Time flies over us, but leaves its shadow behindnathaniel Hawthorne
Yesterday marked four weeks since Corbin was born. We are now on week five of NICU. It feels never ending. Some days are very good, and some days are very NOT good. When the baby has a good day, I have a good day. I feel like that is a specific aspect of parenting that will never go away. All of the baby’s current issues, the ones keeping us from going home (That we know of) are due to his pre-maturity, and not his Spina Bifida. Everything related to his Spina Bifida currently is going as well as they could for the most part. We had a recent brain and spine MRI, that looked awesome. His Neuro surgeon was very happy with his brain scan, and his healing. He related that he wants to see us in six months, and then again at a year, to make sure kiddo is doing well.
He is getting the hang of oral feedings, but gets tired easily and so the amount isn’t consistent, which is a big thing the Neo-natologist will look for before we can go home. He was taken off all breathing assistance today, but we have made that step before to then be put back on 12 hours later. We had a really low saturation dip earlier this afternoon, and I am anxious about the same. They were unsure if it warranted putting him back on support or not. Tomorrow we are taking a class on how to replace and feed through NG tube, as we may be discharged with him still partly tube feeding, they also are up in the air about an apnea monitor. He is currently being casted for his club feet, and his feet were SO swollen and bruised this morning when they checked on him that they decided to give his little lets and feet a few days off to try and heal. They looked so painful, and while they didn’t look like they were bothering him, it broke this mom’s heart, and I am worried about it leading to skin breakage and or infection. That will push everything back even farther, and I dont want to push any orthopedic timeline back even further for the little guy. Overall today was wrought with a lot of steps both forwards and backwards, and I am feeling extremely frustrated.
Some positives today, the baby is now wearing adorable little outfits. He is allowed to have crib toys like soothers, and mobiles, which he loves! His favorite is a little Baby Einstein Aquarium that lights up, makes water movements, and plays classical music. He is awake more often now, which means we get a lot more eye open time, and can see his little smiling face and touch his chubby little cheeks. We are allowed to do more of his care now that he is hooked up to less equipment. I’ve never been so happy to change poopy diapers! We found a collection of baby books and have been able to read to him while he is awake, I especially love when my husband Jesse reads to him and does all the voices. It makes my heart explode to see them bonding, and the baby smile at the sound of his voice.
So there have been some positives this week! Lots of ups and lots of downs. I feel like a metronome with everything giving me whiplash. Emotional backs and forths, monitors constantly beeping, loud noises, no sleep. Lather, rinse, repeat. I am lucky he is in good hands, I am lucky he is safe, I just so badly want to be done with this chapter of our family experience. I want to flash forward to family dinners, and bedtime stories, and picnics, and swimming lessons, and be away from the constant hum of hospital monitors, and the lingering smell of hand sanitizer.
We have been in discussion with the Nurse practitioners about discharge timeline. We are going to get lessons on the monitors and NG tubes in case we have to go home with them. I would really prefer not to, which could also mean more time in NICU, so its all very overwhelming. Do we go home with monitors, so that we get to go home. Do we stay longer. What do we do.
I feel like I live in limbo. I so badly want to take the next step.
Please be strong baby, I love you! You are doing amazing, mommy just wants to go home and start our life together. You are incredible. ❤