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A Letter from Abby

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Dear Everybody,

I heard my Mommy and Daddy talking about a blog where Mommy writes things about our life and people read them. I had something to say, so I thought that maybe this would be the best way to do it.

My name is Abigail. Since Mommy writes about our family, maybe you’ve heard of me before. I was born a long time ago, but I just got to come home last week. I love being home! Mom and Dad snuggle me almost all the time. Even Lydia holds me. And I love it when they sing to me. I get to lay in my toy jungle, take baths in my whale bathtub from Nana, and I even get to lay on the floor and stare at the lights on the tree that grew in our living room just in time for Christmas. Except for the snuggling, that’s my favorite.

Well, I wanted to write a little bit on here to say thank you to some people. You see, Mommy and Daddy must always be late for things, because they weren’t ready for me when I was born. While I was all snug and warm in my isolette, Mommy and Daddy were running around like crazy trying to do a zillion things. And they told Mommy not to run around like crazy trying to do things because on top of having me she just had surgery too! Well anyway, Grandma and Grandpa and Nana and Papa all came down and helped watch Lydia and take care of Mommy so she wouldn’t cry as much and so she and Daddy could come see me.

Then my family finally got into a routine, but sometimes Lydia wasn’t very good at the hospital. She liked to push buttons and pull out cords and things. I can’t really blame her. Oh, and she was loud too. And me and the other tiny babies don’t like loud noises. So some nice people from church offered to play with Lydia so Mommy and Daddy could come and play with me. I liked that a lot.

I don’t know what stress is yet, but Mommy and Daddy said they had a lot of it. One night Mommy had so much that she didn’t want to go home and clean everything. I guess she makes a lot of messes or something. But later I found out that the nice lady who was watching Lydia sleep had cleaned up all of Mommy’s messes! Mommy was so happy she almost started crying again (which I don’t understand at all). She said there were two nice ladies who would clean up her messes every time they watched Lydia sleep. Cleaning must be really not fun because Mommy sure liked not doing it.

Sometimes I heard Mommy and Daddy say they were really hungry but they didn’t have time to eat. They must love me a lot because I can’t imagine anything more important than eating. Well some other nice people gave Mommy and Daddy food. It was all cooked and everything. And some other people gave them little plastic cards that turned into food when they took them into a special building called a Qdoba. Well I don’t understand all that, but I know how important it is to eat so I sure am glad other people fed my parents so they could come and feed me.

Most of the things I’m thankful for I only heard about, but there’s one thing I did get to see. A few different times people came to see me! They talked about me and sat with me and even prayed for me. I sure liked that a lot. Mommy and Daddy said lots of people were praying for me. I must be pretty special to have so many friends already.

Well, I don’t know how long these letters are supposed to be but there was just one more person I wanted to thank.

You see, Mommy and Daddy sacrificed a whole lot to come see me every day. But even with all their sacrifices, they were still gone a lot. I wasn’t afraid when they left though. Do you know why? They told me that even when they left me I wasn’t going to be alone because someone named Jesus was staying with me all the time. He sent His angels to watch Lydia when Mommy and Daddy couldn’t be with her and He and His angels took care of me too! Sometimes those really smart doctors made mistakes but Jesus would tell Mommy and Daddy what to do so I was never in trouble. Jesus stayed with me every night. He even came with me when I had to have surgery, and he helped those doctors do a really good job.

Now that I’m home, a lot of those really great people I mentioned aren’t around any more. Nobody comes to watch Lydia and no one cleans up Mommy’s messes anymore. But when I came home, Jesus stayed with me even then. I don’t know if anyone else out there has to stay in the hospital all the time, or doesn’t get to eat because they’re so busy, or has any other problems that make life less fun, but I sure hope they know Jesus too. He can take care of you like no one else ever could.

Well, Mommy’s naptime is almost over, so I better go. Thanks for reading my letter. And thanks to all those people who helped Mommy and Daddy take good care of me.

Love,
Abigail Faith

Abby Update: 12 Weeks Old

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Weight: 5 pounds, 11 ounces

Well, as you all know, Abby is now home at last. After so many days in the NICU (82 to be exact) and updates all along the way, it is only proper that I share how the last days in the hospital turned out.

Lydia did turn out to be sick and continued throwing up until Sunday morning. Since she wasn’t allowed to see Abby, Dan stayed home with her and I spent Thursday through Saturday in the NICU. Within 24 hours of surgery, Abby was eating well and keeping everything down. It must have been pretty comical to anyone watching us feed her after so many weeks of constant spit up, because Dan and I continued to “brace ourselves” at each feeding, but now everything stayed in!

Our rough transition to the UofM NICU also changed on Thursday, right around the time we started giving our nurses chocolate. 😛 I got to be with Abby for every single feeding from immediately following surgery up until late Saturday night. Our nurse played advocate for us and talked to the surgery team to find out details about how soon Abby could come home. By Friday afternoon they were all saying it would probably be Saturday morning, and we were thrilled.

On Saturday I waited and waited for the final verdict, but the team didn’t show up. After two nights away from Dan and Lydia, I was more than ready to go home and sleep in my own bed and have Abby right there with us. We were sorely disappointed around noon when the doctors came in and said, “She looks great. We’ll weight her tomorrow and if she gains well she can go home.” I know, it was just one more day, but our hopes were up and we were (like I said) more than ready.

However, the day passed (although slowly) and I went home Saturday night to snuggle Lydia and get a little more sleep. Sleeping with a baby in the NICU means only getting a few hours, but sleeping at home didn’t turn out to be much better because Lydia was sick and kept us up during the night.

Sunday morning finally came and we got the call from the NICU telling us that Abby could come home at last. But Lydia had just thrown up and we couldn’t bring her in. For 11 1/2 weeks I had dreamed about that day when Dan and I would bring Abby home, but it looked like one of us would have to go while the other stayed with Lydia. As it was a Sunday and Lydia was sick, we just didn’t think it would be right to ask someone to watch her.

I was sitting on the couch, trying not to mope, when I started praying. I remember specifically praying, “God, I know this is pretty much impossible, but could You have someone call and ask if they can watch Lydia for us?”. I went on praying for my own attitude and preparing to stay home while Dan went to get Abby. A few minutes later, Dan’s brother Bob called and asked if we would like him and his wife to come over and watch Lydia. It was the only time anyone has ever called offering to come right over and watch Lydia. Out of our entire NICU experience, this was possibly the most obvious direct answer to prayer, from my perspective at least.

Dan and I went and picked up Abby. On our way out we were about to have our nurse take a picture of the three of us when the surgeon who “fixed” Abby’s pylorus and hernia jumped in between us:

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By noon, Abby was home and Lydia hasn’t thrown up since.

We enjoyed an afternoon visiting with Bob and Leslie and began our adjustment to having a “newborn” baby at home. All day Abby refused to be put down. We enjoyed holding her but were a little leery of how the night would go. But, as it turned out, Abby knew when it was time for bed because at night she willingly slept in her bassinet.

The first few days have been a little crazy. Our house was a mess from my weekend away and Dan’s weekend taking care of a sick toddler. We were already sleep-deprived. And we had to figure out our feeding routine with Abby. Monday we were out all day at doctor appointments. But by Tuesday we were starting to settle in and even enjoyed a surprise visit from Dan’s dad.

And so, our second NICU journey has come to an end. No, it did not go by fast. No, it was not “over before we knew it”. But, yes, God carried us through. Yes, Abby did come home safe and healthy. And, yes, it is unspeakably better having a baby at home than in the NICU, even with the night time feedings!

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: 33 Days Old

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Weight: 3 pounds, 10 ounces
Feedings: 33 milliliters fortified to 24 cal every 3 hours given over the course of 30 minutes

I have big news to announce in today’s update: Friday afternoon, after the last update was posted, we returned to the NICU to find out that Abigail had graduated to Special Care! Furthermore, on Saturday morning we walked into the NICU to find Abby out of her isolette and into an open crib! I had been feeling a little down, praying for some sort of obvious movement forward, as we walked back into the hospital on Friday and the Lord graciously heard my prayer and answered.

On Saturday, Abby stopped receiving caffeine in her milk, but she is continuing with her sodium. Her foot also seems to be improving as she is able to move it into a “normal” position when you tickle the outside of her left foot and calf.

The next big hurdle for Abby to overcome is learning how to eat. Right now she gets to try to nurse once a day. Once she is making progress there, eventually the doctor will put in orders to start offering her bottles for her feedings. As eager as I am for that order to be put in, I know it will probably be a while (at least days, probably weeks) before that happens.

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Mini-Munchkin Update: 28 1/2 Months Old

Because I haven’t had a chance to post Lydia’s monthly update, I thought I would post at least a mini report.

Navigating the NICU with a two-year-old is no easy task, but Lydia is a sweet big sister and is handling everything remarkably well. As I’ve noted before, she just loves Abby, and all of the staff in the NICU absolutely love her. Her social skills (which were already great) have been growing as she interacts with new nurses, doctors, and techs every day. There is a “parents pantry” in the NICU with juice and some snacks for parents and siblings of NICU babies. In particular, they have these mini water bottles which are just Lydia’s size. Every day we take one trip to the reception desk and ask to be let into the pantry to get a water bottle for Lydia. Recently she became brave enough to be the one to ask “water bottle?” and even more recently she’s been able to say “pantry?” to the techs who have the access to unlock the door.

Lydia seems to be getting smarter and smarter, and her vocabulary has been growing in leaps and bounds. Her favorite phrase is “I do it!”, which she gets from her Daddy, who often says: “I’ll do it!”. Many days a weeks she spends time with a family from church and when we pick her up she’ll tell us what she did while she was there: “toys!”, or “bunny”, or “treats” (when she fed the cat treats). She has also started praying with our help and sometimes on her own will pray, “Dear Jesus, help…” but then she gets stuck. At the end, if we say “In Jesus’ name”, she’ll finish with the “Ah-men!”. She does tend to get her pronouns mixed up at the moment and often asks us to “read to you?” or “help you?” (instead of “read to me?” or “help me?”). Or, if she wants you do do something that she was doing, she’ll say “me!”(instead of “you!”).

There’s a little wooden chair in the NICU that Lydia loves to sit in. It is painted blue with a big frog on the back. On the front, underneath the seat are some smaller frogs painted in a row. This morning, Lydia surprised us by bending down, pointing to the frogs one at a time, and counting them, “one, two, three, four, five”. We’ve never had a two-year-old before to compare mathematical skills, but Dan and I were impressed. I’ve also been practicing John 3:16 with Lydia for many weeks and she’s starting to memorize parts of it. I have a cute video of her saying it with our help, and one or two videos of Lydia and Abby in the NICU, so hopefully I’ll get those posted to my Facebook page soon.

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(End of mini-Munchkin update)

As for Dan and I, we are learning that this lifestyle is not sustainable. It’s just not possible to do all of the necessary things in a day and still get a decent amount of sleep. On top of that, while we do get in three meals a day, they are often spread out. Many days I leave the hospital torn between my need to eat and sleep. If only I could do both at the same time!

Dan especially has had so much stress. On Saturday it got to be too much and, as he says, his brain exploded. He was bending over and suddenly got dizzy. For the rest of the weekend he would occasionally get dizzy and he had a headache and just felt altogether unwell. He has adopted my coping mechanism of not thinking about anything, and that seemed to help a little over the weekend. Now, however, he’s back to working, and that requires the use of his recently “exploded” brain.

While my brain hasn’t “exploded” just yet, my memory is struggling. If I don’t say what I’m thinking the moment I’m thinking it, I can’t remember what it was. Sometimes I forget my thoughts while I’m saying them and have to stop, think, and be reminded what I had just said before I can figure out what was just happening. In short, we’re tired and ready for Abby to come home! That, and Dan says we need a vacation. We continue to think, “this has got to get easier when Abby comes home”, and I’ll be sure to let everyone know which is easier when we get to that point.

Praise the Lord
We are thanking God for:
-Abby’s recent steps forward: coming off of caffeine, moving to Special Care, and graduating to an open crib
-continued weight gain: slow but steady
-Abby’s alertness, our nurse today said she’s the most alert baby she’s seen

Please Pray:
-for Abby to continue her steady progress and gain more weight
-for Dan to be able to relax and recover in spite of all the stress
-that we won’t completely lose our minds before Abby comes home!

Abby Update: 24 Days Old

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Weight: 3 pounds, 4 ounces
Feedings: 28 milliliters fortified to 24 cal every 3 hours given over the course of 1 1/2 hours

Abby has had two solid weight gains in a row and is now up to the same weight Lydia was when she was born. Maybe she’s getting older and more stable, or maybe it’s all the avocado we’ve been eating around here lately. Most certainly it is an answer to many, many prayers.

The doctor ordered a repeat sodium urine test, but it still came back low (even with sodium supplements) so they believe her kidneys are actually doing a good job. The doctor seemed to be going a little fast during rounds as they discussed her sodium, guess he was afraid we’d hold him to his one month salary bet. 🙂 Abby will stay on sodium supplements and they will continue to check her sodium levels in her blood until things balance out.

Meanwhile, nurses have been commenting that Abby “acts like an older baby”. She can keep her temperature up well and is very alert at feeding times. All of these are very good things. Now that Abby has reached 32 weeks, we have the go-ahead to let her try and nurse, although she probably won’t actually succeed for a while. It’s good practice.

The rest of us are “hanging in there”. We’re tired and we miss Abby. But we are happy to have another week behind us, one less to go. My recovery is going well and today I was even able to watch Lydia (by myself!) for Abby’s hour and a half feeding while Dan held her. Sometimes Lydia will cooperate enough to stay in the NICU for a while when one of us is holding Abby and those times are extra special because we actually get to feel like one whole family.

Praise the Lord
We are thanking God for:
-Abby’s weight gain and her alertness during feeding times
-Another week down and that Abby has reached the 32 week mark
-My healing and ability to do more now so that Dan can hold Abby more often

Please Pray:
-that Abby will continue to gain weight as that may very well be the limiting factor in when she can come home
-that we will have a good opportunity to let Abby try to nurse, when she is very awake, and that she’ll learn quickly
-for continued perseverance