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Let see, what happened this week. Oh yes... Alyssa pulled her breathing tube out!! She was some determined to take that tube out and stress Mommy and Daddy out. We were just getting to relaxed and everything was going smoothly after her infection healed up, that she decided to cause a little bit of drama. And we were getting so close to the "planned" extubation. I guess this gives us a bit of warning for down the road that she really will have a mind of her own...there was a will to pull that tube out.
Courtney (one of Alyssa's primary's) was on during the day, and was doing one of her checks and noticed the endotracheal tube was much longer then it should be, meaning Alyssa gave it a good pull. So the call was made for RT to come over (I'm glad we werent' there at this time), and they completely removed the tube and watched her breath. Apparently she did quite well initially, so they skipped the CPAP step and went straight to high flow nasal prongs. She did well for the first day, it was so nice to have a cuddle without all the ventilator tube, however it was short lived. She loved the freedom of being able to turn her head from side to side without any fuss. She started getting a little stressed after the first night and day, and was having some dips in her heart rate and also in her Spo2, so they increased her flow initially up to 7 from 4, but then that didn't do the trick, so they switched her to the CPAP. I feel better with this because I didn't think she was ready for the high flow at the time anyways, but you never know until you try it. Yesturday was a great day with Sharla. She was on room air most of the day and her feeds started going up again. (They had to stop the feeds after she self-extubated to prevent any further stress for the first night....and then started them back up, and then when switched to the CPAP the feeds were stopped again...so hopefully now we can just keep going, so that she can get off of her IV). She is finished her 7 day course of antibiotics, but still needs to get poked all the time to keep her feeds going. I think she needs to be over 30 mL milk before they can discontinue her lipids and TPN with her weight. She weighs 3lbs 12oz!!! So close to 4lbs...She looks really good....I am SO happy to see her growing and doing well, but it also makes me very sad that we are missing all of this with Jessica...here comes the tears. I'm still not ready to go there yet, it just really really hurts, and I don't talk about it. The nurses say how well I am doing, and I am doing well, because I keep it buried very deep right now. As long as I don't talk, I feel ok. But I know I can't do this forever, so I will be starting with a support group soon, but not now.
Ok. So, Alyssa's second tests for her eyes was done yesturday and again, no disease and no concerns...more happy news.
Keith and I haven't been in to the hospital as much this week since Saturday. We were fortunate to be given a cottage out at Queensland beach for the week. The couple who owns Colwell's by the Sea donated two cottages to family's at the IWK for a break away from the hospital. They tried this 2 years ago and are hoping that it will continue on. It is very kind of them. So the NICU draw families names who they think would be able to go, depending on feeding schedules and vehicles, and we were one of the lucky ones. Because it is over 40 mins away I can't come in twice a day to see Alyssa, which has been SO hard, and my visits have been short because we've had Emily with us and we really wanted to spend some time with her at the beach and cottages. She loves it there, she has so much room to run around...and loves the water...not so much the sand though. She is a very girly girl and does not like getting her feet dirty. So thank you to Ann and Tom Murdoch and the IWK for giving us such a great week at the cottage and beach.
Tonight Emily is having her first sleepover with her sitter Renae. Renae is like family, so hopefully she'll do ok. This way we can go directly to the hospital tomorrow morning and not have to worry about dropping Emily off, and plus we'll have a little time in the morning where we are not so rushed.
Time to go to the hospital and have a nice long cuddle that I have been missing SO much the last two days...Courtney was kind enough to take her out the two nights she worked for a cuddle and a story. I love our primary nurses!!!
Courtney (one of Alyssa's primary's) was on during the day, and was doing one of her checks and noticed the endotracheal tube was much longer then it should be, meaning Alyssa gave it a good pull. So the call was made for RT to come over (I'm glad we werent' there at this time), and they completely removed the tube and watched her breath. Apparently she did quite well initially, so they skipped the CPAP step and went straight to high flow nasal prongs. She did well for the first day, it was so nice to have a cuddle without all the ventilator tube, however it was short lived. She loved the freedom of being able to turn her head from side to side without any fuss. She started getting a little stressed after the first night and day, and was having some dips in her heart rate and also in her Spo2, so they increased her flow initially up to 7 from 4, but then that didn't do the trick, so they switched her to the CPAP. I feel better with this because I didn't think she was ready for the high flow at the time anyways, but you never know until you try it. Yesturday was a great day with Sharla. She was on room air most of the day and her feeds started going up again. (They had to stop the feeds after she self-extubated to prevent any further stress for the first night....and then started them back up, and then when switched to the CPAP the feeds were stopped again...so hopefully now we can just keep going, so that she can get off of her IV). She is finished her 7 day course of antibiotics, but still needs to get poked all the time to keep her feeds going. I think she needs to be over 30 mL milk before they can discontinue her lipids and TPN with her weight. She weighs 3lbs 12oz!!! So close to 4lbs...She looks really good....I am SO happy to see her growing and doing well, but it also makes me very sad that we are missing all of this with Jessica...here comes the tears. I'm still not ready to go there yet, it just really really hurts, and I don't talk about it. The nurses say how well I am doing, and I am doing well, because I keep it buried very deep right now. As long as I don't talk, I feel ok. But I know I can't do this forever, so I will be starting with a support group soon, but not now.
Ok. So, Alyssa's second tests for her eyes was done yesturday and again, no disease and no concerns...more happy news.
Keith and I haven't been in to the hospital as much this week since Saturday. We were fortunate to be given a cottage out at Queensland beach for the week. The couple who owns Colwell's by the Sea donated two cottages to family's at the IWK for a break away from the hospital. They tried this 2 years ago and are hoping that it will continue on. It is very kind of them. So the NICU draw families names who they think would be able to go, depending on feeding schedules and vehicles, and we were one of the lucky ones. Because it is over 40 mins away I can't come in twice a day to see Alyssa, which has been SO hard, and my visits have been short because we've had Emily with us and we really wanted to spend some time with her at the beach and cottages. She loves it there, she has so much room to run around...and loves the water...not so much the sand though. She is a very girly girl and does not like getting her feet dirty. So thank you to Ann and Tom Murdoch and the IWK for giving us such a great week at the cottage and beach.
Tonight Emily is having her first sleepover with her sitter Renae. Renae is like family, so hopefully she'll do ok. This way we can go directly to the hospital tomorrow morning and not have to worry about dropping Emily off, and plus we'll have a little time in the morning where we are not so rushed.
Time to go to the hospital and have a nice long cuddle that I have been missing SO much the last two days...Courtney was kind enough to take her out the two nights she worked for a cuddle and a story. I love our primary nurses!!!
2 comments:
Your little one is obviously strong-- and knows that she doesn't like that icky tube in her anymore. I was also born on May 12th (in 1981), so your twins and I are birthday buddies.... may God continue to bless your family, and I'm sorry to hear about the loss of Jessica. She's an angel now in heaven, looking down on her sister Alyssa, and giving her sister strength. God bless both of you!
Dear Jenn & Keith, We read your blogs and live your experience with your every written word. It is absolutely normal to feel good one day and rotten the next. Emotions are precious. It takes time & love to heal deep wounds. When Alyssa is home, you will feel the love holding her in your arms. Remember that the same blood that ran through Jessica is running through Alyssa & Emily. Sisters will always be part of each other...no matter. - We hope your stay at the cottage was a boost of renewed energy. No doubt the salty air and relaxed atmosphere helped Emily enjoy a great get-away with her mommy & daddy.- We sent a little parcel for Emily & Alyssa. It should be in your mailbox anyday now.. - Your Alyssa is showing you her strength of mind and her desire for survival. By the sounds of your blogs, she'll be home to help both of you celebrate your wedding anniversary in September!! - Anxious to read your next blog. We love you. xxx tante elizabeth & uncle robert
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