Grant at the doctor's office

Update on Grant's leg

Good News! We just got back from Children's Hospital, where Grant had an ultrasound of his hip and an examination of his foot and shin. The conclusion was that it is something he'll grow out of. They said he might be pigeon toed when he first starts walking, but if he's not better in a year to bring him back. So, less doctor to go back and see. Yipee!

Grant once again played the "rip up the paper" game at the office and grandma was there to witness the fun. Stay tuned for some pictures of the excitement.

Grant enjoying his truck book

Grant eats again!

Thanks so much for praying for Grant to eat. Soon after I posted the prayer request he started to eat asleep again. He still refused solids, but then started eating them again today. Still no awake bottle yet today.

We went to the GI doctor for a check up today and Grant was entertainment for the whole office. While we were waiting for the doctor he was aggressively tearing up the paper cover on the doctor's table and then laughing whenever it would rip. Big, belly laughs. One doctor saw him, and she told another doctor and then the nurses all piled in the room and everyone was cracking up at Grant. When he was done shredding the paper he wanted to stand up (supported under the arms by me) and jump. And jump and jump and jump. The more people laughed, the more he jumped. They said they have never seen such a happy (and active!) baby. They said he must really tire himself out and sleep a lot. Ha! He's a unique kid. Never tires.

After all the jumping Grant turned toward me and puked all over my pants. The doctor said, "I guess he still has acid reflux," and increased his medication dose. He was also concerned about the growing eczema on Grant's body. (It covers about 80% of him now.) So, he's sending us to an allergist to see if he's allergic to milk. We have that appointment on May 31. But, the good news is that Grant is now in the 45% in weight!!! He's finally gaining at a good pace. The doctor said Grant made his day.

Battle of the bottle...again

We could really use your prayers in regards to Grant's eating again. Starting yesteday he decided he didn't want to eat while sleeping anymore. Everytime we tried to slip the bottle in he woke up and started screaming. So, we thought, okay, maybe we'll move to all awake feedings. But, he's still not eating enough awake (only about 15% of his daily calories) to keep him out of the hospital. So, right now, he's really short on food and we're puzzled as to what to do. Please pray that Grant would start eating again- awake or asleep!

Grant's bottle update

I think we've had a breakthrough! Grant is now taking about half a bottle awake every morning. It seems that Grant prefers to do this only when Jim is in the room and talking to him. So, in the morning we follow Jim around the house as he gets ready for work and Grant watches him and sucks the bottle. When Jim leaves for work, Grant stops sucking. Weird! But, we're making progress. I think the oral aversion is going away now that he is eating solids. Please pray that he continues to improve on the bottle. We're also trying out the sippy cup this week!

Grant and Mom's cast

Ankle in cast

Remember that sprained ankle I had last month? Well...it never got better. I went to an orthopedic surgeon today and he put it in a cast. I'll only have the cast for about 2 weeks then I'll start intensive physical therapy so I can get back to normal as soon as possible.

I'm looking to hire someone to baby-sit Grant while I'm in physical therapy starting in two weeks and then possibly for two mornings a week through the summer so I can take a class. I'm looking for someone who has LOTS of experience with infants, ideally a mom with grown kids who has done this before....Please let me know if you or anyone you know is interested. Thanks!

A great day for Grant

Yesterday I went to my sister's graduation in Ann Arbor all day and Jim stayed home with Grant. I think I was secretly hoping that I would walk in the door and Jim would bow down and tell me he doesn't know how I do it. :)

This didn't happen. But, what did is even better. While I was gone Grant took a two hour nap (his longest ever) and a one hour nap. He played independently, ate solids and didn't cry once. Jim and I were thanking God and then thought, wow, let's try giving him a bottle awake and see if he'll eat it. I picked him up, fully awake, and he sucked down the bottle. We couldn't believe it. He was like Mr.Normal Baby! Jim and I continued to thank God all night and I was on cloud 9. What a great day.

But then, before bed, I tried to feed Grant another bottle while he was awake. No go. He wanted nothing to do with it until he fell asleep. At this point I started to get discouraged and angry at God. And I realized that when Grant has a good day, I feel loved and cared for by God, and when things don't go well I start doubting God's goodness. I have been wrestling with this since Grant was born. I have been trying to dig into the Bible ( and reading from the website www.peterkreeft.com) as to really come to understand God's character so that on good days and bad my faith in Him and His love can remain strong.

Grant and Grandpa Niedzinski

Grant's first playdate

Grant and his favorite toy

Grant rolled over!

Yesterday was an exciting day. Grant rolled over for the first time. (Both my mom and mother-in-law swear they saw Grant do it a few weeks ago, but this is the first time he did it for me, so now it counts!) Reaching developmental milestones like this is huge for Grant, because they said he will probably be delayed for the first year. But, he is quickly catching up!

Grant is making huge improvements in eating solids. Thanks for your prayers!

We are starting to sleep-train Grant this week so that he learns to self soothe (and so we can get some sleep). The first night he cried for 45 minutes, but last night he only cried for 15! He wakes up once in the night to eat around 1am and then we have to wake him to give him his medication at 5am. We are excited at the prospect of getting more sleep.

We have an appointment with an orthopedic surgeon at Children's Hospital on May 14 to get Grant's leg/hip/shin checked out.

Visit to the pediatrician

Today Grant went to the pediatrician for his 4 month visit. It was exciting to hear that he is in the 90% percentile in height! (He hasn't really been "above average" in anything yet, so that was fun to hear.) The doctor also said he was extremely strong and appeared developmentally ahead. Yeah!!

She did say that he was one of the most active babies she's ever seen. :) No surprise there. He is in the 25% for weight, so at least he's holding steady at this point. He has eczema all over his body, which has been getting worse over the past month or so, so she finally gave us some topical medication to try for that.

The bummer part of the visit is that she confirmed what Jim and I had noticed in Grant's left leg when he jumps in his bouncer. Something is not quite right. She thinks that one leg is longer than the other. The side of his left foot his the ground instead of hitting straight on. So, she referred us to an orthopedic surgeon.

Please pray:
1. That Grant's leg/foot problem would be healed!
2. That Grant's eczema would go away.
3. That Grant would eat solids with ease.
Thank you!

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! :)