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.