Big sister Nicole, at 14, wasn’t entirely sure about the baby to start with! But after she met him, in the NICU, she said “Most babies are really ugly! But, you know, he’s NOT.” She and he are redheads, so there’s that bond too! As time has gone on she’s yet to change a diaper but she’s used him for many Snapchat photos and she’s fed him a bottle or two, and is basically waiting for him to get older and more fun! I can’t wait to see their relationship grow, and even with the big age gap, I know he will always look up to her!

This was the family photo she concocted. I actually love it. 😂

Before we could bring him home, the Ginge had to pass the Car Seat Test. This is where the baby is strapped into their car seat and hooked up to monitors and for 90 minutes or 2 hours (can’t recall which) they have to maintain good O2 levels and heart rate and respiration’s. He passed, by the skin of his teeth! I didn’t get any photos of us as we walked out, with all our bags and most importantly, our baby! It was a very special journey home. I sat in the back with him and he held my finger tightly. And when we got home, he opened his eyes and looked around. Like he knew he wasn’t in hospital any more. So alert! The house suddenly felt fuller, our home more complete. I couldn’t wait for big sister Nicole to join us so our little family could begin our lives together.

Hmmmm not sure what triggered the finger this time, probably me saying 45mls was all he was allowed. This boys LOVES his milk. He went from 15ml to 30ml to 45ml in 3 days. By day 4 on 10East he was being offered 50ml and taking most of it most of the time! Amazing. So the decision was made to remove his pic line, that blue thing by my arm. This is the means by which he was being fed up til now. Fluids and lipids delivered via a central line right into his body. He was gaining weight well and looking plumper too especially now my milk was a food source! I lived watching his face light up as he ate. He started blossoming and looking so much healthier and plumper. On day 6 on 10 East there was talk of something miraculous. Going home. Both of us!

He smiles a lot. He always has! From not even a week old he’s been so happy. I like to think he knew his beginning was a challenge and so he’s grateful to be here. I know I’m grateful he’s here. And blessed. Not much more to say on that. The smiles speak for themselves and you’ll be seeing a lot more of them as this blog goes on!

After his first couple of feeds, he started passing out in my arms, with a sigh and a palpable sense of satisfaction. It made me feel really good, as I’d worked hard to build up a big freezer stash of milk despite my own medical issues!

With this new eating lark, came the new skill of trying to rip the nasal cannula off his face. Constantly. So the nurse basically had to duct tape it to his face! He still had a good go. We took this as a good sign. If he had the energy for mischief already, he must be starting to feel even better!

I think he knew we were on to him!

While I was inpatient again, our day consisted of me going to see him mid morning with the overnight pumped milk, I’d hang out a while with him, I think Jon was back to work by then so he would come after work and spend a couple of hours then drive home and sleep then work then visit. It was an ordeal, as we live over an hour from the hospital. But he came every night around 1130, bringing chocolate croissants from Au Bon Pain, and spent the time cuddling and singing to the Ginge. Very important bonding time for them.

At 8 days old we moved upstairs. The Ginge was in a crib instead of an isolette. And looked tiny! He now had to share a nurse with 2 other babies, which was a bit nerve wracking. But she was so responsive and calm and knowledgeable and I liked her instantly.

A brief interlude that’s all me me me now. I had taken a shower the morning before  and realized my incision was not just bleeding, but really bleeding. I got all in a panic and Jon drove me in to Boston back to the Brigham. (We had been home for 3 days. I don’t talk much about those three days as it traumatized me to come home without my baby. The house was full of baby things. Silent and unused. It felt ominous and wrong.)  At the Brigham the drs has a quick poke and prod and decided I needed emergency surgery for a massive hematoma. It was like a repeat performance of the c section: spinal, open me up, empty me out, only this time they didn’t sew me back up this time. Instead they left a 10cm by 4cm by 4cm hole, packed with wet gauze. Apparently it would have to heal from the inside out. Nightmare. I was readmitted for 5 days so at least I could walk/push the wheelchair over to Children’s with Jon. The wound needed repacking every 8hrs. It hurt.

Anyway, back to the Ginge. He had a swallow study on that first day up in 10 East  and to everyone’s delight, he passed!

This meant all that gorgeous fresh milk I’d been devotedly pumping and freezing every 3 hours could be used finally! His first feed was a meager 15mls and he sucked it down in a few seconds, then looked up at me as if to say “where’s the rest?!”

 

 

Life in the NICU is a weird paradoxical world where time stops and yet flies by at the same time. The Ginge, as he has fondly come to be known, remained seriously unwell but improved immensely by the day. Once the chest tube was out, his breathing improved, once he was on nasal cannula O2 his right sided pulmonary hypertension gradually faded, once the respiratory acidosis was rebalanced, his arterial line came out… we watched him with a mix of love and terror really. There were so many other sick babies around us, I waited for the rug to be pulled out from under my feet and for him to get sicker instead of more well. But he didn’t. We could start holding him. Which was the best feeling ever!

 

By day 6 they were talking about us leaving the NICU. I didn’t want to leave our safe little bubble of one on one care by phenomenal nurses, immediate access to every specialist known to man, the reassuring confines of the small car sized isolette with its warming lamp in the large noisy yet intimate quartet of bays. Yet I also knew that this talk of us leaving, meant we were graduating, which was A Very Good Thing. It meant he was no longer extremely unwell. He was almost too well to be in the NICU! Over the course of the next day we spoke with all the members of his team, all of whom knew him by name, knew us for being the rockstar redheads baby’s parents, and they all were excited and positive and proud of this tiny baby’s progress so fast! So, at 8 days old, my Ginger Warrior graduated from the NICU and we moved upstairs to the infamous 10 East!

A little tangent here, but I have to mention the knitted octopus in the pictures. There’s a nurse that knits these for all the NICU babies. I cried when I found out, as it seemed so very lovely, and then even more poignant when his nurse one day explained the reason she made them was the tentacles feel like the umbilical cord so many tiny babies can be comforted by holding on to them. Amazing. We kept the Ginge’s with him in hospital and now at home it’s kept safe for him to have when he’s older as a memento.

 

 

Four days old, and already mostly on room air, opening his eyes, looking around! I started talking more to

him as I noticed his he responded to my voice. I got these photos as I chatted with him. I swear he’s smiling. He’s not stopped smiling since!

About 36 hours after surgery, the warrior came off his vent, onto a nasal cannula. He seemed comfortable, a bit puffy from all the fluids and the trauma of surgery. His nurses complimented us on his hair and on his fighting spirit. Both were clearly related, in my mind! The hours passed slowly as I sat by his bed, touching him now and then, relieved he seemed in no pain. He did start having issues later on day 3 with his chest tube, signs of discomfort and breathing issues. They increased his pain meds but that didn’t help. His surgical team came by  and assessed him and decided that the chest tube could come out in the morning if he was stable enough. And the morning of day 4 his chest tube was removed with almost immediate improvement! The Ginger warrior was ready to handle things himself!