Monday, October 1, 2007

Life at home sweet home

let's just say that getting out of the hospital is trickier than it looks. It seemed like at the last moment they wanted to run just a few more tests--as if we hadn't been there for 3 1/2 months! Honestly. And another thing, speech pathologists are not my favorite. With that being said, it is so good tobe home! It is a ton of added responsibility, but it is soooo worth it. When we came home and said family prayers together that first night, it was like heaven being in our home all together.

Landon is doing good. I hate to say it, but he was not ready to come until this time. That's always hard to swallow, but it was true. It took that long for both serge and I to feel comfortable with landon and his issues. Also, Landon was just too fragile to come home until this little while.

So we came home on September 19, 2007 around 4:30 pm we left the hospital. Serge took Landon in the stroller for a "victory lap," he called it. all of the nurses came out to say good bye. It was a bitter sweet memory. We were glad to leave, but it oddly felt like leaving family. They were so good to us.

Almost every room mate he had said, "your kid is so popular. all these nurses come in and we ask them if they are the nurse and they say 'no, we just came to see how he was doing.'" Doctors who had worked with him would drag other doctors in to tell them about the remarkable progress he has made. It is just miracle after miracle. "Look how good the mayer kid is doing," they would say. It's, frankly a far cry from what they said origionally, which was, " Well, it's just the Mayer kid and nobody can figure him out."

After the second surgery when they removed the pericardium(heart sac) he has done so much better. Even Dr. Baily(who is probably THE pioneering doctor of heart transplants on infants), who has done thousands of surgeries commented, that it was so rare to see his issue. It is a miracle that they suspected it in the first place. I call it a miracle.

At home his favorite things to do are lounge in his swing, be kissed by Hayden and poop. Not that they happen at the same time, but he loves them just the same.

He is still working on eating. I had them send us home with a nose tube to feed himn with instead of putting another hole in his stomach for a G-tube. I thought I could work with him at home. Can I just say that miracles happen. When we came home from the hospital, he was taking on a really excellent try 17cc out of 60. Since we've been home and mom works with him on a bad try he takes 40cc. He has taken his whole feeding 2x, but it's rare. Such improvement!

Hayden is keeping me on my toes. He loves to get into things he's not supposed to at the most inconvenient times. Mostly when I'm trying to listen to landon eat. The other day he came out of the kitchen eating a stick of butter with the foil still on it. Today he was whining that he wanted to go swimming at 7am. It lasted until 1pm. Mommy put herself in time out several times. He also likes to have conversations with Landon. "Hi Hayden," he'll say for Landon. He showers him with kisses and loves. today he had to go to time out because he was trying to force Landon to close his eyes. He's talking in full sentances now and it's amazing. I love it when he thinks I should apologize for something I've done to him. "I'm sorry Hayden," he'll say to me. Then he'll say, "that's o.k."

Serge is liking his new job and enjoying school. I'm just trying to get enough sleep so i'm not a bear and to keep on top of the meds. The farthest anything is apart is 3 hours. asprin only 1x/day, Zantac 2x, Lasix and Aldactone 2x, phenobarbital and Kepra 2x, captopril every 8 hours, magnesium sulfate 2x, regalin 4x and McT oil 4x a day and feeds 8x. let's just say thank you to whoever created excel!!!

All of this said, I'm not complaining in the least. it's so sweet to give him a bath, lotion him down, dress him in his jammies, snuggle him close and rock him to sleep. Then have him right there. I must say that it is nice that he sleeps through the night. I love his little baby breath! He sleeps from around 10pm until 8-9am. I ofcourse don't get to not get up because I feed him through his tube and give meds all night, but he is sleeping great. He is gaining weight and just looking pretty good.

Thank you all for your prayers--they are answered


Laura said...

I'm so glad everything is working out like you knew it would! I need to come visit you guys soon!

Liz said...

Yay for miracles!

Ry Tam & Fam said...

Wow Sara, he is looking so good! I'm so glad you are home that has to be so nice! It sounds like you have a really hard job, just taking care of a 2 year old will take all your time let alone an infant that needs all your time! Man if we still lived across the street from each other I would come and take Hayden every afternoon so you and Landon could take a nap!

You are a trooper! Keep up the great attitude and wonderful sense of humor it will get you though most anything!

Our love and prayers are with you! Much Love, Tam

Amanda said...

I am so happy for you guys! It was so good to visit with you when I was back there. Tell Hayden I miss him. Landon is such a sweetie. I am sad that I won't be closer to watch him get bigger!
Love you guys!

Amanda said...

P.S. I need a hard copy of that picture of Hayden as a giraffe!!! Is there anything cuter? I think not!

Dextra said...

Well written article.