Sunday, June 3, 2012


Pheww! We've been home for 2.5 crazy weeks now! Our life has once again changed and we are slowly adapting to a new "day" for our girl. I wish I could say the changes have been easy for us and everything has been smooth but I cannot. Our day is now centered around medications and TPN. We plan trips to the grocery store or other errands around when her g-tube is unclamped or the other parent is home. We are terrified to take her out of the house and expose her to illness. She always gets sick, but now when she has a fever we have to rule out a line infection. Our kitchen counter is sterilized everyday to make TPN. Yes, this as a nurse kills me! I am mixing TPN in my kitchen!! I hate it! I hate that my girl has to walk around with a stroller to carry all of her medical equipment. I hate that she has 3 different tubes coming out of her little body. I hate that she can't go swimming or play in the sprinklers, even a bath is major, stressful undertaking. I especially hate that once a week we have to go through the trauma of dressing change that wipes her out for the rest of the day. That being said, since starting TPN my girl is growing. She has gained weight and gotten taller for the first time since December. She hasn't need oxygen once since coming home. She is still wearing it when she sleeps but she just did her sleep study and I am hopeful we will soon be done with that. She is finally feeling better. Yesterday for the first time in 2 months, she went for a walk outside. She is getting stronger everyday. She is trying to jump again and she is almost running with her little stroller. She is still not able to go up the stairs but I know it is just a matter of time. For all these reasons I love TPN.

Our lives are getting ready to change once again. This is my last week in my current job. Starting June 15th I will once again be a nighttime-weekends only-NICU nurse. I have missed the NICU in the last 18 months. I will miss my current job also. I love working as an NP and my very special patients will always have a place in my heart. I have met amazing co-workers and have learned so much. I am looking forward to going back to NICU. I have missed my fellow nurses though they have continued to provide me with so much emotional support through our journey that I will always be thankful to them. And so we will have to once again adapt to doing things during the week with mom and dad on the weekend. No more days off together, no more weekend activities. But in doing this Audrey will be at home. We don't have to stress her body to go to daycare or be exposed to illness. We don't have to rely on other people to watch her carefully for all the subtle signs she has when things start to go wrong. This is the best decision we could make for our family right now so we will once again adapt and things will work out. Below are some pictures since we've been home...
At the hospital waiting to sign our discharge papers

Yay! After 22 days, we are leaving the hospital!!

The ride home. The excitement was too much for her little body.

After 22 days in the hospital bed, she is super weak and easily exhausted.

Thank you Dylan Gregory Hatch Fund for her giant bear!! (She had wanted this from Costco and I absolutely refused to buy it for her)

She is mobile with her doll stroller!

Yes she came home with parainfluenza 1 and rhinovirus, so it was a  week of nebulizers and and awful cough.

Her good friend Cat now has a matching GJ tube and PICC line

All hooked up for her sleep study, she's so good she didn't touch anything!

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