Grant's 6 month old photos

Grant's first swim lesson

Today Grant and I had our first swim class at Goldfish Swim School. Grant loved it! Here's a picture of him in his suit. He didn't tolerate the goggles for class. :)

Pulmonary Lymphangiectasia

Today we saw a pulmonologist for the first time. Because Grant's heart looks good, our cardiologist suggested we have Grant's lungs looked at more intensely because he's still breathing hard. The pulmonologist diagnosed Grant with pulmonary lymphangiectasia (PL). Here is a brief overview:

Lymphatic fluid in the lung is derived from normal leakage of fluid out of the blood capillaries in the lung and the intestines. In PL, the channels (lymphatics) that carry lymph fluid are not properly connected and become dilated with fluid (lymphangiectasia). (This is why in Grant's chest x-rays they always say that his lungs look wet.) This fluid makes the lungs less elastic, which this causes breathing difficulties.

What does this mean for Grant? He has a greater chance of having respiratory distress. (In other words, if Grant catches a cold he would likely have to be hospitalized because it would be so hard for him to breathe.) According to research, most patients who survive the neonatal and early infancy period continue to have respiratory problems (recurrent cough, wheeze and pneumonia) in the first several years of life with increased rates of hospitalization. A few patients require home supplemental oxygen for a period of time. Overall, respiratory condition and X-ray abnormalities improve during infancy and childhood, with many patients having minimal symptoms by age six.

So, overall, the prognosis is good. PL is something that Grant will likely outgrow. In the meantime we will continue to be the germ police. The doctor switched Grant's inhaled steroid, which makes all the difference in some kids and we're hoping Grant is one of them. We'll go back to see the doctor in a month for more chest x-rays.

Oh, and the doc said that Grant's lung condition has nothing to do with his eating difficulties. If it was due to not getting enough air then he said Grant would not be able to drink his bottle while sleeping, which is still his preferred method of feeding. However, Grant did enjoy three french fries for lunch today (shhhhh- don't tell dad), so maybe he just doesn't like the healthy food we've been trying to give him. :)

6 months old today

It's exciting to think how far we've come in the last 6 months. Exactly 6 months ago at this time Grant's vitals were dropping and a ventilator was in his mouth. I was recovering from giving birth and preparing for our first born to have open heart surgery. It's amazing to look at him now- almost 30 inches long, sitting up on his own and smiling at everyone who walks by. I'm so thankful.

This week has been the hardest for me since the first week of Grant's life. Both Jim and my parents were out of town. Feeding Grant is still an ongoing battle. On average I spend about 8 hours a day trying to get him to eat. I'm so enjoying our time together between feeds and wish so much to have more "fun time" in our days. I dread feeding Grant and even with all that work he has not met his caloric goal in about a month. He actually lost a half a pound this week.

We see the pulmonolgist this week and based on the results will be closer to narrowing down why Grant doesn't like to eat. The feeding disorder clinic is looking like a better option more and more each day. We just have to rule out all other health issues before we go. Please continue to pray wisdom and endurance for us and total healing for our baby.

Grant's Feeding Club

Below are some friends who belong to Grant's feeding club. In order to be a member you must attempt to feed Grant (or distract him while others feed him) on a regular basis. We are still accepting applications. :)

Nanny Jayne


Occupational therapist, Kia


Mom's friend, Carmel

Note: Not pictured: Kathy, Louise, Barbara,Barb R., Barb D., Courtney, Jenny, and many others!!

Grant's Echo

Grant's appointment at U of M today brought unexpectedly good and bad news. The unexpectedly good news is that his heart and veins look excellent. The doctor said that he honestly didn't expect the pulmonary pressures in his heart to look as good as they do!

The not so good news is that it must be a problem with Grant's lungs that is causing him to breath so hard. We have known that he's been breathing hard, but what we didn't know is that how rare that is for it to continue this long after surgery. When I asked the doctor how long it would take the lungs to heal he said he couldn't give me any statistics because it is rare that someone whose heart is fine is still breathing so hard this long after surgery. So..... to the pulmonologist we go!

Grant and Uncle Hal

Big Day Tomorrow

Early tomorrow morning we are headed to Ann Arbor for Grant's echo. Please pray:
1. That they find his lungs healed
2. That the veins connected during surgery have not changed
3. That Grant is given the perfect amount of sedation (last time he had a hard time waking up)
4. That Grant eats well tonight and again after the sedation. (I have to wake him in the night to feed him a couple times because he can't have food before the sedation.)
Thank you!

My fun kid

Despite all the work that Grant takes, I have to say I am having fun. Grant is just a fun, silly kid. Tonight we went out to dinner for my brother's graduation. There were paper tablecloths on the table and unfortunately, Grant thought he was at the doctor's office... See evidence below.

Grant's dining experience

Grant's feeding rollarcoaster

When Grant woke up at 3am this morning he was wide awake. I rocked him in the rocker for a while and he just wasn't falling back asleep. So, being tired and just wanting to get him to eat I put the bottle in his mouth. To my surprise he started sucking. It took him awhile because his suck has become weak through lack of practice, but he ate almost the whole thing while staring up at me with his big green eyes. Then he went back to sleep.

I was so excited to try to feed him this morning, thinking maybe he was healed. But, unfortunately, he didn't want his bottle awake and it was a battle to get him to take it asleep. I am already dreading his next feed. I hate this feeling of not wanting to feed Grant because I never know how it is going to turn out. We really need a breakthrough.

allergy testing

Grant got allergy tested today to make sure that food allergies are not what is causing him to not want to eat. After 20 pin pricks and three shots we were thankful to find out that he's not allergic to any foods that they could detect. Grant was not a fan of the test, but he took the best nap of his life afterwards. :)

Grant's feeding update

Today Jim and I met with Grant's GI doctor. He was extremely helpful. He confirmed what we already knew- that Grant is not eating enough so he is not gaining weight like he needs to be. He does not yet know the cause but said it is time to be aggressive in finding out more data. So, here is a summary of his plan:

1. Get the results of Grant's echo at U of M next week. (He said that if Grant is still having heart/lung issues, then that could be the cause of not wanting to eat. Can you imagine trying to eat while not being able to get enough air?)

2. If the results come back saying Grant's heart and lungs are fine, then he'll do a PH probe. This is a tube down Grant's nose into this belly for 24 hours that measures how much acid reflux Grant is still experiencing. If Grant is refluxing a lot, then this pain could be what is causing him to not want to eat.

3. If the PH probe comes back fine and Grant is still not eating then we'll head to Columbus, Ohio to one of the best "feeding disorder" clinics in the country. It is inpatient, so Grant would be checked in for 2 weeks while they work with him and us on "retraining" Grant to eat. This clinic has a very high success rate and would be well worth the 2 weeks if we got to bring home a child that liked to eat!

4. If Grant does not learn to eat at the clinic and is still not gaining weight, then they would consider putting a g-tube into Grant so we could feed him directly into his stomach.

Please continue to pray for Grant to be healed and for Jim and I to not grow weary.

Memorial Day Pictures

kisses from dad

Sucking on my pacifier

on my way to bed...

Do I look sleepy to you?

Grant and food

Grant continues to only drink his bottle while sleeping. As we learn more about this oral aversion we found out that this is called "dream feeding." The problem with this is that the sucking reflex that babies do in their sleep stops at around 7 months.

We are trying to come up with a contingency plan for if Grant stops "dream feeding." I had a taste of this tonight and finally gave up after trying for two hours to get him to eat. Every time the formula hit his throat he woke up agitated. It is so frustrating to spend so much of our day/night to try to get him to do something that is so basic.

The good news is that Grant likes solid food. The bad news is that he can't take in nearly enough to cover his caloric needs. The worse news is that even if he ate enough solids, without taking the bottle he won't get enough water to stay hydrated. (We are still working on the sippy cup.)

So, we are going to try to get our occupational therapist, GI doctor and cardiologist to agree on what to do when this happens. Our fear is that they are going to want to put in a G-tube (where food goes right to his stomach) because they really need him to get enough calories. Please pray that it doesn't get to this point. We would love to see Grant's feeding problems healed before we get to a crisis point. Plus, we're feeling weary and tired of battling him over every meal. We could use your prayers for strength and perseverance.

On the mend

I'm starting to feel better and been having fun taking pictures of Grant while hanging around the house. Today I decided to give him a bath outside. The pictures say it all...

Fun Grant Picts

Still sick

Today my brother asked me, "Shannon, why haven't you updated the blog? You can't just leave people hanging like that." I told him that nothing is new because I'm still sick so I'm hanging around my house in latex gloves and a surgical mask. But, he convinced me to post this so that everyone would know that Grant is fine. Neither Grant nor Jim has caught my bug and we're still waiting to hear from U of M on the date of his next echo. That's all.

I'm sick!

It seems that in the midst of the stress of the last couple of days my immune system has taken a hit. I've got some sort of upper respitory infection and feel quite terrible. My parents have Grant for the afternoon until Jim can get home from work. Please pray:

1. That Grant does not catch this virus! If it gets in his lungs he could easily wind up in the hospital.
2. That I recover quickly.
3. That Jim remains healthy and strong as he cares for Grant and me.

A visit to U of M

Last night Grant seemed to be "panting" (like a dog) and kind of gasping for air. So, today I took him to Ann Arbor to see his cardiologist. He wasn't too concerned about the panting- he thinks it is a behavioral thing Grant learned to do when he's excited or upset- but he is concerned about how hard Grant is breathing overall. He continues to retract (suck in so hard that you can see his ribs), which should have gone away 6 weeks after surgery. So, it is either his lungs or a problem with the veins from surgery restricting. He doesn't think it is an emergency, but he wants us to come back for a sedated echo in the next couple weeks to check on these two issues. Please pray that by the time we go back Grant is no longer retracting!

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.