Here's your Baby!

Sophie hit 1227 grams Thursday night and was taken off CPAP at 12 pm Friday. This means that she is breathing completely on her own with no assistance and no extra oxygen. She is doing great. She still has moments of apnea where her oxygen level goes down, but she quickly recovers and does some quick breaths to catch up and bring her oxygen level back up. We are so proud of her. I told her she was the strongest person I know.


The best part of being off of the CPAP is that her face is visible.


We were both so excited to be able to kiss her face and to see her nose and cheeks. When we got there and saw her asleep in her isolette with nothing on her face I was so happy that I cried. I was so happy to see her breathing on her own and sleeping so peacefully. I was so happy that she is older and more able to regulate her breathing. Mostly, I was just in awe of how incredibly beautiful she is. I thought that this must be what it feels like to look at your baby for the first time after you give birth.


So many times since she's been born I've wondered about the "normal" birth experience we had all missed out on. There have been times where I felt cheated out of my pregnancy experience and wished desperately for that "here's your baby" moment that always seems so amazing on TV. Our experience was amazing, but we were never handed a baby to hold and marvel at. This, the first time I've seen my beautiful girl's face almost completely unobstructed, knocked the breath out of me. I feel as though I got my moment. I keep getting my moments. Every day there seems to be some new opportunity to touch her, bathe her, dress her, or change a diaper. We are invited more frequently to take part in her care. This only makes me yearn for her to be home even more.

I don't know what it will take for her to come home. I'm not sure if we are looking at weeks or months. All I know is that every other night, when she gets weighed I pray for that magic number to go up faster. I just want my baby girl home. We both miss her so desperately. Every visit we wash our hands before we go home so that we can smell the soap that reminds us of her. Kie and I both have had excited moments when, late at night, we have found a spot on a hand or on an arm that has remained untainted all night and still smells like Sophie. We close our eyes and inhale it deep while dreaming of the day she will be home with us.

Sophie's Patrice

Sophie is having a wonderful time with her nurse Patrice. She bundles her up and tucks her into bed so perfectly and I can tell she loves it. Patrice taught me that Sophie likes to have her head and mid section covered with both hands. It makes her feel safe. Lorraine and I couldn't make it to the hospital yesterday but we felt secure knowing she was with Patrice. Thank you so much.

Sophie is slowly gaining weight and it really shows on her legs. Her last weigh-in was 1186grms.... she's so close to 1200. My father last saw her at 886grms or so and he noticed she looked much more baby like. She has some chubby cheeks now.. at both ends of her. Also her feeds are gravity fed, 'bolis' method I think it's called. It takes her 10 minutes to eat and now she seems to wake up early before her next feeding time. She gets 16ml every 2 hrs and I think they will increase that. She gets weighed again tonight so hopefully goodbye cpap.

Here's a picture of Lorraine drying off Sophie after bathtime.

Happy Birthday Dad

This is my(KIE) second post and I want to share a memory with you.
My dad makes me feel safe. When I was little my favourite thing was spending time with my dad. I used to lay on his chest while he napped and I can remember he would take a deep breath in through his nose... pause .. then 'pooof' slowly exhale from his mouth. I would rise up and slowly sink back down. I felt so safe and comfortable. I think my Sophie feels this way with me.

Eye-solation

Well, it's been a pretty eventful couple of days. Thursday we decided to stay home, figuring that Sophie had been doing so well and we needed a break. Kie called to check on her, and they said that she was in isolation because she had contracted an eye infection from the water in her CPAP. I was really worried that this infection would be a setback, or that it was the start of the scary stuff we had managed to evade so far. On the rollercoaster ride of having a preemie, I didn't know if this was a little dip or a slow approach to a huge downward plunge. We were really concerned and felt a little guilty for not being there for her.

Friday we went up and met with Bonnie, her day nurse, (who is amazing) who let us know that Sophie had NO problems, just a simple eye infection that wasn't a big deal and that we get the bonus of having her in a private room. Sophie had been moved from her spot in the NICU (which is kind of like a ward with 2 beds on each side) to a private room in the back of her "pod" (which is how they refer to the wards). She has her own sink and table and a window with a view. We have to wear gowns when we go in (to keep from bringing any bacteria into the rest of the pod).

Other than the gowns and the new room assignment, nothing much was different. We were really pleased to see that she was doing so great. She's just getting some antibiotic ointment put on her eyes to stop the infection. She didn't seem bothered in the least...she didn't even seem to have any yuck in her eye. She has gained 62 grams since her last weigh-in...she hit 1110 grams! They told us that when she gets to 1200 they will try her off the CPAP again. She really looks so much bigger and sturdier. She is getting dimples on her knees and a pudgy face. She has way fewer spells of apnea so we think she will do great when she's breathing on her own.

We got to do bathtime and cuddle for a long time. We helped nurse Marion (our favourite) with washing and drying. Enjoy the video....we enjoyed our time so much.

The Kilo Club

We were ecstatic to be there tonight for Sophie's official weigh-in and entry into the "Kilo Club"....she has finally made it over 1000 grams! (Imperialites - that's 2.2 pounds). As you can see, she weighed in at 1029 grams, which means she has almost gained a pound since she was born.

After her weight and bath, Sophie spent some time with her Daddy. My instincts made me want to scoop her up and steal her away, but I know that Kie needs her just as much as I do. He hasn't held her for quite a while, and he really needed to feel her in his arms.



Sophie has spent a lot of time in our arms, but her first cuddle from a grandparent came from Grandma, who really needed it. Grandma said it was just like medicine.



Times have been pretty rough for her lately, and some special Sophie time was just what she needed. She said,

"We can’t wait to get her home and hug her. I think it will be 8 more weeks and we will save up the cuddles. We love you Sophie! Thanks for your courage and strength and helping us all to get through these difficult times. Uncle Gord is rooting for you."

Sophie's doctor said that she probably will be staying in Hamilton for some time, which is a mixed blessing. We are so confident leaving her at McMaster. The care is amazing and everyone there is really professional and so kind. We just want to pick up the building and drop it a little closer to home. I worry a little about driving in the winter, and I really wish sometimes I could just drop everything and go for a quick cuddle.

Sometimes I feel like my baby is still in utero.....just not mine. It's weird to hear the nurses talk about her as her gestational age (she's 34 weeks now)...it's like she isn't real yet...like she's not "done". Kie's mom and dad talk about how amazing it is to be able to watch this process - to see a baby grow. We really are lucky to know Sophie and see her grow as she should have inside of me.

I have to admit that I had been feeling really guilty that I wasn't able to keep her growing in my body. I thought that the way this happened wasn't right, and that I had put Sophie at a disadvantage by not being able to continue the pregnancy. With all of the amazing comments, thoughts, gifts, and prayers we have received on her behalf, I feel like this is really how it was meant to be. Sophie's experience is touching so many people in so many different ways. She is not yet supposed to be born, and has already taught us so much. I am so proud to be her mom and I feel so honoured to have been chosen to be her parent.

Thank you all for your amazing response to our beautiful girl.

The Grind

Hey everyone

We went up today to meet with Sophie's new doctor and to have a visit with our girl. We usually meet once a week or so with the doctor, nurses and social worker to get an update on Sophie's progress and to ask any questions or discuss any concerns we may have. It is really amazing to have all of these people in our corner, helping our girl to grow and supporting us through this process. Today's meeting went really well. We met Sophie's new doctor and he let us know that she is doing really well. They have done all the investigation possible to try to find out why she is having so many apneas (forgets to breathe) and bradycardias (where her heart rate goes below 100), but ultimately it's because she's little and it's what preemies do. I had hoped to hear she'd be home for Christmas, but the doctor said 7-10 weeks until she's ready for that. Basically, we are just waiting for her to grow.

We're so fortunate and grateful that her stay in the NICU has been pretty uneventful. Her journey could have been a lot scarier and had more challenges than what she has experienced. I think, though, that this point in the experience presents a different set of challenges for everyone. We have to wait and be patient for her to grow. I have never been very good at either waiting or being patient. I always pop the toaster before it does it on its own....

Kie and I have been trying to balance our "normal" life with the NICU experience, and it wears slowly on our souls. We ache for our little girl. We want her home with us and we want to experience what it's like to be parents without nurses and doctors and machines. We want to hold her without a time limit. We want to change her diapers and bathe her ourselves. We just really feel ready to have our girl home with us and to start our new lives as parents. We just have to wait until she's ready for that, too.

The past month has been so difficult, and I keep trying to find reasons or lessons in what's going on. With Gord's leukemia and Sophie's early entry into the world, it's been made crystal clear that we have to make every moment count. I guess all of this time spent waiting and watching her grow just makes us more aware of how every single moment of our time with her is magical. I just want to write it down so we remember this when she's screaming in the grocery store, or when she has a keg party in our house when we're away on vacation.

Dad's First Post

Hello all, this is my first post as you can tell by the title. Well my wonderful girl is having a great night. She is spending the night with her (mom&dad's) favourite nurse Marion. Sophie got to come out for some much needed kangaroo care. I let Lorraine cuddle her first, just cause Sophie asked for her. Looking at my wife and daughter together instantly melts my heart. The way Sophie 'sinks' into her mom's chest, you can tell she needs her momma. When she rests on her mom, I can see her numbers reflect her happiness. She had no 'spells' while sleeping.

Finally it was my turn. Lorraine had to restock Sophie's milk supply. She definitely didn't want to leave her mom and started to cry a little. She shifted and rustled until she was comfortable. Then for about 3 minutes she was wide awake looking around. She could hear all the alarms and bells going off and darted her eyes to the right. She is so smart, I can tell she hears things the way I do. In the next instant she was asleep. She tucked her hand under her head and dozed off to sleep. This was my second time doing kangaroo care with her so I really enjoyed it.

Baby in a Bucket

I think this is my favourite picture. Sophie got her first bath in a "tub" (which was more like a 2L ice cream container) and she loved it. They don't normally do this, but her nurse wanted us to get a cute photo...I think we succeeded.

Sophie is still doing really well with her breathing. She still has short apneas, and her oxygen levels go down, but she can bring herself back up fairly quickly. Sometimes she needs to be shaken to get her to wake up and breathe, but not as often as before. Her feeds are going great and she is eating 10.5ML every 2 hours. They think she may have a reflux problem, so they're giving her medication to help her move it all along.

She is really such a light for everyone, and we are constantly amazed at all of the smiles that she brings from people. Even people we have never met have left comments on her video for her and are cheering her on. Thank you so much everyone.

Still shining

The past few days have had us thanking our lucky stars for our beautiful girl's continued growth and good health.



We've been spending a lot of time doing Kangaroo care, where we get skin to skin contact. She has been spending a few hours zipped into mom or dad's shirt most visits this week.



Yesterday, they tried her off of her CPAP, with only little oxygen prongs in her nose. We got to see all of her beautiful face, and she was so alert and happy. She did really well breathing on her own, and we are hoping that she can stay off of the CPAP from now on. She's little, but really strong, and she keeps surprising everyone with her capabilities.



She has been consistently gaining 30 or so grams every 2 days or so. We were amazed last night to see her get on the scale and have 859gms come up! She gained 54 grams in the past 2 days. She keeps getting bigger and is looking more and more baby-like every day. Her weight gain has revealed big cheeks and a cute little pouty chin that we think looks like Kie's dad's.





After her time on the scale, I got to hold her in my arms. She tried on the little hat that her Grandma made, and she just looked so cute staring up at me. Her eyes are so big, and when she was all swaddled up she reminded me of the tiny, tiny baby with the big dark eyes who stared out at me before being rushed away when she was born. It's hard to believe that over a month has gone by since then. We are so grateful that this amazing person has chosen us to be her parents.



Holding her in my arms makes me want her home even more. I'm not sure when she will make the move to the hospital in St. Catharines. When we first met with the doctor, he told us 6 weeks...it has been 5. It seemed impossible then, but she seems to be meeting all of the milestones they set out for her. It seems like time has gone so fast even though sometimes it feels like forever. We can't imagine our lives without her. I can't wait to have her home and cuddle her whenever we want.

On we go!

Hey everybody!

Sophie is still doing so great, we couldn't be happier with her progress. She is showing us all that she is a mighty force in a tiny package.



She's growing really fast now that they are adding fortifier to her milk. She gets weighed every other night, and she has gone from 716 to 747 to 773gms (1lb 11oz) in the past week! She was having some trouble with apnea again, but she seems to do it when she is uncomfortable. When they moved her feeding tube from her mouth to her nose, she did a lot better and now she very rarely has to be helped to breathe again. She continues to amaze us with her strength and courage.

Halloween in the NICU was pretty quiet, but our girl made a stir with her first Halloween costume. Of course, we forgot the camera on this most important day, so we only have some poloroids the nurses took. (We are going to try to sneak her hat back on so that we can get some better pics soon!)


Here is a pic of her hat....everybody loved it and it looked so cute on her little head.


Yesterday we had a great visit. Kie got to change her diaper and give her a little sponge bath. When she was all cleaned up, she spent over an hour in his arms, and they both loved it. She settled right in and fell asleep with her soother. He almost fell asleep, too. I love to see the look on his face when he looks at our girl. We both love her so much.



We're so glad that she is doing so well. My brother Gord was diagnosed with ALL (Acute Lymphoblastic Leukemia) last week, which came as a complete shock. It has been hard to deal with this news AND to take care of our Sophie while still keeping up with our day to day lives. Having Sophie has made it easier for us to be strong and to help support Gord through this. She has shown us that strength of spirit overrules the physical, and to enjoy and be grateful for every single minute of every day. Please think some good thoughts for Gord, who is starting chemo this week.