Photos from around the house

Two Steps Forward, One Step Back

We just got home from U of M after a long day of tests. To quote our cardiologist, "It looks like two steps forward and one step back." The positives are that Grant's veins do not seem to be narrowing (this happens sometimes after surgery and then another surgery is required), and his heart seems to be working great! So, he can come off oxygen all together. No more tape on his face and no more wrestling him at night to put on his oxygen canula.

The not so great news is that his lungs look worse than last time. The doctor put us on two medications in hopes that they help his lungs dry up. I guess that means that they are wet, but I didn't ask enough questions... So, he's giving us 12 weeks on these new meds to give his lungs a chance to heal on their own. If they don't, then we see a lung specialist. The major challenge with the medications is that they are diuretics, which means they drain the fluid from his body. As a result, it is easier to get dehydrated. That can be somewhat of a challenge for us because of Grant's eating issues.

The doctor did give us the go-ahead to fly to Florida. Grant will have to be on oxygen on the airplane because his lungs can't adapt to the altitude yet. I have also purchased seat covers, clothing covers, face masks and various other germ protectors. :) We'll be sure to take a picture of the germ patrol and put it on the blog so you can all have a laugh or two.

Specific things to pray for:
1. That Grant's lungs would heal completely.
2. That Grant would learn how to eat while awake.
3. That Grant would be protected from germs and lung problems while on the airplane.
4. That Jim and I would hear God, so that if He tells us not to go to Florida for some reason that He can see and we cannot, we would listen instead of getting to the beach at any cost...(which is very tempting at this point :) )

Despite all the poking and prodding, Grant smiled and laughed all day (and drank both his bottles) and brought smiles to all his old nurses who said that he is why they do what they do. We're feeling thankful.

The Big Day

We're off to Ann Arbor in a little bit for Grant's big day of tests. I'm feeling nervous because I want so badly them to tell us that Grant is totally healed. Please pray for all the details today, especially that Grant would eat while we are there. Because right now he only eats while wrapped tightly, sleeping in his cradle, which is tilted up at a 45 degree angle. I'm hoping and praying that he will eat in waiting rooms, in the car, in my arms etc. We'll email when we return with the results.

Ankle update

Just wanted to let all of you know who have been praying for my sprained ankle that it is healing really quickly. Much quicker than the doctor expected. I'm still in a splint and trying to stay off it, but the pain is much less. Keep praying. I'm hoping to be fully recovered before we have to walk miles around the hospital on Thursday for all Grant's tests.

New Formula

Grant has had a great 24 hours. At the suggestion of another TAPVR mom, we switched to a formula that has rice starch mixed in already. Because it is thicker, the theory is that it is heavier and should stay in the stomach and not reflux. So far he is taking it well (asleep) and sleeping for longer periods at a time. (Up until now Grant's longest nap during the day was around 40 minutes, and that was rare.) But, today he took an hour and a half nap and seems really happy. The only problem is that after a long nap he's not tired again for a while and thus won't eat. So, we continue with our trial and error.

Grant has a really big appointment at U of M this coming Thursday. They will be running lots of tests on his heart, lungs etc. Depending on how things look on Thursday they could do anything from take him off all medications and oxygen (best case scenario) to sending us to a lung specialist (worst case). We are very optimistic and if all is well we hope to join our family in Florida for Easter!

Good News/Bad News Part 2

Well,the good news is that Grant is taking the bottle from me again. (Still, while asleep.) The bad news is that I just got back from urgent care and it looks like I sprained my ankle pretty badly. I'm in a splint, on crutches and have to stay off it. I'm going to see a specialist next week. When I just called Jim to tell him he said all we can do right now is laugh. So, that is what we are trying to do....

Grant discovers his feet

Good News/ Bad News

Well...the good news is that Grant is taking a bottle again (still while sleeping though). The bad news- he prefers to take it from grandma. The good news- grandma lives 2 miles away. The bad news- she doesn't sleep over. :) This is not a practical solution in the long run, but right now I am counting my blessings that my mom is willing and able to help me in such a huge way.

Grant's rollarcoaster

Grant did end up eating yesterday- for grandma. He still has yet to take a bottle from me in a couple of days. He refused bottles all night again. Please continue to pray for healing and wisdom. (and sleep!)

prayer alert

It has been since 2pm yesterday afternoon that Grant took his bottle. This is getting serious. We're exhausted, and Grant is very worked up and hungry. Please pray.

Grant vs. the bottle

We went back to the GI doctor today because Grant is still not enjoying his bottle. (Putting it mildly!) He switched his acid reflux medicine again (this is our 4th try). We still think it is mostly psychological.

This little game of "tricking" Grant into eating is getting tiring for Jim and me. I just tried for an hour switching back and forth between pacifier and then the bottle when I thought he was asleep, but he caught on every time and starting kicking and screaming when the milk hit his tongue. So, I gave up for now and just let him sleep, which means he'll wake up hungry and wide awake. Those are the hardest moments because there is nothing we can do. But, sometimes it is what I have to do to stay sane.

The GI doctor told us that we can start to try solids in 6 weeks and maybe Grant will like them better than the bottle. That would be awesome, but I honestly hope he gets over his bottle thing before then.

On a positive note, a wonderful friend of my mom's already made us a weighted blanket! I can't wait to try it out on Grant tonight.

Loving Grant

Ways to relax Grant

Our occupational therapist is teaching me several ways to relax Grant. We've been doing infant massage twice a day and he seems to calm down a bit during that. But, today she discovered something that worked really well to calm Grant down- a weighted blanket. When the weighted blanket is placed on Grant from the chest down his behavior totally changes and he instantly relaxes. Thank you to those who have offered to make a weighted blanket for us. I know it will be a blessing to Grant!

Goals for Grant

It has been about a month now that we've had an occupational therapist coming to the house twice a week to work with Grant. During this time she's been working with me on Grant's feedings and getting to know him. Today she came up with three goals for Grant that we would love your prayers for:

1. That Grant would take his bottle while awake. (He still only eats while sleeping.)

2. That he would take his bottle while in our arms. Right now he prefers to be fed in the crib. Overall, she would like to see him enjoy his time being held. Currently, he does not relax enough in our arms to fall asleep or just be enjoy it like "normal" kids do. This is probably a result of not being held for the first 2 weeks of life.

3. That Grant would be able to "relax." Right now his hands and feet are ALWAYS moving and he needs to constantly be stimulated to be happy. He doesn't nap for more than 20 minutes during the day or settle down at all. This lack of sleep and lack of being able to relax needs to change for Grant's body to not feel anxiety.

Thanks for praying.

Prayers Answered

Thank you so much for praying! Grant is doing much better!

Wheezing

Please pray for Grant's health. Yesterday he started coughing and making a weird wheezing sound. We wrote the coughing off as acid reflux and the wheezing as snot. Today he threw up twice and is not eating well. His cough and wheezing continue. I kept hoping it would go away and didn't deal with it until after the doctor's office was closed. After speaking with the cardiologist at U of M he thinks we are fine to wait until morning to take Grant in as long as we monitor his oxygen levels etc. throughout the night.

Thank you TAPVR parents

I recently joined a few support groups for parents of children with heart defects. My name must have been given out today because I've received an outpouring of emails, phone calls and blog comments. I am sitting here with tears pouring down my face after reading the comments from my last blog. Even on our best days (like today) I still feel so alone and different than other parents. But, after reading the comments I feel such a relief. Others have gone before me and made it through. I look forward to talking to each of you TAPVR moms and learning from your experience. Thank you for reaching out to me. I just read the following poem on the website of another TAPVR parent and it really spoke to me, so here it is:


I have been your mother...
Long before you came...
When I first heard your heartbeat...
And thought about your name...
When I looked up at a monitor...
And watched you move your hands...
I thought...hey I'm your mommy...
And I started making plans....

I didn't plan for anything....
Except...the life you'd live....
The cute outfits we'd dress you in...
And all the love we'd give...
But life..it holds no promises...
This wisdom... I impart...
Life's most important lessons...
Are those learned from the heart...

Now everyday...when I wake up...
I say a little prayer...
Lord, watch over my child today...
And let him know your there.
Give me the chance to show him...
What it means to be part...
Of this world we live in...

This is a mother's heart.

I watch my child growing up...
Each day brings something new...
Most people can't imagine...
All the things he has been through...
The scar that runs right down his chest...
Can't easily be missed...
I can no longer doubt it...
Miracles exist...
I have loved this child Lord...
Right from the very start...
And I will remain hopeful...

This is a mother's heart.

Sometimes... it is not easy...
And faith becomes my guide...
For we live in the present...
Hoping... time's on our side...
They tell me that my child is...
A "medical pioneer..."
But surely these are not the words...
A mother hopes to hear...
Most mother's envision that their child...
Will be kind, and successful, and smart...
I picture a thousand tomorrows...

This is a mother's heart.

I see him playing in the park...
And swimming in the pool...
I see him grasping my hands tight...
On his first day of school.
I see him chasing fireflies...
on a starry summer night...
I see his life before me...
He is precious in God's sight...
As I imagine all these things...
My mind can almost chart...
The well-laid plans I have for him...

This is a mother's heart.

And if the time should ever come...
That I must let him go...
Please help me to accept the fact...
That I can't watch him grow...
My blessing...my sweet miracle...
His life...like precious art...
Each memory...a brush stroke....
on the canvas of my heart.

I have been his mother...
Right from the very start...
Nothing can ever break this bond...
This is a mother's heart.

Author: Stephanie Husted

Our best day yet

We had such a great day today! It began at 1:30am when Jim rolled over and said, "Did you feed him?" (We have still been getting up every 3 hours in the night to feed Grant due to calorie issues and it had been 5!) We must have accidently turned our alarms off. Even though we'll have to wait a few more weeks until Grant gains some weight to do this again, it felt great to know that Grant is capable of sleeping 5 hours in a row and it sure was a treat for the two of us!

We spent the morning putting together our jogging stroller, then all three of us bundled up and went for a jog together. When we got back Grant took half of a bottle fully awake. We are thanking God that Grant is getting better every day!

Just chillin'

The twilight zone

Well, we've figured out how to feed Grant. We have to catch him while he is in the "twilight zone" as we call it. It is about 5 minutes before he falls asleep. He is too tired to fight the bottle and he'll chug it down. We know this is not a long term solution, but at least for now he is getting his needed calories. We are still thinking that his whole problem is psychological because he eats so well while sleeping and puts up such a fight while awake. I love our occupational therapist and one of her two days each week is going to be spent on teaching Grant to associate eating with positive things. She comes today at 4pm.

Battlefield of the Mind

Our feeding experiences with Grant are up and down--some are easy (15 minutes of peaceful bliss) and some are really tough (2 hour marathon last night). Remember our marching orders from the doctor--he must eat in order to heal! So we have to do what it takes to get him to eat beyond what we might normally do if he weren't recovering from his surgery.

The good news is that his behavior has been markedly different since the breakthrough a week ago (see March 1st & 2nd posts). It seems to us that his body is indeed all better--he isn't in pain when he eats, the acid reflux is gone (or in-check) and he isn't throwing up at all. That has been consistent since last week. However...it appears that his mind hasn't yet recovered--he has been conditioned to believe that eating causes him pain, even though it no longer does. So when he is awake and alert, feeding is a war 7 or 8 times out of 10. When he is real sleepy and doesn't realize the bottle is in his mouth, he calmly chugs his full feeding lickity-split.

So please pray that Grant would un-learn his bottle beliefs so he could begin to eat in peace.

Thanks for all of your continued support and prayers! We think we're in the final rounds of this battle and we are so appreciative of you for sticking with us the past 3 months.

Grant's feedings

We're having some trouble with Grant and his feedings again. I'm too tired to blog it all, but please be praying for us. We just got back from the GI doctor and Grant has dropped to the 25 percentile in weight. We have a new medication and some new formula to try.

Getting stronger!

12 week picture

God is Good

Grant does not seem to be in any pain while feeding. God is so awesome. He really did heal Grant!

Canceled scope

Yesterday a friend called up and specifically told me to put my hand on Grant and declare him healed. He was asleep in his swing, so I got off the phone and went over and did that. When he woke up I got out a bottle, ready for a food fight like we've been having all week. But, for the first time in so long Grant took the bottle in my arms (he usually only lets us feed him in his crib), peacefully and happily. It was awesome. For his next 5 feeds Grant drank his bottle with relative ease.

So, early this morning I paged the GI doctor and told him what happened. He made the decision to cancel the scope. It was so exciting. Grant was doing great. Then, as the day progressed Grant started to refuse the bottle again and was eating less than half of what he did yesterday.

We are very confused by this and are not sure what God is up to. But, we feel peaceful that Grant did not have the scope today.