Tiny hand

Tiny hand
November 20, 2010 (one day old)

Lilypie Premature Baby tickers

Lilypie Premature Baby tickers

Tuesday, March 8, 2011

24 hours from now...

...our entire family, all four of us, will be under one roof.  OUR roof.  For the first time in 111 days. 

I spent four and a half hours at the NICU today and every minute, there was someone talking to me, reassuring me, filling my head with information, things to remember, things to do, things not to do.  I talked to the nurses Carrie and Kathy, Annie the fellow, Carrie the resident, Freida the developmental therapist, Virgina the lactation consultant, and Pam the discharge coordinator.  The good news is that I do feel better, more confident that he should do o.k. when he comes home. 

I got explanations from the docs about a couple of major concerns I had regarding Cayden's recent bradys and ability to ingest enough calories now that he's having to get it all of his own effort.  Yes, his heart rate dropped and his oxygen saturation decreased - once while feeding and once while sitting in a swing - but the fact that he was able to bring himself out of the bradycardia episodes without intervention is what matters.  Nonetheless, the docs said to avoid using a swing for now.  And he has just barely been meeting his minimum feeding requirements, but he has been gaining weight since they took out his NG tube, so again, that is what matters.  I just called to check on him for the night and his weight is up to 7 lbs. 3 oz.  He is going home weighing just two ounces less than Jamison weighed at birth - amazing!

We got prescriptions for medications.  I went to have one of them filled as soon as I left the hospital and found out that it requires compounding by a special pharmacy and will take two days to make.  Of course, that special pharmacy was closed by then and it's going to be another thing we have to squeeze into our already busy day tomorrow.  The Simply Thick we'll need to use is only sold at two pharmacies in the entire state.  I can order it online directly from the manufacturer, but who knows how long it will take to get it shipped.  One more thing to figure out how to handle in the next 24 hours!

We got instructions to make follow up appointments for his eye exam and hernia surgery, got handouts and took video of the therapy exercises, and brought home a HUGE bag full of expressed milk from their freezer.  The 15 cubic foot chest freezer we bought soon after Cayden was born is literally filled to the rim with breast milk.  Maybe I should get in on that new breast milk ice cream business that is the buzz all over the news lately??

Tomorrow is going to be even busier than today.  We have to figure out these prescription issues and get to the hospital as early as possible to be able to complete the discharge process.  Our angel of a daycare provider, Mayra, has offered to keep Jamison as long as we need to get home and settled with Cayden tomorrow, so that takes some pressure off.  I can't believe how different things will be this time tomorrow night!

So once we're home, I'm anticipating the worst:  isolation, sleep deprivation, and no time to do anything but feed the baby, pump, wash pump parts, and maybe shovel a bite of food down my own gullet.  I wonder how Jamison will react?  Will I have any time to pay attention to and take care of him?  When will I ever be able to shower again?  How is it going to work with home oxygen in our five-level home?  These are just some of the questions cluttering my mind.

The good news - and I am SO thankful for this - is that Jason made it home tonight at a reasonable hour, so we will both be able to hit the ground running in the morning. 

I'm hoping to continue to update this blog even after Cayden is home, but I don't want to make any promises about how often I will be able to do so.  Maybe once a week or so is reasonable?  We'll see!

Thank you to everyone who has followed along on our journey through this blog.  Thank you to everyone who has prayed, cooked or brought food over, stayed with Jamison, or just offered to do any of those things.  We couldn't have made it without your help.  It may be a year or more, but I look forward to the day when our lives get back to normal, when we can socialize with friends and have people over, and we will celebrate the miracle of Cayden's life and the treasure of good friends and family with one HUGE party!

1 comment:

Unknown said...

Tears just running down my face!! I can't wait to tell the kids!
There is a Walgreens in Lakewood that compounds. I know that isn't your neck of the woods, but the hours might be better for you! Actually, I am pretty sure it's a 24 hour location.