50 days after delivery, we have our lovely youngest daughter home!!! Clara came home Friday afternoon after quite a few mix-ups with the medical equipment company (we're getting a formal apology from the CEO of the hospital - aren't we fancy!). We're thrilled to have the whole family together and we are so, so, so happy to never step foot into Rose every again. The care we got there was phenomenal, but I am so ecstatic that I'm done with that place. I never have to leave there without a baby ever again. I never have to hear the beeping of the NICU ever again. I never have to look at the ugly wallpaper in the NICU every again. And, most importantly, I can be with my children all the time and from the privacy of our home. Almost exactly 3 months of that place...I'm over it.
Little Clara is adjusting a bit to being home. She had a rough night the first night and a better night last night. We’re hoping she turns into Evelyn pretty soon (self-soothing, quiet, etc). She came home attached to oxygen and the pulse oximeter - both of which have been an adjustment for us. It's hard enough with two babies and then having one tethered to all sorts of things makes it even harder. Just trying to sit on the couch take about 6 minutes. You have to get the big twin boppy pillow set up, get Evelyn comfortable, unplug Clara, move Clara onto the pillow, and plug her back in to the pulse ox. The oxygen tank has a big 25 ft tube so we can move around with that. The pulse ox, however, only came with a 4 foot cable. Oh well, we'll get used to it I guess.
We spoke with the pediatric pulmonologist last week and he's describing Clara's issues as Chronic Lung Disease. It sounds scarier than it is. Basically, it means that all the oxygen support she got caused some damage to her lungs and she continued to need the breathing help for longer than she should have. Eventually she'll outgrow it and by a year old she should be like any other baby. It also means that she's at an increased risk for asthma. In the grand scheme of 50% fetal mortality rate with momo twins, we'll take the asthma. Her short term needs are as we expected - the doctor thought she'd be on oxygen through this summer and she will need to stay at home through cold and flu season. Her big outings are doctor appointments and even those are in the process of getting submitted to insurance for home visits. She's just really fragile and we can't risk having her out in public where well intentioned but sick strangers will be breathing all over her (it already happened - 3 times -on the way out of the hospital....having two babies and one with tubes attached to her understandably elicits curiosity). The doctor wants her home until April. It's funny though - if she's on oxygen until the end of the summer, we will have been dealing with this momo twin fallout for a year. We got diagnosed last August. It's been a long 6 months and will continue to be a long 6 more months.
Anyway, Clara and Evelyn are both taking antacids for reflux now. Once we heard the symptoms we figured out that Evelyn probably has it as well. It's not as simple as spitting up (which neither of them do). The symptoms are more subtle - arching their backs while they eat, frequent hiccups, and gagging during feedings.
Our last concerns with Clara are her weight gain and getting cleared for ROP (Evelyn was cleared last week – see Greg’s latest blog entry). Clara has another eye appointment next week and hopefully it’ll be her last. She also hasn't been eating much since we brought her home and she and her sister are starting to look pretty different again. She looks tiny next to Evelyn. We'll talk to the doctor about it tomorrow at her first doctor's appointment.
Now that we have Clara home, I'm going to sign off of the blog. It was a great way for me to get information out and to describe what we were going through emotionally. Even though we still have a long haul ahead of us, I feel like we're in a good place and I'm ready to let the blog go. Thank you to everyone who kept up with our journey and offered support. Greg and I appreciated it so much - it was nice to know others were thinking of the girls and pulling for them.
So, for the last time, take care everyone!
Kris
Little Clara is adjusting a bit to being home. She had a rough night the first night and a better night last night. We’re hoping she turns into Evelyn pretty soon (self-soothing, quiet, etc). She came home attached to oxygen and the pulse oximeter - both of which have been an adjustment for us. It's hard enough with two babies and then having one tethered to all sorts of things makes it even harder. Just trying to sit on the couch take about 6 minutes. You have to get the big twin boppy pillow set up, get Evelyn comfortable, unplug Clara, move Clara onto the pillow, and plug her back in to the pulse ox. The oxygen tank has a big 25 ft tube so we can move around with that. The pulse ox, however, only came with a 4 foot cable. Oh well, we'll get used to it I guess.
We spoke with the pediatric pulmonologist last week and he's describing Clara's issues as Chronic Lung Disease. It sounds scarier than it is. Basically, it means that all the oxygen support she got caused some damage to her lungs and she continued to need the breathing help for longer than she should have. Eventually she'll outgrow it and by a year old she should be like any other baby. It also means that she's at an increased risk for asthma. In the grand scheme of 50% fetal mortality rate with momo twins, we'll take the asthma. Her short term needs are as we expected - the doctor thought she'd be on oxygen through this summer and she will need to stay at home through cold and flu season. Her big outings are doctor appointments and even those are in the process of getting submitted to insurance for home visits. She's just really fragile and we can't risk having her out in public where well intentioned but sick strangers will be breathing all over her (it already happened - 3 times -on the way out of the hospital....having two babies and one with tubes attached to her understandably elicits curiosity). The doctor wants her home until April. It's funny though - if she's on oxygen until the end of the summer, we will have been dealing with this momo twin fallout for a year. We got diagnosed last August. It's been a long 6 months and will continue to be a long 6 more months.
Anyway, Clara and Evelyn are both taking antacids for reflux now. Once we heard the symptoms we figured out that Evelyn probably has it as well. It's not as simple as spitting up (which neither of them do). The symptoms are more subtle - arching their backs while they eat, frequent hiccups, and gagging during feedings.
Our last concerns with Clara are her weight gain and getting cleared for ROP (Evelyn was cleared last week – see Greg’s latest blog entry). Clara has another eye appointment next week and hopefully it’ll be her last. She also hasn't been eating much since we brought her home and she and her sister are starting to look pretty different again. She looks tiny next to Evelyn. We'll talk to the doctor about it tomorrow at her first doctor's appointment.
Now that we have Clara home, I'm going to sign off of the blog. It was a great way for me to get information out and to describe what we were going through emotionally. Even though we still have a long haul ahead of us, I feel like we're in a good place and I'm ready to let the blog go. Thank you to everyone who kept up with our journey and offered support. Greg and I appreciated it so much - it was nice to know others were thinking of the girls and pulling for them.
So, for the last time, take care everyone!
Kris
p.s. enjoy our last round of pictures:
Getting ready to come home
With Mom
With Dad
At least one of us is getting sleep
Saying goodbye to the NICU
Juggling two babies
Feeding one while the other sleeps
Only slightly identical :)
Big brother giving kisses
Home together at last
Portable oxygen and pulse oximeter
The big oxygen tank
25 feet of tubing (and Alex's butt crack)
Portable tanks for bedtime and doctor visits
