Grant's Dedication

This weekend at church Grant will be getting dedicated (our church's version of "christening"). We will be celebrating Grant's life and acknowledging him as ultimately belonging to God. If you would like to join us in this special time, please feel free to do so. It will take place during our normal church service on Sunday at 10:30am. (See www.genesisthechurch.com for directions)

Fever Update

Grant is still not himself. His fever stays down as long as he has Motrin in him, but when it starts to wear off his fever goes back up. His eyes are a little glassy and he's really fussy, but other than that we can't find anything wrong with him. Please continue to pray for complete health and healing! We'll head back to the doctor tomorrow for a recheck.

The good news- Grant enjoyed eating again today! He had mac-and-cheese with ground chicken for dinner and loved it. Our OT said that if we can get him to start drinking more water (through a sippy cup or water bottle), then she thinks we can graduate him from occupational therapy by the end of the summer. Yippee!

Grant's first time on the lake

Go away fever!

Please pray for Grant to get well. He has not been himself since he woke up this morning. We went to the pool for a couple hours, since that seems to be his favorite activity these days, but he was still really fussy. So, after he wouldn't stop crying this afternoon I finally took his temperature and found that he had a fever.

After a round of Tylenol and Motrin his fever still didn't go down so we went back to the doctor. She couldn't find anything wrong with Grant and thinks it may be a virus that is going around. So, we're going to keep trying to get his fever down and take him back to the doctor again in a day or two for a recheck. Please pray that his fever would go away and that if he has a virus that it would not turn into anything more serious.

6 month check up

Today we went to a new pediatrician for Grant's 6 month check up. After trying 5 pediatricians I think we have finally found a perfect fit. It makes me so excited to finally have a primary care doctor for Grant. We found out that he's still at the 90th percentile for height and the 25th for weight.

Grant has been doing better with solid food lately. He really prefers food that he can pick up and put in his mouth himself -french fries, Gerber cheese puffs and other healthy foods like that. :) The doctor watched him eat the cheese puffs and thinks it is more of a control issue than a food issue. This makes sense because he is probably sick of all the medication and pokes that come at him without his consent. She said that if Grant starts eating more solids and drinking a little better out of a sippy cup then we can get rid of the bottle! We are still calorie counting and would appreciate your prayers that Grant continues to eat more solids.

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.