Tuesday, February 21, 2006

5 Months!

"For with God nothing shall be impossible" Luke 1:37

It's hard to believe another month has passed and Noah is 5 months already. He is 5lbs 13oz and 20 inches. This is huge weight gain for Noah so we are very pleased. We have started to slowly add the breastmilk back into his diet and so far he seems to be tolerating it ok and his weight hasn't shown a dramatic difference. So hopefully we can continue to feed him breastmilk with neocate. We have also managed to wean him down to 16hrs a day on the pump (9hrs at night and 7hrs during the day). Today we will see Dr Hancock and she will change his foley tube from a size 10 to a size 12.
Noah is struggling with a cold right now, we pray that it doesn't turn into anything serious. His LFTs (liver function tests) and BUN are all still elevated, likely still from the TPN, which means weekly bloodwork to monitor the levels and make sure they are going back down to normal. He is very difficult to get blood from, so these trips to the lab are rather unpleasant.
Developmentally, Noah continues to lag way way behind. At this point it is difficult to know how much is related to his chromosome deletion or spending half of his life in hospital. He is now seeing occupational therapy and physiotherapy once a month. So far we haven't found it very helpful.

Sunday, February 19, 2006

Welcome To Holland

This was passed on to me from a friend when Noah was in NICU. It explains this whole experience so well and I love it.

by Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Wednesday, February 15, 2006

1st Tooth!!

On February 6th, while in hospital, Noah got his first tooth! It is coming out at a strange angle in his top gum where his cleft is, but we think it's pretty cute! It's strange to see someone so tiny getting teeth. Sometimes we forget how old he really is.
Things are going well at home. The fundoplication surgery was a huge success. We don't know what to do with all those spit cloths anymore! He is doing well on the feeding pump and he is now 5lbs 11oz! If he continues to gain, in a couple of days we will reintroduce the breastmilk mixed with neocate and see how he does with that. I really hope things go well as our freezer is jam-packed full of milk! I am so thankful for a wonderful pediatrician and feeding specialist who are allowing us to be at home and working with us mostly over the phone.

Friday, February 10, 2006

Home Again!!

After a long, exhausting 30 day hospital stay, Noah is finally home! The last month has just been one hurdle after another and what we thought would be an overnight stay turned into an entire month! After the fundoplication surgery, Noah spent one night in PICU. The ventilator was removed after 24hrs and Noah did great. So he was transferred to CH5 where he continued to recover. No food was allowed for 3 days to give his tummy time to rest. Then feeds were started very slowly. With Noah it was 2 steps forward and 1 step back as we worked to get him back up to his full feeds. He continued to have difficulty with his respirations as well as alot of retching and gagging, so it took a week and a half to get him back to full feeds.
Early Tuesday morning, the day he was to go home, Noah's g-tube came out. We still don't know what happened, but it had come out sometime during the night. The stoma closes so quickly that by the time we noticed what had happened, it had almost completely closed. There was no way the g-tube was going back in, but they managed to get a smaller foley catheter in the hole. It will have to be slowly stretched back out so we can get the g-tube put back in. So we will see the surgeon in 2 weeks to have a slightly bigger catheter put in, and then when Noah has his lip surgery on March 13th, the surgeon will put in a button.
So it was decided to keep Noah until Wednesday to make sure all was ok with his tube and his feeds. Noah was miserable all throughout the night and that morning. The surgical nurse was all ready to pull out his central line so we could leave, when Noah spiked a fever. What a huge disappointment! This meant at least another 48hrs of antibiotics. His g-tube site was infected from all the manipulating that had happened the day before.
Today, once the blood cultures came back negative, Noah's central line was pulled out and we were finally able to take him home! We are feeding him at home with the pump, which he will be hooked up to for 18hrs each day. He is still on Neocate formula and we will start to reintroduce breast milk on Monday, mixed with the Neocate to boost his calories. He is doing well and we are hoping to see some weight gain now that we are home and the vomiting has completely stopped. He will start seeing occupational therapy and physiotherapy each month to help him as he develops. We continue to be amazed at God's goodness and faithfulness. Noah continues to amaze us all and remind us over and over of the precious gift of life. He is so responsive and freely gives out smiles that melts our heart. We thank God for bringing us through this past month and that we can finally be a family again.