We're home!

Yup, you read that right...we are home!!! We made it home last night and actually had a great first night.  Everyone seemed to sleep well and have a restful night.  Koal is still such a champ when it comes to eating, and we’ll head to the pediatrician tomorrow for some follow up and a weight check. Please pray that he has gained some weight and that there is no concern about his growth or eating. Please also pray for everyone’s adjustment now that we’re home.  We are SO thrilled to finally be here and now get to transition into life as the Schieber five, but it may take some time to get a routine back and for everyone to get settled in our with our new “life.”  Adry is having a particularly hard time – weepy and clingy – not understanding why we’ve been gone, or what’s going on with this new little baby invading her home! Ha. We know it will just take her a few days to realize we’re home for good and hopefully she’ll feel more comfortable with everything going on. She and Kade both LOVE having Koal around – they want to talk to him and kiss him and show him what they are doing non-stop.  It’s very sweet, and so far God has blessed us abundantly in that regard with their attitudes and sweet affection toward the newest Schieber.  We are SO thankful to have my parents and aunt here staying with us. They have been such a blessing while we were at the hospital, and continue to be now that we’re home. What a relief to have extra hands to play with the kiddos, cook, clean and support in so many ways. We continue to feel God’s amazing blessings through all of this, and we are of course, so thankful for all of your prayers and encouragement as well. Thank you so much…we love you all.

5.21.11

Koal had a great night last night and a wonderful day today as well!  He seems to be getting his nights and days straightened out, as he’s been more awake today and last night was not cranky at all during the night. He had his car seat screen late last night, and did beautifully.  Perhaps we’ll get lucky and have a third kiddo who LOVES to ride in the car!  Koalton continues to nurse well and is off his monitors again today.  The cardiac surgical nurse came and took the little man’s steri-strips off his incision site, and it looks great! Attending doctor seems to think tomorrow or Monday should be our release day, as long as Koal is gaining weight and continues to do well. Please pray that Koal would gain weight and that we would be able to head home soon.  He’s doing so well and making sure he’s eating enough to gain weight is the only thing keeping us here. Please pray for our patience as we wait, and for the little guy’s continued recovery.

Koal’s GREAT Granny and Gramps came to visit today (Adam’s dad’s parents). It was wonderful to see and spend time with them and for them to finally get a chance to hold their great grandson.  It was such a sweet time, and we were thankful to get to spend part of the afternoon with them.

I know I write this nearly every day, but we are SO grateful for each of you and your continued prayers, encouragement and support.  I wish I could respond individually to each and every message, text, call and note we’ve received, because they mean SO much to us, and we are so blessed by each of them, and each of you. Please know that we thank God for you daily, and we are overwhelmed by your continued encouragement and love.  God blesses us beyond belief as we continue through this time…thank you for letting God use you in this way. We love you all so very much.

There's talk...

…about going home! WAHOOOOO! Now, we’re not sure EXACTLY when, and we don’t want to jinx ourselves OR get our hopes up if something were to happen, or if the weekend doctor decides differently, but there IS TALK of getting out of here soon.  As the attending doctor, residents, students, nurses and staff rounded this morning, the doc said he was very sorry he didn’t think we should go home TODAY yet, and I chuckled at him, still thinking we were a week + out, and he said, “probably tomorrow or Sunday, though, if that’s okay.” (Turns out he was NOT kidding…and he thought it was odd that I wasn’t expecting to get out today or tomorrow?!?!?!)  I was and am SHOCKED and thrilled that Koal is doing so well they feel like he’ll be ready in the next few days. 

Feeding has been going very well. Of the past 5 feeds, he’s only needed to have extra supplemented milk through his feeding tube ONCE. SO, today they are taking the tube OUT!  Koal will get to eat on his schedule, as often as he needs and wants to, and as long as it continues to go well, we’re through with the feeding tube!

The cardiac team also shut off his monitors for the day.  We will put them back on tonight, so nurses can monitor one more night, but everyone is so pleased with Koal’s heart rate, blood pressure and respiratory rate, as well as his oxygen saturation levels, they decided there was no need to keep the monitors on.

Koal had a hearing test this morning as well, which he passed with flying colors, and the surgical team came in and said his incision looks great post staple removal as well.  Praise God for a GREAT morning with so much positive news!

In other good news:  Adry seems to be doing fine with her little leg. I received some pictures from Grandma Mari and Grandpa Paul (where they are staying this weekend) and while she’s doesn’t appear to be walking on it yet, she’s grinning and laughing in EVERY picture, so it’s clearly NOT painful. Thanks for your continued prayers for healing for her.  HOPEFULLy it won’t take long before she’s back to her old crazy self (including the running and jumping around like a lunatic that we’re used to!).

Doesn't look like she's in TOO much pain!

Kade is enjoying time with Uncle Justin, too!

We would of course appreciate your continued prayers for the feeding process for Koal, as well as God’s perfect timing in our release from the hospital.  We definitely long to get the little man home and settled, but we know that God has the perfect day and time figured out for leaving here, and we’re thankful that there’s a light at the end of the tunnel.

Thursday Evening Update

Good updates all around for today!  After a difficult time at the Urgent Care clinic (and some bloody-murder screaming x-rays), turns out Adry’s leg is NOT broken. PRAISE GOD! They think she just bruised or twisted it, and it should get better this weekend after some time resting it.  She doesn’t seem to be in pain unless she’s trying to walk on it, so hopefully she’ll be able to crawl or be carried around to play at Grandpa Paul and Grandma Mari’s house this weekend, and by early next week she should be good to go.  Thanks for your continued prayers for her and her healing.

Koal had a much better day after his rough morning.  He got back on schedule to wake up and eat this afternoon, and nursing has been going GREAT! He’s learning very quickly and has had no problem with feeds today.  Please continue to pray for success with feeding, and that Koal will gain strength so he can eat more and have less milk given through his feeding tube each day.

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort

2 Corinthians 1:3

Staples, x-rays and nursing

Good morning!  Wanted to post a quick update now, as we’ve had an exciting and busy morning already. God is SO good! We are so very blessed today (and every day). Koal had a good night in his new room last night.  We are trying to get adjusted to being in the same room with him and learning what the nurses and floor life is like up here.  The little guy ate really well with his bottle last night and this morning, and at the next feeding we get to nurse! Please pray that he has no trouble latching on or feeding that way either. It will take a while for him to catch on to eating more than a few milliliters at each sitting, but nurses assure me that will come with time, as he starts to feel hungry and gain strength to suck and swallow for longer periods of time.  I am SO excited to get to start the breastfeeding process and we’re praying it goes as well as the bottle feedings have. 

Another fun update:  Koal got his staples out this morning!  He was LESS THAN THRILLED about the entire process, but he promptly fell right back to sleep as soon as she was through messing with him and has been sleeping soundly ever since. 

And a NOT so fun update:  Please keep our little Adry in your prayers today.  She fell playing at Grandma’s house last night and hurt her leg.  She wouldn’t walk on it last night or this morning, so Adam is taking her to Urgent Care to see if they think it should be x-rayed and might be broken or if it’s just sprained or bruised.  Poor little thing…Please pray that some Tylenol and a few days of rest will heal it fast (I can’t imagine what caring for a 19 month old in a leg cast AND a newborn in Koal’s condition would be like!).  Pray that she would not be in any pain, and pray for all of mine and Adam’s parents as they take on “injured” Adry!  Pray that her “injury” is minor and quick to heal.

We’ll post again soon with updates on Ad’s little leg, feedings with Koal and anything more we hear from the doctors. God bless you all…and thanks for lifting us up in prayer.

Out of PICU

We’ve moved!  It’s true, around 4:30 this afternoon we got to move to the heart floor and out of the PICU.  We had such wonderful nurses in the PICU, it was a bit sad to say goodbye to many of them, BUT we are sure they will be as good on our new floor as well, and we’re SO happy to be here! Koal had a great day overall – even more than just being able to move out of intensive care.  All of his blood work and levels have been great last night and today, and he’s making progress on his feedings.  He took a little bit of milk from multiple bottles today – each time sucking and swallowing more than the last.  Please pray that Koalton continues to learn to eat well over the next few days, as that is the most difficult task ahead of us before we can head home.  Pray also that Adam and I can continue to get enough rest, as now that we are in a private room, much more of the feeding, changing and “parenting” becomes a part of our routine.  We are SO blessed that we can now hold Koal as often as we like, and guests can come and go more freely.  We praise God that we can have a more normal schedule and more private area to recover in, but we understand there will be both joys and challenges as we learn what life will look like with our little man and his heart issues both here and when we get to take him home. 

Thank you for your continued support, encouragement and prayers.  They mean so much to us. We are blessed beyond belief and we love you all.   

Eventful Day

I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.

Romans 8:18

Our little man had quite an eventful day today. Last night’s nurse said Koal was pretty fussy through the night (again, still hungry, they think), and the morning nurse said he’d been sad for nearly an hour by the time I walked in his room. When the doc came by he was SHOCKED that the night doctor had not let the kiddo eat like he had discussed yesterday, so he got the nurse to thaw some milk so Koalton could try a bottle.  Minutes after the doctor walked out of the room, another nurse came in to check on us and she noticed Koal’s drainage tube from his heart was not working correctly and had actually slipped out at some point overnight and was not fully in place.  This led to quite a frenzy to remove it as quickly as possible and get an x-ray to make sure there was no air around his heart or lungs due to the tube coming out. Praise God the x-ray was clear and there was no sign of pneumothorax or any issues with the heart. The surgical nurse that removed Koals drain tubing so promptly also assured me that it was not a big deal that it came out a day earlier than they were planning – it clotted fine and there was no blood drainage issue at all. Not long after the drainage tube was removed, the nurses also removed Koal’s nasal canula as his addition oxygen flow had been discontinued and he was doing great just breathing room air on his own.  (Yep, that’s TWO sets of tubes GONE within an hour!).  Koal also got a chance to eat today! Unfortunately, he didn’t want much to do with the first attempt; in fact, he had a HUGE poo in his pants and then fell promptly to sleep.  The occupational therapist came by to watch him try to eat during our second try, but he was too tired to wake up to try much more than a few sucks and head back to dream land.  The OT DID say she could clearly tell he was not having difficultly breathing or swallowing, and that his vocal chords and coordination all seem to be in excellent working order, so there should be no problems physically when he DOES decide to eat.  It just may be a short matter of time before he learns to suck, swallow and breathe in the correct way (and stay awake long enough to care!) while eating. SO, the lack of interest in gulping down the bottle earned him a feeding tube in his nose.  The hope is that by feeding him that way, along with continuing to try to get him to take a bottle, he will eventually feel hungry and have more of a desire to eat on his own.

Two tubes out…one tube in…we’re headed in the right direction!  Please pray that the little peanut would catch on to eating from a bottle (and eventually nursing) quickly and easily over the next few days. Pray for Adam and I and the nurses as we patiently try to urge him to take a bottle and learn to breathe, suck and swallow correctly.  Learning to eat is often the most difficult and longest part of the recovery process for a newborn heart baby – especially one that is nearly 2 weeks old and had never eaten.  Pray for God’s grace and peace as we continue on this journey, and for patience and perseverance as we press on through this specific task.

We’ve also been told numerous times today that tomorrow is our transfer day and we will be moved from the PICU to the heart floor.  I’ll believe it when it happens (and God’s timing is perfect – so I’m not getting my hopes up! HA!)…but please pray that it actually DOES happen soon.  We are very ready to be in a private room, where we can actually stay with Koal and not have to wonder if there will be an available Ronald McDonald room for us at night, and where we can hold him, be with him anytime, focus on feeding him privately and getting him in a more consistent eating and sleeping routine.  We will travel home tonight since there is not a room for us (maybe get some clean clothes!), and we are praying that tomorrow Koalton will have his own room on the heart floor.

We can’t thank you enough, again, for all your amazing prayers. We continue to have such peace and comfort about this time, and we feel God’s presence and healing hands all around us.  Your encouragement and support bless us abundantly daily, and we are so thankful for each and every one of you.

Doing well...

Another good day here for out little Koalton man. He had an ultrasound on his leg this morning that showed blood continues to flow all around his clot area well.  The clot is still there, but not worsening, so they will continue to monitor his leg to make sure over time the clot dissolves and blood flow remains consistent. The stopped his blood thinner meds for this afternoon and were able to remove his umbilical IV line. It clotted well and docs said we would be able to feed him tonight as well, however the night doc wants to wait until tomorrow morning (should I have titled this post “New doctors = New plans PART 2?!?!?!?!?!).  UGH…oh well…guess we’re getting used to this game. You should pray for our nurse tonight, however, because Koal was pretty fussy this afternoon and all the nurses and doctors are convinced it’s because he’s hungry…but now that he won’t get to eat anything tonight, it could be a long night for sweet nurse Ashley.  Along with the removal of the IV and discontinuance of some meds, Koal has also been being weaned of oxygen through his nose canula.  He is barely having any pumped through at all as of this evening, and it’s just room air that they’re sending through. Praise God he is tolerating the weaning well and his oxygen saturation levels have been great through the process. Please pray that tomorrow Koal will get to eat and we can begin the process of feeding on a schedule and knowing how to proceed with the feeding regimen.

Thank you for ALL of your continued prayers for us! We feel so supported and encouraged by our friends and families through all of this. We are so blessed by all your kind words and constant prayers. We feel so loved and cared for by those of you that have sent cards or messages, left voicemails or texts, come to see us, taken care of our kiddos, brought us snacks and food at the hospital and in SO many more ways! You are all such a blessing to us and we can’t thank you enough for everything.

5.15.11

We had a WONDERFUL morning at home with Kade and Adry and my (Kerry’s) parents and sister earlier today.  We played and ate and watched some “shows” and had a great time together. It was fun to get to hang out with the kiddos and catch up on some good Kade and Adry cuddle and play time before we headed back to the hospital this afternoon.

Koal is still doing well.  They continue to monitor his blood and gas levels and adjust meds, oxygen and fluids as needed.  Last night they gave him a bath and moved him to a new “big boy” crib and out of the infant warmer. He seems to like his new digs and has been pretty quiet all day.  He was awake for a bit early this morning and then again this afternoon when we got back from being home, so it was fun to see his eyes open and him being so alert.  He’s been bleeding out of his chest drainage tubes a lot over the past two days, though they don’t seem very concerned about it.  They do want to watch it, since he is still on the blood thinners, however.  Please pray that will not cause any problems and that it will stop bleeding soon.

There are a few other specifics that you can be praying for as well:

*Please pray that Koal’s oxygen saturation levels would stabilize in a normal range.  They had been a bit low, so he’s on some extra oxygen, and each time they try to wean him back to room air, his sats go down or his CO2 levels get to high. They know his lungs are still gaining strength after surgery, so pray that he will respond well to his respiratory treatments and be able to take deep breaths and fill his lungs completely on a regular basis, which should help both his CO2 levels and his oxygen sat levels as well.

*Please pray that the little man’s bilirubin levels would come down as well. They are not so high that doctors are concerned, but they are high enough that Koal’s blood heparin levels cannot be tested in the lab correctly, so it’s been difficult to make informed decisions about how to adjust meds as needed.

*Continue to pray also for all of Koal’s doctors and nurses here at CMH. We are so blessed to have such an amazing hospital and staff here in KC to be treated from, and even though the most difficult part of surgery is over for now, Koal still has a lot of recovery to go through, and we pray that the doctors and nurses would be full of God’s wisdom and peace as they make decisions concerning his care. Even when he is doing well, we know there are day to day decisions that have to be made concerning meds, feeding and further treatment, so please keep that in your prayers as well.

The heavens declare the glory of God;
the skies proclaim the work of his hands.

Psalm 19:1

New doctor = New plans

  

We got a new set of doctors for the weekend, so plans have changed.  We’ll stay in the PICU until at least Monday now, and Koal will not be allowed to eat until after he’s moved to a new floor.  After being told by yesterday’s PICU attending doc that we would start feeding him today and most likely move out of ICU as well, we’re a bit frustrated and confused.  Our sweet nurse said “different doctor, different schools of thought, different plans.”  I think Adam and I have just decided that whatever the doctors and nurses SAY is going to happen, is not at all what is ever going to happen. Ha.

SO, we wait…Koal is doing great…he’s been wide awake for the past 3 hours or so, just hanging out looking around, playing with us. It’s so fun to see his eyes open and have him so alert. I did get to hold him for a few minutes again this morning, so that as wonderful as well. Even with the frustration and disappointments, we’ll never take for granted the sweet times of cuddling and hanging out with our wide eyed handsome little man. 

Losing the tubes

And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.

1 Peter 5:10

Slowly but surely we are starting to lose some of the tubes, IVs and other crazy attachments. Just after noon today, Koal was extubated and no longer had a breathing tube or nasal tube in! It was wonderful to see his sweet little face and after taking out his catheter, another IV line and his oxygen saturation level monitors from his head and lower back, I got to hold him for a few minutes this afternoon. It was amazing to have him in my arms and get to kiss his fat little cheeks.

We had a number of visitors this afternoon and evening, and Koal continues to have all his blood, gases and medication levels monitored and adjusted as needed. He’s having respiratory treatments every four hours, and he does now have a nasal cannula for oxygen as needed. Because he is still pretty drowsy, only waking for short periods of time, and because they are keeping such a close eye on his oxygen levels, they have decided to wait until tomorrow to have him try eating anything. The hope is that tomorrow morning he can start to eat and fill his tummy and if all goes well, we will be transferred out of the PICU and on to the “heart” floor for the rest of recovery. Adam and I will stay again at the hospital tonight (praise God for the Ronald McDonald rooms right around the corner from the PICU!), as they like to have the Intensive Care parents close in case anything happens overnight. 

Please pray tonight for continued progress with Koal’s breathing and oxygen saturation levels. Pray that he can be weaned back to room air over then next few hours and have no trouble staying within normal ranges over night.  Pray also that rounds happen a bit earlier tomorrow so that if possible, Koal can have some milk and we can start the process of moving forward to a new floor and the road to recovery that leads HOME. Pray also, that Adam and I, and all of our family, would be patient as we journey through this time, not setting expectations too high, or letting doubt or concerns worry us. We know God’s timing is perfect, and He knows every breath Koal takes before he takes it.  Help us remember that even through set backs and trials, our little man’s life is a miracle already and we are lucky and blessed to have him, no matter what physical state he is currently in.  

Still chillin'

FROM 5.12.11  - (unable to post last night -- SORRY!!)

Not much action today thus far, as they continue to monitor his meds and slowly take his doses down in hopes of Koal waking up gradually over the next 6 to 18 hours.  We are excited to see him slowly come to and finally be able to breathe on his own so they can take him off the ventilator and take some tubes out.  This, however, is a very unhurried process and may not happen until overnight or tomorrow morning.  He did open one eye for a few minutes, and has moved his arms a couple times, but he drifted back to sleep quickly after.  Adam and I will stay in a room here at the hospital again tonight as he continues to wake up and is eventually extubated.

We are continually amazed (though we shouldn’t be, I suppose!) by how God is continually blessing us through YOU – as you pray for us, encourage and support us, visit us and offer help to us in so many ways. We can’t tell you how much it all means to us as we continue through this.

Please continue to pray for Koalton’s recovery.  So far, post-op has been smooth and we pray that things continue to go well as he wakes up and comes off the ventilator. Pray that he transitions to breathing on his own easily and that he is in no pain through this process.  Pray that Adam and I will continue to get a good amount of rest (we REALLY have been! Praise God!) and that physically and emotionally we continue to rely on God for His strength. Continue to keep Kade and Adry in your prayers through this time. They are having SO much fun with Grammy Katie and Grandpa John (and now Aunt Patty has come to town to play!), and we pray that they continue to eat and sleep well and have a wonderful time! We miss them tons, but have loved being able to have dinner and play with them multiple times and see them nearly every day over the past week. What a blessing it is to have grandparents to stay with them and take care of them while we are here!

You are my strength, I sing praise to you; you, God, are my fortress, my God on whom I can rely.

Psalm 59:17

Surgery Day - #2

Just talked to the surgeon and things went well.  We’ve been moved to the PICU waiting room and in a few minutes we’ll get to go back and see Koal.  Thank you for all your prayers.  Praise God for having His sovereign hand on Koal and Dr. O'Brien and the staff! We are so grateful for His grace and mercy on all of us today. We will keep you posted as we continue through the day. 

Surgery Day - #1

The surgical team came and took Koal back around 7:30AM to get him prepped, and the nurse just came to update us. Anesthetic administration went well and he's been asleep peacefully. They are finishing up putting in the lines and IV’s and the surgeon should be getting started shortly.

Thank you so much for your continued prayers. Adam and I both slept amazingly well (prayers answered for sure!), and we got to spend some sweet time with Koal this morning before he headed off to surgery.

We will keep you posted as we hear more.

Surgery details

One more quick note tonight to thank you all SO MUCH for your prayers support and encouragement.  Today has been a whirlwind day of meeting with doctors, nurses and teams of amazing people who will be taking care of Koalton over the next few days and weeks.  We were blessed with some time to hold him today, and will get to again tomorrow morning before his surgery as well.

I’ve had a number of people ask exactly what the surgery entails tomorrows, so I’ll give you a quick run-down.  FIRST, here’s an amazing picture Adam made that shows a normal heart and its function and Koal’s heart and it’s defects.

The procedure they are performing tomorrow is called a Blalock-Taussig shunt. There’s more info here: http://childrensheartinstitute.org/educate/gallery/btshunt.htm

Thank you again for your continued prayers.  We definitely feel them and know that God goes before us through all of this. He is our comfort and strength.

We will keep you posted tomorrow as we know more. God bless you all.

Surgery scheduled!

TOMORROW!!  Koal is scheduled to have his first surgery tomorrow morning, first thing. Adam and I will come to the hospital around 6AM so we can see him briefly before they take him. Surgery will actually start between 7:30 and 8am, and last 3-4 hours, plus recovery time. Dr. O’brien is our surgeon’s name…please pray for him specifically as you’re lifting little Koalton up through this process.

This is such a huge answer to prayer for us, as we get the process started and move toward getting Koal well enough to come home. We met with the surgeon a bit ago and we are so impressed with him, and all the staff we’ve met here at CM thus far, and couldn’t feel more comfortable about the people who have been and will continue to be treating and working with Koal. 

Now the reality of tomorrow’s surgery and all that is to come is really starting to hit us.  It’s overwhelming to think about our tiny boy undergoing such a major procedure and we are preparing ourselves for whatever may happen over the next few days. We have so much peace about all God is doing in our lives and through our little man, and we continually pray for a sense of His presence and comfort through all of this.

We again thank you for, and continue to ask for your prayers as we go into tomorrow and the days to follow.  Please pray for little Koalton…for strength and comfort and for God to have His loving, protecting hands on Him through all of this.  Pray for continued comfort and peace for Adam and I and our families as we journey through this together.  Please also pray for Dr. O’brien and the surgery team that will be working with Koal. And, of course…for the ‘details’ of everything going on.  We have a dear friend who is so wonderful about praying for specific details: from traffic, to Kade and Adry’s day tomorrow, to timing with meals, pumping, seeing Koal before and after…any little thing that might come to your mind or heart, please pray for it…God put it there for a reason. 

He is sooooooo good…all the time.

Let the peace of Christ rule in your hearts…

Colossians 3:15

5.9.11

Just a quick update before I head to bed…

Koal had a really good day today.  When I arrived at the hospital this morning with my parents and kids, he was wide awake with his eyes open looking all around. Adry and Kade had a GREAT time talking to him and holding his hand (Adry tried to poke his eyes out, of course), and it was just a sweet sight to watch them interact and get to know each other. 

Koalton had an untrasound on his leg this morning and the clots remain the same.  They are still there, larger in the vein than artery, but unchanged from yesterday. So, the docs assure us it can take awhile and as long as his pulse is easy to feel and the circulation is good in his leg, they will continue to monitor it and take blood samples to determine how to dose his thinners each day. 

He spent about half his day under the lights again today, but then was able to have them turned off as well.  He seems to like to have his arms swaddled in a blanket, so he slept very soundly most of the afternoon once the nurse returned him to that enjoyable position.

The little man had an x-ray of his chest and abdomen early this afternoon as well – to check his umbilical lines and lungs.  Everything looked great with his lungs, and they adjusted his IV lines slightly and he was good to go!

We continue to wait to hear from the cardiac surgeon about timing for Koal’s first surgery.  We were hoping to hear SOMETHING today, but no date has been set yet.  Please continue to pray that he would be able to have surgery as soon as possible, as he is stable enough and we’re just waiting on timing, rather than any medical issue.  The longer we wait, the longer he just lays in the NICU not being held or fed or recovering so we can bring him home.  It’s frustrating, but we know God’s timing is perfect, and we will wait patiently to hear from the surgical team about when it will happen.

Adam and I had a wonderful time with the little dude before we came home for the evening tonight as well.  After his night nurse checked him out, he was wide awake and in a fun mood.  He just looked all around and followed our voices as we talked to him and held his hand and gave him kisses.  Having him 5 days old and only seeing his eyes open and bright about 3 times total, it’s just amazing to get to have that sweet time with him when he does wake up and stay alert. 

I can’t end without saying thank you again, for all your thoughts and prayers.  Please continue to pray for the timing of Koal’s surgery, as well as his continued improvement with the clots and the jaundice.  Please pray also for my parents as they are taking on Kade and Adry these days. The kids are having a BLAST hanging with Grammy and Grandpa Baldwin, so pray Grammy and G-pa don’t get TOO worn out! We of course pray also that Adam and I would continue to rest well.

Jaundice

Happy Mother’s Day to all you mom’s reading this! :)

Koal had a pretty good night last night.  They are continually checking his leg and clots, as well as his blood levels and adjusting blood thinners as needed. This morning he’s a bit jaundice, so they put him under a light.

We remember that well from when Kade was little! Please pray that the light will work quickly and effectively so that is one less thing to deal with.  Continue to pray, also, for the issues with the clots in his leg to become resolved soon. Other than a pretty spotlight to lay under, he seems to be doing well, and we are praying that today can be a quiet, uneventful day for the little guy.

Adam put together a cute trio of pictures of the kids when they were each only a few days old. They all sure looked a lot alike when they were little!

Thank you all for your continued prayers and kind words of encouragement in person, with comments here, and on FB. We love you all so much and feel so supported by those around us as we continue on this journey.  Both Adam and I are feeling rested today (I keep reminding people when they say we look tired, that I did give birth 4 days ago. Plus, the reality is, I’m quite sure I’m getting MORE sleep now – 7-7 ½ hrs a night - than I would if Koal was at home and I was taking care of a newborn!). We both slept well last night, as did Kade and Adry, and hopefully we can stay “caught up” until surgery time comes. We continue to have so much peace about everything going on…God is taking care of us and blessing us abundantly each day. Thank you all for letting God use you as those blessings.

5.7.11

Koal’s overnight ultrasound showed some improvement, so he was taken off one thinner, but he is still receiving one. It was a long, rough night for our little man, but he was resting well when we got here this morning. (It was a long night for Adam as well, as he come back up in the middle of the night to be here for the testing and ultrasound and slept very little.)  Koal had lab tests this morning that all looked good, and another set this afternoon that showed good levels with the blood thinner, so he will continue on the current regimen and he will be monitored to ensure his leg does well and the clots dissolve completely.

This morning NICU doctors rounded and seemed pleased with how his leg was doing, and our cardiologist stopped as well.  We were feeling a bit discouraged when almost first thing in the morning one of nurses on Koal’s case said she believed surgery would have to be put off another week due to these clots.  But, our cardiologist assured us that this was a small hiccup in the surgery scheme of things, and as long as there are no further issues, he should be good to go for surgery next week.  This is still a HUGE prayer request for us, as we are waiting to see if our surgeon can “fit him in” to his schedule next week.  We know God’s timing is perfect and the little guy will have his shunt put in whenever is right, but we of course would prefer the sooner the better since he is physically ready, and we know the road AFTER the surgery is so long before we can bring him home.

Kade and Adry got to come to hospital and meet their little brother today!  It was super sweet, and so cute to see them look at him and try to hold his hand and touch his toes.  Adry would have preferred to touch all his tubes and monitors and say “beep, beep” while punching buttons, so she didn’t stay long! HA!  :)

We are so grateful for your continued thoughts and prayers.  We are praying that the rest of this weekend would be uneventful as far as things go here.  Rest for both me and Adam AND Koal would be excellent – especially if we are blessed enough to get to have surgery early next week. Kade and Adry are exhausted from the fun at Grandma Melanie and Grandpa Steve’s house as well, so we’re hoping now that they are staying at home (thanks to the help of Grandma and Grandpa Baldwin), they can get some rest and get back into a bit of a routine also.

Come to me, all you who are weary and burdened, and I will give you rest.

Matthew 11:28

Clot

Thank you all for your prayers for the heart catheterization procedure.  It went well and the cardiologist who performed it reviewed everything with us saying they saw exactly what they expected and found no additional problems, so we are good to go with the shunt surgery as planned.  Praise God for great news with that! Unfortunately, Koal developed a blood clot in his leg due to the catheterization late this afternoon, so after an ultrasound of his leg, and then one of his brain (a precautionary measure to ensure there will be no internal bleeding), he was started on two blood thinners and a blood transfusion. His leg is already starting to look better (a good sign that the meds are working), and he will have another ultrasound on his leg around 1:00am to ensure the clot has dissolved.

There are a number of things we’d love for you to specifically pray for:

*Please pray for the blood thinners to work and the clot to dissolve quickly. Pray that the ultrasound will come back clear tonight.

*Pray there would be no complications due to the blood thinners or this entire situation.

*Koalton did have a couple of episodes of apnea today as well, which is common coming off the breathing tube and with his prostaglandin meds. Pray that there would be no more issues with his breathing, so he would not have to be intubated again.

*Pray also that Koal would be able to have his shunt surgery NEXT WEEK! He is ready, and as long as the surgeon can get fit him in his schedule early in the week, we’re all set. Otherwise, we’ll have to wait another 10 days AT LEAST, before the surgery, simply because of scheduling.  This would be very frustrating, and just push back the time in which he could recover and come home. Pray for God’s timing with all of it, and for patience and peace for us as we wait to find out when surgery will be.

Thank you all so much for lifting us up in prayer through this.  We can tell you how blessed with are by your prayers, kind words, encouragement and support.  We are so lucky to have our families all near and supporting us in so many ways.  Kade and Adry have been with Adam’s mom since Koal was born, and while I’m sure they’re having a FABULOUS time, they are going to come home tomorrow and stay at the house with us and my parents for at least a few days, and at least until we know more about the timing for the surgery.  We’re so thankful for fun grandparents to entertain them, and I’m so excited to see them and play as well.  We did find out tonight that Children’s Mercy is now letting siblings visit in the NICU, so they will actually get to meet their new brother one of these days (even if it’s VERY brief – and if you know Kade and Adry, you know it will be!).

“Rejoice in the Lord always. I will say it again: REJOICE…The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of the Lord, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

Philippians 4:4-7

Catheterization

Thank you all for your prayers, over the past 12 hours especially.  We had a restful night at home, getting some much needed sleep, and Koal also had a quiet, stable night.  When we arrived at the hospital this morning, we were able to see our cardiologist and he let us know that the meeting of the entire CM Cardiology team went well this morning and they spent quite a bit of time discussing Koal’s case.  They decided as a team that it would be best to do a heart catheterization procedure on Koal today, so he was just prepped and taken to the cath lab.  Please pray for him as he undergoes anesthesia and the entire procedure. Pray for the doctors performing the catherterization, and for Adam and I and our families as we wait for updates and findings.  We will keep you posted and update soon.

Quite a mouthful

Just like that, day two of Koal’s little life has come and (nearly) gone. Another whirlwind day for me and Adam, as I was able to be discharged from the hospital around 10:45am and we went straight to Children’s Mercy to be with Koal. It was so wonderful to be reunited and even have the chance to hold him briefly for a few minutes this morning.  He looked wonderful, which was such a praise and relief, as the last we had both seen of him yesterday he was still intubated and had a feeding tube in his nose, as well as all of his umbilical IVs and heart and lung monitors. Last night they were able to removed the breathing and feeding tubes, and we were told he had a mostly restful, stable night. We spent the entire afternoon at CM with visits from grandparents, great grandparents, as well as multiple aunts and uncles. We also spent quite a bit of time with multiple members of Koalton’s cardiac team, as well as nurses and hospital coordinators and consultants. It was good for me to be able to talk with our cardiologist, Dr. Shah, who just explained to me again what he had told Adam last night.  No new information, but good to hear it again and process more.  He and Linda, the lead cardiac nurse practitioner on Koal’s team, did present us with a diagnosis of sorts for his heart conditions. They say we’re going to call it:

Dextrocardia with atrioventricular discordance, a VSD (ventricular septal defect), PA (pulmonary atresia), and some additional vessel issues.

Quite a description…and quite a mouthful. It covers most of what was described to us in last nights findings, and while a number of the defects are similar, Koal’s new diagnosis will not actually be Tetralogy of Fallot at all. Linda also hand drew a picture of what they believe Koal’s heart looks like with all of these defects, and hopefully I’ll get that posted in the next few days for anyone who’s interested. Dextrocardia is the condition that describes Koal’s heart being on the right side of his chest and being positioned pointing abnormally.  Atrioventricular discordance is the name for the ventricles (lower chambers) being flipped and found on the incorrect sides of the heart (yes, you read that correctly, the RIGHT ventricle is actually on the LEFT side of Koal’s heart, under the left atrium). A ventricular septal defect is a hole between the two lower chambers of the heart. Pulmonary atresia is the name for the pulmonary artery being closed and therefore unable to pump blood to the lungs. AND, on top of those describable defects, there are additional vessel abnormalities and anatomical variants as well.

Dr. shah confirmed that although these defects are unusual and unique, the first step surgically is what we’ve been planning all along, the shunt to keep blood flowing.  The CM Cardiac team is meeting tomorrow morning to discuss Koalton’s case and begin to sort through what the next steps might be after his initial shunt surgery and recovery.  There are a number of different surgical options, each with advantages and disadvantages and possible future complications. Please pray for this team of surgeons, doctors and nurses who will meet tomorrow morning to evaluate the situation and begin to make decisions on our next steps.  They will also discuss and hopefully schedule a time for Koal’s shunt surgery, and we pray that it could be as soon as possible – maybe even next week sometime. With his size and stability thus far on our side, it is possible he will be able to have surgery sooner than expected and therefore start recovery sooner and COME HOME sooner.  Pray that would be the case and that Koal would continue to remain stable on his current IV treatment so surgery would not have to be put off long.  He will remain nourished and “fed” through his IVs until after surgery as well, so I am currently pumping and freezing milk for later use.  The most difficult part of that, is that because he’s not actually nursing, Adam and I do not get to stay at Children’s Mercy with him, we will just come home each night and return when we can during the day. 

Thank you for your continued prayers for US through all of this as well.  They mean SO much to us and God is answering them. I feel really quite good for just having a baby yesterday, and while we are both very tired, so far physically and emotionally we are doing pretty well.  We continue to feel God’s presence and peace in incredible ways, and we are comforted by His promises and so encouraged by all those praying for us.   Our heavenly Father is SO good…and we are so blessed to be held in His loving arms daily. May God bless all of YOU as well…we are so very thankful for you.