This Day

We are nearing the end of a really fun staycation, and I’ve been slacking on updating the blog so I could enjoy the time with my family. Monday Dan will start work, we’ll start having a routine again (you all know how happy that makes me 🙂 ) and then I plan to be updating a little more frequently.

But I did want to take time out to mark this monumental moment. Do you remember this day?

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That’s our Abigail at 81 days old when she came home from the hospital. She weighed less than six pounds and we were thrilled to finally bring her home.

Today Paul is 81 days old. He weighs twelve pounds and is just starting to smile. We are also thrilled to have him home, and to have had him home for so long already.

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Now how long do you think it’ll take before Paul is bigger than Abigail? 🙂

My 10 Favorite Things About Being Pregnant

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I realize not everyone gets to experience the miracle of pregnancy. And for those of us that do, it’s far too easy to list all of the hardships that come along with these months of waiting. Since I don’t know how long I’ll get to enjoy having Baby safe inside of me, I wanted to list a few of my favorite things about being pregnant.

1. Baby is safe.

I know bad things can still happen before or after Baby is born, but I am enjoying this time when Baby is where s/he should be. Every morning I wake up and thank God for another day before Baby is born. Every time I have trouble sleeping because Baby is kicking, my joints hurt, or I just can’t catch my breath, I remember how much better this is than watching Baby hooked up to all sorts of tubes and wires in the hospital. Stay in there Baby!

2. Snacks. All the time.

Right now I eat sort of like a cow and no one really gives me a hard time about it. Breakfast, morning snack, lunch, snack before naps, snack after naps, dinner, bedtime snack. And, if I wake up in the middle of the night and can’t sleep, sometimes I get a snack then too.

3. Sleeping through the night.

My kids have a pretty bad track record as far as sleeping through the night. Although, God really answered my desperate prayers when we found out we were pregnant, and Abby was still getting up twice a night. She was weaned and sleeping through the night by the time I hit 17 weeks. Lydia, on the other hand, didn’t sleep through the night until she was almost two, so I am savoring these sleep-filled nights before Baby comes.

4. Quiet.

Our kids aren’t really quiet, but there are certainly moments of quiet throughout the day and during the night. I’m fully aware that our babies usually come with a nice long fussy time in the evenings, something we don’t have to deal with right now. Our girls enjoy eating dinner and playing before bedtime, then go down pretty easy so Dan and I get some time to ourselves. As much as I’m looking forward to having Baby here and even hearing that little cry, I’m enjoying the quiet for now.

5. High hopes.

As long as Baby is in my belly I can imagine anything I want for his/her birth. Maybe I’ll make it to 32…34…36 weeks. Maybe I’ll get to have an all-natural delivery where we don’t have to rush to the hospital in a state of emergency because my water broke at 28 weeks. Maybe we will, but for now I get to hope for the best.

6. Our routine.

We’ve settled into such a lovely routine around here. I look forward to starting each new day, the moments with the girls, moments to myself, everything running more or less like clockwork. I know once baby comes that routine is going to be out the window, NICU or not, and my main focus will be keeping everyone alive and getting enough sleep.

7. Always having something to talk about.

I don’t get out much. Sundays are church and Wednesdays are Hope Group. Since I’m supposed to be “taking it easy” I try to stay off my feet in the minutes or hours following the service/study, and during that time different people usually stop by to chat. Small talk isn’t always easy for me but with Baby on the way I always have plenty to talk about. 🙂

8. Taking it easy.

Lately I’ve been taking a long nap almost every day. In the afternoons I sometimes take a moment to decide what to do next. Then I remind myself that I’m supposed to be “taking it easy” so I’ll curl up and read to the girls or listen to Adventures in Odyssey with them. No guilt. I’m taking care of baby. And I’m fully aware that when Baby comes, especially if s/he comes early, I won’t be nearly as able to take it easy.

9. Time with our girls

When Abby was born, Dan and I were suddenly torn away from Lydia for long periods every day. Even when we were with her we were busy with NICU things, necessary chores, and napping. Mentally we were distracted and stressed and it affected her too. So I am enjoying this season to enjoy my girls, snuggle them, love on them, and give them my time while I have time to spare.

10. The anticipation.

It hit me just the other week that we’re going to have another little person in our family! It may seem strange, but with all the focus on prenatal visits, extra ultrasounds, steroid shots, and preparing for a potential NICU stay, there hasn’t been a lot of time left to think about actually having another baby. So the other day I pulled out the Newborn clothes and separated everything that was gender neutral. Soon we’ll have a little one to snuggle, feed, and play with. Soon the girls will get to enjoy another little baby in the house and Abby will get to be a big sister for the very first time. And soon we’ll have to actually decide on a name! (We’re pretty much down to four names, two girl and two boy.) We’re enjoying these moments of quiet and routine, lying low and hoping for the best, but we’re also excited to meet our new little family member, whenever the time comes for him/her to arrive.

Preparing for a NICU Baby

This Monday I reached 20 weeks in my pregnancy, halfway for most people. However, as we have a history of preemies, Dan and I wanted to be well-prepared for another long NICU stay, if that’s what ends up happening. By the time I reached 20 weeks, I was told I would need to limit my activity a little bit, so those preparations all had to be done by Monday, and I’m happy to say that they were. The last few weeks have been crazy with all the things we’ve been trying to get done, but now I get to rest and I’m sure in a few months, the preparations will pay off.

So what kind of preparations did we do? The first task was to unpack. What a relief it is to finally be unpacked and moved in. The closets may be messy, and I have piles and piles of the girls’ clothing to sort through (someday), but the bulk of the work is done and everything else can wait or be done when we have spare time. I’ll try to post pictures of our unpacked home soon.

The second major task was freezing meals. Life with a NICU baby is very busy, so cooking is always an issue. Sure, you can eat out, but that gets expensive and unhealthy. Since we’re expecting some amount of a NICU stay this time around, I made a meal plan that would last 12 weeks (that’s how long Abby was in the hospital). As things became overwhelming I cut back, cancelled meals, and recalculated. As of today we have three freezers full or half-full of food ready-to-eat when Baby comes. Once I reach 23 weeks, Dan will go on a mega shopping trip to stock up on all sorts of nonperishables to complement our meals along with some more items to freeze. For now we have 34 breakfasts, and 88 lunches/dinners frozen and waiting to be enjoyed.

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The final task was to get our Christmas decorations up. This was so fun. It really didn’t take very long, and the girls stayed up to help with the tree. Then they headed off to bed while we finished with the lights, ornaments, and a few other festive items. I am loving the decorations every night as I curl up by our fire place, work on Christmas presents, and sip some tea.

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As far as the pregnancy goes, things have continued on as expected, for the most part. Last Wednesday I had some concerning contractions, but we’ve sorted out the root of the problem and it’s been smooth sailing ever since. The “big” ultrasound screening is Friday morning and we’ll find out how Baby’s doing as well as how much I will be allowed to continue to do. Any signs that Baby is on the way and I’ll probably be stuck in bed. For now we’re just taking it easy, soaking up this season, and enjoying our cozy Christmas lights.

What to Say to a NICU Parent

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I’ve never been very good at knowing what to say to someone when they’re going through a hard time. After going through some hard times myself, I realize that I have probably very often said the “wrong thing”. Earlier this week I posted a Survival Guide for others who find themselves spending time in the NICU. But the reality is that most of the people reading this never have and never will spend any time in the NICU. However, everyone reading this knows of at least one person who has spent time in the NICU. This post is for all of you. I know my thoughts won’t apply to every NICU parents. So, based on my own experience and conversations with other NICU parent, but these are my best suggestions on what you can say (and do) to help a NICU parent.

As I wrote this, I wondered if I was going too far. Having a baby in the NICU is not the most difficult thing in the world. I know there are plenty who suffer far greater trials. However, I still felt the thoughts may be helpful to some. My husband pointed out that much of this could probably be applied to interactions with anyone who is suffering. If you think all this is a bit overboard, feel free the glean the good and forget the rest. And, keep in mind, not everyone is the same and I can only share from my own experiences and conversations with a few others.

“My heart just broke for you…”

What do you say to someone who just had a baby…months earlier than they were “supposed to”? “Congratulations”? “I’m sorry”? “She’ll be fine”? “She’ll be home before you know it”? Dan and I have found that there is very little you can say and be of any real comfort to a newly arrived NICU parent.

After Abby had spent two and a half months at the hospital, Dan was riding up the elevator one day with a crowd of people. One of the ladies in the elevator was in a wheelchair and it came up in conversation that she had just had a c-section and had been transferred straight to UofM with a baby who was now in the NICU. The others on the elevator started offering their support and encouragement.

“Don’t worry. She’ll be fine.”

“You’ll be home before you know it.”

“This is a great hospital.”

“What did you say?”, I asked Dan.

“Nothing. There’s nothing you can say. It wasn’t the right time.”

However, there was one conversation that stands out in my mind as being especially comforting. Lydia had just been born. I didn’t really want to talk to anyone. As we walked into church the following Sunday, I wanted to stay close to Dan and avoid all conversation. I was tired, sad, emotional, and still trying to grasp what was happening. Afterward, of course, people came up to talk to me. One mother at church approached me with tears in her eyes and said, “When I heard, my heart just broke for you…”. It was the most comforting thing anyone had every said to me.

Now, not everyone has the ability to sympathize in this way. Don’t fake it. If you’re able to honestly share in someone else’s suffering, by all means, offer your consolation. However, in many cases the best you can do is give a well-meaning hug.

Be Careful with Your Encouragement

I recently came across Proverbs 25:20. It says, “Whoever sings songs to a heavy heart is like one who takes off a garment on a cold day, and like vinegar on soda.”

For the most part, I will let that verse speak for itself. Someone who is separated from their tiny newborn baby will often have a “heavy heart”. Happy words may be just what they need to hear, or they may sting like icy wind on bare skin.

Ask Me about My Baby

It may seem like all I talk about is my baby. Maybe you think I get tired of giving everyone the same updates over and over. Maybe you think you should avoid the topic because it’ll make me sad.

But, please, do ask me about my baby. My baby is my life right now. I don’t have time for anything else. When my baby takes a step backwards, doesn’t have a good day, or isn’t making progress, my whole world feels a little cloudier. When my baby makes progress, gains weight, shows improvement, the sun comes out and I want everyone to know.

I know there is a whole world beyond the hospital and the universe doesn’t revolve around me (or my baby), but I don’t get to see that world right now. I will try hard to talk to you about all the other things, but the only thing on my mind lately, is that little one lying in a hospital room.

Please Be Patient

I may not seem myself. You just might see me cry. Or maybe I look weary. It’s a hard circumstance to be in the NICU for so long, so please be patient with me.

Please be patient with me if you are pregnant, especially once you hit nine months. I rejoice with you, but sometimes seeing a very pregnant mommy might make me tear up a little. Some good friends of ours had a baby when Abby was a month old. Their little boy was in church when he was only two days old and I cried every time I saw him.

I felt terrible. I was happy for them. But I could hardly talk to them because I would break down. It wasn’t until after Abby was home that I could cheerfully visit and hear all about their birth story and the early days with their newborn. I don’t know if they noticed or not, but I am grateful that they are sweet and patient people who weren’t offended by my distance during those first weeks of their own baby’s life.

If you are pregnant or have a newborn while a friend is in the NICU, be patient if they seem awkward or distant.

Ten Practical Helps

If you do know someone who has a baby in the NICU, you may be wondering what practical things you can do to help them beyond just words. So here are a few ideas:

1. Pray for them. No matter where you live, how much time or money you have, this is one way you can help

2. Do their laundry. They don’t have time.

3. Clean their bathroom. They don’t have time.

4. Wash their dishes. They don’t have time.

5. Do any other tidying or cleaning…I think you get the point here.

6. Bring them a hot meal, a frozen meal, a gift card, a snack…

7. Offer to buy and deliver their groceries. You don’t have to pay for them yourself, just picking them up and saving them the trip will go a very long way. You can give them a bagful of random groceries, or you can ask for a list. Either way, they will probably appreciate it more than they can express.

8. Watch their kiddos…although it’s likely that many will offer to babysit, so be creative and choose one of the above suggestions that hasn’t already been taken.

9. Ask if there is anything you can do to help or bless them. Everyone has individual needs.

10. Visit their baby or send a card or gift. Hospital visits can get long and lonely, you are probably a welcome visitor.

Well, I hope those thoughts are helpful and not offensive or out-of-hand. Dan and I were very blessed by many who did and said loving and encouraging things for us throughout our NICU stays, and we are immensely grateful. In fact, I feel we could never repay many for their sacrificial kindness. And Abby agrees.

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: 79 Days Old

Gestation: 39 weeks, 6 days
Weight: 5 pounds, 9 ounces
Feedings: Working up to 60 ml of unfortified milk every three hours by bottle

Wednesday afternoon Abby had an upper GI done. There was some disagreement about whether to leave in her post-pyloric feeding tube or if that would mess up the reading, and eventually the neonatologists won against the surgery team and the tube was left in. The test confirmed the suspected diagnosis: pyloric stenosis.

Dan, Lydia and I were about to head out to Bible study when the surgery team came in and told us that the had actually been unclear because the feeding tube had been left in. However, they were able to feel Abby’s pylorus from the outside and confirm that it did seem enlarged and they agreed that she would need surgery. However, only one surgery team works on holidays and, as the next day was Thanksgiving, they said her surgery would take place on Friday (today).

Midway through Bible study Dan got a phone call from the pediatric surgeon. They had gotten Abby in for surgery the next day, despite the holiday. She was scheduled for surgery at 8 AM and would be taken down to anesthesia at 7:30. The surgery team would round at 6 AM to answer any of our questions.

We hurried home early from Bible study and went to sleep. At 3:30 AM we got a call from one of the residents expressing a concern that Abby wasn’t ready for surgery because her blood count was so low. Because they never had us sign any admittance papers when we arrived at the hospital (!) they had never received our permission to do a blood transfusion if it was necessary and so they had to call and get our permission. It was just last week that I spent an entire afternoon trying to convince the doctors that Abby needed to be on iron because she is anemic and they didn’t believe me. Now she was so anemic that they had to give her extra blood just so she could be stable enough for her surgery.

We agreed to the transfusion and headed in for a long day at the hospital. Just before Abby was taken in to the operating room, another baby needed an emergency surgery and we got bumped back a few hours. Finally, at 11:03 AM, Abby was in surgery.

We enjoyed a visit from Dan’s brother and sister-in-law while we waited the two to three hours it would take for Abby’s pylorus and hernia surgeries. After only 1 1/2 hours, the doctor called to say they were finished. He had warned us earlier that if anything went wrong they would quit the surgery early. So I tried not to freak out as we waited for the doctor to come out and talk to us. There was no need to worry though, because the surgery went great. They were able to do the pylorus and hernia laproscopically, which means they only had to make a few tiny incisions instead of one large one across Abby’s whole belly.

After enjoying a turkey dinner donated to the NICU by Zingerman’s, we hurried back to Abby’s room. She was still sleeping and looked like she had just gotten beat up. Her eyes were swollen, she had bandages on her belly and an IV in, and when she finally woke up she moaned like a wounded baby animal.

At 4 PM Abby was awake enough to try to eat. The plan was to gradually increase feeds starting with a small amount of unfortified milk until she could handle 60 ml. Any time Abby finished a feed without spitting up, her amount could be increased for the next feed. If she couldn’t finish or did spit up, we would have to stay at that amount until she could tolerate it. When she reached 60 ml, she would be ready (from a surgery standpoint) to go home. However, because Abby was a preemie, they would probably have to make sure she was gaining weight, introduce a fortifier, slowly wait to see if she could tolerate the fortifier in increasing amounts, and take care of any last “preemie things”.

The fortifier has always been a concern to us. I was concerned that Abby would make it to full feeds and then get stuck not tolerating a fortifier. Who knew how long it could take to figure out what would be best for Abby?

So here are Abby’s numbers. The goal is 60 ml every three hours:

4 PM : 3 ml
7 PM : 15 ml
10 PM : 3 ml
1 AM : 15 ml
4 AM : 25 ml, but she spit up
7 AM : 30 ml
10 AM : 45 ml
1 PM : 49 ml

Around noon the surgery team stopped by to tell me that Abby is doing great. Upon further questioning, our nurse found out that surgery was considering treating Abby like a “term” baby, which means she would not need a fortifier. Instead, she would have regular weight checks to make sure she was gaining weight once home, and add fortifiers only if necessary. Our nurse assured surgery that plan would be “perfect for this family”. So, once Abby pleases the team with her eating,she will be home free…maybe even this weekend!

Lydia, on the other hand, started throwing up last night and is now sick at home with Dan while I stay at the hospital (hence the lack of pictures). We would appreciate prayers that Lydia would recover quickly and that Dan and I would stay healthy.

Praise the Lord
We are thanking God for:
-Abby’s speedy and successful surgeries
-no fortifier!
-that Abby may come home soon

Please Pray:
-that Abby will be able to tolerate 60 ml…and soon!
-that Lydia would recover quickly and the rest of us would stay healthy

Abby Update: 68 Days Old

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Gestation: 38 weeks, 2 days
Weight: 4 pounds, 11 ounces
Feedings: Only an IV (TPN)

It has been a whirlwind weekend. We have gone back and forth with the ups and downs of transferring to Motts, thinking we had a diagnosis, then going back to not knowing what the problem is.

Friday night was Abby’s worst night yet, as far as spit up goes. During the night they decided to give her an IV so she wouldn’t get dehydrated, and it turned out to be a good thing they did.

Saturday morning Abby got an ultrasound while she was eating, which seemed to indicate a diagnosis: pyloric stenosis. The pylorus is the opening between the stomach and the small intestine. The esophageal sphincter is the opening between the esophagus and the stomach. In a properly functioning body the esophageal sphincter opens when food comes down the esophagus and then closes. After an amount of time, the pylorus opens and allows the broken down food to move into the intestines. Pyloric stenosis is a problem where the pylorus is shut and never opens, so no food can make it past the stomach. Symptoms include constipation or infrequent stools and frequent, even projectile, vomiting.

During an “Upper GI series” a while ago, it was observed that Abby’s esophageal sphincter was “wide open” and very floppy, contributing to her severe reflux. During that test, however, the pylorus was spasming open and closed.

Abby’s ultrasound on Saturday morning showed, what looked like, pyloric stenosis. Because of the conflicting results of the previous upper GI and the more recent ultrasound, the doctors decided to wait a day and repeat the test. If two more tests (another GI and another ultrasound) agreed that Abby had pyloric stenosis, surgery would be scheduled immediately to fix the problem. In the meantime, they kept Abby on an IV, then added lipids (fats) and TPN (total parenteral nutrition – a prescription of fluids providing the nutrition Abby needs). Because it can be dangerous for young babies to throw up so often, those with suspected pylorus stenosis aren’t allowed to eat by mouth. However, much to our dismay, TPNs don’t come until 9 PM at Motts and Abby stopped eating at 8 AM. So it was a long stretch for Abby without “food”. Even after she got the TPN, it was given through the IV so Abby still felt hungry.

Sunday we arrived only to find out that the ultrasound showed (again) a spasming pylorus. In true pyloric stenosis the pylorus will never open, therefore Abby doesn’t have it. So Sunday we spent the day with our poor little girl, holding her as much as possible. She still felt hungry so she would often suck on our fingers. She even found her own fingers and, once or twice, we caught her sucking her thumb.

This morning Abby looked swollen to us, probably from retaining fluid from the IV. Her electrolytes were way out of balance from throwing up so much and they still hadn’t stabilized. According to the Motts scales, Abby now weighs 4 pounds and 11 ounces. However, Friday the scales said she weighed 4 pounds, 7 ounces (up two ounces from her pre-ambulance ride weight). So somehow there’s a discrepancy between hospital weights, but no matter, Abby is gaining.

At rounds we heard the game plan (for today). Since Abby’s electrolytes still weren’t corrected, it would be silly to start feeding her by mouth again and have her throw up and mess them up more. In the meantime she will stay on the IV and be fed through a post pyloric feeding tube, that is, a feeding tube fed down through her stomach and the pylorus into the intestines. That way Abby can “eat” milk without the continuous spit up. For now, she is being fed unfortified breast milk to see how she tolerates it. Later, we’ll figure out details with fortification.

When we left the hospital this afternoon our nurse was working to get a feeding tube in. The first attempt coiled up in Abby’s stomach and they placed her on her side for an hour to see if it would work its way down past the pylorus. As soon as the feeding tube is in place, Abby will start receiving a continuous stream of milk into her intestines. (And she won’t feel hungry anymore!)

That’s really all we know for now. There won’t be any more changes until either her electrolytes are corrected or she demonstrates that she can tolerate the milk through the post pyloric feeding tube. The neonatologist was planning to talk with the surgery team about Abby’s pylorus, as he seems to think she’s just going to end up having surgery anyway.

Praise the Lord
We are thanking God for:
-that Abby will get to have milk again soon
-that while we don’t have a diagnosis, we are moving in the right direction

Please Pray:
-that Abby’s electrolytes will be balanced soon
-wisdom for the doctors as we decide what our next steps should be
-for our continuing to adjust to our new hospital

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: 2 Months Old!

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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