Gas Station

Grant is so much fun these days. He is talking a lot and is starting to have an opinion about everything, whether it is what to eat for breakfast or which shoes he wants to wear. One struggle we have everyday and night is getting dressed. I tend to take a more forceful approach and just wrestle him into his clothes, but recently Jim came up with an interesting bribe. Grant's favorite part of the day is when daddy cleans his ears after his bath. So, last night when Grant refused to let Jim put on his pajamas, he said, "If you let daddy put on your pajamas, then I'll clean your ears." Grant got a big smile across his face and yelled out, "OKAY!" He totally cooperated for the rest of the dressing process. Who knew?

Tomorrow I'll be 33 weeks pregnant. I'll probably be on bed rest for another 3. Even though it's far from ideal, we're in somewhat of a groove. Ever afternoon after his nap Grant goes to Grandma and Grandpa's house until dad gets home from work. In the mornings we often go to a friend's house so that Grant can play and I can stay off my feet. The pictures below are from a play date last week with Grant's friend, Jack.

More Water Fun

Grant in a hat

The closet game

Water Baby

Grant has been keeping cool these days by playing with water. He's also very into telling us the temperature of things. So, much of the time he's playing in the water he's also saying, "hot, hot" or "burrrr" if it is too cold.

He's talking a lot more lately. His new favorite word is heavy. I think that he must have picked up something heavy recently and gotten some praise for it because now he walks around trying to pick up chairs, buckets, stools and everything else. If he manages to get it off the ground he'll smile and say, "heaby, heaby."

Animal Sounds

Grant loves to look through his farm book that Grandma Niedzinski made him and make all the animal noises. Here's a peek. He does have a favorite animal noise as you can see.

All things adult

Grant wants to do all things "grown-up" these days. Here's what happened when he got his hands on my friend Laura's blush brush.

Growing and Changing

Grant is adjusting really well to my being on bedrest. The first few days he was throwing tantrums and trying to shove me off the couch. But, now he is learning to play independently and has even stopped asking me to pick him up. This makes me a little bit sad because I am used to being the go-to person but it shows me he is no dummy. He goes to someone who can get the job done. He has learned to climb into the kitchen chairs and pushes a chair over to the sink by himself to get up and wash his hands. (You don't think that just because I'm on bedrest we slack on hand washing, do you?)

His favorite thing these days is to go to the park or really do anything outside. When dad gets home from work they go outside and do what dad refers to as "baby parkour." (This involves climbing walls and jumping off and lots of other things that scare mom.) Grandma and Grandpa Koss bought a sandbox and water table for their cottage and Grant could stay outside all day and play. He doesn't really seem to care that he's soaking wet and it's only 55 degrees. He actually says, "burrrrr" and then laughs.

Grant's eating is getting better. From the beginning feeding has been a challenge for Grant and until recently he needed books/toys/songs to distract him while we shoveled food in as fast as possible. (After 5-10 minutes he always said he was done regardless of how much he has eaten.)But, he's recently discover ketchup and that seems to make mealtime much more enjoyable for him. This morning he dipped his waffles in ketchup. Whatever works!

Another ultrasound

Good news! The ultrasound today showed that my amniotic fluid has almost doubled since Monday. Thank you for praying. They are still monitoring me closely because of the contractions, but now that the fluid is within normal range I'm feeling much better. I have another appointment on Thursday.

Trip to the ER

We had an emergency trip to the ER last night because of some pregnancy complications. I will spare all the male readers the details. It turned out fine and they think that there is more amniotic fluid than there was on Monday. We'll officially know tomorrow because we have another ultrasound. The current concern is that my stomach is measuring smaller than it was last week. (It is measuring at 25 weeks even though I am 28 weeks.) It is not a concern if someone is measuring small all along, but I have been right on target until recently, so it is a bit puzzling. Tomorrow when they measure the fluid levels they will also measure the baby. I'll keep you posted. In the meantime please pray for peace and sleep for me.

Thank you!

Thank you to our parents and friends for all the practical help you've been providing! The food, grocery shopping and caring for Grant is showing us incredible love in the midst of this hard time. Thankfully, if I am laying down I get a lot less contractions. I have another appointment with my midwife on Thursday to check things out.

Daddy has been staying home in the mornings to make Grant breakfast. Here is a shot of Grant helping with the cooking.

Ultrasound Update

I had an ultrasound this morning and got both good and not so good news. Good news- my cervix is within normal range in length. This is an answer to prayer! Bad news- the fluid surrounding the baby is below normal range. I have an OB appointment on Thursday and another ultrasound next Tuesday. Please pray for the fluid level to increase and the baby to stay inside.

Diaper shots

Grant is not really into getting dressed these days. If we start to get dressed and he can hear dad in the next room he yells, "Gada! (dada)" and wants nothing more to do with me or his clothes.

Jim is doing an amazing job taking care of Grant while I rest on the couch. Grant is thrilled to have so much attention.

Pregnancy update

I'm having some preterm labor symptoms. (I'm only 27 weeks.) I'll know more on Monday when they do an ultrasound and some tests. Please pray for this baby to stay inside and finish cookin'. I'm currently on bedrest and would covet your prayers. Thanks!

Coffee Breath

Grant wants to imitate everything that we do. He always wants to eat what we're eating or drink what we're drinking. Typically, when we let him taste a drink (like V8 juice) he makes a face and doesn't want anymore. So, the other day when he wanted a sip of coffee we let him have a taste, thinking for sure he'd reject it. But, we were so wrong. After one sip he literally said, "Ahhh" and then did the sign language for more. So, we gave him a few more sips and each time he had the biggest grin on his face. (We finally cut him off...)

A few minutes later we had to get in the car and go somewhere and I forgot to wipe the ring of dried coffee off of his face. We ran into a friend who looked and Grant and asked what was on his face. It was so embarrassing to have to tell her it was coffee!! I swear, we don't give it to him on a regular basis. :) We had a good laugh. Don't tell his cardiologist.

Mother's Day Gift

Once every other week a preschool teacher from Birmingham Public Schools comes over to do an activity with Grant. (He qualifies for this because of his previous PT and OT services.) This week Ms. Sheryl came over with purple paint and flower cut outs so that Grant could make me a mother's day present. Even though I was supposed to be closing my eyes I managed to get a few shots of him exploring paint for the first time.

Shoe Tower

In addition to walking his dog, Grant is also into making towers out of shoes. It works out really well for me because I can lay in bed and get much needed rest while he destroys the closet. I'm not sure if anyone besides the grandparents will appreciate this video, but what makes me chuckle every time is the fact that Grant claps for himself each time he gets a shoe to balance.

Walking the dog

Grant is really into walking his dog down our street.

A Normal Week

This week was probably the most normal one we've had yet! We had friends over for dinner (and they brought their child!), went to music class and we were outside at the park everyday. It is amazing to see the difference in both Grant and me now that we have more options than, "do you want to play upstairs or in the basement today?" I am waking up looking forward to what the day will bring.

Pulmonary Lymphangiectasia

Today Grant saw the pulmonologist because he's still wheezing. The good news is that the wheezing is not due to fluid in his lungs, but left over mucus from his ear infection.

The pulmonolgist also told us that in about a week Grant can stop his breathing treatment. (The bummer part about this is that he is not sure it ever helped Grant in the first place, even though we've been doing it for a year and a half.) But, we are so happy to not have to torture Grant by holding him down every morning while we force a mask on him. This will mean that Grant is off ALL medications! Yeah God!

The doctor said that we are allowed to start having play dates, going to music class etc! He reiterated to me that he would recommend Grant mostly play in open air environments and stay away from sick kids, but he said this summer is a good time to push Grant. We started today with his first play date of the season. Grant had a blast.

When I asked the doctor about the long term prognosis he said we'd still have to hole up next winter and get shots for RSV. He said that at this point it appears that Grant still has pulmonary lymphangiectasia. (See description below.) He said that we can do tests on Grant's lungs when he's 5 to see if he's outgrown it. I told him that we're praying he'll be 100% healthy by the time his little sister arrives. :)

Pulmonary Lymphangiectasia: (as described on the website littleleakers.com, dedicated to those who suffer from this disease)

Pulmonary Lymphangiectasia is a condition in which there are widespread dilation of the lymphatic channels in the lungs. 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. Evidence has shown that symptoms improved in most patients after infancy and were notably better by the age of 6 years old. 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.

Wheezing

Grant got a pretty bad cold/cough/ear infection and nasty yeast infection last week. He started wheezing on Tuesday, so I took him to the doctor and they said that his lungs sound clear. This is great news, but we'll feel a lot better when he stops wheezing. He seems to be pretty uncomfortable and is having a lot of trouble sleeping. It is so hard to know what hurts because he can't tell us. I am going to try to get him in to the pulmonolgist on Monday to have him check out his lungs again. I want to make sure he is not having trouble breathing.

Please also pray for our friend's baby, Rhyer, who had his second heart surgery last week. The heart part of his surgery went well, but they hit a nerve which paralyzed his lungs so he can't breathe well. He'll have to have another surgery on Monday to correct this. What a long journey.

Spin Cycle

Grant really gets in to doing laundry..

Dancing Grant

This morning Grant and I had our own church service. Here is a video of Grant praising God.

Chest x-rays

We just got back the results of Grant's most recent chest x-rays. Unfortunately, they are unchanged. (ie. still not good)I am both surprised and disappointed by this news. I really thought they were going to tell us that his lungs were healed. He looks so healthy and he weathered his two colds this winter so well. So, as for now we continue with the breathing treatments and continue to be careful of germs.

Originally the doctors thought Grant could leave the house by now to play with other kids because flu season is typically over. (I guess the cold/flu germs are what are most dangerous to his compromised lungs.) However, the doctor told me that she saw one case of the flu this week along with a case of RSV, so she wants Grant to continue to stay away from people until the flu is officially gone for the season. So, we continue to wait. It feels extra hard to wait right now because we are so close, but yet so far.

Thankfully, we've had a few warmer days lately so we've gotten outside to play. Grant doesn't know how to do sign language for "outside", but he knows how to sign "drive the car," so when he wants to go outside he does the sign for "drive" because he knows that the car is outside and if I just open the door he can escape. Last week I opened the door and before I could get my shoes on he was running down the sidewalk toward the park by himself. :)

Boy or Girl?

Today's appointments at U of M could not have gone better. The ultrasound was very detailed and showed every part that was supposed to be there (or not be there, as in our baby girl's case). The purpose of the echo was to rule out some major heart defects, but they warned us in advance that the chance of being able to see the veins was very small.(This was what caused Grant's defect.) In the end they were able to see 3 out of the 4 veins(the 4th is probably there, but they just couldn't find it) and they all had a great connection to the heart and good blood flow. They told us that it would be very rare for something to be wrong with the baby's heart after the great pictures that they got!! We are so relieved and thankful. Thank you for all of your prayers! It was great to know that we had so many people praying for us today.

Puerto Rico

We're back after an amazing time in Puerto Rico. Grant was an angel for grandma and grandpa. Here's a picture Jim took of my 21 week belly. We head to U of M on Wednesday for the echo on the baby's heart and to find out the sex.

Bye Bye Grant!

Grant, mommy and daddy are off to Puerto Rico for the week and for our first extended time away from you since you were born. Be extra sweet for Grandma and Grandpa. We'll miss you more than you can imagine! Love you, little buddy.

Giggling Grant

Turning the Corner

It looks like Grant has successfully battled his second cold of the winter. He got sick last week with a cold and cough and we headed right in to the doctor. She said his lungs sounded clear and if he doesn't run a fever and his cold stays out of the lungs then we have nothing to fear. So far, so good. Unfortunately, he passed on his cold to his mommy and as of today his daddy too. I'm told that the winter cold usually peaks at the end of February, but this year it is still going strong at the end of March. We can't wait for spring!! Grant gets chest x-rays next week and we meet with his pulmonolgist on April 11 to find out how his lungs look. We're praying for total healing so that we can not only leave the house this summer, but next winter as well.

Just another work day..

Outside Pictures

Our sweet neighbor, Antonio, took these of Grant outside this weekend.

Doing Better

We're so thankful for this blog. It seems as though every time I post something requesting prayer God is so quick to answer it. Grant had a much better day yesterday and seems to be back to himself today. Thanks for praying!

Where's my boy?

Grant has not been himself since the incident with the vaccine. It's been a week now and he's still bumping into walls (his ears are fine), is really moody and doesn't want to eat. Please join us in praying that Grant gets back to his normal self soon and that no damage was done.

Fun Grant pictures

Grant waiting patiently by the door for me to come put his snowsuit on.

He is really into cars right now. You can find a race car under any couch, chair or bed at our house.

Grandma and Grandpa giving Grant good-bye kisses before they head back to Florida.

Vaccine horror story

Grant had a very bad reaction to his vaccine on Friday. By Friday night he had over 104 temperature. This caused his heart to beat very fast which was extra scary with Grant's history. With the doctor's guidance at 2am we were able to get his fever down to 100 through Motrin, Tylenol and luke warm baths. Actually, they were pretty darn cold baths. If you know Jim then you know he sometimes takes things to the extreme. He kept reciting, "better to have him shiver than have brain damage." Once Grant started feeling better he decided that he was rather happy to have both mom and dad playing with him in the middle of the night and we even heard a few giggles from him. He is almost back to normal today except for one weird thing- his balance. He has been running into walls and falling down a lot while walking, which is not typical for him. Please pray that he would not have any damage or lingering affects from this vaccine.

15 month check up

Today Grant went in for his 15 month well visit. It was overall good, but he experienced it as bad. Well, let me back up...Yesterday the visiting nurse came to the house to give Grant his two shots for RSV that he gets every month. But, she accidentally hit a vein on one of them, he bled a ton and was a lot more upset than normal for the rest of the day.

He woke up fine this morning and we headed to the doctor's. This may seem weird, but he normally loves the doctor's office. He loves seeing other kids in the waiting room and from the minute the doctor walks in he is smiling and trying to grab all of her fancy tools. But, today when the nurse walked in (different nurse than yesterday) he freaked out. She didn't even do or say anything. He started screaming, "mamamamamamamamamama" and was clinging to me with huge tears streaming down his face. He would not even sit on the scale for her to weigh him. Then he started thrashing around and tried to head-butt her when she came near. It was the weirdest thing. I have never seen him so scared in his life. He cried through almost his whole appointment until I sat him in the stroller and told him we were leaving. Then, he stopped crying.

I am hoping that he was just having an off day and did not decide to hate doctors, because we have to see them quite often. I wonder if it was the visit from the nurse yesterday or the fact that whenever I do his breathing treatment I tell him that the doctor is making me do this. :) I have to- he cries through the whole thing and I don't want him to think it is my idea to torture him everyday. Either way, the more he understands the harder it is to subject him to pain. When he was a baby it was hard, but in a different way. I've talked to other moms who don't wince at all when their babies get immunizations. I'm near tears every time they poke him. Perhaps it is because I've seen him go through more pain than any child should have to. Or, maybe I'm just emotional and pregnant. I think about how this summer he has to be sedated for his echo and it makes me cringe. He's not old enough to reason with, but he's old enough not to like what's happening to him. When he looks up at me screaming, "MAMA!" I just want to take him and run away and not let anyone poke him again.

Okay, now I do sound emotional and pregnant, so I'll get to the good news before I start crying. :) The doctor said he looks great! She can't believe how far he as come and seems to be on target for all of his developmental milestones. It is really a miracle. We give God all the glory for our joyful, healthy boy. Next appointment: pulmonolgist in April. That's a big one. I'm hoping for a "get out of jail free" card. (ie. permission to take Grant out of the house.)

Fast Facts

Grant has his 15 month check up on Friday, and as I've been thinking about what makes Grant who he is at 15 months, I jotted a few notes down:

# hours of sleep a night: 12-13
# of naps a day: one (1-3 hours)
Favorite breakfast food: eggs
Most frequently spoken words: mama and hot (not used together)
Most frequently signed words: help and cracker
Least favorite times of the day: breathing treatments and diaper changes
Favorite times of the day: morning bottle with mommy (I sing in the rocker while giving Grant a bottle and he either claps or tries to cover my mouth, depending on the day and song. Really.) and evening wrestling with dad
Favorite movie: "Baby Signing Time"
Most likely to throw a fit: when mom is talking on the phone or cooking
Favorite activity: sledding, swinging or playing in the dishwasher
Biggest smile appears: around dogs
Item we can't live without: pacifier attached to his bib
Funny morning routine: Every morning when I go into Grant's room he starts doing the sign for "help." Then he points to all of his stuffed animals that he's thrown from his crib and I have to pick up each one and make the animal noise before putting it back in his crib. If I don't make the noise, he throws it back out and I have to do it again.I get rewarded with a big smile each time I do it correctly. It's worth it!

Family Fun Day

Every Sunday at the Niedzinski's is family day. We try to think of something Grant would like to do and we make sure we are all together. Our choices are somewhat limited in the winter. Today the three of us went sledding. It was nice because it was 40 degrees out, but there was still enough snow to make it work. We saw lots of ducks and dogs and Grant tried to talk to both of them in animal speak. It sounded like a cross between a "baaaa" and a "quack," and came out kind of like, "baaack! baaack!"

The Noises of Grant

Grant is enjoying exploring sound. He loves to roar like a lion. He especially associates this sound with dad, so when Jim walks in the door from work Grant goes running to him with a big roar. I need to catch it on video. It is adorable. Grant has also developed a fake laugh. He loves to look at pictures of himself in his book that grandma Niedzinski created for him. When he sees pictures of himself smiling in it he does his fake laugh. He's also learning how to sniff. I have some flowers on the counter that my friend, Louise, gave me last week and every time we pass them he tries to smell them. But, the noise that actually comes out is more like a panting noise. :)He's working on it.

What we did while dad was out of town

Played with the tupperware, played in the tent (yes, it's pink) and played in the freezer...

Back to the snow

We played outside for the first time today since we've been back from Florida. It's 21 degrees out. Grant learned how to open doors at grandma and grandpa's house and he's been trying to get outside ever since. So, today I finally gave in and we put our snowsuits on and went out. He was very happy running around in his boots although I think he prefers the sand over the snow, even if snow does taste better.

We went back to the doctor's yesterday to get Grant's ever lingering yeast infection (on his face) checked out. The doctor is keeping him on the same medications to treat it, but said it may not go away until it gets warmer out. Yuck. Summer can't come soon enough.

We have discovered a few new indoor activities that are keeping Grant busy. He loves to stack up paper plates and bowls. He enjoys unzipping the zippers on all the jackets in the hall closet. Oh, and his favorite is throwing hangers over the babygate and watching them crash down a flight of stairs! Never a dull moment.

I'm 15 weeks along now in this pregnancy and woke up yesterday not sick for the first time in months. Yipee!

More Florida Pictures

Grant running on the beach
Playing in the waves with grandpa Koss

Waiting to feed the buffalo with grandma & grandpa Niedzinski

Looking for birds on the water with grandpa Niedzinski

Driving the golf cart with grandma Niedzinski

Old McDonald's Farm

Grant is having a great week in The Villages with Grandma and Grandpa Nied. He loves to ride in their golf cart into town and look for dogs to wave at while riding around in his stroller. Yesterday he visited Old McDonald's farm. He loved feeding the straw to the cows and did't even try to eat it. However, he did keep trying to eat the chicken feed after he was repeatedly told not to. He learned to answer when asked, "what does the chicken say?" So, now he can tell us on command what the monkey, cow and chicken say.

He'll be heading home tonight with more bumps, bruises and scrapes than he's ever had in his life. I think that kind of thing happens when dads are in charge. :) We're so thankful for such an amazing 10 days.

Valentine's Day Poem

In addition to Valentine's Day, this week is special for another reason having to do with hearts. It is Congenital Heart awareness week. A friend whose child was also born with a CHD sent me this poem. Please take time as you are reading this to pray for all those whose lives have been affected by a CHD. As I read the poem I am reminded again that I am not alone. So many others have shared the same struggles we have over this past year. Courtney and Jeanna, and many others reading this whom I don't even know, we share a special bond that not many others can understand. It has not been easy, but it has been worth every moment. Here it is:

You passed me in the shopping mall...
(You read my faded tee)
You tapped me on the shoulder...
Then asked...`"What'a a CHD?"

I could quote terminology...
There's stats that I could give...
But I would rather share with you...
A mother's perspective.

What is it like to have a child with a CHD?

It's Lasix,aspirin,Captopril....
It's wondering...Lord what's your will?...
It's monitors and oxygen tanks...
It's a constant reminder...to always give thanks...
It's feeding tubes, calories, needed weight gain...
It's the drama of eating...and yes it's insane!
It's the first time I held him...(I'd waited so long)
It's knowing that I need...to help him grow strong...
It's making a hospital...home for awhile...
It's seeing my reward...in every smile.
It's checking his sats...as the feeding pump's beeping...
It's knowing that there... is just no time for sleeping...
It's caths,x-ays and boo boos to kiss...
It's normalcy...I sometimes miss...
It's asking...do his nails look blue?
It's cringing inside... at what he's been through.
It's dozens of call to his pediatrician...
(She knows me by name...I'm a mom on a mission)
It's winter's homebound...and hand sanitizer...
It's knowing this journey...has made me much wiser.
It's watching him sleeping...his breathing is steady...
It's surgery day...and I'll never be ready.
It's handing him over...( I'm still not prepared...)
It's knowing that his heart... must be repaired...
It's waiting for news...on that long stressful day...
It's ...praying...it's hoping...that he'll be okay.
It's the wonderful friends... with whom I've connected...
It's the bond that we share...it was so unexpected...
It's that long faded scar... down my child's small chest...
It's touching it gently...and knowing we're blessed...
It's watching him chasing...a small butterfly...
It's the moment I realized...I've stopped asking...why?
It's the snowflakes that fall...on a cold winter's day...
(They remind me of those...who aren't with us today)
It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.

And no...we'll never be the same...
It's changed our family...
This is what we face each day...
This is...a CHD.

Sandy Hands

We've been here five days now and Grant continues to love every minute. Today the waves were huge because of last night's tornado. He wanted to run straight into the Gulf and refused to hold anyone's hand. I would have thought he learned his lesson when a giant wave smacked him in the face. But, he recovered quickly and wanted more. He has come to dislike the feeling of sand on his hands so his solution is to lick his palms. :) He has stayed healthy despite the palm licking, except for the yeast infection on his face that has been there for about a month now. It isn't a huge deal, but I'm sure Grant is getting sick of an itchy cheek. Please pray for his body to be totally well. Tomorrow we head to grandma and grandpa niedzinski's house.

Florida pictures

Hello Sunshine

Grant and I arrived in Florida at 11pm last night. We're staying grandma and grandpa Koss this week and grandma and grandpa Nied next week. Grant is so happy to be here. Despite only taking a cat nap on the airplane, he was so excited he didn't go to bed until 1am. As I pushed him in the stroller through the airport he waved to everyone in sight with a big smile on his face. He calls everyone either mama or Bob (we don't know why), so we had a few interesting reactions from strangers. He doesn't have much contact with groups of people (outside of the doctor's office) so he really enjoyed watching all of the social interactions going on around him.

It is always a risk to take Grant outside the house in the winter because of the germs. Especially on an airplane. But, after lots of prayer Jim and I decided to take the risk. (Jim is meeting us next week.) I'm so glad that we did. Grant ran straight to the ocean and laughed as a wave smacked him in the face. He went on a long walk with grandma and grandpa this morning where he pointed to the birds in sight and said "Bob." He loves all the stimulation and the new environment. I think this sunshine is good for both of us. :)

FAQ

A big thank you to all of our friends and family for your support as we head into this next phase of life. We've received lots of emails with questions regarding the pregnancy, so I thought I'd try to answer a few here:

Q: What is your due date? August 14.

Q: How many months apart will the babies be? 20 months!

Q: Will you find out the sex? Yes- in April.

Q: What are the chances of this baby having something wrong with it's heart? The chances of having a baby born with Grant's heart condition (TAPVR) are 1 in 20,000. However, they have found that heart defects tend to run in families, so the chances of our next child having a heart defect are 1 in 20.

Q: Does anything different happen this time around knowing your history? Yes. We'll go to U of M the second week in April for an ultrasound and echo on the baby's heart. These tests are about 95% accurate. If everything looks good, then we'll proceed as planned and have the baby at Providence Hospital. If it appears that there is a heart defect, then we'll transfer our care to U of M and have the baby there.

Our Big News

Due in August...


...details to follow!

Hanging in there

Grant is doing a great job being sick. :) What a mean is, he's really happy in spite of the fact that he walks around holding his ear. He is also extra snuggly and wants to sit in my lap and rest his head on my chest several times a day. Thankfully, it seems like his cold is staying in his nose and not traveling to the chest. He's not really into eating right now, which is not great because he is still struggling to maintain a healthy weight. So, we continue to pray and wait this out.

That makes two of us

Well, I seem to have caught Grant's bug. Not fun. But, Grant seems to be holding his own. The visiting nurse came this morning and said his lungs sound amazingly clear for what he looks like on the outside (snot city). I really feel like God is protecting his lungs. Thank you for praying.
P.S. The doctor never called today regarding the RSV or flu swabs they took yesterday, so I'm assuming he doesn't have them. Another big thank you, God.

Grant is sick!

Please pray for Grant. He was up all night coughing and has a nasty cold. We just got back from the doctor's and he has an ear infection and a yeast infection (on his face). The doctor also did swabs for RSV and the flu and said she'll call tomorrow with the results.

Grant has been doing so well, but the doctors have been warning us how serious it would be if he got sick. Please pray that he does not have the flu or RSV and that he heals quickly. Thanks.

Sledding

We've been having fun sledding in the park behind our house.

Graduation Day

Grant graduated from occupational therapy this weekend! Kia, his OT, who has been working with us for about 9 months now said that she has never, ever seen a child improve as fast as Grant. She said that at this point the average person could not tell that he's had any difficulties in the past, and if he continues on this trajectory, then even a trained professional may not know he has struggled with his motor skills. So, she unofficially graduated him, but wants to see him again in a couple of months, just to make sure he's still on track.

The day after our great appointment with Kia, Grant's physical therapist, Carol, told us that she only has a few small concerns and she thinks he is almost ready for graduation as well. She is going to see us only twice a month now, to continue working on strengthening his right side.

Grant will still continue to see the PT, OT and early intervention teacher from the public schools on a regular basis, but they are making noises about phasing themselves out too. They said that they could graduate him, but he is too much fun, so they want to keep seeing him. As for right now, it is nice to have professionals to continue to check on Grant's progress and challenge him to do new things.

Playing with Grant

I took a few pictures of Grant this morning enjoying his usual morning activities. The first thing he does when he wakes up is runs to the bathroom to see if daddy is still showering. This morning we missed daddy in the shower, so Grant decided to hop in himself, still in his pajamas. When I turned my back on him for just a second he quickly made his way to the trash can and found my old toothbrush inside. He immediately picked it up and started brushing. Gross.

His latest favorite activity is tumbling. Mostly it consists of throwing himself on us, but he does also like to do log rolls across the room while giggling. Just the other day he attempted his first somersault. We're not sure who taught him the somersault thing. The second picture is him getting ready to do some sort of gymnastics move where he comes dangerously close to breaking his neck every time.

A Day to Celebrate

Today we are thanking God. Grant finished weaning off two more medications today. Our friends' baby, Rhyer, finally came home from the hospital after 4 months. Thank you for all your prayers!

The Sun is Shining

Today in Michigan the sun is shining and it is almost 40 degrees out. Grant and I thought this was cause for celebration, so we walked to the ice cream store and Grant enjoyed his first "Cold Stone Creamery" experience. When we got back Grant had fun running around the yard chasing his shadow and hitting all of the "for Sale" signs on the street, yelling, "Boom!" Dad taught him to play the "boom" game and Grant loves to hit all objects in the room now and yell, "boom." When he hits the tv he then looks at me and shakes his head. Unfortunately, this doesn't stop him (unless dad is home).

Quarantine Continues

We had a morning full of doctors appointments today and received a mixed report. Grant officially graduated from seeing the GI doc and as a result can come off one more medication. He is very pleased with Grant's progress and thinks there is only a 20% chance that we'll ever have to see him again. Even though Grant is still underweight he is enjoying his bottle (awake!) and is eating better than ever.

The pulmonolgist is still concerned about Grant's lungs. Even though his most recent chest x-rays are his best ever, they still don't put him out of the danger zone. Doc doesn't want Grant to have contact with other kids or be in public places until May. He said that RSV is rampant right now and that he had to put two kids like Grant in the hospital this morning. He said his airways are still too constricted and the lungs too congested to take any chances. So, we continue to keep Grant isolated as much as possible, knowing that an end is in sight. He said we'll most likely have to endure one more winter of this, but by summer of 2009 we should be able to treat Grant like a normal kid. We're still praying for a miracle, that this day would come sooner, rather than later.

Happy New Year!

We are looking forward to a very nondramatic, boring 2008. It is amazing to think that last year at this time we were just arriving home from the hospital, learning how to be both parents and nurses at the same time. Grant has come so far. He is doing a great job communicating with us both in sign language and with words. His favorite sign is, "help," which he does 500 times away when he wants our attention, can't reach something or is getting his diaper changed. He is getting 3 new teeth this week and seems to be going through a very sensitive phase. Anytime we say, "no," he starts sobbing and hides his head in our laps.

Overall, Grant is doing well health-wise. We have appointments with both the lung and gut docs this week for our regular check ups. In physical therapy we are working on Grant holding his head straight and putting an equal amount of weight on both legs. Right now he tilts his head to the left when he walks so that he doesn't have to put as much weight on his right side. This is something that we want to nip in the bud right away so that he doesn't develop secondary physical problems from the head tilt. Please pray that we would be able to correct this quickly and easily. Physical therapy is getting a little more challenging as Grant continues to develop his own will and his own ideas of how he wants to spend his time. :)

Please also say a prayer for our friend, Rhyer, and his parents. They have been in the hospital since September, when he had open heart surgery. It felt like forever that we were in the hospital, when it was really only 20 days. I can't imagine what 14 weeks would do to me emotionally and physically. My heart breaks for our dear friends, Bill and Courtney. Rhyer has another heart surgery in March, so we are really hoping they can get home sometime soon and recuperate before they have to do this again.

Thank you for all of your prayers and support in 2007. We are so thankful for our amazing friends and family, and even the blog readers we have never met face to face. God has heard our prayers. We look back at 2007 with thankful hearts.