Today's Topic:
There are long-term consequences to malnutrition. For some people, there wouldn’t be life without tube feeding, but for others they would continually struggle with malnutrition. Tube feeding makes it possible for people who aren’t able to eat enough on their own to get the nutrition they need.
Jillian was born at 8lb 11oz... and she quickly started loosing weight. She quickly lost a pound. When you puke all of the time it is really hard to gain weight. When she was 2 1/2 months old she was diagnosed a failure to thrive (she still carries this diagnosis because if you removed her tube she would fail to thrive). When she was 3 months old she was admitted into the hospital with a respiratory virus and at that point she was only around 9lb (this was with her eating every 2 hours around the clock with fortified milk). We could not leave the hospital until she could gain weight and even with feeding her every 2 hr we could not get her to gain because she was puking so much. This is when Jillian got her first feeding tube. She was fed via an NG tube from 10pm to 6am and bottles every 2 hr during the day. While she did put a little weight on she was still puking and choking all of the time and she was switched to a NJ tube. With the NJ tube we really started to see weight gain, to the point we had to lessen how many calories her milk was fortified to. Once switching to the NJ tube was also started to see her hitting milestones that she was behind in (she did not roll over for the first time until she was 6mo old) Jillian is still really small for her age. Last year she really did not gain any weight at all, however once she started on oxygen her weight gain started again. She still sits between the 5th-10th percentiles for height and weight but thankfully she is no longer loosing. Without a feeding tube Jillian would not be able to get the nutrition that she needs to live.
Our day:
We started off with my OB appointment. I have gained a little weight which is good (and was noticeable when I tried to put on my Tubie Friends shirt today and it sat at my belly button!) We had a really good conversation about delivery. See with Jillian I started having contractions at 28 weeks, however I never dilated. Once my water broke at 39 weeks (on its own) all contractions stopped (these had been timeable, intense contractions, to the point my doctor told me she had no idea when to tell me to go to the hospital and to pray my water broke because for 10 weeks I had daily contractions about 2min apart and this would last for up to 6 hours at a time) and they ended up giving me drugs to get labor started, however even with drugs my labor never really progressed and 24 hours after my water broke I ended up having an emergency c-section. Based on my history we decided that a c-section will probably be the best plan (my doctor is very pro v-back, I know a lot of people who have this OB and I am the only one that I know who has needed a c-section, she is very much pushes that she wants your labor to be how you want it, so I know talking with her and friends of mine that she is not a dr who is going to suggest a c-section if its not the best thing for you and the baby). We also talked about contractions because they have already started and there have been a few nights were I have not been able to get off the couch because they were for frequent and painful. There is not much that we can do about them, it is part of how my body handles pregnancy, but she suggested lots of water and rest when contractions start.
We then headed to neuro at Children's in Milwaukee. The appointment went really well. They looked at her muscle biopsy stuff and agreed that stuff did not look right but they were not positive what it shows. They are sending us for a consult with a neuro-muscular doctor at Fredoert. I am really hopeful that this is the doctor that will be able to help us. I still really think whatever is going on has a muscle base and we really need a muscle doctor, however Children's does not currently have one (they are getting one in August) but I am thankful that we are getting this opportunity to see this doctor even if he is more adult based. They are also sending us back to audiology to get her hearing re-tested (I am hopeful we get an audiologist that does not think Jillian is uncoperative even when she is perfectly behaved)
Then we headed to rehab clinic. I really like rehab clinic. They kind of look at everything we are doing and help us with equipment and send us to doctors we might not have thought about. They said we are doing everything we should be doing right now. She asked me how I am not incredibly frustrated that we don't have answers yet. I told her that I am but we just keep chugging along. We talked about Jillian's neuro-psych eval and she agreed with the test scores but she also agreed that the way the guy worded some of the stuff was rude and she was offended (the guy claimed I was uncooperative in answering questions about Jillian's self eating skills, she does not eat, I am not sure what else you want me to say about her self eating skills). She said to come back in a year or when we wanted to order Jillian's wheelchair. She said it is up to us when we feel like she has outgrown her stroller or when we want her to be able to do things at her level when we are out and about and feel that its the right time to transition her to a wheelchair when we are out of the house. Insurance will only pay for a chair every 3-5 years so we want to wait until she is a little larger so that the wheelchair will last her longer, so right now we will probably start the process of ordering her wheelchair in a year. Jillian ended up sleeping through the rehab appointment. Having a fun weekend takes a lot out of her and it takes her several days to bounce back. That is the part that most people don't see. They will see Jillian playing for a little bit but they don't see how her playing effects her energy for days. We have to weight every activity she does based on how much energy it will take out of her and how long it will take for her to recover. It is a balancing act.
So that was our crazy busy day, but I feel like it was really productive!
 |
| Flushing with water between meds |
 |
| Jillian reading a book to Emerson last night |
 |
| Hanging out while mommy at lunch |
 |
| Sleeping during rehab clinic |
 |
| We got the baby swing out last night for Emerson to use. When I looked at the swing today I noticed there were three princesses in it. I have a feeling this is going to happen a lot in a few months. |
No comments:
Post a Comment