NICU Punching Bag

Sara and I came down to the NICU late this afternoon;They have have special "family" rooms...Little rooms with a bed and bathroom, maybe a little better than motel 6. Families with NICU kids are allowed to stay in  for up to 2 nights a week, which makes it easier to catch a nighttime "care time" and the morning rounds. So, we are settling in for the night.

The "family room"

Every day in the NICU that goes by, we are faced with new challenges. I think the trenches of the NICU are similar to the stepping in the ring with Muhammed Ali....A right hook, a few body blows, a left, then an uppercut.....You get knocked down, get up, then get knocked down again.....Your simply trying to stay alive; keep your head down, dodge the next haymaker knockout blow, and keep going. I liken the feeling to be a punching bag. Every time I get get punched, I absorb it, and then get ready for the next one. They seem to never end.

Its been exactly one week since the girls were born. In a "normal" pregnancy we would be home by now, enjoying no sleep and a crying baby all night. Instead, we are spending nights getting restless sleep. I never thought I would yearn for the sound of a crying baby in the middle of the night.

Sara is pumping every 4 or 5 hours in the night, and storing the milk in little containers to bring down to the NICU. Her milk has really come in, and she is getting plenty of milk for both girls in their tiny situations.

Donna & Ashlyn

Ashlyn: We left the NICU last night with some positive news on Ashlyn. One of the doctors came running down the hall after us as we were leaving to tell something good. Her PDA, the duct in the heart, had reacted well to the indomethacin treatments. It had been downgraded 2 stages. From Severe to moderate and then from moderate to minor! This was welcome good news, really the first we have received. It was great to go home to. This essentially takes the PDA out of play, as its closed enough that unless she showed very bad symptoms, they would not do anything further about it. I'm calling that a win, and checking the PDA off the list.

Tonight we came in and were feeling optimistic about last nights events. Unfortunately, we learned some more bad news.

They stopped one of the two antibiotics Ashlyn is on because she doesn't need it. Why doesn't she need it? Because they found something, and this particular antibiotic
doesn't treat it. They have found a very small Staph infection near near breathing tube. As Amy, one of the NICU doctors put it, "we grew just a very few small cultures from it, so its very small. We are treating it, and don't expect it to worsen."

Hanna

Anytime you hear staph infection, you don't get all warm and fuzzy.

After the infection news, the two NICU doctors continued how well Hanna was doing, and how stable Ashlyn was................

I saw it coming.....I could see that they had rehearsed their lines, and were forming a delivery.........Sara was oblivious, but I saw the body language of these ladies, and my fighter instinct kicked in....I braced myself, tightened my stomach, and got ready for the next big punch to the gut.

They told us that a scan had revealed small brain bleeds in both girls cerebellums. Hanna on the right and Ashlyn on the left. The first thing I thought of was "wow, this means they really are mirror twins...they really have almost identical characteristics on differing sides, how cool..." Then I thought again, and decided not so cool. They explained that these brain bleeds were small, and found in the cerebellum, the motor control area of the brain.

Hanna closeup

My heart sank; I felt the familiar feeling of the tears coming, but I held them back. 7 days in the NICU has taught me to be a pro-fighter, and I took the blow and didn't squeak. I saw the look on Sara's face;  I knew she was caught by surprise by that punch, and was knocked to the ground.

A quick "google doctor" on the subject shows higher risks of cerebral palsy, other motor control issues, and lots of other fun problems. The NICU nurses reassure us that brain bleeds are very common in premature babies under 32 weeks, and usually will heal themselves. They keep trying to reassure us that everything will be fine.

We went to chipolte for dinner, and sat in silence eating burritos. I asked, "Are we having fun yet?"

I'm left tonight with the following from a preemie blog post on a support group site....

Anonymous (8:17am) wrote: "what's the point of this? so, if your preemie has a bleed in the first few days of life you are supposed to...
A) discontinue life support
B) become depressed b/c studies show you *might* be raising a special needs child
C) nothing
D) Tuck the info away in my mind so I may better understand my child in the future.

If this was a multiple choice test, I'd take B and C.....But it;s not so my answer has to be D.