Well, Lily is teething again. This time it is hitting her hard. She is no longer eating by mouth, her ear is bleeding off and on, her skin has gotten pretty bad and her g-tube site is a mess with granulation.
Poor baby is in so much pain. I took her to the GI doctor last Wednesday. They silver nitrated her tube site and she screamed in horrible pain crying great big huge tears. You know it hurt really badly- Lily never cries with tears unless it is really bad.
We had changed her tube ourselves for the first time last Monday. We think we did it right. That was quite an experience. Jason did the tube - I distracted her. It went very well. This knowledge is not really something we wanted to have - but it is necessary. We need to know how to do this - we cannot run to the doctor or hospital everytime it needs to be changed. Each time we learn a new "skill" like this I have various emotions. A lot of time anger that I don't know I have creeps up. I don't want to have to know how to stick someting in a hole in my baby's belly. I don't want to have to know how to burn her skin with chemicals. But what we want and what we have to do as parents does not always fall in line.
Also- her right ear has been bleeding periodically. It bleeds for a part of one day- like it is draining. We don't know what is causing it. We had not had a bleeding episode for 2 weeks. I took her to the ENT for a follow-up check-up last week and he said it looked good. The next day it started bleeding again. We have no idea of it is from the reflux, her tubes dislodging a bit or what....
All of this has set us back a bit in her growth and progress in therapy.
Things have been a bit overwhelming recently - especially with school starting soon and so much therapy and doctors appointments and school planning...we are all being pulled in so many directions.
I took her to our pediatrician today to have him look at all of her issues. He did a really great job with the silver nitrate. Hopefully this will help. We don't want her to be suffering anymore.
It is amazing that all of this is probably caused by her teething. When teething she creates more acid which in turn affects her tube and most likely her skin. The ear may or may not be a part of the teething - this is still a bit of a mystery. Hopefully the next time we post we will have move past this and on to something else more fun!
An Amazing Summer!
2 years ago
4 comments:
Dear Julie:
While I was reading this entry to Dad, I began to cry. Not only were we both saddened by our sweet Lily's multiple troubles, my own motherly instinct of wanting to protect my daughter from her pain and suffering rose up in me. Guess I too am having to learn an unwanted "skill": how to watch my child struggle through a difficult trial and not be able to help very much. My heart hurt.
You know, I constantly pray for times of encouragement and respite for you guys--times to regroup and feel refreshed to start again.
After reading this latest blog,
I had to scroll down and once again watch the video of Lily laughing--immediately, it was like an emotional "epipen", an antidote to the sadness of hearing about her big tears and about your own unexpected yet understandable feelings. It's impossible to watch it and not smile.
So I've decided that those priceless 40 seconds of Lily's laughter are one kind of encouragement and rest that God has given all of us as a sign of hope, sort of like a Divine hug, when it all gets too overwhelming to comprehend. We can always go there when we need a smile, when we want to see Lily not in pain and full of joy.
No mother can see her child in pain and not react as you have, honey. You're a wonderful mom.
Please know how much we love you both and admire your courage and perseverence. We are with you in spirit always. We thank God for all of you, especially our little granddaughter, Lily. Please hold her very close for Papa and me until we can be there again in person to hug and kiss her--and Nathan, Ella and Ava.
Love, Mom/Nana Joanne
Julie and family,
It's tough. Alayna has been going through the teething on and off for quite a few months now. I haven't had a complete night of sleep for over 4 weeks. She wakes up in the middle of the night, she constantly has her hands in her mouth to the point she infected one of them, and she is terribly fussy most of the day (unless she is sleeping in the swing). Boy I wish we lived closer. We could put the two girls together and just have a little cry session ourselves! Your feeling of being angry is completely normal and even though I still feel like I'm getting a "grip" on things there are days those feelings boil up in me too. The other night was the worst night Alayna has had so far with the biting of her hands. I couldn't believe it and neither could Dana and we didn't know what to do. It's totally different than what we've ever come face to face with and we were at a loss. Saying "no" doesn't work like it "typically" would and that is frustrating for me who is looking for a quick solve. I hope Lily's gtube stops bothering her and the nitrate gets to making it better. I hope her ears and skin heal up. Alayna just got over a double ear infection even though she has tubes. She gets one every time she is teething and I use drops. And just like you guys, we are being pulled in every direction and therapy hasn't gone well at all for the past few weeks. I don't know if Lily is like Alayna, but when she gets tired or upset, it is a done deal. There is nothing we can do to distract her and change her frame of mind. We pack up and go home. I loved Lily's giggling. When they do laugh it is contagious and it is a wonderful thing to hear. She will continue to do it more and more. I remember how long it took Alayna to smile! I continue to pray for all of our 1p36 family. May God give us the strength to get through the challenging days and may we continue to trust in his plan. I would love to talk to you soon. I will email you because I think I've lost your phone number. I'd love to get together before school starts and that is coming up so soon. Please take care and give everyone a hug in your family. It can be tough on all of them.
I can relate to not wanting to know new skills and feeling angry that you have to do them with your child. Sometimes I look at other moms who complain about their kids whining or asking "Why" too much and I think "I wish those were my only complaints." I have had to shove tubes into my daughter, hold her down during procedures, listen to her crying while feeling helpless, etc. Some days are easier than others and it sounds like you guys are having some hard days right now. But it also sounds like you are doing everything you can for Lily and she looks like she is doing amazing. I am so impressed by the photos of her standing and getting up on all fours. Hang in there and know that other parents out there are going through similar things.
Julie, I am so sorry you guys are going through this right now. It is only natural to be angry at times. I still go through my moments of anger and saddness, and on occassion I find myself crying for hours. It doesn't happen often, but it occasionally creeps up on me. Stay srong. It will get better. I am sorry Lily ever has to experience pain. It's not fair sometimes. She is a strong little girl. I am sure once this new tooth cuts she will be a happy girl again. They are so much stronger than us. I will say a prayer for you guys to stay stong.
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