Home (sort of) for the Holidays!

I lost it. I cracked....

Friday the 21st I went into McMaster to visit Sophie and heard, yet again, that there were no beds available for her to be transferred to St. Catharines. The nurse asked me how I was doing and I said:

Fine...............no wait.
Not fine. (*queue the uncontrollable sobs
and ball-bearing sized tears)
You need to go get the social worker
(Karla). I need to talk to her now. I'm done. I'm done.....
I'm taking my baby and I am going home.

So, Karla comes to see me and explains that there's nothing they can do, and that it would be unethical for me to take the baby now, and that it's only a little while longer to wait for a bed and that she thinks I need to go home and rest....yadda yadda yadda. I continued to cry and beg for them to do anything ANYTHING to get my girl closer to home and out of the level three NICU she had outgrown. I even told them to ask St. Catharines if I could put her in a box in the corner of the old people's ward and I would stay and care for her myself. I hit the wall.

Then, like out of an O.Henry Christmas story, a magical thing happened. A nurse practitioner named Sandy came over to me and told me that she would do her best to make things better for me. I had never seen her before in all of our time at the NICU, but here she was and she was going to help me! She disappeared into the hubub of the NICU and left me to wipe my mascara tears off of Sophie's head. Shortly after, she reappeared, and let me know that there was a bed available in Niagara Falls and it was ours if we wanted it. YES! WE WANT! WE REALLY WANT!

I love you Sandy nurse practitioner. I have a fantasy that I call the McMaster NICU and ask for Sandy and they say, "Why, there's no Sandy that works here...." and then a bell rings and I know that Sandy got her wings....

This is the first Christmas in my life that we didn't have a tree. We didn't buy gifts for each other and we didn't bake. I have a Christmas theme every year and for a year in advance I am preparing a gift wrap and decor colour scheme. This year there was only hurried wrapping of a few simple gifts with no thought as to how they would look together under a tree. Somehow, though, we still had Christmas. Spending our afternoon with our beautiful girl and our families and being so grateful for what we have made it through...being so grateful for the people we share our lives with. I'd like to say that I found the true meaning of Christmas....but I still missed baking, shopping and wrapping gifts in my extra special way. We're having a family Christmas in January, when we can all be together.

So, long story short....our girl got her wings and came to Niagara Falls to spend the rest of her time growing in the NICU there. Our amazing holiday was spent letting various family members hold her. The most amazing thing was seeing my brother Gord hold my daughter for the first time. They're hospital pals and all we wanted was for them to be home for Christmas together.

So, we got our Sophie sunshine home for the holidays, but she still isn't home home. She is gaining weight steadily (she's 4lbs, 4oz now) and has no more tubes. She eats from a bottle and is still learning how to breastfeed. She doesn't have a lot of stamina, so I don't make her try for too long, but I've been pumping for 3 months, so I don't want to give up now. She is still having little battles with reflux, and desats to the '80s once in a while, but she is really stable and looks just like a newborn baby. Her due date was January 4, so we hope she's home by then.

In town on the clown

We've spent the last week in Hamilton thanks to Ronald McDonald house. Ronald McDonald house makes it possible for families with children in the hospital to stay in town with them for only $10 a night. They also provide dinners, free laundry facilities and soap and free long distance anywhere in the world. When we arrived at the house we were greeted with a hot dinner and an amazing room. It's huge and clean and has a four poster king size bed. It's nicer than our house.

The incredible kindness and my gratitude for the people at the house started me thinking about all of the hands that have helped to support us along this journey. I thought about Dr. Nwebube in Grimsby, whose gigantic hands wrote my blood pressure prescription and ensured the safety of my baby while in utero for those weeks. I thought about all of the nurses in Grimsby, especially the one who massaged my neck the night I couldn't sleep because of the pain and worry. I thought of the hands of Dr. Patricia Smith, who was the first to touch our Sophie and who welcomed her with the words, "It's a tiny tiny baby girl..". All of these hands, all working together to help us, to help our baby girl. More hands, in Hamilton, the amazing nursing staff of the NICU, who taught us how to use our hands to soothe Sophie back to sleep.The hands of Dr. Marrin and Dr. SantAnna, who kept our girl safe. Finally, I thought of the hands of the people who made the dinner for us at Ronald McDonald house.

All of these people worked together without knowing each other and without knowing us. All of these people gave so much kindness and gentle care to our family. All of these amazing people who just do these things because it's what they do. I am in awe.

Sophie is doing amazing. She weighs 3 pounds 7 ounces now. She's on the path to come home. We met with her doctor yesterday and he said that if she gets another negative eye swab on Tuesday then she can come out of isolation. She can then be transferred to St. Catharines if they have space for her. We just love seeing her blossom and it's really like she's a newborn, even though she's 10 weeks old. She cries and smiles and is learning (slowly) to breastfeed. I told the nurses that I feel like breastfeeding this 3 pound baby is like trying to park a Buick in an econo spot....

We are going crazy wanting this to be over. Both Kie and I feel exhausted, like we need a vacation, and the hardest part is coming up. Sometimes it feels like we've been running a marathon and we're almost done - until someone moves the finish line a little bit further away. The only way we've made it through has been on the support of all of your hands, our families and friends. We love to read your comments and they keep us going. We thank you all so much.

The road home

Hey everyone

It has been a whirlwind of activity for the past few days, with Sophie getting better and better and gaining weight like crazy. It seems like all of a sudden she was a big healthy baby and the nurses started to talk about her going home! HOME!

She's still in isolation while we wait for the result of her eye swab for the pseudomonas bacteria. You really can't tell she has any kind of infection, and she just seems to be getting bigger by the minute. Her nurse (Bonnie, who we absolutely love) is working to get her into a cot in the next few days. Bonnie is working with us on discharge planning, so she lets us take Sophie out of her isolette, bathe and diaper and dress her on our own. I love taking care of her, and it makes me want to hurry her up to get home.

In order for her to be discharged, she has to be off of the caffeine, have had no spells for a week and breastfeeding every meal and gaining weight. It seems like a tall order, but our girl is up for a challenge. Bonnie said we're probably looking at 3 to 4 weeks. It's hard not to try to push her to get home faster. I would love to have her here for Christmas, but she needs to come when she is really ready. I tried breastfeeding for the first time on Sunday, and Sophie did really well. She didn't fuss too much, and even took a couple of sucks. Yesterday we tried again and she did even more. Bonnie said she's a smart girl. We think so too.

All of this talk of home made us realize how incredibly underprepared we are to have her here. Once she is breastfeeding, I have to live with her at the hospital, and I haven't got her nursery ready at all. We've scurried in the last couple of days to register for baby stuff, find a car seat, look at cribs and furniture, buy paint for her room and clean it out to get ready for painting. While we were at Toys R Us last night looking at car seats, I had a sudden surge of joy that this moment had come. We are so very lucky and grateful to have our beautiful girl, and I can't wait to have her at home. I have a feeling that I have absolutely no idea how much my life is going to change when she's here but I can't wait to see what it will become.