Monday, October 15, 2018

Homeward Bound!

Aannnd....we're off!
It has been raining all day, and Seth is following behind us in his truck. Please pray that we will all have a safe journey home! It is a 3-hour drive.
Samuel has been doing well so far!

TODAY is the day!!!

We're just about as excited for today as we are for when daddy makes noise with a plastic bottle! And that's pretty excited!

As of now, the plan is still to leave here in an ambulance around 11! However, since it is a non-emergency transport that time could be pushed back if the ambulance is called out for another emergency.
There are also a few things that still have to happen this morning before we can leave. And if Samuel does anything out of the ordinary this morning discharge could still be postponed.
All of that to say...we are trusting in God's perfect timing! And trying not to stress!

I will try to keep y'all updated throughout the day. They will likely be short and sweet!

Please pray:
•For all of the pieces to fall into place this morning.
•For Samuel to do well for transport, with no emergencies.
•For Samuel to continue to remain free of any infections and viruses.
•For Samuel to adjust well to being home!
•For Seth and I as we make this big transition.

Monday, October 8, 2018

Today is NOT the Day...But That's OK!

Today is October 8th - the day we could have been going home.

But we're not, and that's OK!

Discharge has been pushed off a week, and is tentatively (it's always tentative!) scheduled for the 15th now. We just need a bit more time here to figure out the balance of diuretics and electrolytes. Samuel's body is showing that it needs high doses of diuretics, but giving those high doses makes his body get rid of electrolytes - mainly sodium and potassium. Those levels have remained low for a while now despite significant increases in the supplements that he is getting. If his diuretics are weaned then he has increased work of breathing and his sats drop, but if his diuretics are increased his electrolytes suffer even more. So it's been a non-stop balancing act that we still haven't quite figured out.

But truthfully? It didn't even faze us when we were presented with the idea of staying another week. What's one more week after 8 months away from home? We know that God had this in the plan all along. We know there must be some reason we are here for an additional week.
If nothing else, we have learned along this journey that God's timing is always perfect! Even when we can't see it in the moment, we have been shown over and over again that each moment, each decision, each holdup - they all have a purpose.

Remember back at the beginning of June when Samuel had surgery to get his trach and central port? We were supposed to be sent back to Arkansas Children's Hospital 2 weeks later! We were SO excited! But then Samuel started getting persistent mystery fevers. And we had some of the hardest days...We still don't know the cause of those fevers. But what we do know? What we do know is that without those fevers we would have been on a plane back to ACH before the end of June. Without those fevers we would have been gone from Delaware before anyone realized just how bad Samuel's GI issues were, and that he had been misdiagnosed with a pseudo obstruction. Without those fevers we would have been sent back with Samuel still on TPN, unable to eat, and an obstruction in his intestines that no one knew existed!
It was only because of those fevers that our timeline was pushed back, and because of that the GI surgeon was able to offer us another last-ditch surgery to relieve some pressure from his ever-growing belly. But instead of just relieving pressure, he found the one thing that everyone said wasn't there! And here we are 3 months later and Samuel is being fed milk through his g-tube! Not only that, but if they hadn't found the obstruction at that time? Possibly if it had been even a few more days...Samuel's intestines could have easily ruptured, and then this would really be a different story.

The point is that we never know what is best. Only God does. We have seen that over and over again, so we will continue to trust in Him. We are not about to let another week of hospital life get us down!

My first time wearing Samuel! I think you can tell that we both enjoyed it!

Child life bought by an exersaucer for Samuel to try out! With a few modifications, he enjoyed being able to sit up and play with some new toys!

Prayer Requests:

  • Pray for Samuel's fluid balance to remain stable. They did an x-ray today and his lungs are looking very clear! Which is great.
  • Pray that Samuel's electrolytes will stay in a good range.
  • Pray that the doctors can figure out why Samuel's body is requiring such high doses of multiple diuretics. The current state of his heart requires diuretics, but not this much. It is reasonable that he also needs some diuretics due to the state of his lungs, but (again) not this much. And while babies with EVC do often require more diuretics than most other babies with cardiac or pulmonary issues, the amount Samuel is on is even higher than what would be expected by that reasoning. Maybe it's the combination of those 3 things? Or maybe there's something else that we're missing...please pray that if something is being missed - if there is another cardiac or pulmonary issue that hasn't been diagnosed - that God will reveal it this week!
  • Samuel will be having another echo on Wednesday, but this time they are going to sedate him. They are trying to get very clear pictures of certain parts of his heart that are often difficult to see on babies with trachs. The reason they are wanting this is to make sure there are no other complications that they are missing - any other reason that he might be requiring so many diuretics. Please pray that Samuel does well for this, and that they are able to see everything that they need to.
  • Pray that Samuel will continue to remain healthy! No viruses or infections!
  • Pray that God will continue to prepare our way home! Especially pray for God to hand pick the perfect home nurses for Samuel - that they will be loving, trustworthy, and skilled.

  • We are closer to going home than ever before!
  • Today was the first day in several weeks that Samuel's sodium and potassium have both been within the normal range!
  • After almost 2 months of no growth, Samuel is starting to gain some weight! He is currently 12 pounds, 9 ounces!
  • Samuel is tolerating longer periods of time in his car seat! He requires a LOT of distraction, but I think we will be able to make it work for the 3-hour ambulance ride!
  • From the pictures you can see that we tried a few new things over the past week, and Samuel enjoyed each one!
This is His story, and it is all for His glory!

Tuesday, October 2, 2018

D-Day is Approaching!!!

I promise I am not trying to only do monthly updates, but this past month has kept us busy! Maybe some time I will try to do a post on what a day-in-the-life looks like here, so y'all can see how full our days are. I have so few long stretches of time where I can sit down and write a post, so I have written a lot of unfinished ones over the last month. But I want to keep y'all updated because there have been a lot of exciting things that have happened! There are also still many prayer requests, and we have so appreciated having each of y'all on this journey with us knowing that y'all are lifting us up before the throne of God.

But before I tell you about the SUPER exciting is a picture/video summary of some other exciting things that happened over the past month!

September 1st
Samuel had his first really big belly laugh! It was such a special moment seeing him shake with joy! After a few minutes I began to cry. Tears of joy for seeing my baby laugh, but also tears of longing as I desperately wish we could hear his sweet laugh.

September 3rd
Samuel had his first babysitters! My sister and a sweet friend of ours from church (both of whom are nurses!) drove down to see us and let Seth and I go out on our first date away from the hospital in a long time! We were so thankful for the time to step away while knowing Samuel was in good hands!

September 4th
Samuel successfully transitioned back to the home ventilator! We are SO thankful that they put him on it for the last 3 days in Delaware, because when they transitioned him here Samuel actually failed within the first 10 minutes. BUT because he had successfully been on the home ventilator in Delaware, we were able to tell them 3 specific things that had been different at the other hospital. After a couple of hours of gathering the right supplies, they tried Samuel on the home ventilator again and he has been on it ever since! Yet again, God's hand at work!

September 5th
We were given a new book today by some dear friends who came to visit! It is such a good book for kids over-viewing creation, the fall, sin, and God's plan of redemption!
Samuel loves to look at books as we read to him!

September 6th
Today we moved out of the CVICU, down to a non-ICU floor! This is Samuel's first time EVER to not be in an Intensive Care Unit! He spent the first month of his life in the NICU at ACH, then the next 5 months in the CICU (cardiac ICU) in Delaware, and was then transferred back to the CVICU (cardiovascular ICU) here at ACH. It was so strange for us to be in a room with fewer monitors and beeping! But now that we are here we officially begin our transition home!

September 8th
Today Samuel really began interacting with his tongue! His favorite game for about a week was sticking out his tongue and smiling, especially when he would see someone else's tongue! He thinks tongues are pretty funny!

September 11th
Today we put Samuel in his carseat for the first time ever! He has to start preparing for the 3-hour ride HOME!

September 13th
Samuel went on his very first stroller ride! We got to take him outside, and he was all smiles!

September 16th
Samuel found a new favorite game of cracking himself up with his own serious face! He had us laughing so hard!

September 19th
Samuel did tummy time on a ball today and tolerated it for 5 whole minutes! This is a big deal for Samuel! Because of all the surgery's he has had on his belly/chest area, his front side is very sensitive so he has never tolerated tummy time. He wasn't even able to do tummy time much until just the past couple of months. It took distracting him with live music, but he showed great improvement!

22 September
We have been waiting for ophthalmology to see Samuel for a couple of months now, but apparently it is very hard to convince them to see someone who is inpatient. We are thankful they were able to do an exam for him, and we are now patching his strong eye for 2 hours every day. Although he is not the biggest fan, he has been a trooper, and we have already seen improvements!

25 September
This morning Samuel had an MRI of his brain because there has been some concern that he has more fluid on his brain than usual. The MRI confirmed this. However, as of right now it is not causing too much pressure, and Samuel is not showing any signs of it effecting him. So it is something we will just have to keep a close eye on. Samuel did so well for the MRI in the morning that he was still able to go on his scheduled stroller outing that afternoon. Several of my family members drove down to join us - including Samuel's grandparents, a couple of aunts, and 3 cute cousins! His cousin Amelia, in particular, has been anxiously waiting months to finally meet "baby Samuel" (who she so sweetly remembers to pray for daily!) and she was so excited to hold him!

27 September
Samuel is 7 months old!

October 1st
Samuel LOVES his music therapy! Music helps get him through some of the hard things that he has to do daily.

Those are just a few brief highlights...

But now onto the SUPER exciting NEWS!

We have been back at Arkansas Children's Hospital (ACH) for almost 6 weeks now, and D-day is being discussed as a reality!

Discharge day!!!

Instead of simply talking about it as some future event down the road discharge now has more of a timeline, and....are you ready for this??

It may be less than ONE WEEK AWAY!

Could it change? Absolutely. In fact, many would probably expect it to change, especially considering Samuel's many complicating factors. It is dependent on Samuel remaining stable, not getting sick, ensuring that his electrolytes stay in a good range, and passing his 3-hour car seat test. All of our medical equipment and supplies also have to be delivered in time, and there can't be any hiccups with insurance. All that to say, we are simply not letting our hopes get too high (something we have become very accustomed to doing), yet at the same time living expectantly and preparing as if it were happening any day!

Lord willing - if all stays on track - we may be taking Samuel HOME with us for the first time ever in six days - October 8th.

October 8th of last year was the day we would have been welcoming our first baby - Penuel - into this world. But God had other plans.
Last year I dreaded the arrival of October 8th. Last year that date was full of tears...
This year? This year October 8th is once again a much-anticipated date! This year we are hoping that October 8th is the day we get to stop living in hospitals for the first time in over 8 months, and take our precious son HOME with us! God is once again redeeming a painful day.

As we prepare to transition home, my family has been working tirelessly to get our house ready so that we haven't had to make the 3-hour trip home, away from Samuel.
Our house that we left spur-of-the-moment over 8 months ago. Our house that didn't have a nursery set up because we still had 10 weeks before Samuel was supposed to arrive and we hadn't had any of our baby showers yet. Our house that now needs to be sanitized, set up, and prepped for a medically complex child to live in!

Many of y'all over the course of this journey have asked ways you can practically help, and there hasn't really been a lot for people to do long-distance. But, for those who have been anxious to help, we do have baby registries set up on and with some of the many supplies we still need to get. We need lots of the typical baby stuff like crib sheets and baby soap, but we will also need many non-traditional things for Samuel - like pipe cleaners to clean his trachs, bins to keep in the refrigerator to organize his meds and his milk that he is fed continuously, and hand sanitizer to protect our medically complex son from a cold that could be life-threatening to him. We are slowly gathering all of the things we will need to properly care for Samuel, and it makes it feel more real that we may actually get to bring him home with us!

But, while we can't wait to go home, we also don't want to rush out of here if Samuel is not ready. Please pray with us that it will happen in God's perfect timing!

Prayer Requests:

  • Pray that the fluid on Samuel's brain will not increase, and that it will not cause him any issues!
  • When we arrived back at ACH they started weaning Samuel from some of his diuretics. After a couple weeks, it started catching up to Samuel and he began to struggle with breathing and keeping his sats up. They have slowly been going back up on his diuretics, but now Samuel is not responding as well to them as he used to. Please pray that they will be able to figure out the perfect doses for Samuel, and that his body will be able to get rid of all the fluid it needs to.
  • Along with the diuretics, Samuel has also been struggling with low sodium and potassium levels, so they keep having to increase his supplements. Part of this is due to the diuretics he is on, but it may also be due to the fact that part of his intestines have been taken out so there is not as much real estate to absorb all of the nutrients he needs. Please pray that he will be able to maintain these levels in a good range.
  • Pray that insurance all works out so that we can take Samuel home and be provided with the nursing coverage that we need, especially at night so we can sleep!
  • Pray that our home nurses will be trustworthy, loving, and skilled so they can help us take care of Samuel well!
  • Pray that Samuel will do well in his car seat for the 3-hour ambulance ride home!
  • Pray that all sickness stays far away from Samuel!
Things we're thankful for?
  • We are close to going home! Although it may not happen next week, we are just excited to have a discharge date because that's the closest to home we've ever been!
  • Samuel's joy continues to shine through even on the toughest days!
  • God's grace that has gotten us through each moment!
  • Our family in NWA who are helping make it possible for us to come home!
  • All of you who are praying for us and supporting us in so many ways!
This is His story, and it is ALL for His glory!

2 BIG Updates!!!

It has been a long time coming, but we are back! Back in the blogging world. Back to sharing our story in order that God may be glorifie...