Friday, September 30, 2016

The other kids

You may be wondering how the other children are coping with mom and dad being in the hospital with Timmy. Well, dad is home with the other kids for the weekend, but earlier this week, Little J was missing mommy, daddy and Timmy. An older sister made a request for more pictures that included mom and dad, and they were sent.

Here's little J showing off his pictures:

It's all starting to look the same

Days are blending together, pictures look very similar, we are repeating through the clothes we packed, and meal options are even repeating. Routine is a good thing, even if the routine is not the desired one.

The questions today are: will the plan change again? And will Timmy's situation change?

While it would be nice to keep the status quo for a few days and catch our collective breath, we will trust God with what the day brings. They may have scratched off plan A and plan B (maybe more), but there's a whole alphabet still, and God has an infinite number of answers to every problem. He knows the end from the beginning and gives us daily grace in it all. God can do the heart repair that has the doctors wondering. He can work a miracle, and we are praying that He does. But my faith doesn't rest in getting what I want - that would put me in the place of God. I like to be in control, but I am good knowing the One who is in control has it all handled.

 "I will praise thee; for I am fearfully and wonderfully made: marvellous are thy works; and that my soul knoweth right well.
My substance was not hid from thee, when I was made in secret, and curiously wrought in the lowest parts of the earth.
Thine eyes did see my substance, yet being unperfect; and in thy book all my members were written, which in continuance were fashioned, when as yet there was none of them.
How precious also are thy thoughts unto me, O God! how great is the sum of them!"
Psalm 139:14-17

Thursday, September 29, 2016

Back to the PICU

Just a quick note. The doctors had their conference this morning and have decided that Timmy needs to be in the PICU. Surgery is on hold at this point, until he has improvement. Such phrases as 'long term,' and words like difficult made for a rough update this morning. Not all news is good news, but we are thankful to have come here Monday morning. Timmy needs to be here, and we are grateful.

Good morning!

I thought that I would give a broader look at Timmy's accommodations today. He had a rougher night - fluid build up on lungs a little, oxygen sats dropping below 80 percent, so he didn't rest very well to start the night. They increased his diuretic and oxygen, and lowered their expectation of oxygen saturation down to 75 and he has been doing better the rest of the night/morning.

Waiting for answers? Well, today cardiologists from Buffalo,Rochester, and Syracuse will be discussing all Timmy's information and deciding on a new course of action. (The one including a November 3 surgery has been scrapped) There are rumors of a surgery this week, but we won't know the updated plan until later today.

We have had excellent care for Timmy (and us, as well) while here. We have to just mention a few of the providers: Drs. Porter, Townsend, and Eastberg, and Jill, Alana, Nicole, Megan, Amy, Julie, Morgan, Katie, Daniella, Kate, and Erin have been some of the awesome caregivers that Timmy (and us) have had.

The staff at the Ronald McDonald House in the hospital have been great as well. Always going above and beyond.

And all our support back home has been incredible.

For going through a tough time, we have certainly been blessed by God beyond measure.

We hope to have an update later today.

Wednesday, September 28, 2016

Moving around

Well, today we have been moved to the other end of the hospital. We are now awaiting Timmy's new, temporary room in the step down unit of the new children's hospital. He will be staying here until they decide to do surgery. At this point we don't know when or what surgery they might do, but they should be deciding tomorrow.

Timmy seems to be gaining strength and is more alert, for which we are very thankful for God's goodness in.
There is a possibility of surgery happening this week, but there are just rumors at this point. We appreciate your continued prayers.
Pray that: God would be glorified
                   Strength for Timmy and Jen
                   Wisdom for decisions
                   Opportunities to minister to other families here
                   The other kids at home and grandma and grandpa

Kevin and Jennifer

Tuesday, September 27, 2016

Needing more food.

This looks like a very serious picture but he is doing better today a little. The swaddling and that is to keep his temperature higher (less calorie need to stay warm) and they have added an ng tube to be able to track his feeding better. Food is fed through the tube in a metered fashion (breast milk, supplemented with formula  needed for volume)
It sounds like decisions might be made concerning his care on Thursday when the doctors conference again.  The current likely path would include 3 surgeries spanning the next 4 years of his life. At this point the possibilities are still many.
Not much new news, but we are happy to have him look better.

Monday, September 26, 2016

Guests at the ICU

Quick post from my Kindle.
Tests came back: electrolytes are fine
         Timmy is not anemic
         Oxygen levels were low
         Heart is enlarged, causing more leakage, causing the heart to work harder

Current plan - increase water 'pill', try to let heart shrink a little, and figure out the next step. Too many options to list at this point. More answers tomorrow.

Admitted to pediatric cardiac ICU at Golisano in Rochester.

We hope to know more tomorrow, but are grateful for the incredible levels of care Timmy is getting.

Change of Plans?

Well, just a quick update this morning. Timmy has not been eating really well, so Jen has been dropper feeding him milk that she has pumped to try to keep his strength up. Yesterday didn't go very well, and we figured we would give it overnight to see if Timmy's eating would improve. This morning seems just as rough on the feeding side if not a little rougher, so we called the cardiologist.

Long story short - The cardiologist would like to have him observed in a hospital setting, preferably the hospital where surgery will be. So we are headed to Strong's in Rochester this morning to have Timmy observed, maybe a feeding line, maybe a surgery. Those decisions will be made by the Doctors on staff and the cardiac surgeon who is scheduled to do surgery in November.

Prayers are appreciated, we'll try to keep you posted.

Saturday, September 24, 2016

The Naturalness of Growth

I've always enjoyed the growth of my children. Way back to when I was a youth pastor and we had just welcomed our first son into the world a teen from the youth group came up to me and said "Just wait until the terrible twos!" I informed the teen that "2 year olds do 2 year old things and teenagers do teenager things, the key is to respond to bad behavior appropriately in any age and enjoy the child at the age they are." He never mentioned the terrible twos again.

I've often heard people say "I just wish they could stay this tiny forever." It has always struck me as a weird thing to say, but now the unnaturalness of the request has become more obvious. At 5 months old, Timmy is still smaller than some of our children were at birth. He is right around the same size as he was 2 months ago. He is beautiful, but this is unnatural.

We are told that once heart surgery is complete, Timmy will take off in growth and gain ground quickly. We are very glad for medical professionals who have walked his road before and are familiar with the abilities of science and technology as it pertains to heart surgery. We are also glad for a God who has knit Timmy together and, even though this seems very unnatural, has not made a mistake with our son.

It just impresses me regularly that growth of living things is natural, even expected. And when it doesn't happen, it should feel odd.

Tuesday, September 20, 2016

With My Whole Heart

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

Surgery is over 6 weeks off (at least on the calendar) yet preparations continue to be made around our house. Gear and supplies are being gathered for "the trip" to the hospital, preparations are being made for school for the next couple of months so that some work may continue, lists are being made and checked off, things that normally happen later in the year are being scheduled and accomplished sooner, and we are slowly working on our mental preparedness.

You would think with almost 5 months of living with an infant with a congenital heart defect, that we would mentally be prepared just fine. Having a date for surgery has helped in settling my mind in terms of no longer finishing every plan with an unspoken "depending on when surgery is" to temper it. Having a plan gives a goal to aim for, a date when things need to be done. But the questions and uncertainty still give pause to being fully prepared.

We have adopted Psalm 9:1 as a theme for us leading up to Timmy's surgery. A needed theme, a required reminder of what our purpose is in this, as well as our goal for Timmy. Our prayer is that his heart will be made whole and that he will one day praise God with his whole heart. We also want to make it our prayer that we will praise God with our whole hearts. That we will recognize opportunities to praise God, to lift Him up, to give Him the glory! Sometimes, down in the trenches, it is hard to remember. I guess it is a good thing that we have scripture to help us out with that. 

We are praising God that Timmy seems to be gaining ground in his weight a little. He seems to be eating well for the most part. And he is a joy to hold and to look at. Just ask Abby.

Saturday, September 17, 2016

A Little Anxiety With a Good Resolution

Timmy says: "Good morning!"
 We are glad Timmy is back to his normal self this morning. He had us a little concerned yesterday when his feet were quite swollen. Timmy is still quite tiny so the swelling in his feet may not look like much, but there was an good deal of excess in his feet, which never sounds like a good thing when dealing with heart issues.

The Cardiologist was called, and he let us know to keep an eye on it, keep an eye out for any other odd symptoms and to let him know anything out of the ordinary. Not quite the reassurance of "That is perfectly normal" that we had hoped for, but still much better than the "Get him up here immediately" that we hope to never hear. The cardiologist said that as long as the swelling goes down, and isn't an ongoing problem, he would prefer to have him at home as long as possible. If the need comes to call him up to Buffalo, they would probably not be able to release him home until surgery. It gives us a new reason to hope to never hear "Get him up here immediately," and we are thankful that the swelling has gone down and no other symptoms have popped up.

The opportunity for prayer is pretty clear, but to make it overly obvious, here is the current "Greatest Hits" list:
  •       To stay well enough to stay at home until the surgery in November
  •       To continue to eat well
  •       For his heart to strengthen and grow (Especially the right ventricle) 
  •       To gain weight to be able to tolerate surgery better
  •       For strength and rest needed for Jen as she cares for Timmy

Thanks for checking in and we appreciate your prayers on our behalf!

Tuesday, September 13, 2016

We Have a Date!

Today's update is that we have a date for surgery. They called us today to let us know that the surgery is scheduled for November 3rd in Rochester.

7 weeks off brings mixed feelings. 7 weeks to be able to plan and prepare is a blessing. 7 weeks of letting Timmy's heart to grow bigger to be prepared for surgery. But 7 weeks seems like a long time knowing how Timmy is struggling and has not been gaining weight.

So the opportunity to pray is to pray that the seven weeks means seven weeks of growth for Timmy. Hopefully physical growth with weight gain, but most importantly, a growth in the heart muscle to be able to tolerate the full surgery. The surgery scheduled is the Arterial banding, but the surgeon will do the full repair if he feels he can when he gets in there. We would love to have 1 surgery instead of 2, but whatever it takes to get Timmy better will be what is right.

Thanks for praying.

Sunday, September 11, 2016

Timmy's Heart Blog Intro.

In trying to make communication easier with all interested parties, we have started a new Facebook page and a new blog. The hope is that we will be able to post to the Blog and have it update the Facebook page within minutes. It is also set up to email some family members who are not on social media. I believe you are also able to subscribe to posts to have them emailed to you if you so choose. Maybe I am just finding busy work to fill in until the surgery, but hopefully I am just making it easier to get prayer support as it is needed without spending all day on the phone or computer.