Saturday, December 31, 2016

Happy New Years!

"How will you be bringing in the new year?"

My hope:

Reality is probably going to be a little different. Since it is Saturday night, I will probably be sleeping somewhat soundly around midnight. For Jen and Larissa (who helps out on Friday & Saturday nights), midnight is about the time Timmy starts settling down for the night. He's sleeping well now, but he'll wake up by 10:00 to fuss for a few hours (if his current pattern holds).

So, while we'll all be hoping to sleep in the new year, there will probably be some late night 'festivities' going around to help us flip the page of our calendar.

Tomorrow's Sunday School lesson is on praise - how natural it is for a believer to praise God. And the morning service is from Exodus 15 - the songs of praise after God defeated the Egyptians in the Red Sea. I think the reminder is a good one.

"I will praise thee, O Lord, will my whole heart; I will shew forth all thy marvelous works!"
- Psalm 9:1

With all the lost sleep, medication schedules, Drs. visits, hospital runs and everything else in between, we have been blessed and God has shown himself greatly to be praised!

Friday, December 30, 2016

A Pretty 'Easy' Week

First, a little comparison. Timmy as we were getting ready to leave the hospital, weighing about 9 1/2 pounds.

And Timmy this week, weighing in at 12 1/2 pounds.

We have truly been blessed.

A pretty easy week. It seems like it has been a pretty easy week. Until I think back through it. Over the weekend (Yes, Christmas weekend) we experienced some major leakage from the stoma (hole into Timmy's stomach for the g-tube). So much formula/breast milk was leaking out with stomach acid in it that it was causing skin problems and sores on the surface of Timmy's stomach. We have people we can call, but were unsure of who, and didn't want to be a bother unless we needed to. We eventually decided on adjusting Timmy's feed rate so his stomach wasn't so full, and to reduce the amount of gas-x we were giving him. Gas-x seemed to help when we first started giving it, but it now seems like it was part of the problem. The feed rate we changed so that he is getting continuous feeds with no time off the pump, but at a lower rate. It works out to a slight reduction in calories, but he has been gaining half a pound a week, so it isn't harming him. (He is still gaining).

As the g-tube problem was coming to an end, it was hard not to notice Timmy's color was not as good as normal. Blueish fingers, even a bit of blue coloring in his face. We were told that is what a normal child in Timmy's condition looks like, but it is still abnormal for him. We weren't 'worried' about it, but it was another thing to cause concern and to keep an eye on. Happily, his normal coloring returned after a couple of days.

See, an easy week!

He has been reaching out and playing with things more. He loves to sit up and hold up his head himself. And he enjoys 'talking' and 'singing' to let us know how he is doing. 

Even as we grow more accustomed to our new normal, it keeps changing. But some things don't change. We all love our little Timmy. We all have to work together to make the days work. And we are all grateful that he continues to grow and develop at his unique pace.

Sunday, December 25, 2016

Merry Christmas!

I missed our big milestone the other day, sort of.
I had been looking forward to posting for being home from the hospital for a month, which would have occurred on December 21st in the afternoon. Of course, we left early morning to head to the ER with Timmy to get his G-tube taken care of, so I was thrown off a little. At any rate, I will combine posts. 

We are so blessed to have milestones to celebrate. 8 months old tomorrow. 1 month home from the hospital last Wednesday. Each pound of weight put on. (Even each ounce of weight is still a milestone and a blessing.) 

We have been blessed with a very low key, but extravagant Christmas. We are looking forward to spending some time this morning with friends at church, and, if energy levels and strength allows, my parents will join us this afternoon. Aside from egg nog and making some fudge, we won't have all the trimmings (although people have added a few extras to our basic celebration). And we are blessed with children who are happy to be able to go caroling and handing out cookies rather than worry about what might be missing. You would be hard pressed to find a lower key Christmas than we have. But it is an extravagant Christmas. It started several months ago when we started getting cards from my siblings. They started with things like "We figured Timmy needed an early Christmas this year." Up through this week's card which said "In case no one else had told you, we decided that since none of us need anything this year, we would take what we would normally spend on each other and send it to you for Timmy's care." Many have asked if we need anything. Some have even pointedly asked if our finances were OK. And a few have wondered if I was being truthful when I said that we had no financial need. It has been overwhelming to be in the receiving end of such blessings, but between "Christmas" gifts and many other gifts from friends and family, there is no need. Even with some ongoing expenses of medicines and supplies that we are covering, there is a surplus of gifts sitting there waiting to be used.

Thank you cards have mostly been sent out, but I am sure over the last 3 months that some have slipped through the cracks. I did my best at accounting, but other things took a priority.

And to think that those gifts (as grand as they have been), are nothing compared to the gift God gave us at Christmas. I have a little experience with the birth of a child. A compliment paid me a few children ago was "You are no less excited by this child than you were with your first!" Children are a blessing I don't take for granted. As we have been told that our youngest may only have months to live, it has brought emotion with it that has not been easy to deal with, but is nothing compared to what God the Father chose to endure to save me from my sin. He sent his ONLY Son. Not just to be born in a manger and give us the picture of the nativity to celebrate and enjoy, but to die on a cross, separated from each other by my sin, so that He could cleanse my sin away.

This year, I have the blessing of feeling the joy of the sacrificial gifts people have given toward Timmy's care. I also have the 'blessing' of feeling just a minuscule part of what God went through. Timmy's biography has not been written yet. He may outlive us all! But the sorrow we have dealt with in receiving the news from the doctors of how they see things have given us a faint reflection of what the Father sacrificed for us. We are grateful.

Merry Christmas everyone!

I hope between all the presents you receive and open this year, you'll have time to think about the greatest gift anyone has ever given you. And if you haven't 'opened' it yet? Today would be a great day to receive the gift God purchased for you so many years ago. And if you're unsure how - I'd love to help you unwrap that gift!

Wednesday, December 21, 2016

Busy Day

Look! Here's a picture of Timmy in Rochester.

We started our day a little before 6:00 am when Timmy was crying and his G-tube blew out. Literally, pressure from his stomach pushed the G-tube right out of the hole, and formula came pouring out of his stomach and ran down his tummy. You can't make this stuff up! Anyway, we replaced the tube, and filled the balloon that holds it in. Then, after consulting with the Pediatric Surgical team in Rochester (who suggested we bring him to our local hospital to have him checked out), we loaded up the family, half of our possessions (so it seemed, anyway) and headed off to Rochester.

We arrived at the ER around 10:00 am and got Timmy settled in. They removed the PEG tube (type of G-tube) and installed a Mic-key button G-tube. Then they used a dye to see if the tube was correctly placed. Timmy and I waited an hour after the imaging was done to get hospital transportation to push Timmy's bed back across the hospital to the ER. After that, we waited another hour or two to be released to come back home.

In the interim, we saw the lady who put in Timmy's PIC line, and she absolutely gushed over Timmy - how well he looked, how big he was, how great it was for him to be home and doing so well! We can't deny that was good to hear. We also stopped up to see a friend who is still staying in the PICU with her little girl. We wish she was able to go home, but that hasn't worked out logistically for her yet. Hopefully soon.

Despite being in the car for 6 hours and cooped up in the hospital, the kids mostly had a good day. Jen and I are grateful for the care Timmy got - and the assurance from the medical team up there that bringing him up there was the best thing for him. (Our hospital probably would have ended up sending us up there anyway, and we got there quicker by driving ourselves directly) We saw God's hand of blessings in many ways in our travels, in Timmy's care, in God's timing for all of this. 

We are tired, but we are home and we are content.

Busy morning?

Just a quick request for prayer. Timmy's G-tube came out this morning. We have put it back in, but it needs to be evaluated before we can continue feeds. This probably means a trip to Rochester this morning. Not much time for updating, but prayers are appreciated.

Saturday, December 17, 2016

Good morning!

Some more of the many faces of Timmy.
*disclaimer* I know there are weird shadows, but if I use flash he closes those big beautiful eyes. :)
A friend from church gave him a monkey rattle last night. He's still getting the hang of it.

For some reason, I can't stop taking pictures.

Because his face keeps changing.

It is different between when I hit the button and the camera takes the picture.

But they are all good.

Those were all taken less than a minute before he had a coughing fit and went into his severe distress mode. Hacking, struggling to breathe and everything. It only lasted a few minutes and he was back to being calm for the last two pictures.

Friday, December 16, 2016

How is Timmy Doing?

Yes, we know the big question everyone is wondering and praying about. 

"How is Timmy Doing?"

This is an easy question to answer, and a hard question to answer. Sometimes, Timmy acts well, feels well, and smiles a lot. But even in that, a little congestion or mucus in his throat throws him for a loop and he struggles to breathe and he hacks and coughs and sounds like he is dry heaving. 

Then there are days where something seems off. This week, he wasn't wetting diapers as frequently as normal one day. This is important because if he is not wetting diapers, it may mean that he is holding on to more fluid, and that is a problem for patients with congestive heart failure. The fluid builds up around the heart and lungs and makes it harder for the heart to work and harder to breathe. At the same time, his oxygen sats were going down much lower than normal, and he was panting more. If one thing gets thrown off in his balance of medicines, feeds or how his body is tolerating them, it throws a lot of other things off.

This week's medical imbalance seems to have been related to gas issues, and have been resolved. Timmy is back to being active and content most of the time. All the while, we keep finding out how many things we still don't know about caring for a child like Timmy. The steep learning curve continues. So we continue to ask questions (even ones we have asked before and didn't absorb the answer well), and continue to adjust in little ways to help Timmy out.

We are thankful for each new day and each new smile and strange look that Timmy gives us. 

Tuesday, December 13, 2016

Off to the Doctor today

We weren't scheduled to see a doctor in December, but Timmy's G-tube stitches are causing some inflammation, and probably should be removed. We thought we heard the stitches were dissolvable, but at this point is is clear they aren't. It has made him a bit fussier over the past couple of days, so we asked the visiting nurse yesterday, and she told us she needed a doctor's approval to remove the stitches. So we needed to make an appointment. So, hopefully the stitches will come out today and Timmy can rest a little easier.

He slept better last night than he has been with the help of some ibuprofen, so we are hopeful that the trouble sleeping has just been because of discomfort from the stitches.

He is up over 11 pounds as of his weigh-in yesterday, and continues to look well, and move around quite a bit. His weight is 3 pounds higher than what it was for most of his time in the hospital. His diagnosis hasn't changed, but we are still praying it does, and are thankful in the meantime for having a growing baby.

Tuesday, December 6, 2016

Picture 'update'

He sometimes seems a little far away.

He sometimes plays with his cannula.

He doesn't mind his occasional nebulizer treatments.

And he sleeps a lot.

Friday, December 2, 2016

Another good checkup!

He looks so good!
Dr. Kitchen said it on Monday.
Dr. Orie said it on Wednesday.
The nurse from the VNA said it today. 
They all say he looks really good. Good coloring, good muscle tone, he is really content, he moves around well, even going as far as to call him a little miracle. How else can you explain a terminally ill child with a medical 'rap sheet' that makes doctors say "Oh wow!" and "That is a complicated case," that acts and behaves more like a healthy child. His tests this week did not show any great improvement on how his insides are working, he is still in heart failure, he still has a regurgitation in the valve in his hear, he still has two good sized holes in his heart. But he is happy and healthy.

We are praying for our little miracle to turn into a massively huge miracle. (One that requires the surgeon on his case to do back flips down the hall) We are rejoicing for even the small miracles of a 'healthy' sick child. And we are enjoying all the smiles, snuggles, cooings and all the looks from our baby boy. The future isn't certain for any of us, but when we take it moment by moment, the choices are easy to make. Hold him, snuggle him, sing to him, play with him, and love on each other as a family. We are blessed.