Wednesday, October 1, 2014

The Rest of the Story....

Here it comes. 

The LONG post to catch you up on the remainder of Myles stay at Children's. 


After Myles was extubated, it felt like all the remaining hurdles were easily accomplished. Just good, steady, daily progress. Some days felt so painfully slow, but we constantly reminded ourselves that coming home with no tubes was the goal.  

NICU day 9, Myles was still getting some breathing assistance, but all the settings on the hi flo nasal canula were all minimal. He was eventually downgraded to a low flow unit. He was also working on upping his feeding volume. We were also surprised to walk into the NICU to find him in a regular 'crib'! 

Day 10  I arrived that morning to find Mr. Myles on absolutely NO breathing assistance. ROOM air!! 1 week after surgery and breathing successfully on his own!  Such a big day for him! 
The next few days following were simply working on weaning him off iv meds, upping feeding volume via a feeding tube in his nose. They hadn't tried oral feeds yet as he needed to get used to breathing on his own. 

Days 11-12, I believe it was on day 11 he was finally able to attempt to feed orally. The nurse gave his first feed via bottle. They wanted to keep close eye on that so he didn't go to fast, or aspirate any. 
He did a great job. Whatever he didn't finish in the volume they wanted him to eat, they would finish via the feeding tube. 

Day 13, Sept. 1. We were FINALLY given the OK from the surgeons to try breastfeeding! Up until this point I had to pump every 2-3 hours around the clock to ensure I had milk for him. I hated pumping when my older 2 were babies, so this truly was a labor of love for Myles. Breast is best, especially for high needs babies. I wanted so much to be able to give him breast milk, and eventually breast feed. CDH babies usually have a harder time with that, if they are even able to get that far. It was a big personal prayer of mine.  
Up until this day he had only been feeding orally for 2 days or so, and had only been given an occasional pacifier when he was fussy and appeared to want to suckle.  
It was such a joyful day to be able to finally try what should be done right after birth. 
Another HUGE answer to prayer. This boy was 'genetically designed to breastfeed', as a lactation consultant put it. He latched on perfectly the first time, and was able to successfully feed for awhile. He timed his breathing and swallowing perfectly.  Now it was merely a matter of gaining the strength and endurance needed to do his full feeds orally. 

Day 15, Sept. 3. BIG DAY!  Myles was finally getting his full volume feeds successfully. He still needed to finish the volume via the NG tube. He was taken off all IV nutrition, and no longer needed any IV's. Since the last health concern left was feeding, they decided to move him from the NICU. 
That afternoon Myles was moved up to the Neonatal Progressive Care Unit (NPCU).  Up there he had his own room rather than just a pod. Also, parents were welcome to stay overnight in the rooms, which would facilitate him perfecting his nursing since I had planned to nurse exclusively when we got home. We were so happy with this big step!! 

Day 16, Myles did his first FULL feed at the breast. A day or so later the surgeons approved that I could start feeding 'ad lib' ( on demand) rather than their strict every 3 hours schedule. He was doing fabulously with his feeds and no longer needing to use the NG tube. 

Day 17, Sept. 5  I was helping a nurse undress Myles for a weight check during a late night check in. 
I grabbed his sleeper in one hand, and unbeknownst to me, his feeding tube was in where I couldn't see it.  When I 'yanked' his sleeper out from underneath him, out came the NG tube all in one motion. I felt so stupid! I know he hadn't been using it for a day or so, and he was fine without it, but feared they would reinsert it anyway since it hadn't been officially cleared to remove it. 
Praise God, they left it out!!  Now he was a 'tube free' baby!! 

Day 18, Saturday Sept. 6   The Drs and Surgeons began talking about discussing discharge possibly that following week, 'Maybe Tuesday' they would say. We didn't tell a soul since we know how quickly things change there! 

Day 19, Sunday Sept 7,   We were given assurance that they were now planning on discharging Myles the next DAY!!  He was doing all feeds perfectly, and gaining weight steadily.  No breathing issues, or alarms on any of his 'leads'.  We were pinching ourselves and beside ourselves with excitement!! 

Day 20!!! Just shy of three weeks old!  Monday Sept. 8. 
DISCHARGED!!!  Such an enormous answer to prayer.  We were told prior to his birth that we should expect a stay of 6 weeks or longer. We began to claim the verse Psalm 81:10. 
" ....I am the Lord your God, ..., Open  your mouth wide, and I will fill it."  We began to pray for a hospital stay of 4 weeks. God answered beyond our expectations!! He cut the doctors estimated stay in HALF! He gets all the Glory for Myles in every way. We are so thankful for how He used the surgeons and doctors and nurses, but we know the Lord enabled our little guy to be a strong fighter. Praise HIM!!! 

It was such a blissful feeling to be all together at home. I thought I would feel nervous without all the monitors for reassurance. That was not the case at all. Just one healthy little boy at home where he should be. 

What a journey.  
What a boy. 
What an AMAZING GOD !! 





Thursday, September 11, 2014

Days 7 and 8...it's not just the little things.

Sometimes it's not about the little things. Sometimes it really is the big things. 
Think about it. 
 We simply take for granted the miracle of the breath of life in a newborn. They just simply do it. 
Or how about the gift of touch. To be able to hold your child. To be able to rock them to sleep, or sing them a lullaby? 
The journey we have been through has made this so clear to us. 
Sure, the little thigs in life make it extra sweet. But big it weren't for those BIG things, we never could enjoy the little. 
When you have to watch your 8 day old infant struggle to relearn how to breathe on his own, it is a quick realization how much we take for granted the birth process. The 'simple task' of that first breath and every one that follows...what a gift from God! 
Let me back up a bit here to apologize in the huge lacking of updates on the blog. 
A major event on day 7 really shifted our priorities, and blogging suddenly took a back seat. 
Myles was still intubated to give his lungs a bit more rest on day 7.  We had an awesome nurse that day that just couldn't believe we hadn't been able to hold our baby boy up to that point yet. When they placed Myles in my arms the day he was born, it was for a few mere seconds before they wisked him away to the nicu.  On his 1week birthday, we got to hold him for the very first time. Pure bliss is the only way to explain it. That gift of touch, it's not a little thing. It's huge!! 

Leading up to this day they had also slowly began removing all the tubes had in from surgery. His stomach drainage tube was removed day 5, his chest tube was removed day 6, also a neck iv line was removed. With all those gone, he was much more comfortable. 
Day 5 the surgeons had also ordered to begin Myles on feeds with all the breast milk I had been pumping up to that point. 
They started with an oral feeding tube, since he still had his breathing tube at that point.  
Day 8: we knew they planned on trying to extubate him again that day. We were very nervous about it since the last try had poor results. 
When we arrived that morning, we were pleasantly surprised to find him already extubated, and breathing quite successfully with a little help from a hi-Flo nasal cannula. A big step forward!! 
He was still a bit puffy here from surgery fluids. He had iv lines in both hands, as they had taken the central line out of his umbilical. 
He was fighting as The Lord enabled him too, and we just can't help but Praise God every time we look back at all that happened. 
 His hand was on Myles every step of the way. 

Monday, August 25, 2014

NICU Day 6

What a whirl wind and 'roller coaster' the past few days have been!
Let me back up to Saturday, Day 4.
Myles was doing SO well post surgery that the Doctors and surgeons felt they should try to extubate him from being on the ventilator. They did so before we left for the night. We could tell he was struggling a bit to learn how to take good breaths, but they didn't seem overly concerned as we left for the night to spend time with Maelyn and Levi.  After I had put our kids to bed I called the NICU nurse to check in on Myles.
They had JUST had a bit of trouble with him breathing, and felt he was working too hard. They had to re insert his breathing tube. This was very hard news to take, especially being so far away from our baby.

The next day, Sunday, Day 5, I went alone to be with Myles while Matt went with the kids to church and our church picnic later. When I arrived Myles was resting very comfortably, and basically just recooperated and rested all day. He was able to be weaned from all but one pain med left from surgery. He was still visibly puffy in the face from all the fluids he was given during surgery. There was talk of trying to extubate again on Monday since he was rebounding so nicely.

This morning was Day 6.
We called before making the drive in ( Children's Hospital of Wisconsin is about a 40 min drive for us).
His nurse told us he had a restful night and was very stable.
When we arrived we received the news that his temperature had taken a very small rise, but just out of the range they are comfortable with. This meant they were worried about possible infections from sites from surgery. At this point he still had 2 chest tubes in. They worried about infection to those sites, as well as to his lungs. They did some blood work, and the preliminary results showed no infection. His breathing continued to be good, however.  As the day went on, his temp stayed below that marker of concern where it had been. They were able to take out one of his chest tubes, which made us very happy to see him more comfortable. During the day it was also decided to hold off on removing that breathing tube today as he clearly was showing us that he just needed a bit more time to re cooperate from surgery.
Right before we left to come home for the night, he had about an hour of wake time. He hadn't been this awake since before surgery, so this was a big treat to us as well.
The day started a bit discouraging, but we thank God for the heartfelt prayers of so many saints. We know God is at work because of many of you! Thank you so much.
Please pray for Myles as tomorrow they attempt to extubate once again.  We are naturally pretty nervous because of the results he had last attempt.  We just want the best for our little guy! We know with God, all things are possible!!
                                                           ( Myles, 6 days old)
Thank you for your love and prayers!
             ~ Missy

Friday, August 22, 2014

And He's Off...

Last night was a little more emotional than we expected. God is good, He gives peace. That pushed bedtime back and when the alarm went off it was time to get right to it again. Grandma came over to see Maelyn and Levi off for a day with friends. Praise the Lord traffic was good on the way down to Children's and I didn't get pulled over. I wasn't driving fast but I am amazed at the things you concern yourself with in a situation like this. Myles had another great night last night and rested well for surgery today. It becomes much more real when they unplug everything and start to roll him out of his pod. When they head down one hall to the operating room and the nurse takes you to the waiting room it hits you like a wave.
The only way I can think to explain it is how Peter must have felt as he walked on the water to Jesus. I'm sure he felt the wind and waves all around him. I could imagine the feeling of the spray hitting his face, soaking his beard. I'm sure he felt the surreal feeling too that he was doing something that was beyond himself. I'm sure the waves were hitting his legs and crashing onto his back. I can imagine that as he stared into the eyes of the one who called him onto the water that the crashing wave felt like a gentle breeze amid the peace found in the eyes of his friend and Savior.
We aren't ignorant of the severity of what Myles is going through but as we keep our focus on Christ he gives us great peace. Are we scared? Yes, but we know that God has a plan. Not only a plan for us but for our entire family. We are praising him in the midst of the waves of this storm for the great things He is doing and will do. We just want to continually thank you for your prayers and ask that God keep being praised and glorified through this.
"The LORD shall fight for you, and ye shall hold your  peace" Exodus 14:14
" O God the Lord, the strength of my salvation, Thou hast covered my head in the day of battle." Psalm 140:7
-Matt

Thursday, August 21, 2014

NICU Day 2

So if you are looking for excitement....today's post is not necessarily the one for you. Myles did a lot of sleeping which makes this an exciting day for us. He needs as much rests as he can get before his surgery tomorrow and has gotten a lot of it. The only excitement for him today was that they weighed him (he lost a few ounces but most babies do that).  Another area of excitement, probably only for his parents and nurses, is that he has been having plenty of dirty diapers. This is great because with some CDH babies the way their organs are pushed around there are problems with digestion and so forth. We even got to change one of his dirty diapers before we left and he "christened" us. Don't laugh, you try changing a diaper of an infant with wires and hoses all over and not cause him any more stress (that's our excuse anyway).

Maelyn and Levi are doing as well away from us as Myles is doing with us. That is a huge burden that has been carried mostly by their Grandma Gordon so far. We got to have family night with them tonight since Missy has been discharged from the hospital and we live too close to stay in the Ronald McDonald house. Living too close has turned out to be a good thing (at least for today). We got home in time to eat dinner with them and take them to the ice cream shop for some Superman ice cream and just hug them and kiss them a lot. We missed reading to them before bed and singing and praying with them just before they fall asleep. They are just as much of a blessing to us as Myles and they are doing fantastic while Myles needs us.

There are so many things that we took for granted with our other two children that with Myles we can only give God the glory for. We praise Him continually throughout this journey and ask you to as well. I do continue to ask you to pray for Myles, especially tomorrow, but also please be purposeful to praise our great God and Savior who continues to bless us. We also cannot thank you enough for your prayers. We know that It is because of your prayers that Myles is doing so well and it is very humbling and moving to know how many people are praying on behalf of Myles and our family. Thank you so much on behalf of our family. To God be the praise and glory (Eph. 1:12).

Wednesday, August 20, 2014

Happy Birthday Myles

After a very short morning with Maelyn and Levi it was off to grandmas so we could be to Children's by 9:00. After they started the Pitocin around 10:00 the waiting began. After hours of inducing and labor Myles was born at exactly 7:00 pm on August 19th. There is so much to praise God for, a labor that was not longer than the other two. We were able to hear him give a little cry before they put in the breathing tube. Then he stabilized very quickly and his oxygen level was 99% right from the start (before he even left for the NICU). Over the night they were able to lower the amount of oxygen he needed to assist his breathing. They were able to get his level to what they call "room air" which is 21% oxygen, the same as the air we breathe. We know that we are in a great hospital with an amazing staff but we praise the Lord for His goodness, that He hears our prayers, and that in His grace He has answered our prayers.
~ Missy

NICU Day 1

Where to start?

Myles is doing so well! We slept so good. We were able to have a good nights sleep and some breakfast. We headed down to the NICU and found Myles doing as well this morning as last night. His breathing tube is still only giving him "room air" and is even getting the hiccups still. They ran a list of tests overnight, blood tests, x-rays, EKG, and many more and they all came back with very positive results.
The team of surgeons came to check on Myles last night but we missed them in the morning and found out after lunch that his surgery would be at 8:00 am on Friday and that they were quite optimistic that they could use a less invasive type of surgery to move his organs where they need to be and fix the hole in his diaphragm.
Another blessing was the fact that they not only allow us to touch Myles they encourage it. Our NICU nurse even waited a few extra minutes to do a few things for Myles so we could finish dinner and make it down to help her. We are so thankful to be able to feel him and touch him. He even likes to hold our fingers and it seems to help him stay calm.
The other good new was that his lungs needed suctioning. You may be thinking what I was...how is that good news? Well, his body is telling us that it does not want the tube in anymore, he wants to breath on his own. It's his body's way of trying to get rid of the tube (along with him trying to grab at it to the point they needed to put socks on his hands). After they suction his lungs he relaxes and falls back asleep.
The Lord continues to bless us more than we deserve (Psalm 81:10)

Saturday, August 16, 2014

In The Day Of Battle

            Myles... early on, shortly after we found out he was a boy, we were compelled by the Lord to choose the name Myles. We desired a strong name (and a name we just liked). Myles is a variant of Miles which was thought to mean "gracious" for the Germans and meaning "soldier" at the earliest in Latin. We choose names based on not only meaning but preference. When we chose Levi it was because in Matthew 9:9 the disciple is referred to as Matthew where as in Mark 2:14 and Luke 5:27 he is referred to as Levi. Our Levi is a Matthew Jr. without being called Matthew. As far as Myles goes we had no idea why we would name him Myles but as it turns out his name will come in handy. Myles is in for quite a battle early on in his life. If you keep up with all that has been put on here you are quite aware of that.
            Also, in Gods providence, we have been studying the "mighty men' in our teen guys class on Wednesday nights this summer. I have not been teaching but have been intrigued by David and his mighty men and have done some reading on them. They are some of the most fascinating characters in Scripture, Ishbaal  the leader of them and having killed 800 in a single battle. Eleazar who stood against the Philistines when no one else would and even ran away from the fight. Shammah who stood his ground against a garrison of soldiers. I'm not sure what number to put on a garrison because it refers to a camp or a fort, so probably no small number. Then there is the one who isn't quite good enough to be one of the "three" but stood out ahead of the rest to be named David's personal body guard, Benaiah. I've loved reading and studying these stories the last several weeks. There is one thing that stuck out to me that has become a prayer of mine for Myles as I'm sure it was for David on behalf of his soldiers. It is Psalm 140:7 "Thou hast covered my head in the day of battle." Here David is praising Yahweh for answering his prayer for protection in the day of battle. I believe that on a regular basis David prayed not only for Yahweh's covering on his behalf but on behalf of his mighty men. David asks for a covering, in other words, for Yahweh's protection. The other word that is used when this Hebrew word comes up in translation is found in Psalm 5:11 "...because thou defendest them...", God is our defender. What a comfort to know that when tough times come we have a covering available from He who is our defender.
            David also prayed to be covered, or equipped. When we call out to Him to cover us in the day of battle it is like the day the football player goes into the equipment room and is equipped for that battle. God gives us what we need to succeed regardless the circumstances. When David prayed for Yahweh's covering his head was protected from deadly blows. When David prays about "the day of battle" he is not necessarily speaking of a large military campaign but any time the armor that the Lord gave him was needed, no matter the size. It did not matter if David was facing a lion or a bear, a man or a giant or even an entire army.

            David prayed for and received God's covering in his day of battle and I am praying for a covering for Myles during his battle. Please pray for Myles, he has a giant he still needs to face. Right now he is like David at the stream, waiting for the coming battle. Pray that the Lord would cover him in his day of battle.

Matt

Tuesday, August 12, 2014

It's Baby Month!

38 Week Check up~

Yesterday I had yet another weekly Biophysical Profile done to check up on our little guy. 
He passed once again with flying colors. The doctor has no concerns at this point! Myles is continuing to do his practice breathing, and moving around in there like crazy!  
My fluid level is still high. No wonder I'm so big, and uncomfortable. 
We also found that Myles has moved again. Rather than being head down, he is transverse, or, laying crosswise in my belly. 
So, all things considered, he is doing well. The end of the pregnancy is very much in sight. 
We are praying fervently that Myles will go head down, and stay put so that a csection will not be necessary. 
They did a weight estimate as well, and are guessing him to be at about 8# 2oz right now. 87th percentile.
 I just don't make small babies, folks.  
I know these reports are always upbeat, and all seems well. But we need to be mindful that Myles still very much has his CDH birth defect. It will not heal on its own prior to birth, or without surgery. We are still facing a very stressful and scary few months or so following his birth. We have so much peace about what the Lord has brought our way. We know this is partially from the prayers of His people. Thank you for that! Please continue to pray that God works greatly in and through this trial, and He is glorified. We know God can do amazing things, and are expectantly waiting to see what He does. 
Please be praying for our kids Maelyn and Levi who will have a very crazy time of upheaval in their own little lives while Mommy and Daddy will be needing to be with their baby brother until he is well enough to come home. They will need LOTS of love from people!  


"Yet you are he who took me from the womb;
    you made me trust you at my mother's breasts.
10 
On you was I cast from my birth,
    and from my mother's womb you have been my God."
Psalm 22:9-10 



( oh goodness....those cheeks!!!...and that cute tongue sticking out!? Cannot wait to meet this sweet boy and get him home!)  

Monday, July 28, 2014

36 Week Prenatal Check Up

"Thus saith the Lord, thy redeemer, and he that formed thee from the womb, I am theLord that maketh all things; that stretcheth forth the heavens alone; that spreadeth abroad the earth by myself;"  Isaiah 44:24






It has been so comforting to know our all powerful, all knowing God has this all under His control. It is out of our hands, and in His.  
I am now having weekly Doctor check ups, along with weekly biophysical profiles done on Myles to check on him as well. For those who are unfamiliar, this is an ultrasound that checks on baby's heart rate, muscle tone, movement, breathing, and amount of amniotic fluid. Baby is then 'scored' by these things done within a time of 30 minutes. Last weeks visit was good. However, it was found that I have developed 'polyhydramnios' which is excess amniotic fluid.  Our perinatologist was only mildly concerned about this as Myles got a perfect score of 8 on the test, and everything looked fine. Last week Myles was a bit sleepy during the test, and we had to work to see all they needed to. The other concern last week was that baby flipped from head down to a footling breech position. That was of some concern, as excess amniotic fluid puts me at some risk for preterm labor. But, with a swimming pool as a home, who can blame the little guy for stretching out a bit?!  Ha! 
Fast forward to today. 36 week check up. Everything looked good as far as the Dr. visit goes. The group b strep test came back negative! YAY! 
At the biophysical profile, Myles was showing off how cooperative he is, and decided to be an 'overachiever'.  He did all his breathing movements right away without prompting. 
His heart rate continues to be great. Muscle tone, and movement were also a joy to see. We even had good news as far as fluid goes. It is looking better this week, Praise God! Only He gets all the glory for these things. Once again, Myles got a perfect test score of 8, and in much less time than the allotted 30 minutes.  Also, Myles is back head down. Now we're praying he stays that way! 
We felt very uplifted after such good news. Dr. Peterson is happy with how Myles is doing just now. The longer he stays in, the better he will do once he is out. It gives his brain and lungs more time to develop more fully. We are still taking things week to week, but at this point, it is likely he could stay put until the standard 39-40 weeks. Praise God! 

Thank you all, once again, for checking in on us, and keeping us in your prayers! 
Love, Missy 




Saturday, July 19, 2014

Our Prayer Request List

"Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God. And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus." Philippians 4: 6-7 

I promised you all some specific ways you can already be praying for Myles and his upcoming battle.
Right now, he is safely tucked away!  Upon his birth is when his battle begins until the surgeons and doctors fix him up.
So, after our meetings last week, here is a list of prayer requests:

  • Pray that Myles breathing would stabilize quickly after birth. That his lungs will function well even prior to surgery. The more quickly his little body is able to stabilize after birth, the sooner he will be able to have his repair surgery. 
  • Along those lines of breathing function, please pray with us that Myles will not need any other breathing assistance other than the ventilator.  If his breathing does not do well with that, there are 2 other steps in order of severity of his condition that he may need. We are praying he is a hearty and resilient little guy, and will do well. 
  • Pray that Myles will be able to undergo a less invasive surgery that would only require a few small incisions. The other option is a larger incision in the upper abdomen that would require more to recover from. 
  • Pray that Myles diaphragmatic hole is small enough to be closed up by stitches, rather than a patch. If a patch is needed for closure, there is risk in the future(as Myles grows) of that reopening, and re herniation= more surgery. 
  • Pray for his esophagus development and function. With many CDHers, due to the stomachs position during development, the esophagus is not able to develop well, and many battle reflux their entire life. 
  • We are praying that Myles does well in each phase of his healing, and that the Lord will allow a hospital stay of a month or less. Realistically, it could be even 6 weeks to 2 months, or more. All depends on Myles and how he responds. Pray that he does not develop any infections. 
  • Some CDH babies really struggle with learning how to eat well, due to the fact that eating through the mouth is delayed a bit. Pray with this Mommy that Myles will adjust well, and we will be able to have an exclusive Nursing relationship. 
Thank you, once again, for all your many prayers!  We are so humbled and touched by all your love and support. 

Thursday, July 17, 2014

The beginning of a Journey

First of all, if you're here and reading this, it means you care about us and our little boy. You're praying for us! For this we thank you so much. God is so good to surround us with so many loved ones during a difficult time.

Psalm 37:3-7 has just been such a source of strength and encouragement already.

"Trust in the Lord, and do good; so shalt thou dwell in the land, and verily thou shalt be fed.
Delight thyself also in the Lord: and he shall give thee the desires of thine heart.
 Commit thy way unto the Lord; trust also in him; and he shall bring it to pass.
And he shall bring forth thy righteousness as the light, and thy judgment as the noonday.
Rest in the Lordand wait patiently for him:"

Congenital Diaphragmatic Hernia. 
Certainly not any words you want to hear a Doctor utter in reference to the child you are carrying in your womb, but God is always good. We are simply trusting Him to carry us through, and accomplish what He wills in this journey. 

What is it? 
Congenital diaphragmatic (dye-ah-fra-mat-ick) hernia is an opening in the diaphragm, which is the muscle separating the chest from the abdomen (see illustration at right). This hole allows the contents that would normally be in the abdomen to push up into the chest cavity. The lungs may be underdeveloped (hypoplastic ) because they lack the space to grow. CDH can have an effect on both lungs even though the defect is only on one side. 
If the amount of abdominal contents pushed into the chest is significant enough, the heart will be pushed out of its normal position in the middle of the chest. This shift may also reduce the amount of space for the lung on the opposite side, leading to abnormal growth and development of that lung. " 

When we initially received the possible diagnosis, we did some research that was really pretty scary. There are some bad statistics out there. All we could do is trust when we could not see. 
This past week we finally met with the Perinatologists, Surgeons, and Neonatologist that will be working with our son after birth. They had such encouraging news in the midst of what could possibly be a bad situation.
As far as CDH cases go, Myles case is NOT a severe one, which gives us every reason to believe he could do quite well with correct treatment. His diaphragm hole is not large. He has stomach, spleen, and intestines in his chest. Praise God, his liver and kidneys are where they should be, and are functioning fine. Also, his heart, while space is being a bit compromised, is looking healthy. Lastly, his lung growth was estimated at being 70% of a normal baby his size. We are praising God for these results, and know that He has His everlasting love and care is on this precious child. We have seen answered prayer already. 
So, what are we anticipating after his birth in 5-6 weeks?


  • I will be delivering at Children's Hospital of Wisconsin to make sure Myles has the best possible care from the very start. Praise God that we are nearby, and were so quickly referred to such amazing professionals. 
  • Right after birth, Myles will be intubated to help him breathe, and prevent further damage that could be caused by much crying. 
  • He will be taken to the Children's NICU where they will put more stabilizing procedures in him. He will need to be in pretty good shape before they proceed with the repair surgery.  Repair surgery could take place anywhere from a couple days after birth to even a couple weeks after. All depends on how Myles does stabilizing after birth. 
  • After repair surgery is done, it will be a step by step, day by day recovery. First hoping to remove the breathing tube, then feeding, growing, and all those necessary little items that we just take so for granted in a normal healthy child. This could take as little as a couple weeks, to months. This also depends on our little soldier Myles.                         
It seems so straight forward, but there is still a lot of potential for things to go wrong, or for Myles to not respond well to treatments. With this in mind, we have several very specific prayer requests in regard to what the professionals have talked with us about. 
I will share those in the next post!  

Thank you for all your love and prayers! We do not take them for granted, and are so grateful for each petition that has gone before the Father on our behalf. 

Stay tuned! I plan to keep this blog updated through out this adventure that God has given us.