Ruby was switched to the regular nasal cannula this morning! Her room looks so empty. We will post pictures later. I'm experiencing some technical difficulties uploading the pictures.
We are also going to begin breast and bottle feeding today. Ruby gets fed every three hours. Since she has never had to work for her food before we are going to try feeding by mouth twice today. She won't be able to get her full feed of 60ml by mouth. So we'll give her what she can handle by mouth and the rest will go through her NG tube. This is a big deal and we are very excited about it. She will likely be fed by a combination of bottle, breast, and NG tube for a very long time. Possibly until she starts eating solids. Feeding by mouth is usually when the reflux problems surface. We are expecting the feeding issues to be frustrating and long lived. We are however very thankful to be at the point that we are dealing with feeding problems.
So far Ruby is handling the sedation weaning well. She is showing some signs of withdrawal, sneezing, loose stools, small tremors, and irritability. All in all it's not been too bad. Her voice is getting stronger everyday, so we might start hearing about the wean a bit more. It's not uncommon for babies who were intubated as long as Ruby was to take weeks before their cry sounds "normal". For now though we love the fact that we can hear her cry.
As for other updates. Ruby now weighs just over 7lbs. She fits perfectly into most new born sized clothes. Even some new born stuff is too big. it's nice to be able to dress and bathe her. I even went shopping this weekend for some clothes for her. Chris and I have waited so long to be able to buy baby things. It's fun to have the need to do so. I'll post some Ruby fashion show pictures soon.
With Ruby doing better Chris and I both feel slightly more relaxed. We've been sleeping in a bit and not getting to the hospital until around 7:30 in the morning and we are usually home by 10pm. This is actually better than our 6am to midnight schedule we had. It's very hard to leave. Mostly we hated leaving becasue we didn't know what we'd walk into the next morning. It's very hard to adjust to the fact we don't have the sickest baby in the hospital anymore. When you live on adrenaline for 6+ weeks, it's hard to adjust back down. I'm sure for years to come we still be scared and worried, just as all parents are. We do however more reasons than most parents to worry.
Ruby is starting to stir. We need her nap and be well resting for her noon feeding.
It's awesome to hear about
It's awesome to hear about all Ruby's progress :) You go, girl! Glad to hear the feedings are going pretty well and she's only down to one tube.
Dear Ruby Hope: We met your
Dear Ruby Hope:
We met your grandfather when he came to our facility in Alabama this past Mon. and Tues. He had to tell us your amazing story and also whip out pictures of grandchildren (you will eventually understand that grandparents are allowed to do that) and share your website. While you may be a thousand miles from us (we are between Bham and Atlanta), you now have about 65 new friends that will not only follow your progress, but also keep you in our thoughts and prayers. You are an amazing young lady, as are your parents.
You are also in good hands at Children's of PA.
Best wishes for a quick return to your home.
Donna Smith and the staff at The Surgery Center - Oxford, AL
So happy to read this great
So happy to read this great news!! Nicely done Ruby! And I'm glad to hear that you guys are able to feel a bit better about things - I can't even imagine how hard it is to have that level of worry for such a long time and I am just so glad that the fear and worry is lessening at least some. Take care of yourselves and we hope to see you soon!
We are all so thrilled to
We are all so thrilled to hear about Ruby's rock star progress! :) She looks so cute in all of her little outfits. :D Here's to more fun times ahead!
Love from STL,
J
Yeah Ruby!!!!! I love all of
Yeah Ruby!!!!! I love all of her picutures. What a cutie!!! I hope things keep moving forward.
What awesome news guys! We
What awesome news guys! We miss all of you.. Gabi sends Ruby a big CDH kiss. I am also glad you guys are getting some well deserved sleep! I hope things continue on a positive path, there will some obstacles but Ruby is such a determined little girl that she supercede all in her way! See u soon!
HUGS,
Joanna
So glad the biggest hurdles
So glad the biggest hurdles are behind. Feeding for sure will be challenging but hopefully that will all work it's way out over the next while. A friend's baby we know was born with multiple defects affecting feeding a lot too...(her esaphagus was not attached to her stomach, had only 1 working kidney, and no anal opening)...we feared so very much for her life at first. She had repair surgeries, spent a long time in NICU and spent quite a while feeding through what we called a 'button'. I'm so happy to say she is now a big ( 5 year old I think...) girl,who is just fine, perfectly healthy and you wouldn't know she even had such a rough start. We would not have dreamed it possible a few years ago. May life hold many blessings for your family and precious Ruby...
Julie Power
I'm cheering for Ruby! She
I'm cheering for Ruby! She is doing so well! I'm sure she'll be eating like a champ in no time! Thinking of you guys all the time!
Karla
Braden's Mom
Such good news! Go Ruby Go.
Such good news! Go Ruby Go. You are doing great, girl! And, I cant' wait for the fashion show pictures. Love, Natalie
Hope everything goes well
Hope everything goes well and that Ruby is all about the boobies. :) Love and hugs from IA.
I'm sure they have great SLP
I'm sure they have great SLP to help you there, and I hope the feedings go as smoothly and progress as quickly as possible. What a great point to be at!
Pam
Hello-I'm so anxious to hear
Hello-I'm so anxious to hear how her first oral feeding goes! With any luck she will continue to be the unique CDH baby that she has been and she'll just gulp her milk down ;) Good luck with all the upcoming changes Ruby! xoxo Sarah
Glad to read more good news
Glad to read more good news about Ruby. Now we'll pray that feeding problems will be not-so frustrating and not-too long lived. "Therefore let everyone who is godly offer prayer to you at a time when you may be found;
surely in the rush of great waters, they shall not reach him. You are a hiding place for me; you preserve me from trouble; you surround me with shouts of deliverance."
So glad to hear Ruby is
So glad to hear Ruby is doing so well. Praying for a good day for her feeding situation. May God continue to bless you all!!
Sissy
Nashville, TN
Way to go Ruby!!! Praying
Way to go Ruby!!! Praying you do well with your first oral feeds today little girl. Holly and Chris, it is so wonderful to see your Ruby doing so well and we are sending wishes for a very good week. Look forward to seeing the new pictures.
Hugs, Tracy Meats - Ian's mom
Congratulations, Chris and
Congratulations, Chris and Holly! Anneth and I have been following Ruby's progress, and lately reading these updates is a real highlight of the day.
JLW
Bottle/Breast/NG Tube: Such
Bottle/Breast/NG Tube:
Such a step and not to worry.... I fed my 2.2lb son through that same combination for over 18 months and he grew and grew and is all grown up now and is over six feet tall! You will work all work it out. It just take planning and patience, which is one of your strong suits. go team Ruby.
Great news. Good thing that
Great news. Good thing that you know in advance and you can be prepared for the reflux issues. Luckily, there are some good medicines that help with reflux these days. I'm sure this will be just one more hurdle to get over, but at least it isn't a life threatening hurdle. Have fun shopping for Ruby's wardrobe. It should be a riot!
Have been following this
Have been following this lovely child's journey since the beginning...Ruby Rocks for sure!
Prayers continue for her and for y'all.
cmb
So glad to hear about
So glad to hear about feeling relaxed! After 6 weeks, i do imagine it will be hard to downshift, but I'm just so darned happy that you are getting to experience a bit of that.
Lookin' forward to the pics of Ruby with her fashion, and sans most tubes!
Tara
things will only get
things will only get better!!!!!!!!!
god bless shay from miami