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. 

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

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

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).

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)

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