Day 8 - Tuesday 11/13 - I can’t believe its already been 1 week. Time is flying, but not fast enough to get her home yet. She has graduated to laying on her side today, which is good. All is going well and there is no leaking fluid from her back and she is doing great. The speech therapist stopped in and was a HUGE help with getting her to nurse and paving the path for us. She was getting just a standard nipple on a bottle, but the speech therapist switched up the bottles to the playtex drop ins and using a slow flow nipple which Brooke didn’t want any part of at first, but she latched on and sucked the bottle down and she’s now used to it. She actually nursed for the first time really well today - yay! We need to work on it though. The speech therapist would also like to get her swallow study done soon. This will ensure Brooke is swallowing correctly and everything is going down the right pipe. Dr. Bowman will give her the all clear for the test in about a week if all continues to go well. She has to sit up at an angle for it and on her back so definitely have to wait for that one.
Day 9 - Wed - so I stayed the night last night. A little sleep deprived, but not too bad. Brooke is such a good eater and sleeper, but when your in the hospital in a bed with minimal stimulation there’s not a whole lot else to do for an infant (they don’t do a whole lot of any thing else at this age anyway, but feel bad she’s in the situation she’s in - makes me cry). She’s still doing great, but we had a big scare this morning. The nurse took her temp and it read 101.1, she took it a second time and it read 99.9 (within 5 seconds of the first one) so protocol is contact neuro and when she sent the text she put in an incorrect celcius amount so it looked like it was 103 on top of everything. Within 5 minutes she had a team of doctors assessing her, Dr. Bowman included. Everyone was in a tizzy and thank goodness one of Dr’s is a new mom and said ‘she doesn’t feel warm’ and so they took her temp again and all was perfect. She was about to get sent back to the NICU and they did order up a couple of tests, a urine culture, another US of her head and all came back clear. Ventricles are holding steady and she seems to be emptying her bladder on her own, which is great! Stupid thermometer. (on a side note, this happened again a few days later and the nurse waited 5 minutes, took the temp again and it was perfect - why couldn’t we have done that the first time???).
Day 10 - Thurs - I’m going to stay the night again. Going to try to stay Tues, Thurs and Sun nights. It’s hard on Braxton, but I feel so terrible leaving my baby girl in a hospital room by herself. The nurses are good, don’t get me wrong, but she’s in her room on her own the majority of the time. It breaks my heart she’s there by herself. I cry all the way home from the hospital, but Braxton makes me smile again. I miss him and I think he misses mommy too. It’s getting hard to split my time.
Day 11 - Fri. Nothing eventful, which is always good when you’re in the hospital. I’m heading home tonight to stay with Braxton.
Day 12 - Sat - Aunt Debbie and her friend took Braxton to the Arboretum for a hike while Steve was at the ski shop, then he went over to Lori’s to play with Anna, decorate Lori’s tree, see her kitty and do some crafts. Needless to say, he was wore out. He was asleep on Lori’s sofa by 6:30pm. He definitely had a fun filled day. Thanks Lori and Aunt Debbie for helping out with Braxton. Brooke is doing great, not a lot going on over the weekend.
Day 13 - Sunday - I was going to stay the night, but I think I’ll be heading home for the night. Braxton met his sister today for the first time. I’ll have to upload a couple of pictures. He pet her like does Sam, it was cute. He was excited and brought her a toy and Brooke had got him a gift too, a couple of Thomas books and a l/s Thomas t-shirt which Braxton was ready to put on the minute he saw it. He liked the view from her room too. He kept talking about the tiny cars and the lake. We even saw a couple boats, but I think the fire truck he could play in and drive (not literally) on the 12th floor took the cake. If a child has to be in the hospital (no one wants them in the hospital of course), this is the place to be. They have so much for the kids to do, movies in the theatre, crafts, games, you name it, they have probably thought of it and offer it. It really is an amazing hospital. They even have stuff for the parents to do as well.
Day 14 Monday - another head US and so far so good, Ventricles are holding - yay!!! I can now lift her a little to burp her, so we’re making the baby steps we’re supposed to be. It’s hard to nurse her though, it seems like there is always something going on, a new IV going in, a dr coming around, a blood draw, something and I feel so bad for her and it makes it difficult to nurse her in a nice quiet room. Poor girl gets SOOOOO upset when she’s bothered from a deep sleep too. I feel so bad, she’ll get in a deep sleep and bam, here comes someone to hook her up to her antibiotics, or do some PT, or draw blood, etc. She’s such a good baby and sleeps through a lot of things.
I have not met the Ortho Dr yet, but she has been by. Serial casting was mentioned for Brooke. It’s really good and beneficial when it is done early, but man, what a pain it will be. It sounds like we’ll be at the SB clinic on Clark every Tuesday for a while until we get through the first few months. It’s going to be hard going back to work and keeping all these appts and staying on top of everything, but I don’t have much of a choice. =(
PT is working on getting some bend in her knees and working on her little feet. It’s baby steps. She has very strong quads and hip flexors, but not much in the way of glutes and hams, they’re just not that strong and she may not have much use of them. Hard to tell yet, but hopefully she’ll be able to walk with the use of braces and maybe some forearm crutches if necessary. I’m hoping so. The PT said she has seen others with similar situation walk assisted, and is not uncommon. She’s a very strong baby and I’m sure if she puts her mind to something, she’ll do it.
Day 15 Tuesday 11/21 - 2 weeks old today, can barely believe it has been 2 weeks already. Steve is working on getting the rooms situated. Finally got Braxton’s big boy bed up and ordered a mattress for him. He’s excited to move into the front bedroom in his big bed. Steve has decided now is a good time to paint the front bedroom, not so sure myself, but hey, it will look nice when it is done - I hope. ;o)
Brooke is doing great. Dr Bowman has stopped by and approved her for her swallow study and she may get a ‘carseat test‘ Friday. She has to sit in a carseat for 90 minutes, this will help show if she is in discomfort or anything of the sort. They want to make sure baby can get home (they verify your length of drive home) comfortably. We’ll have to do some dressing changes at home and they will teach us all of that before we head out the door. So far she is on track to go home next Tues or Wed. 1 more week of this craziness. I haven’t been staying the night with her which breaks my heart and makes me cry all the way home from the hospital every night, but there’s stuff to do and a little man who needs his mommy. Thank goodness for daycare during the week. It makes it easy for me to spend the days with her and evenings with him. It is hard, I’m not going to lie and it’s taking a toll, but hopefully only 1 more week to go.
Hopefully Aunt Boober will be coming to visit next week when Brooke is home. It will be nice have a Ped nurse in the house and gives me a level of comfort that she’ll know what to do and how to handle anything that may come up within the first few days/week. Grandma and Grandpa Morehouse are coming later in Dec too. Somehow I think Grandma told Grandpa he was getting on a plane and there was no room for discussion. LOL Whatever it was worked and Braxton is SOOOOO excited that they are coming to visit.
Ok, almost caught up for now. I’ll try to be better about updating more than a weeks worth at a time.
Until next time, have a great Thanksgiving. There is always something to be thankful for, we have several now and can’t wait for our baby girl to come home.
Happy Thanksgiving!
Angela
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