Look who is on a regular cannula! That happened Monday. Her oxygen flow is down to 1. She also hit exactly 6 pounds on Monday. She is still doing great nursing and taking bottles.
They've stopped her multivitamins because there has been calcium in her urine.
Life around the home front has been busy. We are finishing up our year of home schooling. What a fun adventure it's been. It's been nice to have flexibility in our scheduling and sometimes the boys have been motivated to get more of their work done so they get ahead. I can't wait for summer break to get here though and have time with all of us together. Sometimes the stress of everything gets to me and I just wish we could all have a day off.
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I typed the above info on Tuesday when she hit 8 weeks. Here's the latest... She had a swallow study on Friday. They do a "live" x-ray while she drinks a barium mixture so they can see if she is aspirating (that means that fluid is going into her lungs) when she eats. When they did the thin liquid she did aspirate while on her right side. They tried a thicker liquid and she did fine. Here's where it gets tricky.
If she is aspirating that is very very bad. It could lead to pneumonia among other things and she could get really sick. Where she already has chronic lung issues that's a very big deal for her. It affects her more than it would a baby with healthy lungs.
The solution to keep her from aspirating is to thicken her milk. The problem with that is the stuff they typically use to thicken the milk with is only approved to be used in infants 42 weeks and older. She's only 39 weeks. What they can use is bananas. But, the amount of bananas they would have to use to thicken her milk wouldn't give her the right balance of nutrition she needs.
So the plan they came up with is to give her 21 mL of her milk/banana mix with a bottle and the rest of her milk she has to get through her feeding tube. The good news is I can still do an entire breastfeed with her. The Occupational Therapists have seen how I feed her and they know that I know how she has to be held so that she's comfortable and won't aspirate (hopefully). If she is going to aspirate breastmilk is the best thing to go into her lungs. Not that we want it to...
She will do another swallow study in a few weeks and hopefully she will pass. The sad news is that we know she won't be coming home for at least another 3 weeks because she has to be able to do all of her feedings by bottle or breast to come home. She can't do all of her feeds by breast because she has to get the extra calories and protein still, and she will for a while after coming home. She will still have to do 3-4 bottles a day with the extra calories and protein. I think Avella had to it for a few weeks after coming home. And she can't drink an entire bottle for a feeding because of needing the bananas to make it thicker... Well, you get the picture, right?
I don't remember how much I've explained the tightness in her muscles, so forgive me if I've said all of this before. Because so much of her growth in the womb was without fluid she was pretty wedged into one spot. Her right foot likes to pop up to touch her shin, she doesn't like to straighten her arms, and she likes to tip her head to the right and turn it to her left. The therapists come and work with her every morning and they have also taught me how to hold her, lay her down, and how to gently encourage her to relax those muscles and get a better range of movement.
She's doing better at straightening her arms and her foot is getting more flexible. Sometimes she will turn her head to her right while I hold her or she'll let me hold her with her neck straight and lined up. We try to lay her in her crib with her frog (that little beanbag thing) around her head to keep it straight. If we try to lay her on her right side it typically puts too much stress on her neck and she gets upset and tries to not let her head lay down on the bed but lifts it up instead. So much hard work for such a little girl!
They haven't told me how long they think she'll have to do therapy, but we will have to do it once she comes home. Whatever I can do with her will help the process along. She responds better when it's someone she knows. She is familiar with the therapists and with her primary care nurses. When she gets a new nurse or therapist she doesn't always feed or respond as well with them.
She is awake so much now. It's fun to talk to her and have her interact. She loves to look out her window, which is where she was looking when I took this.
Hazel got this bear from my friend and her family (along with some candy that Ryan and I may or may not have shared with the kids). I had put it in her crib, but I came in the other day and found it like this. I get why they put it there. She can see it better there than in her crib, but it almost looks a little creepy to me just hanging there. Maybe that's just me though...
Today while I was holding her she picked her head up off of my chest and turned it to the right. So great! It's a really big deal that she can do that and be relaxed.
Love,
Ella
*******************
I typed the above info on Tuesday when she hit 8 weeks. Here's the latest... She had a swallow study on Friday. They do a "live" x-ray while she drinks a barium mixture so they can see if she is aspirating (that means that fluid is going into her lungs) when she eats. When they did the thin liquid she did aspirate while on her right side. They tried a thicker liquid and she did fine. Here's where it gets tricky.
If she is aspirating that is very very bad. It could lead to pneumonia among other things and she could get really sick. Where she already has chronic lung issues that's a very big deal for her. It affects her more than it would a baby with healthy lungs.
The solution to keep her from aspirating is to thicken her milk. The problem with that is the stuff they typically use to thicken the milk with is only approved to be used in infants 42 weeks and older. She's only 39 weeks. What they can use is bananas. But, the amount of bananas they would have to use to thicken her milk wouldn't give her the right balance of nutrition she needs.
So the plan they came up with is to give her 21 mL of her milk/banana mix with a bottle and the rest of her milk she has to get through her feeding tube. The good news is I can still do an entire breastfeed with her. The Occupational Therapists have seen how I feed her and they know that I know how she has to be held so that she's comfortable and won't aspirate (hopefully). If she is going to aspirate breastmilk is the best thing to go into her lungs. Not that we want it to...
She will do another swallow study in a few weeks and hopefully she will pass. The sad news is that we know she won't be coming home for at least another 3 weeks because she has to be able to do all of her feedings by bottle or breast to come home. She can't do all of her feeds by breast because she has to get the extra calories and protein still, and she will for a while after coming home. She will still have to do 3-4 bottles a day with the extra calories and protein. I think Avella had to it for a few weeks after coming home. And she can't drink an entire bottle for a feeding because of needing the bananas to make it thicker... Well, you get the picture, right?
I don't remember how much I've explained the tightness in her muscles, so forgive me if I've said all of this before. Because so much of her growth in the womb was without fluid she was pretty wedged into one spot. Her right foot likes to pop up to touch her shin, she doesn't like to straighten her arms, and she likes to tip her head to the right and turn it to her left. The therapists come and work with her every morning and they have also taught me how to hold her, lay her down, and how to gently encourage her to relax those muscles and get a better range of movement.
She's doing better at straightening her arms and her foot is getting more flexible. Sometimes she will turn her head to her right while I hold her or she'll let me hold her with her neck straight and lined up. We try to lay her in her crib with her frog (that little beanbag thing) around her head to keep it straight. If we try to lay her on her right side it typically puts too much stress on her neck and she gets upset and tries to not let her head lay down on the bed but lifts it up instead. So much hard work for such a little girl!
They haven't told me how long they think she'll have to do therapy, but we will have to do it once she comes home. Whatever I can do with her will help the process along. She responds better when it's someone she knows. She is familiar with the therapists and with her primary care nurses. When she gets a new nurse or therapist she doesn't always feed or respond as well with them.
She is awake so much now. It's fun to talk to her and have her interact. She loves to look out her window, which is where she was looking when I took this.
Hazel got this bear from my friend and her family (along with some candy that Ryan and I may or may not have shared with the kids). I had put it in her crib, but I came in the other day and found it like this. I get why they put it there. She can see it better there than in her crib, but it almost looks a little creepy to me just hanging there. Maybe that's just me though...
Today while I was holding her she picked her head up off of my chest and turned it to the right. So great! It's a really big deal that she can do that and be relaxed.
Love,
Ella
I'm sorry about the aspirating, that's a bummer that it will delay her coming home. :( I'm so glad she's making so much progress though! It's funny, Audrey had neck issues even with an otherwise normal pregnancy because she was sitting in the same spot for most of the pregnancy that I could tell! In all of her early baby pictures her head is tilted one direction. That is why she was so delayed in walking and started getting a flat head. Their little bodies heal and get strong though, and Hazel is an amazing little girl. Still praying for her and you!
ReplyDeleteVery precious!
ReplyDeleteShe is just so beautiful Angela! What a little darling. 6 pounds! That's great!!
ReplyDelete