Health update

On thursday I took Clara for a follow up appointment with the surgeon that did her esophagus repair. He was very pleased with how she's doing. She'll go back to see him again in a month, and then in six months, and then once a year for a few years.

Then on Friday we took her for another esophagram, which showed that she did need her esophagus dilated again so they went ahead and did that on Friday as well. She didn't enjoy it too much in the moment, but she seemed to recover from it more quickly this time than last time. The doctor was hopeful that she might only need to have that done one or two more times. We take her back again in three weeks to possibly do it again.

Tomorrow Clara will be eight weeks old already! She currently weighs about 10 pounds and she has grown 1.5 inches since birth. She now smiles at us a lot and she enjoys our company so much that she doesn't want to sleep during the day as much as she used to. Another of her favorite things is sucking on her fingers. We are enjoying watching her grow and change right before our eyes!

Winter baby

Since today's wind chills were forecasted to be as much as 40 below zero we decided it was time to bring out the snowsuit that Clara's grammie bought for her. It took us a few minutes to figure out how to fit that big bundle into the carseat, but eventually we got it. And it definitely kept her toasty warm! Thanks grammie!

Clara's new bed

This is Clara sleeping in the cradle that her Oompa (grandpa) made for her. Unfortunately she has gotten a bit large for the cradle and we kept finding her with her face pressed up against the sides or her hands sticking between the rails, so last weekend we moved her to her crib.



This is her crib with the most awesome bedding that her auntie Angela made for her. I love it! Since we aren't allowed to paint the walls in our apartment, this bedding brings some much-needed color to the room.

Spa day

Clara desperately needed someone to trim her nails last week so I waited until she was in a good mood and then I took out my nail file.

I quickly learned that you can't file baby nails because they're so thin they just tear, so I switched to a nail clipper after we took these pictures.

Clara must have enjoyed her day at the "spa a la Mommy" because she kept smiling at me while I was working on her nails!

I've been tagged!

So I've been tagged by my friend Ana. I'm supposed to post the sixth picture in the sixth folder on my computer and then tag other friends to do the same. Here goes...

We currently have pictures saved in three places on our computer (this is very disorganized, I know). So here are my three pictures.

Clara snuggling with daddy...


Me 24 weeks pregnant...

Clara's first diaper change at home...

I guess Clara has been the subject of most of our pictures this year! :)

And now I tag my sisters, Angela and Brook.

Clara is learning how to smile!

Here's a few video clips of Clara being Clara for those who aren't able to see her as often as we would like you to be able to, especially my family way back in Wisconsin. We hope you enjoy it!

Clara loves her daddy!

Clara's First Thanksgiving

We went to my sister's house in Albert Lea for Thanksgiving. Clara enjoyed herself, but I think it wore her out because that night she slept for 8 1/2 hours straight!

She met her great-grandma Joyce for the first time...

Four generations together...

And no one could resist snuggling her...

She had a Thanksgiving feast...

And of course the classic Thanksgiving Day nap...

And she got to watch her cousins put on a show...

And then we put her in mommy's old pajamas for the drive home...

It was definitely a great first Thanksgiving!

Dilation #1

Well Clara did in fact need to have her esophagus dilated on Wednesday. First they had her drink some die and then they took x-rays to see if there was a stricture. I was able to watch it on the screen and it was amazing to me that she had been eating at all because that part of her esophagus was extremely narrow.

Before the dilation they gave her some medicine to make her sleepy. Then they strapped her to the table with her arms up by her head, her head strapped between two cushions, and a strap across her chest and one across her legs. I got to watch on the screen again as they put a balloon down her throat and stretched her esophagus. She didn't enjoy it too much, but thankfully she was pretty sleepy so her fussing didn't last long.

The doctor said she may need to have this done several times until her esophagus learns that it needs to stay open. We go back in three weeks for another esophagram to see if she needs to be dilated again. We'll be praying that her esophagus is a quick learner!

So far we haven't noticed much change in Clara's eating habits since the dilation, but the doctor said that might be the case for a day or two since she would probably be a little sore or uncomfortable.

You know you're a mom...

when you make a special trip to the store to buy Pedialyte.

Clara's first week at home has been pretty good. She sleeps well at night (5-6 hours at a time), which Jeremy and I are very thankful for. She's super cute and generally not too fussy. However, we've noticed the past few days that she is eating very slowly. It often takes her up to an hour and a half to finish 3-4 ounces. It's supposed to take her only a half hour. So I called Dr. Acton's (the surgeon) nurse today to talk to her about this. The concern is that the place where they repaired Clara's esophagus could be shrinking a bit and need to be dilated. So tomorrow I will be taking Clara back to the hospital for a test which will show whether they need to dilate the repair site. If they find that dilation is necessary they will go ahead and do that tomorrow while we are there. This would involve sedating her and putting a balloon down into her esophagus to stretch the repair site. It's a pretty minor procedure I guess, but she can't have milk for six hours before the test...thus the Pedialyte. She's allowed to drink that up until two hours before the test. I'll let you know what we find out.

Clara's first bath at home

We gave Clara two baths at the hospital, but tonight was her first bath at home. She handled it pretty well until the end. I guess mommy needs to learn how to give a faster bath.

It must have worn her out because this is what she's doing now..

Clara is home!

A lot has happened since Sunday! We started giving Clara all of her food by bottle and she just took off. She immediately started taking the volume they wanted with every feeding and no longer needed to be supplemented via the tube in her nose. Yesterday morning when the resident came to check on her he said we'd likely be taking her home the same day. By mid-morning there was a steady stream of medical professionals coming into our room to give us final info for taking care of Clara, and at 1:00 yesterday afternoon we loaded her in the car and left the hospital as a family! I thought I'd feel nervous leaving the hospital with her, but it actually just felt really good and right.

At home she did things like...

staying asleep in her car seat when we brought her into the apartment

sleeping on the living room floor

and having her diaper changed.

Clara is doing really well, but we are learning how to deal with some lingering affects of the way her esophagus and trachea formed in the womb - namely reflux and some breathing difficulties. She should outgrow these things by the time she's two years old, but until then mommy needs to learn how to not freak out every time she chokes or gags. Daddy is better at handling this than mommy is.

Clara is starting to wake up from her nap so I expect she'll be screaming for a bottle at any moment. I better get this posted quick. :)

Auntie Angela

Clara's auntie Angela came to visit last night and got to hold her for the first time.  Clara loved snuggling with her auntie!

Clara's Halloween

Before Clara was born we were expecting her to be home with us on Halloween so my mom had bought her a costume to wear. Unfortunately when October 31st came around she wasn't able to wear it because of the chest tube. Last night my mom and sister Angela came up to visit and we decided it was time for Clara's First Halloween!

Feeding update

Yesterday went pretty well with nursing Clara.  Since they decided to clip her frenulum on Friday we've stopped using bottles so that we can focus solely on nursing since that's ultimately how we'd like to feed her.  She was still only taking 20-30 ml per feeding yesterday, but at least she was consistent with that volume each time.

She also seems to have a pretty good grasp of day and night.  The last few nights she has slept very well overnight (so well that she wouldn't wake up to eat).  Last night she slept from 11 PM to 7 AM.  And even then the nurse kind of woke her up at 7:00 so she could eat.  

Today they have her back on cue-based eating so we'll just be nursing whenever she wants to eat.  My prayer is that she remains consistent, and even increases, in the volumes that she is taking today.  And since she can't leave the room we'll pretty much be hanging out here feeding her and taking naps when she sleeps...and of course watching the Packers v. Bears game this afternoon!  Nana washed her Packers blanket so she's ready for the big game.

Daddy quotes

Jeremy and I moved into a room in the west wing of the NICU today.  In the west wing your baby rooms in with you so we are now with Clara 24/7.  

I left Jeremy alone with Clara for the first time this evening while I made a quick trip home to get a few things.  He had to give her a bottle while I was gone and she didn't do so great with it.  She ate about a 1/2 ounce.  When I got back he was discouraged and tired and wanted to take a nap before the next feeding.  I took over on Clara duty while he rested a little, but now she is awake again and fussy so he got up to comfort her.  Just a few minutes ago she quite loudly filled up her diaper.  Shortly after Jeremy said, "I think the thing that's gonna get me through these first few months is how insane her farts are and how much they make me laugh no matter how down I feel."  And it's true...she makes us laugh every time because she's so loud about it.  I wonder if we'll find that embarrassing when we finally leave the hospital and she does it in the middle of church or something.

Pick Me Up Bouquet

Our friends Eric and Apryl sent us these amazing flowers yesterday,
and they filled up our stingy hospital room with a beautiful aroma!
Just another little added encouragment during the long journey! Thanks
so much Cerkases!

And thank you friends and family for all of the meals, laundry washing, gifts, cards and words of encouragement.  The past few weeks have been quite trying at times and your support has been essential to us getting through this time.  We thank God for you!

Thursday updates

I had hoped to post yesterday about all the new developments, but it was such a full day I never got the chance.

The speech pathologist came to see Clara in the morning.  He agreed that the structure of her tongue is hindering her ability to eat, but he was also pretty concerned about her breathing and how that is affecting her eating.  Ever since she was born she has sounded very congested and hoarse.  The doctors and nurses kept telling us that this is normal for babies that have the kind of surgery that she had, but the speech pathologist thought it was excessive for being two weeks out from her surgery.  He noticed that she was having to work pretty hard at breathing and sometimes make the choice between eating and breathing (breathing always wins out of course).  This is probably why she doesn't have the stamina to nurse for more than 10 minutes at a time.  So he said he would talk to the surgeon about doing a chest x-ray and possibly another esophagram to see if she has inflammation in her airway or if her repair site is stricturing.  They did the chest x-ray yesterday morning, but we haven't heard the results yet.

When they came to do rounds on her they said they were going to clip her frenulum.  Finally!  We've been wanting them to do this for the past week and today it's going to happen.  The occupational therapist said it will probably still take Clara some time to learn to breastfeed well though.  Even though they are clipping her frenulum which will allow her more movement of her tongue, she won't know right away what to do with her new found freedom.  But it's definitely a step in the right direction.

We also started bottle feeding yesterday.  We're still nursing a few times a day, but otherwise using a bottle.  It's going okay, but the breathing issue is still there so we have to pace her with the bottle.  If we don't she tends to take too many sucks without a breath and then she spits it all out in order to breath.  And so far she is not consistent in the volumes she is taking from the bottle - anywhere from 20 ml to 50+ ml per feeding.

When the occupational therapist was working with us yesterday on bottle feeding techniques for Clara she estimated that since they are clipping her tongue we will probably be able to take her home by Monday or Tuesday, if not sooner.  We're trying not to get our hopes up, but we're excited about the possibility of this being true.

So yesterday felt like a good day with lots of good developments.  We're praying that things really take off once they clip her tongue and that she'll be leaving the hospital soon.

On a more personal note about Clara, she's definitely a little girl with some attitude.  Every time we have a new nurse working with her they comment on the fact that she really doesn't have an in-between setting.  She's either perfectly content or all fired up about something.  If she decides she's not happy, her wind up period is almost non-existent.  Now this isn't always the case, but usually.  Our girl's got some spunk!

More updates

Here are the updates of what's been happening here lately:

• The occupational therapist assessed Clara's sucking ability yesterday and said she is having a hard time bringing her tongue forward enough and also cupping her tongue enough.  She showed me an exercise to do with Clara before each feeding to help train her tongue and stretch out those muscles.  She also talked about the possibility of starting some bottle feeding in a few days if nursing still isn't progressing.  This would enable us to possibly get Clara home sooner and then we can take her to the pediatrician to get her frenulum clipped.
• The doctor agreed today to let us try Clara on cue-based feeding rather than automatically feeding her every three hours.  For the past few days she's been on the feeding schedule which has meant we've often had to wake her up to eat, which she doesn't like too much and she never eats as well.  Since 1:00 PM today she has been on the cue-based schedule which means we feed her whenever she wakes up and acts hungry.  She seems to be doing a little better this way, although we quickly realized that it's going to be more tiring for Jeremy and I than the scheduled feedings.  As much as it's been frustrating being at the hospital for so long, I think we've gotten a little bit spoiled by having the nurses here to help take care of Clara.  Now we're finding out what it's like to really be full-time parents.  :)
• They also told us today that the surgeon that did Clara's esophagus surgery said earlier this week that he is willing to clip her frenulum if it comes to that.  Even though it's a very minor procedure, it's still a procedure and they would be making an incision on her body which could open her up to infection so that's why they are hesitant to do it yet.
• They are also going to have speech pathology look at her tongue to see what they think.  I'm not sure if that happened today or if they will be coming tomorrow instead.
• The lactation consultant told us today that we could probably move into the west wing whenever we want.  Staying in the west wing means that Clara would room in with us 24/7.  We figured we'd see how today and tonight goes with the cue-based feedings and then tomorrow decide whether we're ready to make the move or not.

When Clara ate at 6 PM today she took 34 ml which is a record!  That's barely more than an ounce, but it's progress.

I'm expecting a phone call any minute to say that Clara wants to eat again, so I'll just wrap this up.  We realize we also haven't posted cute pictures in awhile so we'll see if we can remedy that soon too.  I think she's getting cuter and cuter each day!

Answer to prayer

Yesterday morning Jeremy and I were sitting down to breakfast and feeling discouraged and I prayed that the Lord would send us some encouragement that day.  The attempts at nursing did not go very well.  In fact the afternoon session involved both Clara and me crying.  Because I was about at the end of my rope we decided to go home for the evening.  As we walked up the stairs to our apartment we saw a large box in front of our door.  It turned out that it was full of baby gifts from Jeremy's mom and the ladies in her bible study.  It was the encouragement that I prayed for!  Not that gifts would have been the only thing to lift our spirits, but that was how the Lord chose to answer our prayer this time.  It was so fun to sit down and open all the gifts and imagine sharing them with Clara when she comes home.

After an evening at home, a shower in my own bathroom, yummy dinner provided by my mom, and a box full of presents, I was feeling much more refreshed and okay with pressing on.  We returned to the hospital for Clara's 10pm feeding, which went okay in that she wasn't as hysterical, but she ate next to nothing.  At least this time it didn't involve tears from me.  We'll see what today brings after the meeting with the occupational therapist.

Go Pack Go

Clara did her best to root for the Packers yesterday with her new
fleece blanky from Nana. But unfortunately it wasn't enough to get
them a win against the Vikings. Maybe it'll help next time if she's
awake :)

Feeding update

Jeremy and I have now spent four solid days at the hospital working on nursing Clara and it feels like we've made little progress. To be honest we are both feeling fairly discouraged right now because when we moved into the hospital on Friday we were not expecting to have to stay this long. Most attempts at nursing involve Clara screaming hysterically before, during and/or after nursing. Part of the problem is that there are several factors that could be contributing to her being upset - her tongue tie, reflux (this will probably be an issue for her for at least the next year), possible discomfort remaining from surgery - and it's hard to know which is the problem. Jeremy and I are both finding it difficult to continue working on this when it seems like it is such torture for her.

We came home for a couple hours tonight just to get a break from the hospital, but in a couple hours we need to be back there to nurse again. The lactation consultant talked with us today and confirmed my feelings that we hadn't really made any progress in the past four days. She is going to have the occupational therapist look at Clara tomorrow morning to assess her sucking abilities. And later tomorrow several of the medical professionals are having a big meeting to talk about each baby in the NICU, so maybe some new ideas will come up for how to help Clara. Since they don't seem to want to perform the frenotomy (clip Clara's frenulum) at the hospital, if we don't start making progress soon Jeremy and I are considering bottle feeding just so we can get her home and then find a pediatrician to perform the procedure.

We covet any prayers that you can raise on our behalf as we are feeling weary and just want to bring our baby home. We also need wisdom to know what is best for Clara, and assertiveness to push for what we want even if it's not the hospital's first choice.

Another small hurdle

Well yesterday Jeremy and I moved into the hospital so we can focus on nursing Clara since that's the only thing left to master before we can take her home.  However, we were having some trouble with nursing yesterday so we had the lactation consultant join us and she discovered that Clara is tongue-tied.

Tongue-tie is a condition in which the bottom of the tongue is tethered to the floor of the mouth by a membrane (frenulum) so that the tongue's range of motion is unduly restricted.  This may result in various oral development, feeding, speech, swallowing, and associated problems.

The lactation consultant was telling us that it is somewhat controversial whether this condition should be fixed or left alone so they typically don't do anything about it at the hospital unless the parents really push for it.  After Clara is discharged we can choose to have her pediatrician fix it if we want, which means a very minor procedure where they just clip the frenulum and then she can eat again right away and there is virtually no recovery time needed.

However, in the meantime Clara needs to learn how to eat with this condition so that we can take her home.  Yesterday afternoon's feeding was pretty awful (or at least that's how it seemed to mommy) because Clara was getting very frustrated and was screaming more than she was eating.  After that I wasn't sure how we were ever going to master nursing, but the two feedings overnight were quite a bit better so she might be figuring out how to do it.  

The goal is to get her up to eating 65 ml per feeding and so far she's been eating 10-12 ml per feeding so we've got a way to go.  She also doesn't yet have the energy to nurse for every feeding so she's nursing every other feeding.  Right now it feels like we might be here for several days working on nursing, but maybe she will surprise us and reach those goals sooner.

We would appreciate your prayers...

• for Clara to figure out how to nurse despite her tongue's limitations
• for Jeremy and I to get enough sleep to be able to hold up emotionally
• for Clara to develop more energy so we can get her up to nursing for every feeding

Thank you for all of your support!  We are definitely feeling it as we walk through these first few weeks with Clara.

Interacting is Fun!

We've been able to make some significant bonding progress with Clara the last couple days because she's been more awake and hasn't had so many cables and tubes attached to her! The effects have been numerous, not the least of which have been being able to interact with her more. Check out the clip of us playing together below :)

The Best Day Yet

We just got home from our best visit with Clara yet! We got up there this morning and she woke up as soon as we started talking to her and she was very alert. Since she was so awake the lactation consultant said it would be a good time to try nursing. I tried for the first time last night, but the consultant wasn't there to help us and we didn't really know what we were doing so it didn't go so great. Today was much better. They weighed Clara before and after the feeding and were able to determine that she did in fact eat a small amount.


They also removed the IV that has been giving her food through her belly button so now she is only on breastmilk, but she is still getting a continuous feed of that through a line in her nose. The focus now will be on working up to nursing her for all of her feedings and getting her off the feedings through her nose. Clara will basically determine how quickly this goes based on how she responds to nursing. She's doing a lot of sucking in her sleep, sucking the pacifier, and trying to suck the life out of the mittens that are on her hands, so it seems like she'll pick up on nursing quickly.


After nursing her this morning, Jeremy was able to put clothes on her! This is the first time she's ever worn clothes. She did not enjoy the process of getting dressed, but afterward Jeremy picked her up and had some snuggle time with her, which she loved. She loved it so much, in fact, that she cried every time he tried to put her back in her bed. Eventually though she did decide that she would take a nap.


So it was a very sweet morning with Clara, and I think for the first time we really felt like a mommy and daddy since we were more free to take care of her needs without the assistance of the nurses. It was great!


Here are a few pictures of Clara with daddy...

I also took some video, but Jeremy hasn't taught me yet how to upload that so he'll have to do it later when he has time.

Making Progress

We just got home from visiting Clara at the hospital along with Cristina's parents, Dan and Brenda, and what a great visit it was! She passed the dye test this morning which means that her esophagus doesn't have any leaks, so they were able to take out the chest tube that had been in place to drain the surgery area. She was obviously much happier about this situation because we were able to handle her quite a bit and she didn't fuss or get upset at all. She was alert, making eye contact and looking around most of the time we were there, so that was great because up until now we haven't gotten to see her eyes much.

The next step to being able to bring Clara home and start the next chapter of our family will be her success with nursing. In fact, just as we were getting ready to leave tonight, Clara was looking like she wanted to try eating (sucking on her hand, turning her head). So Cristina gave it a try and it was a good first attempt! The best part was just seeing the two of them interact more and knowing it means that she's closer to coming home. We can't wait!

I also wanted to post the below video from last Friday, the day her breathing tube was removed. It was a big day for Clara and Cristina got to give her some medicine in her newly functional mouth!

More pictures

Here are a couple pictures taken over the weekend. Tomorrow morning they will be doing an esophagram test to determine whether the surgical repair is healed enough to take out the chest tube. Our prayer is that the chest tube will come out tomorrow because it is causing Clara a fair amount of pain. We'll try to update again tomorrow to let you know what happens.

My Best Friend

Cristina's sister, Angela, sent us this sweet e-mail today and we thought you might all get a kick out of it. You can see Hannah in the picture below looking at Clara.

Hannah came down to see what us ladies were doing tonight (had two ladies over for a craft night) and Hannah all of a sudden, out of the blue said to me in a sweet voice, "Clara is my Best Friend!"  It was so sweet and I wish you could have heard her say it.  Just thought that might bring a smile to your faces.    Love, Angela

Friday Update

Sorry we have kept you all waiting two days for an update.  Since coming out of surgery Wednesday afternoon Clara has been doing really well...to God be the glory!  Jeremy and I have spent the last two days either with Clara, or trying to rest and recover from the whirlwind of activity that we had at the beginning of the week.  

Wednesday evening we sat with Clara and it was clear that she was in some pain from the surgery.  She hasn't been able to cry because she has a big breathing tube down her throat, but she can squirm around and grimace in a way that just breaks our hearts.  Yesterday she was much more calm.  She was moving her arms and legs a fair amount, but her face was completely calm so she appeared to be very comfortable.  One of the nurses said she looked like she was relaxing on the beach!

This morning we went up to the hospital right away in the morning so we could be there when the doctors do their rounds to discuss the status of each baby.  The nurse encouraged me to hold her, which I was more than happy to do since the last time I held her was Tuesday night.  She still let us know this morning that she doesn't like the breathing tube in her mouth, but thankfully the doctors plan to remove it today.  They also will continue to wean her off the morphine today and only give it to her as needed.  This is great for obvious reasons, but it will also mean she'll be able to wake up more and interact with us.  And if the surgeon approves, they will start feeding her breastmilk through a feeding tube today.  

Jeremy and I are just continuing to praise God for the wonderful work he has done in Clara in just the first four days of her life.  I was reading Morning and Evening by C.H. Spurgeon yesterday and it was so fitting.  "Hath the Lord been gracious to thee, and inclined his ear to the voice of thy supplication?  Then praise Him as long as thou livest... Deny not a song to Him who hath answered thy prayer and given thee the desire of thy heart."  God has surely been gracious to us.

Here are a few pictures from this morning...

Give Thanks to the Lord for He is Good!

As [Jesus] passed by, he saw a man blind from birth. And his disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" Jesus answered, "It was not that this man sinned, or his parents, but that the works of God might be displayed in him."

-John 9:1-3

The works of God have been displayed indeed! We just received the report from the surgeon that the complete tracheoesophageal disconnect has been repaired and Clara made it through with flying colors! The Lord has done great things indeed and there is much reason for praise! Please take a moment today and rejoice with us, for the Lord is glorified by our praise!

The recovery time depends on each case, but they're expecting to keep Clara in the NICU for about 1.5 weeks. During that time she'll be transitioned from IV to an oral feeding tube for her primary nutrition to test out her esophagus. Near the end of her time Cristina and I will stay with her at the hospital to do the regular new parent things that we missed because of the surgery. 

If you're interested in seeing some more technical information on the procedure, you can visit this website. Clara had Type A shown. Thank you again for your prayers and support, we look forward to keeping you informed on her progress!

Surgery Wednesday Morning

Clara is scheduled for surgery at 9:30 Wednesday morning. They expect it to last 2-3 hours and they are confident that Clara will come through it just fine. About 1 in 5,000 babies is born with this condition so they are familiar enough with it to know exactly what they need to do for her.

Today has been a long day for Jeremy and I so we are trying to get into bed soon, but we will try hard to get some more info on the blog tomorrow while Clara is in surgery. In the meantime, we cannot thank you all enough for your prayers and words of encouragement. The Lord is definitely blessing us through you!

We did get to spend the afternoon with Clara and she's doing really well. I was able to hold her for a couple hours, which was SO wonderful! That's the most time we've been able to spend with her yet.

Here are a few pictures from yesterday...