Saturday, January 28, 2017

Weekend Update

It has been a busy week around here - 3 birthdays in the last 7 days add extra preparations and excitement. I guess Timmy joined in the fun of being a little extra tired out this week. 

He has been a little fussy at night times this past week - needing to be held more, sometimes coughing/choking on mucus in his throat, sometimes just whiny for an unknown reason. Is it because medications need adjusting? Is it the beginning of teething pain? Has he caught a little bug or something? We don't know, but the general picture is still a picture of health for our little guy.

He has gotten a little more sleep the last day or two and seems to be doing better, even if he is still fussy overnight. Maybe he just needs to be moved out of his pack and play and onto our bed - he does look awful comfortable there.

He sees his regular doctor in 3 weeks, and his cardiologist in 6 weeks. We are glad we have not had to add any extra visits in the last month - a month with only one Dr. visit scheduled. Just one in February and one in March makes for a weird feeling for us. Hopefully it stays the new normal.

We appreciate all your prayers and concern for Timmy and for us, we truly have been blessed with a great group of family an friends to support us as we walk this road. 

Sunday, January 22, 2017

I seriously can't resist!

Sleeping, well, like a baby.

But just as cute awake.

Earlier, I just posted a 2 month home celebratory post. But we continue to be grateful for many things. Timmy has a long way to go in many areas - leg strength, sitting up, rolling over, normal milestones that tick off normally in a pretty routine fashion. In a movie I watched probably too often in my teen and early adult years, one of the lead actor says "...and you think a little head jiggle is supposed to make me happy?" For us, it continues to make us happy. When he holds up his head, when he grabs for things and plays with things, when he follows you with his eyes or turns his head, when he kicks with his feet - it all makes us happy.

We are making some adjustments at home with Timmy's care this week, starting to adjust his feeds to get him used to more regular type feedings instead of the continuous feeding we are doing now. It was an option when we first came home, but life was more overwhelming then. Now, the schedule has calmed down enough to add another aspect. He seems to be taking to the new feeding schedule well, and we pray that he will continue. It enables us to have him unhooked from everything more during the day now that his need for oxygen has been reduced. Since that is already disconnected, getting the feed tube off of him for several hours at a time is also a help in being able to carry him around the house and let him play on the floor more freely. Small adjustments over time are the route to get where we want to be, so we will continue to take it one day at a time.

Still praising God for the miracle of the human body and how well it can work despite several deficiencies in anatomy. It is mind-bogglingly amazing!

2 Months at Home!

Yes, this isn't Timmy, but yesterday was Benjamin's birthday!
We enjoyed celebrating his birthday along with the fact that Timmy was discharged from the hospital 2 months ago.

Not sure if Joseph was sure about what to do with his brother, but he loves him to pieces.

And Jonathan is always photo-ready, and enjoys his brother as well.

Wednesday, January 18, 2017

Play time on the floor this afternoon.

Timmy has been doing well for the most part. The cardiologist is extending our visits. The VNA is going to bi-weekly visits. He is able to be off his oxygen for good parts of the day. But he is still a sick boy.

He has been having coughing fits that just make him miserable. Sometimes they come right after he gets his meds, and sometimes they result in him throwing up - expelling formula and most of the just given meds. We have seen a few more smiles in the last day or so, so we are hoping he is getting to feeling better and the coughing fits will go as well.

He has a heated rice bag on his chest in the picture to try to help with the mucus in his throat causing the coughing. So far there has not been anything in his lungs, so we are grateful for that.

It just is good to see him without the canula stuck up his nose. 

Saturday, January 14, 2017

A little extra attention

Timmy got a little extra attention today. He and his brother Robbie were on the front page of the local newspaper this morning. And then, some gear we ordered for Timmy came unexpectedly early. The last estimate we had was that his seat would come on Tuesday, but it came today, along with a new rattle and a pillow to help hold him up while laying on his belly so he can play. I know, I know, the important part, lots of pictures: (I didn't upload all 70 or so that I snapped in his new chair, just a 'few' of them.

Let me grab that camera!

Are you done yet?

He had another rough night of not settling down very well, but he has been able to rest more today, and mommy us also getting some extra rest today, so we are grateful for being able to have slow days sometimes in our schedules.

Loving every moment with this little guy, and praising Go for his continued answers to the many prayers going up on Timmy's behalf.

Friday, January 13, 2017

Good visit with the cardiologist

And it looks like someone is all tuckered out!

Going into today's appointment, we weren't sure what to expect. We've done several of these visits, and this is our second since leaving the hospital in Rochester. But he has been gaining a lot of weight, and his oxygen levels have been holding so well, and on the other side, he has some coughing spells that sound more like the end is near. Only one of those 3 things really caused the doctor any excitement. When he walked in the room, his eyes popped open and he couldn't believe what he was seeing. "He looks so good!" "No, really, he looks really good!" We can't count the number of times he told us that. 

We asked him about the oxygen levels being higher. Obviously a good thing, but nothing unexpected, per se. It just means the blood in his heart is flowing more the other direction through the holes and leaking valve. The weak side of his heart is doing better at pumping, but it doesn't mean that side is growing or getting stronger. It is just a sign of how good Timmy's health is right now. "You two really have him tuned in good right now at home, just look at him!" "He looked so sick when he came home from the hospital, but he looks really good!"

We asked about the coughing, and he told us "When he gets a cold, it will take him a little extra time to fight it off, but he'll bounce back." What?!? We were told by the surgeon that a cold would probably be a life threatening illness! But the doctor told us with as healthy as he is now, he would struggle, but he would bounce back. (Which makes dad feel better with his running nose and sneezing) 

He thought he looked so good he said "What do you think, see you in 3 to 6 months?" A very nice thing to say when we thought we might not even have that long with him. Mom spoke up and requested a 2 month visit rather than going a full 3 months. He agreed that was fine.

When we talked about Timmy's long term outlook, he told us that he agrees more with Dr. Vermillion (who told us he might live months, he might live years). But also said his book isn't written yet (we know that) "I don't want to give you any false hope, . . ." but he knows patients with unfixed AVSD who are in their 30s and 40s. We feel more uncertain than we felt before the appointment, but it is a good uncertainty. That cloud may still be hanging in the background, but it feels like it moved a little further away today. We are praising God for good news and for a 'healthy' Timmy.

Tuesday, January 10, 2017

Just a few faces of Timmy






All within a few moments of each other. He is certainly a source of joy in our home. We still have the oxygen on and still on the lowest setting. He seems to be doing well, and we are grateful.

Monday, January 9, 2017

Testing improved oxygen levels

Timmy's oxygen levels (sats) have been doing better this last week. We have an oximeter at home that monitors his pulse and oxygen levels all the time, so we can adjust the flow of the oxygen from the concentrator in the living room (or the tanks when we need to go out). We have been maintaining the concentrator around the lowest setting now for the better part of several days. With the accidental removal of the canula yesterday and seeing his oxygen levels stay up, we are running a test today.

The oxygen concentrator has been turned off. For now, the canula is in place in case we need to turn it back on and he is still sleeping, but his oxygen sats are staying where they are supposed to be for him.

What does this mean?

I wish we knew. Timmy's oxygen levels are lower than your average infant because the oxygen rich blood from the lungs mixes with the oxygen drained blood from the rest of the body in his heart. Instead of the blood flowing nicely to the lungs and then to the body, Timmy's blood (blue and red) mix in his heart and some blood that already has oxygen goes back to the lungs, and some blood without fresh oxygen goes back to the rest of the body. So this could mean that there is less mixing of the blood than there has been. (Which could be due to less leakage of a valve, equalized pressures between the halves of the heart, or even the beginning of the miracle we are praying for.) But since the heart is a very complex organ and Timmy is even more complex, we are unsure what it means. Whatever it is, we are praising God that it at least shows that his little body is not having to work as hard as it had been. He is still very alert and plays & smiles regularly. He has also continued to gain weight. We see the cardiologist on Friday and continue to pray that Timmy knocks his socks off in terms of how he is doing and what the heart looks and sounds like.

We know of another heart baby who has not been doing well the past few days. If you would, please pray for Clara Ray and her family. She is probably more complicated than Timmy, and has had at least as many ups and downs as Timmy. I know they would appreciate your prayers.

Sunday, January 8, 2017

Happy Sunday!

This morning, as we were getting most of the family ready for church, it was noticed that Timmy had pulled his nasal canula out. Now, that could be a cause for concern, but when Jen noticed it, she looked at the oximeter. Timmy's O2 levels were in the mid 80s - the normal high he reaches. So, we left the canula off for a few minutes, allowed him a brief break from that tube, and took some pictures of his sweet face without the tube. If only he had decided to smile. Oh well, here they are:

Just relaxing without my oxygen tube.

A little tired.

Starting to get agitated by a coughing fit coming on.

Photo shoot over! (But still terribly cute)

Anyway, we have enjoyed a few slow weeks around the house. A kid or two came down with a stomach bug at the end of the week - hopefully they are done and no one else catches it.
We have an appointment with the cardiologist on Friday. We are continuing to pray for healing for Timmy's heart, and are hoping for some good news from the cardiologist, but remain grateful for each new day to share with Timmy here at home.
Some days are longer than others, and sometimes we wonder how long we will have the strength to keep up with this level of care on top of homeschooling the rest of the bunch, but we praise God for the strength to meet each day and the little breaks that we get to recharge our batteries and keep carrying on. 
In the midst of all of it, there is still nothing like a half hour break to sit and hold my boy and enjoy all the blessings God has given.

Saturday, January 7, 2017

Saturday Morning Pictures


What you lookin' at daddy?

I thought you were done!

Play time!


Daddy! The 'fish eye' filter doesn't look good!

Just hanging on the couch with mom (off camera)

Monday, January 2, 2017

To help Timmy feel more 'normal'

He received a crocheted lion for Christmas. 

It now has a g-tube (not just like his, but like his old style)

I'm sure when he wakes up, he'll appreciate it.