The L Word
NICU 20
Day 58
Gestation 31 weeks
Kayden is my last baby, I am so certain. I can’t do this all again. Difficult pregnancies, the surgeries, the constant poking and prodding to top it all off with months in NICU and SCBU. I can’t. No matter which way this goes, I am done.
I have dug as deep as I can into all the strength I have. This is all of it, this is everything I have. I have no more to give.
I have to go back in and hold him. The doctor popped in to apologise, even getting down on one knee by my chair. They were under the impression this was the second delivery of the news. I assure them it doesn’t matter. No matter how the news was told it is still the fact. The results of the brain scan remain the same regardless of the how or who said it.
We book a meeting for the afternoon so Lee can come. We burst our “bubble” with Julie to watch Sylvie. I still don’t know what to ask the doctors so I ask Lee if he can be our lead in the meeting. It’s too hard for me to talk.
It’s almost time for the meeting and I see dr optimist, our favourite, coming in the door. He says would we mind if he sits in the meeting. I am so happy to see him, I said I appreciate you coming. I whispered to Lee, look he’s here, Lee had called him to come.
The doctor from the rounds (I do know all their names) starts the meeting and explains for Lee what she had told me earlier. This time Dr optimist adds that he can see a slight change in the folds from the last scan. That’s huge, he is a leading neonatologist and we trust in him. He feels that it is likely delayed or developmental immaturity. He relates it to bed wetting as developmental milestone. Kayden also had a lull in growth at the beginning and the brain can’t grow if the body doesn’t, it all happens together. He is now catching up on his growth and tracking back up to the 25th percentile.
We talked a little bit about the long term. The doctor said she didn’t want to mention an L word but that’s the closest thing to what we are seeing. I already found that word, lissencephaly.
We decide it’s best not to go down an uncertain path and cause ourselves more stress and worries. I could mentally crash out and Kayden would feel it.
They will scan again in 2 weeks, the longest two weeks of my life. Then around full term he will have an MRI.
I asked if there was anything we could do to stimulate growth and the answer is cuddles. Lots and lots of cuddles.
When the meeting ends Lee and I chat, he represented us so well. We agree it’s worth sacrificing time with each other and Sylvie to make sure Kayden is held more. Lee said he felt more positive after the meeting and is going to stick with everything dr optimist said. I am scared and worried, I need the evidence to feel at peace. I need that scan to show folding. I wish we could have celebrated his IVH (brain bleed) resolving but this has overshadowed everything.
Stealing lunches seems pretty stupid now.