Almost One

Caleb turns one in just two days. I can't believe the first year is almost over. It's been a whirlwind, full of lots of highs and some really low lows.

I find myself thinking back to those last few days of my pregnancy, my water breaking. There was such a nervous excitement in the air. We couldn't believe we were about to meet our son.

Then, after just 10 hours, we met Caleb. He came out screaming, which was really indicative of his personality. That first day was amazing but strange. It seemed so surreal that I had a baby.

After just two days, pure joy and excitement gave way to a terror and helplessness I have never known. Caleb was so sick, and we were not sure we'd get to take him home, much less celebrate his first birthday.

As you all know, our strong boy pulled through. Since that wonderful night he was born, Caleb has undergone three surgeries, two minor and obviously the big transplant surgery. We have dealt, and are still dealing, with G Tube issues.

I think about all we have been through medically, but then I wonder, why are those the things I think of when I look back. Those were big things, but they weren't everything.

In the past year, we have seen Caleb's beautiful smile almost every day since he was about two months old. We get to hear his amazing laughter and watch him soak in the world around him with a look of wonder or deep concentration. We watch him learn while he plays or looks at things, and, on rare occasions, we get to just sit and cuddle with him. We get the opportunity to walk into his view and see his face light up.

His first year has not been like most first years, but it so many ways it has been. He has grown, learned and played. He has brought us the joy that any baby brings to their parents each day of his life.

On his birthday, I don't want to remember just the big things we have been through, but of all the small joys that we have been blessed to experience every day.


1 Samuel 1:27
For this child I prayed; and the Lord hath given me my petition which I asked of him

New Baby Smell

I've always heard that new babies smell so good. I don't remember that smell on Caleb. I know he smelled like a new baby for those first couple of days, but I can't remember that smell.

When we finally got home after that first stint in the hospital, the way Caleb smelled was the furthest thing from my mind. I knew he didn't have the "new baby smell." Instead, he smelled of his special formula that has been described as smelling like powdered cheese or rotten potatoes. It wasn't a strong smell, until he spit up, but it was there.

"I can smell that Bufenyl," one of his doctor's said as soon as he walked into our room during an appointment last December.

This made me sad. I knew I could smell that awful formula on him, but I had no idea other people could smell his medications. John often described the Bufenyl as smelling like raw fish, and it did smell horrible.

I remember feeling down about it because I hated the thought of my baby smelling so bad. Between the spit up, formula and medication I knew he couldn't smell very good to other people. I, however, was used to his smell and didn't notice it, and I thought that made it even worse. I knew, then, that he smelled, but I couldn't do anything to change it.

This morning, I could smell Caleb's sweet fragrance. It wasn't a smell of gross formula or stinky medicine, but a comforting, pleasant scent. I doubt he smells like a new baby, being almost a year old, but it is the closest thing I've come to experiencing that smell on him.

Five months ago, he smelled like a formula baby on horribly smelly medication. Now, he smells like a normal baby. And I can't get enough of it.

Psalm 103:1-5
Praise the Lord, O my soul; all my inmost being, praise His holy name. Praise the Lord, O my soul, and forget not all His benefits, who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagle's.

Coming Home to a New Life

Four weeks ago, Caleb got a new liver.  Three weeks ago we came home to a new life, a new routine.

 

Gone are the nights of making special formula for Caleb. Instead, he drinks breast milk and cows milk, when he wants to and how much he wants. No more forcing a specified amount into his tummy. He eats when he wants now, and that is such an awesome feeling, although scary. For over ten months, we measured out his food, worrying over how much protein and calories he got. Now, we leave it up to him.

Gone are the horrible smelling medications he had to take three times a day. Now, those two medications are replaced with about seven. All but one, maybe two, of these medications are temporary. As the days turn into months, the doctors will take him off these medications, until he is down to one immunosuppressant.

Gone is the late night tube feeding. Now, we can all be in bed by 8 o'clock if that's what we want, and sometimes, that's exactly what I want.

Gone are the worries of having to feed him when we are out running errands. Now, we can just buy some milk or food that he likes while we are out.


Gone is the question of whether Caleb is getting sick, if his ammonia levels are rising.

Life is so different in our house, and it feels awesome.

 

It took a few weeks, but we finally have Caleb back to normal. Our new routine consists of medications and appointments, but they don't dominate are week. Soon, Caleb will start physical and occupational therapy. He is down to lab work just once a week. Once we get this button sorted out, we are hoping to space out his appointments to once every two weeks.

He is doing beautifully. The donor is doing awesome. We are so blessed and so thankful.


2 Samuel 22: 2-4
He said: "The Lord is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge, my shield and the horn of my salvation. He is my stronghold, my refug
e and my savior, from violent men you save me. I call to the Lord, who is worthy of praise, and I am saved from my enemies."

Psalm 100:4-5
Enter His gates with thanksgiving and His courts with praise; give thanks to Him and praise His name. For the Lord is good and His love endures forever; His faithfulness continues through all generations.