Wasted Seasons

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Two and a half years ago, after Lydia was born, we missed the best weeks of summer. They happened while we passed our time in the hospital. After Abby was born I kept hoping she would come home while the weather was still nice. I love fall. And I wanted to really enjoy it with Abby at home.

Instead, the days, then weeks, and even months passed and the season went with them. Occasionally, during a drive to pick up Dan from work, I would notice the brightly colored trees lining the highway. Those were the in-between moments when I was able to enjoy fall…just a little. There was no apple picking, no pumpkins, no walks in the crunchy leaves for us. I kept telling Abby, “You have to come home before it gets cold.” She didn’t.

Somewhere in there I was having a conversation with a friend at church. She had just gone through her own share of troubles that had “interrupted life”. It was after this conversation that I noticed a running theme. A lot of people were going through different difficulties that were interrupting their life. Mold problems in the home, sickness, hospital stays, unemployment…and our lives were all put on hold until the troubles passed.

And I realized that day that I have to stop putting my life on hold, because what I thought were interruptions in life were actually the seasons of life slipping away while I neglected to enjoy them.

So I made a renewed effort to make the most of my season. I tried to enjoy the leaves during our in-between drives. I took Lydia to the hospital garden and watched her balance as she walked along the short stone wall. And I captured a precious moment in the picture above when Lydia marveled in one of the first snows of the year while looking out from Abby’s NICU window.

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I realized that three months in the NICU were not a chunk of my life just wasted. Life is too short for me to decide certain seasons are “interruptions” in the real thing. “That’s life”, as the saying goes, and I have to make the most of it or it will slip away from me unenjoyed.

Now we’re in a new season. It’s a lovely one. Abby is home and Christmas is coming. But, like all seasons, it has it’s own difficulties. For now, though, I’m remembering my lesson. If I was too absorbed in the difficulties, I wouldn’t have time to enjoy this cuteness:

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Abby Update: 72 Days Old

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Gestation: 38 weeks, 6 days
Weight: 4 pounds, 14 ounces
Feedings: Continuous feeds of HMF fortified milk through a post-pyloric feeding tube on a pump running at 15 ml per hour

Dan and I have spent a lot of time over the past couple of days discussing our “theories” with the doctors as to what is causing or contributing to Abby’s issues. I won’t go into all the gruesome details here, but will instead share the decisions that have been made and the upcoming plans.

Last night at 6 PM, Abby started receiving milk that was fortified with HMF to 22 calories per ounce. Over the night and through today she had four small spit ups of the mucus-like liquid from her stomach. Today the doctors decided to increase Abby’s fortification to 24 cal, which will start at 6 PM tonight.

Since Abby still hadn’t had a dirty diaper, today she was given a suppository. Within minutes she had a very full, very stinky diaper.

If Abby “tolerates” the feeds tonight, the next step will be to pull her post-pyloric tube back up into her stomach. The anticipation is that she will start to spit up again and we will repeat the ultrasound to look for pyloric stenosis. However, it’s a little more difficult to schedule ultrasounds on weekends, because less people are working, so it may be Monday before the feeding tube is pulled back into Abby’s tummy. Either way, by the next blog post I should have some sort of results from Abby’s first attempt(s) at getting food directly to her tummy.

Praise the Lord
We are thanking God for:
-that Abby finally had a dirty diaper, even if it was with “help”
-as UofM still does routine “rounds” on weekends (St. Joe’s didn’t always), we’ll be able to stay up-to-date over the next couple of days on Abby’s progress

Please Pray:
-that Abby will continue to tolerate the HMF or that it would be clear if the HMF is causing (or contributing to) any problems
-wisdom and direction for this doctor, the new one who comes on next week, and the residents as they make decisions regarding Abby’s care
-that they will go ahead with Abby’s plan this weekend instead of making us all wait until Monday

Abby Update: 10 Weeks Old

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Gestation: 38 weeks, 4 days
Weight: 4 pounds, 14 ounces
Feedings: Continuous feeds of unfortified milk through a post-pyloric feeding tube on a pump running at 9 ml per hour

Abby didn’t get her post-pyloric feeding tube placed successfully until 6:45 PM on Monday night. Eventually she had to be taken down to fluoroscopy (which is kind of like a real-time x-ray video), where they could actually see to put the tube down past her pylorus. After the tube was placed feedings were started at 5 ml per hour.

Since having the feeding tube placed, Abby has occasionally spit up what looks like (excuse me for being graphic) bloody mucus. The doctor isn’t concerned about this, as it it probably just from all the irritation that occurred by poking that feeding tube down her throat all day.

Tuesday morning Abby’s electrolytes were almost normal, but her potassium was still low (2.9, but they would like it to be 3.5). So it was another day of waiting as her feeds were bumped up to 9 ml per hour.

Tuesday night Abby had an eye exam which came back normal, but the blood vessels in her eyes are still developing. She’ll have a follow-up visit in two weeks.

Today Abby’s potassium was still low, but everything else appears to be ok, so she is off of the IV and only receiving the milk feeds through her tube. She will receive oral potassium supplements and they’ll check her levels on Friday morning. Her feeds will be increased by 1 ml per hour every four hours until she reaches 13 ml per hour sometime tonight, which will be considered “full feeds” for her weight (which is now 4 pounds, 14 ounces, the biggest she’s ever been).

If Abby demonstrates that she can tolerate full feeds well (and hopefully starts stooling!) then tomorrow they will introduce a fortifier to see if she can tolerate the fortifier fed to her intestines. If she tolerates the fortifier, then we will be able to introduce oral feeding again and try to identify where the problem lies. She could still have a surgery on her pylorus, but we’ll just have to wait and see.

We asked the doctor today about Abby’s infrequent stooling and found out that they aren’t concerned at all. If Abby only stools once a week, they’re fine with that. As long as Abby’s stools aren’t dried out or causing any pain and her tummy stays soft, they’ll let her go as long as she needs to without giving a suppository. And Abby’s tummy is nice and soft.

Our big prayer request is that the doctor will decide to give Abby a fortifier other than HMF, the fortifier they like to use for all their babies, and the one that seems to be giving Abby the most problems. Or, if they do start her on HMF, that she’ll be able to tolerate it better when it’s not going into her stomach, but past it.

Dan’s Mom came down today and is, as I type, cleaning our apartment for us. After seeing Abby, she feels a lot better than she did just reading the updates, so I thought I would include her observations for the encouragement of anyone who doesn’t get to see Abby in person. Abby is very healthy. In fact, they have mentioned the possibility of moving her out of the intensive care unit, because her issues are just not intensive care material anymore. Abby’s only problem, that we know of now, is that she can’t keep her food down. She is alert and comfortable (except when they’re poking her for blood work) and looks like a small, but very healthy baby. And, even though we contribute some of this to fluid retention from the IV and not stooling for 6 days, she is up to a whopping 4 pounds, 14 ounces.

Praise the Lord
We are thanking God for:
-that Abby is almost to full feeds of unfortified milk and off the IV
-that Abby’s eye exam was normal
-that Abby is gaining a lot of weight

Please Pray:
-that Abby’s potassium will come up quickly
-that Abby will tolerate her full feeds very well (and stool!)
-that the doctors will decide to put Abby on a “friendlier” fortifier than HMF

Abby Update: 66 Days Old

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Gestation: 38 weeks
Weight: 4 pounds, 5 ounces
Feedings: However much she wants by bottle, every three hours

On Thursday we were disappointed, once again, to hear that Abby had lost 2 grams. Two grams is almost nothing, but it’s not a gain and it really confirmed that Abby was not making progress as we had hoped. After a disappointing day and lots of spit up, I sat and held Abby for a long time that night praying about what to do next.

I got a couple of ideas, some new medicine that could be tried and maybe a different formula, which I talked over with our nurse. On the car ride home I spent more time praying and was very encouraged. I was pondering the “Why?” questions. You know, “Why is this happening to us?”, and “How can this possibly be for good?”. It’s not that I was asking those questions myself, but that I was realizing how it has never been a struggle to be since Abby’s birth. Though all the ups and downs of this season, I haven’t questioned that this is what God ordained and this is for the best.

I went on to reflect that I really have been learning a lot and can see God building my character like the Bible says in Romans 5: “we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.” I thought about the many Christians who have had to learn some of the same lessons that I am, but by losing a child. How grateful I am that God is teaching us these things in a more merciful way, by not actually taking Abigail from us!

The night ended with my having a very clear sense that God is carrying me and the feeling that I need to keep being carried by Him, no matter what comes next.

The next morning I was remembering these lessons as we walked into St. Joe’s, the hospital where Abby was staying. Though we missed rounds, the doctor sought us out to talk and dropped a bombshell (as she put it). Abby had not gained weight again. She had lost 4 grams. Looking back over the past two weeks made it very clear that Abby had ceased making any forward progress and the doctors at St. Joe’s had essentially done all they could for her. There is a gastrointestinal (GI) specialist at the University of Michigan who could help, but we would have to transfer to Mott Children’s Hospital in Ann Arbor to be able to see him.

So, it came about that our departure from St. Joe’s was not the happy one of a discharge, but the disappointing situation of a transport. Dan took Lydia to work so I could stay with Abby all along, and I got to be with her as they loaded her into a transport isolette, wheeled her through the hospital and outside, and loaded her into the ambulance. I got to ride along in the front seat and come with her as she was resettled in her sixth bedspace so far, now at Motts. For the record, Abby enjoyed her first car ride. She slept the entire time, from being in her crib at St. Joe’s until her next feeding time in her crib at UofM. She didn’t open her eyes once during the whole trip, but squinted whenever the sun came in through the window (her first taste of sunlight, crazy to think).

The first hour was very crazy with lots of new faces and lots of chaos as Abby was settled in and I got the grand tour. UofM gives patients all private rooms and nursing moms get three free meal orders a day. There’s a big playroom for healthy kiddos including a complete playground indoors. But even with those perks, it’s been a rough transition.

You might think all NICUs work the same, but they don’t. Of course they are similar, but every NICU is run differently, and (as you might expect from the UofM) Mott’s is much less personal. There are also something like a million (exaggeration) neonatologists instead for the five we had at St. Joe’s. But that doesn’t matter too much because the resident is really the one making calls for Abby these days.

However, we have always said that St. Joe’s is our preferred hospital unless our baby has something weird, in which case UofM would be better. There are more specialists and they have much more experience with the weird cases. And with Abby’s excessive spit up, she qualifies as having something weird.

Abby did ok for the first feeding. Not a lot of spit up. Took the whole bottle. Went right to sleep. At her second feeding she spit up all over Dan. After she was finished and settled in her bed, she spit up again, and again, and again. The nurse came in to change all her clothes which only aggravated the situation and she ended up wrapping her in blankets and putting her back in the isolette (they had moved her to an open crib that morning).

Abby is back on HMF (human milk fortifier), which is the very first fortifier she was on, because the doctors want to get a baseline for what works and doesn’t. We argued a little (we were very tired and worn out and maybe a little too forceful) asking if she could please be put on Nutramigen, because that’s the one that has worked out the best so far. The resident said they would observe her overnight and discuss a change in the morning.

Dan and I understand and appreciate the reasons for Abby’s transfer. We are hoping the GI specialist will be able to get to the bottom of Abby’s issues, and that she’ll be able to come home soon. However, there’s a different attitude in the new hospital, less of a drive to get Abby home, which is hard for us as we thought she would be home two and a half weeks ago. Poor little Abby is showing the signs of her spit up. She is very skinny now and looks almost like she did as a newborn two months ago. (She is bigger, but now just as skinny) Dan says she looks a little better than that, mostly because she opens her eyes now. We are thankful that she is still bright eyes and energetic, but we think it’s likely that we will soon find Abby on an IV unless things turn around quickly.

We trust and we know that God is still carrying us. He is working this all out for good. It was the greatest comfort to me to know that, as we left all of the familiarity of St. Joe’s, the same God went with us to UofM and will take care of us there.

Jesus Christ is the same yesterday and today and forever. Hebrews 13:8

Praise the Lord
We are thanking God for:
-a chance to see a GI specialist
-new hope with doctors more experienced in weirdnesses
-some of the perks of being at Motts

Please Pray:
-that Abby’s new caregivers will get to know her quickly
-that Abby won’t get worse in the meantime
-that we’ll be able to get to the bottom of Abby’s issues
-that Dan and I will be able to adjust to Abby’s new hospital

Abby Update: 9 Weeks Old

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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: 58 Days Old

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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: 8 Weeks Old

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Gestation: 36 weeks, 4 days
Weight: 4 pounds, 10 ounces
Feedings: However much she wants by bottle

Abby is still not gaining weight. However, she is stooling on her own now. Yesterday we were disappointed to hear that she lost another ounce, but the doctor decided to wait another day and weigh her again to see if she started gaining. Today her weight was exactly the same. She didn’t lose. But she didn’t gain either. Dan and I aren’t able to be at the hospital for rounds today so we’ll find out tonight what the doctor decides to do. Abby is still spitting up a lot. If we could get that under control, she would probably start to gain weight again, fortifier or no.

Abby stools when she’s off of the fortifier. But she gets more calories on the fortifier. Maybe they’ll put her back on the fortifier, or maybe they’ll alternate days when she gets fortified milk. We’ll see.

This morning during her daily exam, the doctor told Dan that Abby has a big hernia. That is, the “gap” through which something is protruding (probably her left ovary) is large so it’s easy to see the bulge. It is good to have a big gap because that means there’s less risk of the gap closing and requiring an emergency surgery. The pediatric surgeon has been on vacation and will see Abby today or tomorrow and decide when she should have the surgery.

Today Abby will have some routine blood work done. We’ll get an updated blood count. She’ll also have her biweekly eye exam. These exams will continue until the blood vessels in her eye finish developing.

Things are pretty quiet in the NICU these days. As of last night there were only 11 babies, so they moved all of the babies back over to the NICU side to keep them all together for now. This is Abby’s fifth move of her life. Maybe the next time she moves it’ll be move home! One of Abby’s preemie friends, who we’ve nicknamed “Belleville Baby” might be going home this Sunday after ten weeks in the NICU. We’re happy for them, and hope that Abby will soon follow in Belleville Baby’s footsteps.

Praise the Lord
We are thanking God for:
-that Abby didn’t loose weight last night
-that Abby has a large gap so it is likely she won’t have trouble with the hernia while we are waiting for surgery

Please Pray:
-that Abby gain weight!
-that Abby will spit up less
-wisdom for all involved in making decisions regarding Abby’s fortifier

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