abby becomes more stable, the doctors are hoping to have her hernia surgery done this week, as early as possible. The main reason is, it would be a bummer to get her all ready for discharge and then send her in for surgery and get set back a few days. Why not do the surgery while she’s still not ready to go home, so she can recover while she had to be here anyway and get her home a little fast, our doctor suggested. Of course, they won’t do the surgery unless she is stable, has no infections, and will be able to recover without any added risks.

Sundays, as I’ve mentioned before, are always the hardest days. A part of that is that on Sunday we go to church in the morning and miss our morning visit with Abby. We visit in the early afternoon, instead, straight from church, and don’t get home until around 5. Then it’s nap time, dinner time, and back to the hospital. As a result, we often don’t eat any lunch (or not much of one in the car) and our nap time is often cut short. Everything proved to be a little too much for me this week and I came down with a relentless headache during church which lasted all day. Some sweet friends had us over for dinner and I spent that time lying on their couch. Ultimately I threw up, missed my evening visit to the hospital, and rested at home for a few extra hours. Today I’m feeling much better and should be able to get to the hospital for the 2 pm feeding. (We are sure that I’m not sick, the throwing up was due to the headache, and I am safe to visit Abby)

Lydia hasn’t seen Abby all weekend because at the end of last week she had a runny nose. She was all set to go see her today, but woke up with a new runny nose. So it’ll be at least a couple of days more before she’ll be allowed in the NICU.

The Doctor who was at the hospital Saturday is also on next week, Monday through Friday. She is trying hard to get Abby home to us (it is well known that preemies do much better when they get home, and, of course, their family does too!). She said that if Abby doesn’t get sent home this week, she’s going to get her home the next week, which would be in time for Thanksgiving. However, we know that unexpected things can happen and it’s impossible to know that Abby will be ready that soon. We’re hoping so.

Praise the Lord
We are thanking God for:
-that Abby is taking her feeds by mouth again and that the feeding tube is gone
-that Abby gained some weight on Sunday (still 4 lb, 5 oz, but closer to 4 lb, 6 oz now)

Please Pray:
-that Abby will gain weight, spit up less, and keep her temperature up
-that Abby will stop having events
-that Abby doesn’t have an infection
-that Abby will be able to have her surgery this week
-that Abby would start nursing again

Abby Update: 58 Days Old

Posted on November 8, 2013 by justeeni

Gestation: 36 weeks, 6 days
Weight: 4 pounds, 5 ounces
Feedings: 37 milliliters every 3 hours by gravity or bottle

If you’ve been paying close attention to Abby’s weight, you’ll see that she’s lost 7 ounces in the past 7 days. In the past couple of days she’s made more steps backward, which is always hard, but we got some answers too.

On Wednesday, I got a call from the NICU doctor. Now, in the six weeks Lydia was in the NICU and in the 8 weeks we’ve spent there with Abby, we’ve never gotten a call from the doctor before. He was calling to tell us that Abby was being taken to radiology for an upper gastrointestinal test to find out why she was losing so much weight. The test revealed that everything is normal, but the esophageal sphincter (that is, the valve at the top of Abby’s tummy) is wide open. Therefore, anything that goes down into her little tummy can come right back out without much trouble.

There’s not a lot that can be done to help with reflux. Abby has been taking Zantac, but it doesn’t seem to be doing much so they will be upping her dose today to see if it helps. Neonatologists differ about their use of antacids in preemies, but in this specific case, our doctor thought it was worth a try. In addition, Abby is being held upright for half an hour after a feeding. Today they also started to thicken her milk with rice cereal.

As Abby has been spitting up a lot and loosing weight, she has also started to drop her temperature. Yesterday morning we were running late to the hospital so I called our nurse to let her know we were still coming. After I let her know, she informed me (so we wouldn’t be surprised when we got there) that Abby’s temperature had dropped a lot so she was put back in the isolette. During our visit Abby was too exhausted to nurse and she only took 16 ml from a bottle.

Yesterday afternoon we got another call from the NICU (which we’ve learned is never good) informing us that Abby had failed to take in much milk by mouth so often that they had to put her feeding tube back in. Now she’s back to her old feeding routine: she eats as much as she wants by mouth and whatever she doesn’t take is put in through her tube. At our evening visit she nursed about 15 ml and got the rest through her tube.

Abby has been on a new formula for the past couple of days, and in that time she has failed to stool on her own. This is something Dan and I are watching out for, because every time she stops stooling, she stops digesting well, and then she stops eating as much. However, this time the doctor isn’t concerned how long it takes her to go as long as her tummy stays soft. We’ll wait to see if she can handle the fortifier this time.

The pediatric surgeon came by Wednesday afternoon to take a look at Abby’s hernia. He recommended the surgery be done before she comes home. However, he’s a busy surgeon and the surgery couldn’t be scheduled until at least halfway through next week. This is no longer a problem, because Abby is not going to be home that soon.

Finally, the good news is that Abby’s blood count was up to 28.3 this week (from 24.5). Now that it’s increasing, it should continue increasing until it reaches a “normal” level.

Throughout the time we’ve spent in the NICU, I’ve tried to include on our updates how the rest of us are doing. This time, it’s more difficult to put into words. We are so ready to be home with Abby. We’re tired and weary and longing for home and togetherness and to be one whole family. The past eight weeks, however quickly or slowly they may be going by for others, have dragged on and on for us. Unless you’ve spent an extended amount of time in the NICU with your own baby; unless you’ve seen her make so many tiny steps forward from the isolette to the open crib to bottles to being feeding tube free, only to hastily return to the isolette and get her tube back in; unless you’ve heard the doctor predict “home” in two or three weeks, only to hear three weeks later, “she won’t be going home for a while”; unless you’ve watched your tiny little blessing put on weight one ounce at a time, only to see her once chubby cheeks shrink back down, I don’t think you can completely understand what this specific situation feels like. And I’m sure all of the moms who read this can imagine the fears that temp to fill a Mommy’s mind as she watches her little one grow too tired to eat and too weak to keep herself warm.

We’ve had a hard, a very hard week. I’ve recently been dropping Dan off at work and driving home, then driving in to pick him up later. One day I decided to start putting on music, and I found that listening to worshipful songs was helping my attitude. This morning as I drove home an old song came on that resonated with our situation.

I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say “Amen”, and it’s still raining

I remember when
I stumbled in the wind
You heard my cry to you
And you raised me up again
My strength is almost gone
How can I carry on
If I can’t find You

As the thunder rolls
I barely hear Your whisper through the rain
“I’m with you”
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

And I’ll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I’ve cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

Praise the Lord
We are thanking God for:
-an increased blood count
-that we won’t have to come back to the hospital for surgery once Abby comes home

Please Pray:
-that Abby will gain weight, eat more, and keep her temperature up
-that Abby will be able to tolerate this new formula being used for fortifier
-that the attempts to fight Abby’s reflux (Zantac, upright holding, and rice thickener) will be successful
-for Mommy, Daddy, and Lydia, who are heartsick and wanting Abby to thrive and come home

Abby Update: 47 Days Old

Posted on October 28, 2013 by justeeni

Gestation: 35 weeks, 2 days
Weight: 4 pounds, 7 ounces
Feedings: 40 milliliters every 3 hours by gravity or bottle

Total feeds by mouth
Friday: 27%
Saturday: 46%
Sunday: 31%

We were happy to hear that Abby had gained weight by the time she was weighed on Saturday. She has been receiving milk fortified with Nutramigen and, so far, seems to be handling it ok. She is back to spitting up a little and having a little residual, but nothing compared to the issues she was having on the other formula fortifier. Today we had a long chat with the doctor about different ways to fortify and what exactly Abby needs from the fortifier. Primarily Abby needs it for calcium, phosphorus, and the extra calories. We’re waiting to hear if there is any other way to supplement the calcium and phosphorus so that once we transition Abby off of bottles, she can still be getting those to help her bones grow strong. It doesn’t really matter (according to the doctor) if I’m getting a lot of calcium and phosphorus, because term babies don’t need it so it just isn’t in a mom’s milk in the amounts a preemie needs.

We also asked the doctor what all is keeping Abby from coming home. It’s just eating. As soon as she can take all of her milk by mouth, she’s home free (unless there are any unexpected problems). At first, we thought this would be a quick and easy ordeal. However, Abby is slower to pick up on bottle feeding than Lydia was. Day after day we would come home so disappointed that I finally gave up any come-home goals. If she’s home by Christmas, I’ll be happy. If she’s home by Thanksgiving, I’ll be very happy. I’m not allowing myself to think any further than that.

When Dan and I find something funny, ironic, or so overwhelming that we need some comic relief, we talk about our made-up sit com called “Life in the NICU”. Season One revolved around our neighbor Baby and his family on the NICU side. Often, the curtains around our bedsides would be closed, but they don’t block out sound and neighbor Baby’s family was quite comical. As a twist near the end of Season One, we were transferred to Special Care and found ourselves neighbors with the same Baby. He’s been home for a while now, so Season One came to an end.

Well “Life in the NICU” surprised us with a Season Two premiere this weekend! Early episodes revolved around one nurse, in particular, who we’ve had for the past few days. Every time we came in to the hospital, we would ask how her feeds went while we were gone and she would always say the same thing, “She was looking a little sleepy, so I tubed her” (fed her through her feeding tube, that is). Over and over we’d hear the same thing. However, whenever we fed her or a different nurse had her, she would eat well even though she did look sleepy. The latest episode finally ended when Dan about lost it hearing her say “She was looking a little sleepy, so I tubed her”. He explained that she always looks sleepy, but still eats for us (and everyone else who tries to feed her). At the last feed our nurse gave her a bottle, even though she looked sleepy, and Abby didn’t take any of it.

So, last night was when I gave up my goals and surrendered to just living this lifestyle for a while longer. In light of my recent change of mind, I thought I would share a typical Monday schedule for our family:

7ish AM: Rise ‘n Shine
wake up, brush teeth, pump, get breakfast ready

7:45 AM: Breakfast

8:15 AM: Clean Up
put away clean dishes, load dishwasher, take a break to play with Lydia, pack Dan’s lunch

8:45 AM: Bath time for Lydia

9:10 AM: Morning chores
fold and put away laundry, reload washer, get dressed, pump, transfer yesterday’s milk from kitchen freezer to chest freezer, start afternoon blog post

10:30 AM: Get Ready and Go
pack up everything to bring to hospital (pump, purse, diaper bag), get everyone ready (socks, shoes, coats), head out

11:00 AM: Abby’s late morning feeding
get update from nurse, change diaper, take temp, switch pulse ox, do foot exercises, nurse, walk around with Lydia while Dan holds Abby and feeds her a bottle if she’s still awake, pump, say goodbye, head home

1:30 PM: Lunch (Dan goes to work)
eat (leftovers), clean up, update blog

3:30 PM: Afternoon chores
pump, start dinner, get Lydia up from her nap

5:30 PM: Dinner
eat, Bible Time, clean up, pump

6:30 PM: Bedtime routine
get Lydia ready for bed, play and read until 7ish

7:00 PM: Babysitters arrive, head to hospital

8:00 PM: Evening Feeding

10:30 PM: Home from hospital, sleep

Praise the Lord
We are thanking God for:
-weight gain!
-Abby seems to be digesting the Nutramigen well enough

Please Pray:
-that Abby will learn to eat soon
-that Abby will have the energy and motivation to eat at every feeding
-for our patience as we approach our ninth week in the NICU

Abby Update: 44 Days Old

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: 40 Days Old

Posted on October 21, 2013 by justeeni

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

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

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

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

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

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

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

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

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

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

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

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

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

Abby Update: 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: 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: 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: preemie