First day of solids

Grant and Grandpa Koss

Grant, Lindsay and soon-to-be Uncle Josh

Sleep and solids

Grant is catching on to our new sleep plan....kind of. Last night he slept from 9-3am straight! But, then at 3am he thought his day was supposed to start and has been wide eyed ever since! Doesn't this kid need sleep?!

One amazing thing that happened is that at 3am Grant took his bottle awake! He has not done this in months. It was very exciting. Please pray that he is healed and will continue to eat while awake.

Another thing we'd love your prayers for is eating solids. Grant is happily opening his mouth when the food comes near him, which is a great sign, but doesn't have a great suck/swallow because most of the time that he's swallowing food he's asleep (and it's reflexive). Our OT keeps saying, "It's not too bad," but he needs to learn some tongue control. He actually prefers to hold the spoon and feed himself- which consists of sometimes making to his mouth and other times hitting himself in the nose. It's not the most efficient way of eating, but it makes for some great pictures. (To be posted soon.)

Snuggles and bathtubs

Grant is making improvements in the area of his sensory struggles. For the longest time he didn't like to be held. Now he loves to snuggle and be rocked to sleep! He also used to really not like water. We had been doing sponge baths only until recently because he'd freak out when we put him in his baby bathtub. But, in Florida I started taking baths with him. (The pool was too germy, but we were in Florida, so we had to go swimming every day. :) )He really likes it now, especially when I leave the water running so he can run his hands under the spout and feel the water pressure. He can amuse himself with that until we both turn into prunes. Yesterday Jim sweetly asked me, "Are you always going to take baths with Grant, or do you think he can start going in the tub without you?" I think he was picturing a 13 year old boy being forced to bathe with his mom. :)

Back to life in Michigan

Grant is starting to eat more food again and do better at home now that we are settling into our routine again. I guess he must not like transitions or something. :)

I talked to the doctor yesterday about switching the times for Grant's medication so that Jim and I can get more sleep. Right now he takes 1 out of his 6 meds at 2am and lately we've been having to work pretty hard at waking him up to get him to take it. And then we have to work pretty hard to get him back to sleep so that he can eat while he sleeps. (Okay, I need to be honest- Jim is the one who does this feeding, not me...) Needless to say, that takes quite a chunk out of the middle of the night. So, we got our doctor's permission to switch the schedule to give him that medication at 8pm, 4am and noon. Grant tends to wake up for the day at 4:30am, so we can probably give it to him then. He is pretty close to getting enough calories during the day to make this possible. It would surely change all of our lives! We tried it for the first time last night and he still was up from midnight to 2am and then again a few hours later, so we're off to a rough start. But, at least we have permission to head in the right direction. Our prayer now is that Grant would sleep from 8pm-4:30am straight. (And maybe even go back to bed after his 4/4:30am meds!) :)

We're Home

We made it home from Florida and Jim just got home from his business trip in LA. Grant grew almost 2 inches while we were gone and gained over a pound. Florida was really good for him!

Since we've been back (only 2 days) Grant has been eating only half of what he ate in Florida. I'm not sure what all the variables are, but even in his sleep he is refusing the bottle again. We started solids (rice cereal and applesauce) last night under the guidance of our occupational therapist. She said he did okay, but has some work to do in terms of tongue control and swallowing that he didn't learn because of struggling with the bottle. Please pray that Grant would take his bottle again and would quickly take to solids.

We're missing grandma and grandpa Niedzinski already and counting the days until they come to visit in June!

Grant's recent puke (on Jim)!

Pictures from Koss side visit

Pictures from Niedzinski side visit

Staying in Florida

We have arrived safely at G and G Niedzinski's. There are so many things so see and do here and Grant is being adored by his grandparents that don't get to see him as often. Tonight Jim and I went out on our longest date ever tonight (since Grant)- dinner and a movie! We're really enjoying our stay. Grant has been doing really well being able to get outdoors and being loved on by so many people. So, Grant and I are staying! Just a few extra days while Jim is in LA for business anyway. (He leaves in the morning.)

A few prayer requests:

1. That Grant would be calmer in the night and sleep for longer stretches. (He's eating more calories during the day now, which means less eating at night. But, lately he's been waking up hyper every couple of hours.)
2. That Grant would eat while awake.
3. That Grant would remain healthy and I would remain kind to all the people that try to touch him now that we're out and about. :)
4. That my flight would not be delayed and the trip back to Michigan alone with Grant would be extra smooth.

Grant loves Florida!

Our plane ride to Florida went relatively smoothly. Aside from hooking him up to the oxygen Grant did not seem to mind the flight. For a portion of the trip we put our tray table down (covered with a germ protector, of course)and put Grant on his back, so he could bat toys we held over his head. The three of us even managed to fall asleep for a bit all snuggled together.

You probably won't see a picture of Grant in his sunglasses on the blog because he hates them. :) The first day Jim brought him out to the beach with his bathing suit, sunglasses and hat, and Grant screamed and kicked the whole time. We quickly figured out that the beach is not his favorite place to be. But, he loves just about everything else in Florida. He loves to take stroller rides and look at everything around him. He is facinated by people and animals, especially dogs! They have live music playing much of the time and he loves to sit and stare at the guitar player. He is such a curious kid and I didn't realize how much only seeing our house and the hospital the last 4 months affected both of us!

Tomorrow we leave my parents' place and head to Jim's parents, four hours north.

We're going to Florida!

The antibiotics have kicked in and I'm finally starting to feel better. Grant didn't catch the bug, so we're going to go to Florida for Easter. We'll get to be with both my family and Jim's family. What a treat! We'll have someone staying at our house to sign for Grant's medical supply pick up and deliveries. We'll probably have internet access in Florida so I'll try to post a picture of the little guy in his sunglasses.

Please pray for our airplane ride and that we'd all stay healthy. (Grant will be on oxygen for the air portion of our trip.) I'm so excited to get away (and have others helping with Grant around the clock. :) Thanks mom and dad Koss and Niedzinski!)

It's strep! :(

I just got back from the doctor and I have strep throat. I have to stay away from Grant for the next 24 hours to ensure he doesn't get it. So, I am going to stay at someone else's house. Please pray for my mom and Jim as they care for Grant while I am gone.

We're pooped

Grant met his caloric goal for the second time ever yesterday! It felt great to know that he got all the nutrients that he needs to grow and gain weight. But, I have to say that feeding Grant around the clock like this for 16 weeks now is so wearing. Unfortunately, we can't sleep when Grant sleeps, because that is when we are feeding him. We really need him to turn the corner and eat when he's awake so that he can sleep at night and nap during the day.

We're both pretty darn exhausted and I woke up with a terrible sore throat. My mom is headed over so I can go to the doctor. Please pray for protection for Grant and Jim from sickness and for whatever I have to go away quickly. Thanks.

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.

Upper GI work up

Well, the medicine we started yesterday for the esophagus spasms didn't work. Grant had a miserable night. So, this morning we went to Beaumont for an upper GI work up. They watched food travel its way through Grants body. They didn't find anything wrong, so tomorrow at 8am he will be scoped and get a biopsy or two taken from his insides. Please pray:
1. That Grant will recover quickly from this proceedure
2. That they can figure out what is wrong with Grant
3. That Jim and I stay healthy and hopeful

A possible fix

We just got back from the GI doctor. He thinks Grant has one of two things going on. Either Grant is having spasms of the esophogus or he has ulcers on his esophogus. The doctor is going to treat him for the spasms first and see if it helps. If it doesn't (the medicine should start working immediately), then the doctor will have to scope him, which means Grant will be in a lot of pain for 48 hours afterwards.

The danger in this medicine is that they don't like to give it to heart patients because it speeds up the heart rate. Please pray for Grant that his body takes to this medicine.

The bottle battle

Today was our worst day with the bottle yet. Grant is back to screaming when even his "favorite" bottle comes near him. I tried feeding him for over an hour and now Jim has put in another hour. At this point we would normally call it quits and try again later, but he's had so few calories today we feel like we should keep going so he stays hydrated. Please pray for us and that God would grant us another miracle.

11 week pictures

In Need of a Bottle Breakthrough

Please pray that Grant would take his bottle with ease. It's been 2 weeks now that his feeding tube has been out and although Grant's skills have improved, it is still a daily battle. I long to hold my child in my arms, have him look up and me and peacefully suck on his bottle. This seems like such a minor thing, but it would make such a difference in our daily lives, both physically and emotionally.

As I petition this request to God I must also thank him for the wonders He has already done in Grant. I looked up a blog yesterday of a sweet infant we met while in the hospital, who was supposed to go home this week, but she died the other day of an infection. My heart breaks for little Sophia's family. Please pray for them. And thank God with me for healing Grant in all the ways He has already. In the midst of the daily struggle to feed Grant pray that I continue to have a greatful heart.

Feeling sick

I have been fighting a sore throat for days now. I woke up today feeling a lot worse. Please pray that I would get well quickly.

Medication update

I spoke with Grant's cardiologist today to update him on Grant's current formula intake as it relates to the medication we temporarily stopped. Grant is now up to about 500ml in a 24 hour period, where as they want him to be over 700. (Can you believe just a week ago he was only eating something like 180 in a day?! He is totally improving!)

The doctor asked a bunch of questions, including how Grant's breathing is. Because we have the machine that monitors his beats per minute at home I could tell him exactly how Grant's breathing was. (To put this in perspective: When Grant came home from the hospital his heart beat about 170 times per minute. Now it is down to 140.) So, Grant's heart today is not having to work as hard as it used to. The doctor thinks that possibly the medication was making him dehydrated and thus causing his heart to work harder. So, the conclusion is that we do not have to put Grant back on the medication (unless he starts having breathing problems). The way that God works is so cool. We never would have known this if Grant took the bottle right away and did not start to get dehydrated, which then caused us to stop the meds which drain fluid from his body.

So, the good news is that we have two less medications to give Grant, his heart appears to be doing better and he is still in the 50th percentile in terms of weight, even though he lost a pound this past week.

Current prayer requests:
1. That Grant would improve his feeding skills
2. That Grant would take his bottle from someone besides mommy and daddy so we can have a little break from our marathon feeds. :)
3. That Grant's lungs would heal completely.

A visit from Grandma Niedzinski

Jim's flew in to help us for a few days. Perfect timing.

One happy baby

Grant is doing so much better. It is obvious that his throat is healing because he is smiling a ton these days.

His bottle skills are improving, but he still has a way to go. Each feeding takes 1-2 hours and we have to feed him every 3 hours, even in the middle of the night.

Please pray for endurance for us and that Grant would pick up the pace in his feeds. He's still not up to his recommended amount of formula, so he's not gaining weight like the doctors would like, but he's not losing weight anymore either. Because he's still not eating enough, he's not back on all his meds. The doctor didn't want him off longer than 48 hours and now it's been a week, so I have a call in to the cardiologist to ask him what we should do.

Grant continues to do well off oxygen during the day. :)

Thank you to all of you who continue to bring meals, grocery shop, and help with other various tasks. This really allows us to focus on feeding Grant. We couldn't do this without you.

Our First Bottle Victory

Grant drank his whole bottle for the first time yesterday!!! It was my coolest mommy moment ever. It took over an hour and he wasn't happy about it, but he did it. We used our special new Haberman bottle that allows us to control the flow and Grant seems to like that better.

Since then he has not had a full bottle. The OT thinks he kind of lost his suck because of all that has happened. She says he has developed a floppy tongue, that would rather play with the nipple and let the formula dribble down his face. So, we're still syringing about half the bottle. But, I am hopeful and can see the light at the end of the tunnel!

My throat is starting to hurt, so please pray that Jim and I stay healthy in the midst of this marathon.

Our tubeless baby

Here is our first picture of Grant without his feeding tube and oxygen canula! The little circles you see near his ears are where we attach the oxygen tubes at night. We are so thankful that God has brought Grant so far!

Still struggling to eat

The OT (occupational therapist) came yesterday afternoon and was clear about one thing- Grant must learn to drink from his bottle again. Using the syringe or some other method will not teach him the skills necessary to eat food in the long run. Plus, she said he has a good breath-suck-swallow. Basically, he has potential. But, when she tried to feed him by bottle, she saw the problem that we are having. She still wants us to try the bottle every time dispite his protests.

At this point she said we could finish the bottle any way necessary (syringe), but she said when we are ready for "tough love" (only the bottle) then we should get him hooked up to an IV and just do the bottle. This involves nursing care, possibly hospitals, and a lot of screaming. I'm still hoping he catches on and we don't have to go that route. She had one other possibility- a special, really expensive bottle. So, my sweet mom drove all over southeast Michigan last night to find this rare bottle. We're going to try it this morning.

Grant is still a little dehydrated. (He falls asleep by the end of the syringe game so we can't always get his full feeding in.) He has lost some weight and he's still off two of his meds that he needs to get back on ASAP. Please pray for endurance for Jim and me as we enter this new phase. And continue to pray that Grant would like his bottle once again.

He's still doing great off the oxygen during the day. (We have to keep some tape on his head to attach the oxygen canula at night.) I'll post some pictures later of our child without tubes for the first time!

The syringe game

I feel more hopeful today. Yesterday God sent friends and nurses to help me when I was most discouraged and felt like I couldn't do this any longer. But, we are getting the hang of feeding Grant with the syringe and he actually likes it. He kind of thinks it is a game. We shake a little toy over his head, then he smiles, then we squirt a drop into his mouth. It does take a long time, but at least he's getting his calories. (Still only 60 cc's, when he should get 85, but he's not dehydrated.) It is just a temporary solution because we can't start up 2 of his meds again until he can eat more. The occupational therapist should arrive soon and will have some other ideas for us.

GI update

We just got back from the GI doctor. The good news is that Grant's throat seems to be healing and he doesn't scream from pain when formula goes down. The reason we know this is because when we use a syringe to shoot the formula down he doesn't cry. He actually licks his lips sometimes.

The bad news is that Grant continues to scream when we try to put a bottle in his mouth. He still associates it with pain. Unfortunately, he has started to associate me with pain as well and gets unhappy when I come near him because he knows I am going to try to feed him. This is extremely hard for me emotionally. Thankfully, some friends are going to come today to help try to feed Grant.

The only way he's really eating much by now is with a syringe. Sometimes it works, other times he just spits it back out. Regardless, it is a long process to even get a little bit down. We have an occupational therapist coming tomorrow to try to work with Grant to get him to like the bottle again. I'm not sure how it works, but that's her job.

So, please pray:
1. That Grant starts to like the bottle
2. That Grant starts to like me again
3. That Grant does not get dehyrated as we feed him by syringe, little by little

6pm update

Grant is drinking a bit from his bottle, but not enough to sustain him. Jim came home from work early and has been working with Grant for the last hour, trying to get him to eat.

We talked to Grant's cardiologist today and he advised us to stop 2 of Grant's medications that are used to drain fluid from the body and would cause Grant to get dehydrated faster. However, this is a very short term solution because of the delicate fluid balance in Grant's body.

We will continue to try to feed Grant throughout the night and will see the GI doctor at 9am tomorrow morning.

Back from the doc

We just got back from the GI doctor. Grant is 1.9% dehydrated. They will allow him to be up to 5% dehydrated before they check him into the hospital. They are seeing us again tomorrow morning to make sure he's not dehydrated.

I'm feeling tired and weary. Grant is hungry and frustrated. Please pray for God's strength for me as I try to do what is best for his little body. Time to go feed...

Overnight update

It's 6:30am and in the last 24 hours, Grant has had 200 cc's by mouth or medicine dropper. (In a 24 hour period he would normally have had 680 cc's.) So, he's tired and cranky and can't figure out why we won't just feed him like he's used to. But, he's making progress. Please keep praying that his throat heals quickly and he enjoys the bottle more. We're headed to see the GI doctor in an hour.

5pm update

So far today Grant has had 55 cc's out of his needed 100. He has also thrown up about 20. He took some by bottle and some by using a medicine dropper, giving him one cc at a time. I just talked to his doctor and he said that he wants to try to keep Grant out of the hospital because of all the viruses going around. So, as long as he's eating something we're going to try to feed him little bits throughout the night to keep him hydrated. The doctor is convinced that if we can just keep him hydrated while his throat heals then he'll be taking his bottle within a few days. We're seeing the doctor at 8am tomorrow morning so he can make sure for himself that Grant is hydrated enough.

Line in the Sand

Funny that Shannon wrote this morning about yanking tape off quickly when it is in our best interest...because I think that is happening in a way with Grant and his feeding problems.

We have a trilemma: Grant must eat for his heart and lungs to heal; and he needs to eat more than he has the energy to consume because he is recovering from quite a trauma. Furthermore, Grant has digestive issues so he is in pain when he eats. Because of these reasons, he refuses the bottle almost altogether, having learned quickly that a bottle = intense pain (all of this is common for babies who've been through what he has). So, to make sure he gets the nutrients he needs to heal and grow, docs put a feeding tube down his nose. However, the feeding tube only irritates his stomach and acid reflux problems further, thereby increasing his pain and the frequency of his pukes.

Grant threw up blood this morning. Shan got in to see the gut doctor and he drew a line in the sand with Grant--Grant must learn to feed from the bottle now vs. later as the tube is causing too much irritation. Shannon has to try to feed Grant by the bottle every 30 minutes today until Grant drinks a total of 100 cc's or until 5:00 p.m., whichever comes first. If 5 pm rolls around and Grant still hasn't gotten with the program, to the hospital we go to get him hydrated (remember he is on all sorts of diuretics) and to pick the bottle-feeding project up again while there. The hardest part is that Grant screams and thrashes and goes nuts when we try to feed him from the bottle.

Please pray that Grant's stomach, throat and psyche heal completely so that he can eat without the tube.

Please also pray that Shannon can have peace and rest in the midst of the tiring journey.

A lesson I learned from tape

Every couple days we have to change the tape on Grant's face that holds his feeding tube and oxygen canula in place. We've been trying all sorts of tape lately to try to keep his face from getting all torn up. The other day a new kind of tape came in the mail that is supposed to be much gentler on the face, yet should really stick. (Most of the gentle tapes come off after a few hours.) But, in order to put this new stuff on, I had to take the old, really sticky stuff off.

So, I was giving Grant a bath and he was all happy and smiling and I decided that this would be a good time to change his tape, like maybe he wouldn't notice or something. (Wrong!) So, instead of being gentle and taking my time, I just went for it and ripped it off really fast. Well, then the crying began. Not just a little cry, but the kind of cry where tears are flowing but no noise is coming out because he's crying so hard. (All you moms know exactly the cry I'm talking about!) I picked him up and was hugging him and trying to calm him in all the ways I knew how, but he kept crying. I was trying to explain to him that the old tape is bad and the new one that came in the mail will make him feel better in the long run. But, he just kicked and sceamed and looked at me like he hated me.

And then I realized that so often I do this to God. I allow myself to focus on him removing the "bad tape" in my life, instead of trusting that He has something better for me.

The new tape on Grant's face is working well. I'm thankful he held still long enough to let me put it on...

A day in the life of Grant

Tummy troubles

Grant's feeding times seem to be getting worse. He still doesn't like the bottle and screams while we are feeding him through the tube. It takes about 45 minutes to give him his entire feeding through the tube and he is miserable the whole time. He then throws up about half the time. But, soon after the feeding ends he is a very happy baby. This is very frustrating because feeding times have become very stressful for Jim and me. Our next GI doctor appointment is not until Wednesday, but I am going to call on Monday morning and beg to be seen. I think there must be a solution that will make feeding a more pleasant experience for all of us. Please pray that we can get in to the doctor quickly and that God gives him wisdom as to what to try next.

Oxygen trial

Grant has been off oxygen for a few hours now and is doing well! Thanks for praying.

Our 8 week check up

Today we met with Grant's cardiologist at U of M. One positive piece of news was that they want to try Grant off oxygen during the day and keep him hooked up to it at night! I am so excited for Grant to have less tape on his face, and so excited for the freedom to roam the house without tubes. I will have something to monitor Grant's oxygen saturation levels during the day while he is off so that I know if he is doing okay. If he drops below a certain number, I just hook him back up. We can't start this until next week when we get the tool to measure his saturation levels.

The not so good news is that Grant's lungs still look bad. Worse than they should at this point. They are concerned that he might have pulmonary lymphangiectasia. Here is a brief explaination (from google):

Pulmonary Lymphangiectasia is a condition in which there are widespread dilation of the lymphatic channels in the
lungs. This can be a part of generalized lymphangiectasia or a primary pulmonary developmental abnormality. Where
there is no evidence of cardiac disease this condition seems to present either at birth or later in infancy.
The cause of Pulmonary Lymphangiectasia is unknown. The signs of PL can sometimes be seen prenatally, but most
commonly postnatal. Many infants are stillborn. The newborn infants show respiratory distress. The typical presenting symptoms include rapid breathing, and recurrent cough or wheeze. An examination of the patient usually reveals the presence of fine crackles throughout the lungs.Diagnosis of pulmonary lymphangiectasia can be difficult. Although chest x-rays are usually abnormal, the x-rays can reflect fluid in the chest cavity or lung tissue. Chest CT scans can show patchy areas of fluid and over inflation in
PL patients. Most patients who survive through early infancy continue to have respiratory problems (wheeze, recurrent cough, and
pneumonia) in the first several years of life. These patients also seem to have other medical problems
(gastrointestinal reflux) common to patients with chronic lung disease.

Evidence has shown that symptoms improved in most patients after infancy and were notably better by the age of 6
years old. (Some stay on oxygen until they are 5 years of age.) The only treatment is medical support until patient is no longer in need of support. The evidence suggest that primary pulmonary lymphangiectasia does not have as dismal a prognosis as in most cases and clinical findings improve after the first year of life.

So, please pray:
1. That Grant's lungs heal completely and that he doesn't have this rare condition
2. That Grant's body adjusts well to tapering off oxygen
3. That Grant's acid reflux would go away. (still throwing up several times daily)

We go back to U of M in 6 weeks for a slew of tests. They'll decide then if we need to see a lung specialist based on Grant's healing at that point.

A big day tomorrow

Tomorrow we head to U of M for our 8 week post surgery check up. Our biggest miracle prayer request is that Grant's lungs are healthy enough to get off the oxygen. We're also hoping that they'll reduce the number of meds. (Two of his meds are usually only needed for 6 weeks after surgery.)

Grant has thrown up two feedings already today. I have now decided to cover our entire family room with bedsheets. More laundry, but less mess. :) The GI doctor yesterday introduced me to a couple that had an 18 week old who had heart surgery. She was once experiencing the same problems as Grant- hating the bottle, throwing everything up, inflamed insides etc. But, when I walked in to meet them their little girl was holding her own bottle and drinking happily from it. The doctor looked at me and said, "See, he'll be okay." I'm looking forward to that day.

A new formula

Well, we went to the GI doctor again yesterday because Grant is still uncomfortable while eating and throws up about every other feed. Our most recent projectile vomit actually made it over the couch and hit the wall behind it. (A good couple of feet.) The doctor is switching Grant's formula again, to the most basic formula that is pre-digested so Grant's tummy doesn't have to do any work. We really hope that this works and that the insurance will cover it. (It costs about $20,000/year!) The doctor also doubled Grant's dose of prilosec, hoping to get rid of the acid reflux altogether. Right now he thinks that Grant's insides are really inflamed from the tube, the acid and from continuing to throw up. Please pray that this new combination will equal a happy, painfree Grant.

sound asleep

A 8 week old story

We had a great weekend. Grant is still having some GI struggles, and some "I hate the bottle" issues, but at least it doesn't have to do with his heart. We'll find out more about how his lungs are healing at our appointment at U of M on Thursday. They said they probably won't take him off oxygen until he can stay out of the hospital for a while and his pulmonary hypertenstion is better. I'm still praying for a miracle that they'll look at his eco on Thursday and proclaim his lungs healed! I'm having fun watching him giggle as he bats at the toys we hang above him on his activity mat. In some ways I never thought a day like this would come. I'm so thankful.

When my sister-in-law, Jane, was over to help the other day I asked her about his first day of life. She lives in Canton and was the first one on the scene when Grant was life-flighted over to U of M. ( I was still at Beaumont recovering.) Up until this point I didn't have the emotional capacity to ask her what it was like when she saw Grant for the first time. She told me that when she first walked back to see him he had just flatlined and they were reviving him. They hurried her out of the room and she sat in the waiting room for two hours, wondering what had happened to Grant.

Finally the nurse came back and told her he was alive, but they had to do surgery right away. Jane looked at the nurse and said, "But, he's going to be okay, right?" The nurse looked back at her and said, "he's a very sick baby." Meanwhile Jim and I were on our way over to U of M. But, Jane and the other nurses were afraid that we wouldn't make it there in time to see Grant before he died. So, they bought a poleriod camera and were all taking pictures of Grant. Jim and I arrived a few minutes later to give him a kiss before he went into surgery.

I tell this story only so that you can grasp, as I am beginning to, what a miracle Grant's life is. Maybe you have all grasped that already, and I've been too wrapped up in his current problems to see all the awesome things God has already done. Thank you, God, for saving our baby Grant.

Enjoying the Moment

I think yesterday was the best day I've had since Grant was born. He didn't throw up, he didn't scream while being fed (he even took half a bottle by mouth!), he smiled and looked so peaceful when I held him. Aside from the tubes etc. I think this must be what it is like to be a mom of a "normal" baby. As I got in to bed last night it was the first time that I didn't feel scared that Grant was going to die. Every day since he's been born we've had some sort of problem. In many ways it has really kept me from enjoying being a mom because I've been in problem solving mode instead of "enjoy the moment" mode.

In church last week I felt like God was telling me to stop trying so hard and to enjoy Grant. I argued back that this is close to impossible to do with a baby that is always throwing up, screaming in pain or struggling to breathe. But, now I know why God wanted me to do this. It is so much better. I know there will probably be more roadblocks ahead, but for now I am really thankful to be home and enjoying Grant.

Happy to be home

Home Again

We got home from U of M last night. Grant was able to go 24 hours without throwing up, so they had us leave, even though he was still not without pain during feeding. Then, we got home and he threw up his first feeding with us! But, the good news is, he has had 4 feedings since then and kept them down. He is now on Prilosec for his acid reflux and Progestimil for his formula. Hopefully between these two things feeding will soon become a more pleasant experience for Grant. We have an occupational therapist that will come to our house to try to retrain Grant to feed from a bottle or mini cup.

Grant seems to be over his virus. (Unfortunately, he passed it on to my sister-in-law, Jill, who was here over the weekend to help.) His red blood cell count after the transfusion came back higher than it was, but still not as high as a "normal" baby. So, we are continuing to give him iron and praying that he begins to make his own within the next couple of weeks. This should really help with the breathing.

We saw our cardiologist while at the hospital and he said he wants to keep Grant on oxygen longer than originally thought. (We were hoping to get off it at our appointment next week.) But, even though we're still on oxygen, I came home from the hospital with a much happier baby whose heart is not having to work so hard.

Prayer Requests:
1. That Grant stays healthy. No more viruses!
2. That Grant begins to make his own iron.
3. That Grant's lungs continue to improve.
4. That Grant learns to feed orally again.

Thanks for praying, supporting us and feeding us! :)

Still at U of M

We're still at U of M. Grant's color looks better since his transfusion, but we don't have many answers beyond that. He's still not eating from the bottle and is very much in pain most of his waking hours. We've found a lot of things that don't work, but we're still doing trial and error to find out what it will take to make him feel better.

Transfusion complete

Grant just finished getting his blood transfusion. They will continue to closely monitor him to make sure he doesn't spike a fever and that his body reacts well to the blood. It is exciting to think that he won't be anemic anymore and that his heart can stop working so hard.

Assuming all goes well with the transfusion, our next concern is that he still won't take the bottle and is clearly miserable when taking food through his nose tube. The occupational therapist we saw today said that Grant now associates the bottle with extreme pain. Please pray that Grant sees food as enjoyable. We also have the problem that when he gets food through the tube he continues to throw it up. Hence, us ending up in the ER twice for dehydration. Our favorite nurse here at the hospital told us not to leave until Grant keeps his food down for 24 hours. However, we are having trouble actualy getting a GI doctor to our room. Please pray that we can get Grant's reflux under control so he can be out of his misery and we can go home.

We Love Blood Donors

We're back at U of M. Grant developed a fever yesterday, so we went to Beaumont and they transported us to Ann Arbor.

So, the bad news is that Grant has been having difficulties.
The good news is that they have identified the causes:
1. Anemia (low on red blood cells)
2. Virus (his 2nd one in two weeks)

It is also good news that the anemia and virus are not heart-related issues.
But the bad news is that they do negatively affect his heart.

But the good news is that they think they have a solution!

Well, there is no solution to the virus but to let it run it course and to make sure Grant stays hydrated via an IV (he hasn't been able to handle his feedings). So this is fine and he already appears much better today than yesterday.

The anemia is normal for a newborn his age, but Grant doesn't have the reserves to handle it. Red blood cells deliver oxygen to the body...so when the body is anemic it compensates by pumping the heart harder. Ah, therein lies the rub--Grant's heart already works too hard, so the whole thing is too much for him to handle well. So they are doing a blood transfusion this morning. This will flush his body with the red blood cells he needs and will literally give him breathing room to heal. They believe his body will then be able to begin producing enough of his own red blood cells over the next few weeks.

They are optimistic that the transfusion will help him fight off the virus and dramatically improve his strength. So if this works as the believe and hope, Grant could very well begin to steadily improve without any more of these setbacks we've been experiencing.

Please pray that:
1. The blood he receives is not infected or contaminated in any way (estimated 1 in 30,000 have some nasty gunk in it) and that Grant's body accepts it.
2. His body quickly nukes the virus.
3. He begins to eat from his bottle easily and consistently.
4. That his heart and lungs fully heal.

The final bit of good news is that Shannon is doing great--peaceful, trusting, calm and we both slept very well last night. Thanks for everything, everybody!

A trip to the ER

You'll have to excuse this blog if it doesn't make sense. We were in the ER all night and I have not yet slept. Yesterday Grant threw up 5 of his feedings and slept most of the day. (Those of you who have met him know that he is usually very alert during the day.) He was also coughing a lot and his eyes looked glassy. Needless to say, he wasn't behaving normally. We were worried about possible dehydration and thought the cough might indicate an infection. So, after consulting with our pediatrician and a cardiologist at U of M, we took him to Beaumont, just to be safe. The conclusion was that Grant was a bit dehydrated, so they gave him fluid through an iv. He then kept his most of his next feeding down, so they let us go home.

While Grant was getting checked out I also ended up in the ER. I have been getting hives/rash on my hands for the last couple of days and while at the hospital it got really bad and the nurse suggested I get it checked out, as long as we were just sitting around waiting for Grant's blood work to come back. The conclusion: I am allergic to Germ-X hand sanitizer! I use it a hundred times a day to make sure I am not spreading anything to Grant and had been using it like crazy while we were sitting in the ER. So, I got a steroid and some topical cream and I should be better soon. I guess I'll have to go back to the old fashioned hand washing.

My sweet sister-in-law, Jill, is on her way down from Midland to watch Grant for the day so I can get some sleep. Jim is giving the talk at our church this weekend, so he's pretty tied up preparing his message.

It continues to be an adventure at the Niedzinski household. Thanks for continuing to pray for us, bring us meals etc. We couldn't do it without you.

Experiment gone bad...for now

Shortly after my last blog posting I decided to just go for it and yank the feeding tube. To make a long story short, the I just put the tube back in. Grant tried to eat from his bottle a little bit (less than an ounce) but each time he did he would breathe really hard and sometimes throw up. We decided that it is most important for him to be able to get enough air and not get so tired from sucking. (Not that he was really sucking his bottle that much anyway.) He's asleep right now from crying so hard while we put the tube in and retaped his face. I think we are going to wait to see the doctor and find out if his iron stats have improved before we yank the tube again. That way his heart should be pumping the right amount of oxygen and it won't be a heart issue anymore, just a hunger strike. :)

So many variables

We're home from the hospital and Grant started on his iron supplements today. Please pray that the iron will have the right impact and that his breathing will slow down as a result. Unfortunately, he is still really unhappy (thrashing, grunting etc.) and has thrown up both his feedings today. He won't take the bottle again. We are not sure if we should take out his feeding tube because it could be making his acid reflux worse, or to keep it in because that is the only way he is getting nutrients at this point. It appears he can't both suck the bottle and get air. But, we've heard of other babies who were so happy to have the tube out that they started eating again. There are so many variables and things to try. I am feeling pretty overwhelmed...

Post-Catheter Update

The procedure went well! We don't have all of the answers yet, as the final debrief with the doctors will be this afternoon.

What we do know:

-The evil extra vein that showed up in the echogram they did the other week turned out to be a vein that the surgeon had actually closed off! So it is of no concern at all and can be ignored. There must have been some miscommunication/lack of communication between our cardiologists and the surgeon for them to have not figured this out prior to today's heart catheter. But, no matter--this is very, very good news.

-They found that Grant does have elevated pulmonary pressure (the blood that is coming from the lungs into Grant's heart is flowing faster than they want--kinda like when you put your thumb on the end of a garden hose and it makes the water shoot out faster). There is nothing they can do except give Grant time to see of he'll improve. We haven't yet talked about probabilities, long-term impact, etc. We hope to know more soon.

-They discovered that Grant is anemic (he has low levels of red blood cells) which may be contributing to the elevated pulmonary pressure. He had a blood transfusion during his surgery, so this just recently developed as his own blood became a larger and larger percentage of the whole. The short term solution is medication, but we haven't yet talked with them about the cause, how to fix it for good, long term ramifications, etc.

-As Shannon posted, the gut-doctor put Grant on Zantac to treat his bad acid reflux. It is such a relief that Grant's horrific suffering wasn't linked to his heart! He has already gotten quite a bit better. We're going to be taking Grant's nose tube out next week to see if he'll eat enough through the bottle. We think he will which will make our life so much easier, increase the sleep we're getting and will help with the acid reflux.

Our cardiologist that did the cath said "we're not out of the woods yet...". By that he means that if the pulmonary pressures don't improve and the anemia isn't fixed, then worst case scenario is another open heart surgery. Yuck.

As I've been typing this Grant should have awakened from his sedation...but he hasn't. If he doesn't wake in the next 45 minutes then he'll have to stay the night (bummer). And they would then do a blood transfusion while we're here to improve his red blood cell count.

Well, we may not be out of the woods yet, but we certainly see the end of the forest and we're making a beeline for it.

Shannon and I are doing well and are so thankful for all of your love, prayer, care and support.

Acid reflux

We visited the GI doctor today and he thinks Grant has a pretty clear cut case of acid reflux. He also believes the reason it has gotten so bad is that the NG tube is irritating him and making the whole thing pretty darn painful. He prescribed zantac and said it should start working anywhere from 48 hours to 2 weeks. In His mercy God seems to be speeding up the process and Grant has improved after just one dose. After his first dose he drank half his bottle! He is not quite his normal self yet, but is calmer than he's been all week. We have the heart cath at 9am tomorrow and they said it should take 2 hours. We'll update you then.

A Day of Fasting

A friend of ours suggested an idea to us that we'd be remiss to ignore: she encouraged us to ask those of you who are followers of Jesus and are familiar with the practice of fasting to join us in a day of prayer and fasting for Grant on Wednesday the 24th (the day of his heart cath)that he'd be completely well.

To all of our friends who are not followers of Jesus--please don't feel left out! Know that we love you and very much appreciate all of your kindness, encouragement and care.

Check out my smile

Doctor's Visit

Last night Grant continued to scream, fight, gag and throw up during his feedings. After talking to a U of M doc this morning, he suggested we get Grant checked out for possible acid reflux. So, we went to our local pediatrician this morning who said there are so many variables that she is sending us to a GI doctor. So, we are waiting to hear when that appointment will be. (Sometime today or tomorrow.) The heart cath is still scheduled for Wednesday.

Waiting for Morning

This is now getting really difficult as Grant has begun to suffer. He has times of intermittent normal behavior with times where he thrashes his arms, jerks his head and contracts his whole body while trying to cry through desperate gasps for air.

I wept as I held him in my hands, incensed at his faceless torturer. It's pure horror to watch and not be able to console him, to get my hands on the problem and tear it to pieces.

It is one thing to be inconvenienced, to be a bit low on sleep, to have to learn to shed our anxieties into the capable hands of the God who so tangibly loves and cares for us...but to see my son so miserable makes me furious.

I'll go pray for Grant now, as I can hear him struggling in his crib. Then I'll lay down, chat with God a bit about all this and most certainly feel better. And then there'll be morning--always there with a delivery of fresh hope, renewed energy and hopefully a ray or two of sun.

He always, always get us through.

Still a mystery

It's Saturday morning and Grant had a rough night. He was constantly grunting (gasping for air) and flailing his arms and legs. Any time we put the bottle in his mouth he gagged. We tube fed him throughout the night and he kept it all down. We talked to the doctors several times throughout the day yesterday. Our cardiologist is amazing and kept calling us at home to check on us. He kept apologizing that they can't figure out what is wrong with Grant and recognized how frustrated we must be as parents. He said he will not rest until Grant is better. He rescheduled the heart cath for Wednesday in hopes that any virus Grant has will be gone by then. However, he said if he continues this behavior we could bring him in on Monday and they'd probably do it then. The danger in letting Grant continue to grunt and struggle to get air is that at some point his heart may just give up from working so hard. But, at the same time they said that they won't do anything for him at the hospital except watch him if we bring him in over the weekend. So, they advised us to watch him very closely at home (thank you Jim for taking the 9pm-5am shift last night)and bring him in if he gets worse. This is all so confusing and not clear cut. Please pray for wisdom for Jim and me to know what to do.

We're home!

We just arrived home with Grant and I thought I'd update you while grandma gives Grant his bottle. Grant is stable, but there is concern about an underlying problem. The fact that the veins are more constricted since surgery and the extra vein is unexplainable has caused the doctors to schedule a heart cath for January 31 at 11am. They are concerned enough to try to get to the bottom of this.

But, Grant is getting closer and closer to being back to his normal self. So, our hope is that it was just a virus and the surgery did in fact fix everything.

Prayer Requests:
1. Peace for us in caring for Grant at home after such a scare
2. That if there is still a problem with Grant's heart/veins, God would do a miracle and the cath would show it
3. Healing for Grant's lungs

Thanks for your prayer support through this. We believe it is what got us out of the hospital so fast!

Headed Home?

Grant is improving. However, he is still not the same baby he was a week ago. He is grunting a lot (which is a sign that he's trying to get air) and breathing fast. However, he is starting to drink from his bottle again and seems a lot calmer than he was yesterday.

The doctor came in this morning and said that if Grant continues to drink from his bottle (a sign that he has enough air to suck) then we could go home tonight. The good news is that Grant did drink a significant portion of his first bottle this morning...but, then he proceeded to throw it up. So, again, the situation is not clear cut. The doctor then said that Grant has to make it through the day without throwing up again in order to go home.

So, what was actually the problem? No one is really sure. Although they are willing to send us home, they still want to investigate what caused the flair up. So, they scheduled a heart cath for next week to try to get to the bottom of it. They could keep us in the hospital until then, but they think he'll get stronger and healthier faster if he's at home.

In short, please pray that Grant's breathing slows, he sucks his bottle and he doesn't puke. :) If all this happens we'll see our own bed tonight. We'll keep you posted.

No Answers Yet

Summary:
They aren't sure why Grant has regressed a bit. He is actually about 20% better than yesterday morning, but still not good enough to call this little episode just a bump in the road. They are considering a bunch of theories regarding the cause and they'll decide tomorrow what to do. Please pray that Grant's lungs and heart heal and that the doctors have wisdom about what to do next.

Details:
They have several theories about what may be causing Grant's regression...

-An infection, though I think they actually ruled that out.

-A hidden virus that is sapping up the tiny energy reserves Grant has, therefore causing his heart to struggle to do its job. Solution: hang out in the hospital until it clears.

-The x-rays of the lungs aren't horrible...but they aren't as good as they would like and expect at this stage in Grant's recovery. But they don't think it's likely that their condition would be causing the level of struggle Grant is experiencing, but it could play a role. Solution: There isn't one, really. They still hope and expect the lungs to get with the program and heal up completely, but they can't be for sure that they will.

-Just before we left the hospital December 28th, they did a final echogram (similar to an ultrasound) on Grant's heart, and lo-and-behold, they saw another rogue vein staggering off into Nowhereville that they didn't know about when they first did the surgery. They discussed it with the surgeon who argued back that he had Grant wide-open during surgery and made sure there were no naughty veins in places they shouldn't be. He asserted that the echogram must be mistaken (they aren't the most precise tools, understand). There was evidence to support his view--Grant's oxygen levels, heart rate and breathing rate were all in the range of what they expected at the time. So, whether the vein was there or not mattered little because if it was there it was small enough to not cause much of a problem anyway. They surmised that it may never cause a problem and could just be left alone (kind of like an appendix). They would plan to do some more tests down the road to see if it was really there and to just keep an eye on things.

While I love our surgeon's conviction (and trust and respect him completely, by the way), it appears from the new echogram they did today that the infamous vein does indeed exist. However, from what they can see, it still doesn't seem like it would be to blame for Grant's current condition, either. But they can't be for sure from just an echogram. Solution: They'll do a heart catheterization (that's where they shove a tube up a vein in his arm or leg into his heart so they can examine it). That'll give them the data they need to determine if the weirdo vein is causing any problems. If it is, there is a chance they can do something about it right then and there with no extra invasive surgery required (whew!). They would prefer to wait a week to do this so they can rule out the virus theory 100%, but they may do it tomorrow anyway; they're just not sure yet.

So, there you have it. Shannon is doing fantastic and I'm so thankful for that. Thanks for being faithful readers and pray-ers!

Back at the hospital

We're at U of M right now and they are running tests on Grant. So far they've found out that the restriction in his veins has gone from 3 (at the time of his discharge) to 7. They usually don't do surgery unless it is a 12 or higher. However, the doctors told us that going from a 3 to a 7 is probably not enough to cause the distress that Grant is showing. So, they are continuing to run more tests to try to find out what other underlying problems there might be.

They tested him for RSV and it was negative. There is one other infection that they think might be a likely cause, but we don't have the results for it back yet. Please continue to pray, pray, pray.

A Step Backward

Over the last few days Grant has had difficulty breathing and showed some signs of congestive heart failure (essentially the heart is having trouble pumping blood as it should). The symptons were bad enough today that Shannon called the cardiologist at the University of Michigan to tell him about it. He had us go to the local emergency room (Royal Oak Beaumont) and they confirmed our suspicions. Grant is not in an "oh-my-gosh-this-is-an-emergency" state, but the boy ain't right, as they say.

They poked, prodded, and took some x-rays and blood tests. He has a more fluid in his lungs than he did at our check-up last week, so this is likely the culprit. Beaumont is shipping us back to the UM hospital for Grant to be re-admitted.

We don't yet know what happens once we're there or what this all means, exactly. It is very possible that this could be a relatively common (though unfortunate) glitch in the healing process--a step backward, if you will--and Grant just needs a bit of extra rest and help to get over the hump. Or it might be something more serious; we don't know.

Please pray for:
1. Shannon and I to be calm and to find ourselves able to converse with and trust in God.
2. Grant's lungs and entire vascular system to be completely healed.

Thank you all! We'll keep you updated...

Pray for Grant's feeding

Instead of continuing to increase the amount of formula Grant is taking by bottle, the last few days he has been taking less and less. When we go to give him his bottle he starts shaking his head side to side, flailing his arms around and kicking his legs. The last two nights as I've attempted to hold the bottle in his mouth, in spite of his attempts to reject it, he has responded by throwing up all over me. :)

The nurse told me that some babies get really used to tube feeding and don't like the bottle because it is too much work to suck. I really hope that this is not what Grant has decided because we are eager to get the tube out. But, he has to drink all his bottles by mouth for that to be a reality. Please pray that Grant would start to like his bottle again.

We've Come So Far

Today I was looking back at our earliest blogs surrounding Grant's birth and the first week of his life. It really hit me how far he's come. Sometimes I tend to get frustrated by the oxygen or having to wake him in the middle of the night to give him meds, and I forget to be thankful for all the answered prayers we have seen.

A few days ago after a sleepless night, a delivery of a second malfunctioning oxygen compressor and a baby that cried every time I put him down, I said to a friend, "This is too hard. I just can't do it." When I've said that before to people they tend to answer, "Yes, you can." But, this person surprised me with their answer. They said, "You are right. You can't do it because you are trying to do it alone. That is why you need to invite Christ to carry your burden. Then it won't feel so heavy." That was a real turning point for me. When I try to care for Grant on my own and forget to talk to God throughout the day I feel burned out and anxious. But, when I ask God for His help and His peace and His wisdom when caring for Grant, He gives it to me. I am so thankful that we have a personal God, one that we can talk to and whose voice we can hear if we are still enough to listen. He has heard our prayers and yours. Thank you God, and thank you friends.

Bath Time

Right on Track

We just got back from U of M for Grant's first check up. They said he is right on track in terms of his progress. He still has some congestion in his lungs, but much less than when we left the hospital. His respitory rate has improved and his chest scar is healing nicely. They want to keep him on the oxygen for now and will re-evaluate his need for it at our next appointment on February 8. (Start praying now!) He is gaining weight, but is still not eating as much as a healthy baby at his age. They told us that if he drinks his whole bottle by mouth for 24 hours, we can pull the tube. Right now he drinks his whole bottle 2-3 times in a 24 hour period and we have to tube the rest. However, we started "suck therapy" yesterday and I'm hoping Grant will continue to improve on the bottle.

4 Weeks Old

One month update

Grant is one month old today. Our visiting nurse came today and had both good news and not so good news. The good news is that Grant gained a pound this past week! The not so good news is that his respitory rate is "higher than we'd like to see." So, we continue to pray and we'll see what the doctor at U of M says on Thursday.

Afternoon nap with mom

Visiting nurse

Our visiting nurse came this week to check on Grant and things went well. He has gained a little weight (2 oz) since leaving the hospital and is keeping down his formula. (Thanks for your prayers! We've had no projectile vomiting since the last post!) We go back to U of M on Thursday for lung x-rays and to meet with Grant's doctors.

Grant's first outing

Yesterday Grant got to see the outside world for the first time since we came home from the hospital. It is not an easy thing to get Grant out of the house because he has to be hooked up to the portable oxygen tank at all times. Right now it takes both Jim and me to do this, but hopefully after a while I will feel comfortable doing it myself. Jim plans to go back next week, after a full month off. I'm so thankful to have his help this week as we settle into life.

My mom has been an amazing help running errands, feeding Grant, singing to him and making his special "protein shakes." Speaking of "protein shakes" (a special high calorie formula that Grant needs), please pray that Grant's stomach tolerates the new recipe that we are starting tonight. We tried to give it to him a few days ago, but his little tummy wouldn't tolerate it. He really needs to gain weight and strength at this point. Please also continue to pray for healing for Grant's lungs. He continues to breathe really fast, which is within the normal range for him, but still faster than healthy babies. He can only take a few sips from his bottle at this point before he needs to rest and take catch his breath.

On the other hand, his lungs must be working pretty well, because I can hear a cry in the next room...

Almost Normal Crazy

I think life at home with Grant is just now starting to become more like what new parents experience when they arrive home with a new, healthy baby--crazy, yes, but a normal crazy.

We're so thankful: Grant is doing great; Shan is being an all-star mom; Shan's mom (now a Grandma!) has been such a big help; friends from Genesis (our church) are providing us with meals; and it is sunny today (perhaps the biggest miracle of all given that it is January in Michigan).

Our only real problem is that Michigan lost the Rose Bowl. Oh, and we need more sleep. A lot more sleep. But that is a normal rite of passage for new parents and is nothing worth taking up cyberspace to jabber on about.

Since we're normally not big bloggers, our posts will be a bit less frequent going forward. We'll put up some pictures, perhaps, and we'll definitely give updates on our next four big hurdles:
1. Follow-up appointment with our cardiovascular nurse practicioner, Katie, on 1/11/07
2. First appointment with our cardiolist, Dr. Cotts, on 2/08/07
3. Grant not needing the feeding tube in his nose (he grows stronger)
4. Grant graduating from the oxygen tank (lungs heal and high pulmonary blood pressure gone)

Thank you for continuing to pray for our family!