21 Days and counting...

It has been quite the week. We were too overwhelmed this week to write new posts, but here we are with a weeks worth of updates for you! And lots of pictures. Thanks for continuing to check in with us, we promise to keep it up.

Felt like this week beat us up. But here we are Sunday morning and we arent doing too bad. One doctor on the night shift came by and asked if we are okay. When we responded with  "We're good! How are you?", he laughed, shook his head and said "you're a strong couple". We are. We know that these terribly tough days will come and we know we will get through them. We just have to sleep, eat, take breaks and cry through them, and thats what we've done this week.

We had hopes that week 3 would bring stability. In reality, it brought tough decisions, infections for mom, more medications for both babies, lots of spells and desats, blood transfusions, puffy hands and more. There were some good things too though. The evening nurses decorated the unit with christmas lights and trees and wreaths and santas and more. It looks beautiful and makes it a teeny bit easier to be in there. Adam is having plenty of fun charming and teasing the nurses and ward clerks, also helping to keep it interesting!

Chase.

The week began with both babies' levels all over the place. They are treating Chase for meningitis so we were hoping that as the antibiotics kicked in, his levels and oxygen requirements would balance out. He is still working on that. Three weeks of one anti-biotic and two of another. Its never simple though. Chase has a duct open, a small valve between his heart and his lungs. When babies are born full term, their first big breath and first cry automatically closes that valve. With preterm babies they are given medication right away to try to encourage the valve to close, or else fluid is free to move between the heart and the lungs which can have severe consquences. Reilly's closed, but as the days went on they could hear a murmur in Chase's heart which led them to believe his valve was open. A few tests later and sure enough, it is. They treat with Indomethacin, two rounds and if that doesnt work they will take him to Sick Kids to have surgery to close it. Well they explained yesterday that when babies are fighting infections, like he is, that valve spreads open even further. So they started him this weekend on his second round of the medication, and our fingers are crossed so tight that they work, to save him from the surgery. It is amazing that something as simple as a cry, that we will one day be sick of hearing, can make such a difference in the beginning. Chase is up to 890 grams, almost 2 lbs!  (907g = 2lbs).  Here are a few shots of Mom holding Chase for the first time during a diaper change and Dad changing Chase's diaper!

 

Highlight of our week with Chase was that our nurse invited us to come during the incubator change. Every 7 days they change the incubator, or isolete. She said that if we were there, we could hold Chase during the move. With a nurse and 2 RTs, they carefully placed Chase in moms hands. Most amazing feeling ever. Expecting to hold him for only a minute or two, we were pleasantly surpirsed that he was handling it so well, no spells of desats, sitting comfortably outside of his isolete for the first time! They let us keep him for almost 25 minutes, the best 25 minutes ever, before he started to get cold. Here are a few shots from the visit. Soon we'll be able to do this more often, but becuase he is still intubated it makes it very difficult. Dad's turn next week! Its amazing how small he is.

Reilly.

Reilly's levels have always been up and down. They have said to us this week, many times, that her lungs are very very sick. They are saying that she has Chronic Lung Disease, but they cant actually diagnos her with that until she is 36 weeks. In the meantime they treat her as if she does. Chronic Lung Disease has many implications that we don't even know about. We know that her lungs need so much help and that they have needed so much help for the 21 days shes been there and it hasnt been getting any better. This week we were given treatment options for Reilly which really weighed on us. They were offering to give her steroids to help with the inflammation of her lungs which would hopefully get her off the high level of venitlation and lower her oxygen requirements. They dont offer it easily, because of the complicated list of short and long term effects. They explained that giving her these steroids, could mean lifelong severe challenges. They also explained that if we dont give them, keeping her on the venitlation  and oxygen she was at could also lead to the same challenges and long term effects. So do we give them and try, or do we wait and see if she pulls through on her own. What is we give them and she doesnt need them? What if we give them and they dont work? What if? They gave us plenty of time to think about it, offered second opinions, provided studies for us to read, but none of that mattered. We just had to wait until we felt comfortable with one of the options.
Promising the doctors and answer by Friday, Thursday afternoon we knew and before dinner Thursday she had received her first dose. We had to try. We arrived Friday morning for our visit and her oxygen was at 35%, lowest than it had been in many days, and was consistent. They werent chasing her around and she seemed comfortable. They explained that it was too quick to assume it was the steroids, but we knew she was headed in the right direction. Her day wasn't perfect, but as they often remind us- our babies are sick and are in intensive care. They arent being babysat, they are sick, so don't hope for perfect days, hope for small gains, and thats what we got on Friday! She'll receive the steroids for three days, then receive half the dosage for three days and a quarter for three days, slowly weaning her off. They say that sometimes once the babies are finished the course of steroids their oxygen levels increase and the doctors then decide to do another round or not. Some babies respond well and some dont. We'll have to wait and see. Here are a few shots of Reilly from the week. She was up to 670g, but back down to 620g last night.

Saturday was a bit more touchy, she was desating- requiring more oxygen when handled and at random times throughout the day. When we arrived late Saturday night for our night visit, one of the RTs approached us and said they were going to extubate her becuase her tube seemed to be clogged, and rather than just throwing a new tube in, they always like to give the babies a chance on a less invasive ventlator and see how they do. Chase has been extubated twice, once on Day 2 when he was showing off, and another during Week 2 when he pulled it out himself. But Reilly! They told us it would be a very long time until that tube came out. We were so happy to witness it. They removed the tube and placed a mask over her nose. She looked adoreable. They say even if it only lasts an hour, and then they have to reintubate, it is a good break for her lungs. They watched her closesly to be sure that she wasnt working too hard. We left at almost 2 am this morning with her at good levels. They said she wasnt working hard but that it could change at any moment. Hoping Shea kept her company through the night and gave her lungs a well deserved rest. Here are some shots with her new gear on.The picture above (at the beginning of the Reilly post) was during the switch, our first look at her beautiful face!

The tubes are attached to the hat, which helps keep everything in place. They realized that she had her mouth open, which allows for the pressures they were giving her to escape, so then they put a chin strap on her to help her keep her mouth closed. Adoreable beyond words. Afraid to call and hear that they had to reintubate, so we'll head in to see her soon and try to remember that even a short time without the tubes can help.

We'll do our best to keep updating. Dad is headed back to work tomorrow. He'll be working in Milton this week and coming back to Toronto at night. Cody must think we've completely abandoned him, although we're sure Grandma is giving him enough bacon that he isnt too upset. Thanks for your continued love. We'd be lost without it.