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Wednesday, June 23, 2010

All along the watchtower..........

There must be someway out of here
Said the Joker to the thief
There is just too much confusion
I cant get no relief

One of the hardest parts about being in the NICU, and something that is hard to avoid when you have been there for as long as we have(108 days and still counting), is watching other babies come in, get healthy, and then leave. I know I know, you are not supposed to compare, you are not supposed to pay attention to all of the other babies, out there in the open, hanging out with their nasal cannulas or sometimes nothing, sucking on their bottles, satting in the 99's/100's, on 21 percent oxygen, with their joyful parents taking pictures, bringing in the grandparents to ooooooh and ahhhhhhhhhh...yea they make it soooooooooo easy for us not to compare our kids let me tell you. Yea they decided to put pretty much the sickest baby this NICU has ever seen(not my words mind you but pretty much any nurse or doctor I have encountered likes to regale me with that phrase)smack dab in the entrance where we get to see EVERY SINGLE PERSON AND BABY walk by and where we have a perfect view of the entire NICU, almost as if we were a guard of the watchtower(they do call him the mayor, a term they use for the baby who is currently the longest NICU resident).

Thurston has now been on cpap for 11 weeks and has been doing nasal cannula sprints for about 2 weeks now. He is satting anywhere from the 40's to the high 60's(again 21 percent being the ideal)There is always another kiddos stats up in Thurstons room so the nurse can keep her eye on the other baby(or 2) she is watching....always the same.....high satting in the 99's/100's(Thurston usually hangs in the upper 80s or desats). He is 15 and a half weeks old(almost 4 months old). He is now 2 and a half weeks past his due date(3 weeks if you count my obgyn's estimate). AND STILL no light at the end of the tunnel. Still has not taken a bottle, still with the g-tube, still laying in his little bed. I had asked the doc yesterday to estimate when he could come home and she refused. They dont like to do that in case they are off.....I mean its not like Thurston is a car that needs repaired or something..NOPE its just not that easy to estimate.

In the meantime, Chad and I are hanging by a thread literally. We dont see each other at all, we are the proverbial two ships that pass in the night. As soon as he comes home I leave and stay at the NICU for 4 or 5 hours, come home around 1230-1am pump and go to bed by 230am. I have started to go up now in the day as well as I found a sitter for Viola so I am able to go for about 4 hours in the day. Chad goes at 4pm every day(thank god his work understands our situation). On the weekends we take turns going in the day and at night. In between, I pump and Chad watches Viola. People keep saying, you need to take care of yourself...With what we have no time or money to really do that....we have no family here, and even though our insurance is covering almost everything, we have incurred unexpected expenses(almost 700 dollars in breast pump rentals and storage bags, who knows how much for the extra gas going back and forth to the NICU, money for child care etc.). I really dont know how much longer we can keep up this pace. It seems there is no end in sight.......

I thought of so many solutions to our flight Thurston to a NICU in Ohio near our family, bring Thurston home with a 24 hour nurse(doesn't seem likely), sleep at the hospital at night on the couch in the waiting room so I could spend more time with him........I am at a loss, unusual for me, a person who has always found solutions to any problem I have had in life.....

I broke down again today. I wonder if they could estimate how much and how long it will take to repair me........................


  1. Oh my I wish I could just come there and stay for as long as you need me..

  2. Never far from my thoughts sweet mama! What can we do for you? Meals? Night out for you and Hubby?

  3. The nurses have also told me things that I don't want to hear either like "she is the tiniest baby I have ever taken care of" (about Camdyn 1 lb. 2 oz.). Another one told us, "Oh, they are looking like babies now instead of fetuses." I had always thought of them as babies, and I didn't like being told that they looked like fetuses (even though they did). Maybe they need a few classes on bedside manners. I know it's hard but you have to hang in there and try to keep positive for Thurston. He proves how much of a figther he is every day!