So much of our day revolves around feeding ... still. I know that is pretty normal with a baby to spend a lot of time feeding - but this is sooooo very different from what I've experienced in the past. Nursing a baby is so portable, convenient and easy. Feeding with a feeding pump is none of those things. I am thankful though to have the option as it was very neccessary for Eliana's survival.
We are still feeding Eliana on the same schedule we've been on for months - 3, 6, 9 and 12. It's the hospital schedule that we put her on in early February when she got the feeding tube. It's been a little over 3 months now. When we first talked about getting a feeding tube, we talked it over with the doctors. We thought we'd be getting a "G-tube" (one that goes straight into the stomach and requires surgery to place). When we saw her cardiologist, he opted for an NG tube (it goes through the nose, down the esophagus and into the stomach) as he didn't think she had time for the other. He said she would need 4 to 6 weeks to heal from that surgery before undergoing her heart surgery and he didn't think we had that much time. Given this information we thought that the feeding tube was going to be very short term thing - a couple of weeks - up to 4 at the longest.
Eliana did well on the feeding tube and the meds though. (She had really crashed quickly when she went into heart failure and they weren't sure how well she would respond.) Well enough that her surgery was postponed for a couple of months! This allowed her time to grow and get stronger before her surgery. During the time of waiting we still fed by bottle or nursing as much as possible (basically whenever she was awake). Once she was in heart failure though she just didn't have the energy to do much eating. She did well to eat 4 ounces in a day (out of the 24 she was consuming). Some days more and some days much less.
Since her surgery she is awake much more - though not eating a whole lot more. There are times when she is hungry, but seems to be having a hard time swallowing. Several people have mentioned that she may be having trouble due to having been intubated during her surgery (and for awhile afterwards). I guess I didn't realize that the effects of this and the struggles could last so long afterwards.
Since she takes some of her feedings while she is asleep, we have her crib mattress on an incline. We've also made a little "nest" around her to keep her from sliding down and around.
Note the stethoscope near her right foot. This is used prior to each tube feeding to insure that the tube is still placed correctly. Thankfully we have not had one move. I use a syringe to inject air into the tube and you can hear a "whoosh" noise in her stomach as the air enters. Near the top of her crib above her head you can see the red port of the feeding tube which attaches to the green port on the end of her NG tube. To her left is another syringe (it's hard to see). This one holds water and is used to flush the tube after she eats so that formula isn't sitting in her tube. What you can't see is the feeding pump. It is on a tall pole near the head of her crib.
Another change is that she is also pulling out her tube a lot more! She is averaging about every other day. Today was #21 for me putting it back in. (She's actually pulled it out one additional time that Karen put it back in.) To think I thought I could get by with never having to do this myself. (Not so unrealistic when we thought it was just 2 weeks until surgery.) I'm not sure if the frequent placement of this is hurting her throat either. I know that it is usually very hard for her to eat from the bottle just after she has had her tube reinserted.
She is still quick when she gets it out. I don't always see it coming. Sometimes I walk up to the crib and notice that something isn't quite right. Sometimes it takes me a minute to realize what she has done. Usually the evidence is pretty close at hand - and typically in her hand!
Just today she pulled it out just a little bit and I was able to put it back down - though not for long. She grabs the end with the "port" that attaches to the feeding pump and grips it tightly - and then just pulls all of the tape off of her face. The tape does still irritate her sweet skin. I'm using duoderm (and gentle adhesive type bandage under the tape to help protect her skin, but this ultimately seems to make it not stay down as well.
It is fun to see her sweet little face without the tape. You can see her cheek is a little red and irritated where the tape was located. (On her left cheek.)
We have been approved to see a feeding therapist. She called tonight and I was very excited to set up a meeting with her. I think she was happy to hear that I was excited to have her coming to help. She will be here on Wed morning. She wants to see how Eliana's oral motor skills are at this point. If she has good skills and enough weight, she may look at discontinuing the tube so that hunger can drive Eliana's feedings. She also said that this would make for a hard couple of days for us.
Eliana does sometimes cry in hunger. Sometimes she is able to eat then - and others she just isn't! Usually at these times she just cries and cries. I'm not really sure what is going on then. There are times when I start a feed with the tube just to see if it will settle her and get something in her stomach. I then try the bottle (and usually finish with the tube). She has a lot to learn - or relearn - about eating.
Please pray for Eliana's feeding. Pray for wisdom for the therapist in making recommendations and changes for Eliana. Please pray that we would know how to best help her to learn to eat on her own. I look forward to the day when we don't have to have a tube any longer! I know it will come and I just need to be patient. (I'm getting a LOT of lessons in that area!)
One note of encouragment today came when I was talking with an OT (occupational therapist) about doing an evaluation of Eliana. He works with the Early Intervention. When I mentioned we had started seeing a PT and were hoping to see the feeding therapist this week, he asked who we were seeing. When I told him, his comment was that we were seeing some of the best.
As usual, it's late and I should go to sleep. If you've hung in there this long ... bless you!
Outdoor Mom – February 2020
2 hours ago