Chase did well with his bottle feeding today. He took in 15 mls again and kept it all down! Yay! He did throw-up a couple times during the day, but nothing more than usual. He's up to 6lbs 9oz as of last night. So not only does he have the double chin now, but he's starting to look like the Michelin baby with all the rolls :) So there weren't many updates or changes today. He gets a chest x-ray tomorrow to see if his lungs have improved at all, and they'll try the bottle feeding again in hopes that he'll take in a little bit more.
A wee bit of heaven
Drifted down from above
A handful of happiness
A heartful of love
A mystery of life
So sacred and so sweet
The giver of joy
So deep and complete.
Precious and priceless
So lovable too
The worls'd sweetest miracle
Baby, it's you.
- By Helen Steiner Rice
5 comments:
What wonderful pictures of such a sweet baby - and with a bottle makes it even better. Just keep thinking "there's no place like home" and clicking your red slippers together and I know you'll get there. I'm ready and willing to help with anything so don't hesitate to give me a call.
Love,
Patty
Katie and Chris,
Bruce and I have been following Chase's journey daily. Kevin and Jeanne shared it with us. Our hearts are touched so deeply by sweet Chase and your love for him. You are all in my "prayer pouch" here on my desk and we eagerly await photos of Chase being buckled into his car seat to go HOME. Love and prayers from Galesburg, Illinois.
I try to catch up about once a week. It seems like that little guy is doing well. The pictures are so cute. He's so tiny. We're keeping you in our prayers. Make sure you're taking care of yourselves too so that you'll be ready for him when he comes home.
Don't hesitate to call whenever you need to chat.
Right now a successful bottle for Chase is better than ice cream (or margarita) for me! This "Wee Bit of Heaven" is truly blessed to have wonderful parents like the two of you!
Carroll
Hi,
I am kinda new at this blogger stuff. I am a nurse who does private duty homecare and one of my clients has the same diagnosis - and was telling me about you guys. The biggest thing in your favor is your faith which gives you your strength to pull through and get Chase home and it is very evident in your love as demonstrated through the website. The lord only chooses the right parents for these challenges when he knows you will do the right thing and the best thing for Chase's well-being. My prayers are with you.
As a Private Duty Nurse I would recommend the feeding tube. Yes I know it will be another surgery, but it would also allow him to gain the weight and strength he needs to progress. Sometimes too many steps in trying to go forward and not have all this medical equipment at home causes set backs instead of going forward, so then you have lost ground.
Maybe if I explained it a little different - if he is eating through his G - tube - then he gains weight and is able to handle the stressors of going from oxygen to room air. Being on CPAP even at night can allow him to rest his respiratory muscles which allows him to be awake and able to tolerate a room air trach collar during the day and receives as well as his therapy during the day to make him stronger. Infants with respiratory difficulties require so many more calories that they are unable to be obtained through oral feedings (bottle feedings). You can still work to give him oral feedings during the day and a continuous GT feedings during the night and as he grows begin to turn these feedings around by decreasing the continuous drip and increasing the bottle feedings. NG feedings or Oral tube feedings leave you at a great risk for aspiration - and thus loss of more calories than you started with jsut from the effort of retching. This can lead to aspiration pneumonia and then further hospitalization. Sometimes in our goal to get them WELL and home we push a little to fast for NORMAL and Chase's normal is not like all other infants. I don't mean that in a derragatory manner either. All children are individuals and separate beings. I also am not trying to say you are not doing a great job in his best interest, just giving you some perspective from another avenue and something to think about. I have worked with respiratory children for the past 15 years - each one grows at ones on pace.
Just a note on the homecare nursing. It can be a tremendous help when he needs around the clock care as when he first comes home and as he grows and improves the hours can be cut back to what allows you to get the rest you need and be available to do the hands on care. As a supervisor we usually start with 24 hours x 1, then 20 hrs x 3, 18hrs x 3 then 16 hrs/day indefinetely. It is a great burden to be sure to have strangers in your home and it is kind of like setting up an ICU room in your home. But some of these nurses can become like family but, it allows you the ability to get the needed rest enabling you to think on your feet and be able to hear his alarms when they go off versus exhaustion and not able to hear the alarms.
I am not sure how much you know about homecare - you are not required to feed the nurses and things of that sort. They are still an employee of an agency and the agency is required to give you the guidelines for do's and don'ts and when you go home they should discuss these with you. For some of the children I have cared for over the years - families have fought for the ability to have nursing care at home - it saddens me to hear about a family that could obviously have used the help - not only in delivering care to the child, but to allow the family to have togetherness and ability to be able to be at important events of other siblings and never knew it was available to them. Physicians that promote homecare are wonderful, they do this from the devotion of being a dedicated physician as it takes lots of paperwork to make it work and they are willing to do this - though they do not recieve any renumiration for this service.
I would like to continue to follow Chase's progress - sometimes it is determining we are going forward if this is what we must have to do get there then so be it - you have to most important part on your side already - your faith and your great love of this child and family and friends support. You will be able to leap any obstacles or setbacks that comes Chase's way because you are listening with your heart.
Post a Comment