It’s amazing how quickly days turn into weeks. I was looking at the last couple of posts, one of which is the girls’ 6-month photos. It’s 2/18/14 – that means I will be taking their 7 month photos soon. Crazy. We are all doing well. We have frequent doctors appointments for vaccinations, Synagis injections, and flu shots.
Jeff & Aschley came over for the Super Bowl. That night I woke up in the middle of the night with the flu. By morning (2/3/14), I was super dehydrated. Between diarrhea, vomiting, and pumping, I was all out of fluids and my muscles were starting to cramp. I felt awful. Jeff picked me up and brought me to the clinic where I got 2L of IV fluids. I was still sick the rest of the day, but felt a little bit better. I of course avoided the girls as much as possible so Brian was on his own with the girls. It was a long day for him. Luckily, no one else got sick, including Brian, the girls or Jeff & Aschley.
On 2/7/14 we got a night out. We had won a homemade Italian dinner at an auction last April with Kim & Jeff Heindl and Jean & Paul Reifenrath. We finally redeemed it on 2/7/14. We had a wonderful babysitter and felt completely comfortable leaving the girls in her hands. Her name is Morgan Sommerfeld. She is one of the NICU nurse’s daughter. She is a nursing student herself. She has experience with G tube cares and is amazing with the girls. We warned her bedtime can be a bit chaotic, but she handled it very well all by herself. She handled it so well that I may ask her to come put the girls to bed every night. We are very fortunate to have her as a babysitter.
The girls develop and change daily. Alida actively puts her hands to her mouth, but is still guarded when anything is put in her mouth. It makes her gag. We walk a fine line of trying to encourage her, but not wanting her to associate something in her mouth with gagging and a negative experience. It will just take time. I joined a Facebook group for heart parents with children with G tubes. One suggestion that a lot of them have is to get your baby/child on a normal “non-heart baby” schedule. When they are fed continuously, they don’t have the natural desire to suck and eat because they are always full. We are in the process of trying to wean down her night feeds and increase her day feeds. It’s a slow process and only time will tell if it’s helpful or not.
Alida is getting much better head control and strength. She makes sounds on occasion, smiles much more frequently, and is starting to reach and touch things. Her therapists are pleased with her progress and her change in demeanor. Her color is good and her oxygen saturation seems to be slowly improving. We have been trying on occasion to turn her down to an 1/8L of oxygen (rather than the current 1/4L). She also ripped her cannula off this morning so we left it off for a while. She hovered at 78-81 pretty steadily. So she is not ready to be without it yet, but we are hopeful that she will in the next couple months.
We got the okay to start Lucie on solids. We have tried giving her rice cereal on a spoon; the first attempt was on 2/5/14. We will probably try something else soon. Here is her first try: https://vimeo.com/85983337. She discovered her feet on 2/10/14, but doesn’t put them in her mouth yet. She also rolled back to front several times on 2/13/14. I went to get Alida’s milk ready and came back and found her on her tummy. She puts everything in her mouth and is starting to find peek-a-boo, looking in the mirror, and silly faces entertaining.
My brother, Jesse, got to visit a couple days before a conference in Madison. It was wonderful seeing him, catching up, and having him spend time with the girls. He is so good with them. We thoroughly enjoyed his visit. We can’t wait until Spring/Summer when we are out of the cold and flu season so our families can be together and his boys can meet their cousins.
Already showing sisterly love!
On 2/14/14 the girls had an occupational therapy and neurology assessment in Marshfield. The roads were horrible and we passed multiple accidents on our way there. They are both doing very well considering their prematurity and Alida’s multiple surgeries. We need to work with Lucie on using her legs more but her upper body is nice and strong. She does great with tummy time. We need to help Alida with her upper body strength and finding creative ways to encourage modified tummy time. Both girls track well with their eyes. The OT said she can tell Alida is very smart despite her physical delays. The best news of all was that the neurologist said Alida has no early signs of cerebral palsy. Given her brain hemorrhage when she was in the NICU, this is a huge relief.
(Lucie has Alida’s sleeve, but Alida’s taken her arm back.)
2/14/14 was a big day for the Fish Family. Jeff and Aschley welcomed Oliver Mason into the world. He was 9#7oz and 19.5 inches long. They came home on Sunday and are all getting adjusted to life with a baby. We look forward to watching our children grow up together and are very happy for them.
It’s been a rough winter – lots of cold weather and snow. Unfortunately the frost is deep enough that the city water pipes are starting to freeze. We had heard about this in our neighborhood, but luckily it hadn’t happened to us – yet. I headed up to Grand Rapids, MN on Friday afternoon (2/14/14) so that I could attend my high school friend’s baby shower on 2/15/14 (Kelly Weir [Rothstein] – due 4/7/14). Of course with our luck, our water stopped working while I was on my way up there. That left poor Brian with the girls for the night by himself – with no water. At least there was electricity – silver lining right? They are now asking every resident in Weston to keep their water running 24/7 until the Spring. They will not be paying for the increase, but I wince at the amount of water we are wasting as a community. The baby shower was lovely and I was happy I got to see Kelly and her tiny baby bump.
We were supposed to have appointments in Milwaukee today, 2/17/14. They got moved to 2/18/14 due to one of the medical staff going out on medical leave. We were planning on driving down today to spend the night and then would drive back after the appointments tomorrow. Well there are winter storm warnings for the whole state. Our entire drive would have been in 3-7 inches of snow with 20 mph winds. After our stressful 50 minute drive to Marshfield on 2/14/14, a three hour trip to Milwaukee in worse conditions just isn’t worth it. So we cancelled our appointments. We are currently trying to get into a pediatric GI doctor in Marshfield or Wausau. We should have done this in the first place. Right now the soonest they can get us in is 3/24/14. We are trying to see if we can get in sooner as the big step tomorrow was going to be taking out the G tube and replacing it with a MIC-KEY button. This will allow for easier tummy time. Alida already has a follow up cardiology appointment with Dr. Dietz on 2/27/14 so the Milwaukee cardiology team was fine with us canceling our appointment with them.
A few more photos for fun.
Alida not crying during bath time (rare):
Alida sleeping calmly in my arms before bed (also rare):
A couple pictures of Alida smiling today (lighting was poor so the pictures aren’t great):