Myles made it over the first hurdle, he is through surgery. They took him down to surgery about 8:00 am and we finally spoke with the surgeons just before noon. It was a really long wait, all we wanted was to hear he was done. The surgeon took us into a room to discuss the surgery and the more he spoke the more I smiled. The surgery went great. they were able to do the surgery with three small incisions and were able to close the hole without a patch, they just used stitches to close the hole.
Recovery has been good yet difficult. Myles is doing great, he is doing all the things he needs to. For us this has been a long and emotional day. Even in spite of how great it is doing it is hard to see you child (I'm sure at any age) recovering from surgery. He had a less invasive surgery and so many other positive things throughout but it was still surgery. We know god has a plan and we know God is sovereign but you come to a point where knowledge and theology don't take away the pain of the situation. That is where that same knowledge and theology coupled with experiential compassion make a huge difference. Just to know people are praying. It is great to be reminded of the truths of Scripture but it is such a blessing to not only hear "I'll pray for you" but to know that someone is praying.
- Matt
Wednesday, August 5, 2015
Monday, February 16, 2015
6 months surgery clinic visit
Can you believe it's been nearly 6 months since our CDH journey began?
We saw Dr. Lal who was more than pleased, once again.
You can see his heart was being pushed all the way over to his right side. The small space next to his heart on the left side, is his left lung. Squished. His right lung isn't even visible, but was being crowded by the heart. Below the lung on his left is a round space, which is his stomach. It shouldn't be there. Which was the problem. ( you can see the feeding tube there)
Heart in the middle, and two fully functional, fully normal sized lungs, with stomach down below the diaphgram where it should be. Praise God.
Last week we had the joy of returning to Children's Hospital where we had Myles' 6 month post surgery check up. Not too many CDH parents see these visits as a joy. We are beyond thankful for the way God miraculously healed our little boy.
We had to get a follow up X-ray done on Myles to check on his lungs.
He just took it all in stride and didn't even fuss until they had to tape his cheeks so they would be out of the way. Ha!! What a problem to have.
Up in clinic, they weighed Mr. Myles fully clothed, and he was a whopping 18 pounds! Eating is clearly not an issue for him!
We were told that we have no worries regarding his health, and that we can treat him just like our other 2 kiddos. In his words, "Forget this ever happened."
Obviously, he knows this isn't possible, but for all practical purposes, we don't need to freak out unnecessarily when Myles develops a cold.
God is just so good. So kind.
I want to share the X-rays So you can see this miracle for yourselves.
Here is Myles chest before repair surgery.
You can see his heart was being pushed all the way over to his right side. The small space next to his heart on the left side, is his left lung. Squished. His right lung isn't even visible, but was being crowded by the heart. Below the lung on his left is a round space, which is his stomach. It shouldn't be there. Which was the problem. ( you can see the feeding tube there)
Now....here is the X-ray from last weeks visit.
Myles is as healthy as any other baby his age, and we know Who to thank for that!!
"O sing unto the Lord a new song; for He has done marvelous things: his right hand, and his holy arm, has gotten him the victory." Psalm 98:1
~ Missy
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.
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 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
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)
~ 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
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).
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).
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