"Whether we are filled with joy or grief, our angels are close to us, speaking to our hearts of God's love."

Thursday, July 22, 2010

July 24, 2010

They cut back Benjamin's calories this week because he's been gaining so well (he lost 7 grams yesterday, but overall he's averaging more than 30 grams/day). The chuncky monkey is about 7 lbs. 3 ozs! He's been drinking his bottle like a champ (he's up to 7 parts breastmilk and 3 parts fortified); and because he loves it so much, they've increased his bottle feeds from 10 mls to 15 mls. After he gets a bottle, his nurse will bolus feed another 15 mls (the milk hangs from a syringe and drains through his ng tube by gravity over a few minutes) and then they'll run another 31 mls by continuous feed over an hour and 45 minutes. During the last 10 minutes of his continous feed, he gets extremely uncomfortable (tons of gas and reflux) so we're not sure this is the best feeding plan, but it's keeping him satisfied and he's obviously absorbing plenty.

He had a minor setback this week. He got his 4 month immunizations on Tuesday and had a reaction to them. He was super irritable Wednesday and his cry wasn't a hungry cry, it was more like an "I'm in pain" cry. He was spelling more than usual and there was definitely something wrong. When we were changing his diaper we noticed his right thigh had a red lumpy spot about the size of a quarter around the area where the shot went in. The doctor marked the outer area with a pen so they could make sure it didn't spread, put a heating pad over it, and ordered more Tylenol. As of yesterday, it looked much better and he seemed back to his normal self.

They actually tried to take him off the oxygen a week ago and he lasted about an hour before he started losing his saturation. He's been weaned down to 25 mls and most of the time he manages to get the prongs out of his nose (at times they end up almost in his mouth or sitting on the bridge of his nose) so he's barely getting a whiff. Apparently he needs just that little bit though! Because he's been so reliant on his oxygen, he had an echo this week to rule out Cor Pulmonale (a condition in which the right ventricles of the heart become enlarged and thickened and result in heart failure due to pulmonary hypertension). Thankfully his heart looked fine! They'll repeat the echo in a month to see if there are any changes.

The big question everyone keeps asking is when is his surgery going to happen? The answer our friends is not too soon. The bigger, the better. We know his surgeon's in no rush, and we obviously want to minimize his recovery time post op, but we would like to get him home at some point!

Although I love being one step down in the Special Care Nursery because it's not so intense as the NICU, it's still hard because we see families getting discharged after only a few days or weeks all the time. Last weekend I was in the elevator on my way up to see Benjamin and there was another couple in there with parent badges. The dad noticed mine and said "you're part of the club too huh?" I said "yup, we've been in the hospital for 130 days... we were here for 2 weeks, went to Children's for a few months, will be back here for awhile and then back to Children's... how about you guys?" I don't think the dad really knew how to respond and said "it's only been three weeks." I think their child was discharged a day later. We're at the point where we want to take our baby home. I want to be there in the middle of the night when he screams to rock him, and more importantly, I want him to bond with his sister. I won't lie, this has been extremely difficult for her.

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