The DR's did their morning rounds pretty early today, must be a Veteran's Day holiday thing. Happy Veteran's day to any Vets reading this, we all served our Country honorably!So, we managed to catch one of the DR's before they left Nayeli's new stomping ground. The DR said they planned to remove the feed tube today. With this, they want Nayeli to eat all of her meals "ad lib," as mentioned in the previous posting. They also want Nayeli to eat all of her meals via breast feeds, and then by bottle at the tail end if necessary. The goal is to start building our baby girl's princess warrior stamina! With that being said, today was a very trying day for us. Nayeli was great this morning, had a great feed and took in at least 60 cc's, mostly from the breast. We were pretty excited about this. We figure this feed tired her out the rest of the day though, because they rest of Nayeli's day was up and down, lots of crying, and she had a tough time staying latched on. We have a feeling she did not take any full feeds today and chances are she will likely lose a little weight. She was also extremely gassy today via her mouth and tushy. It seemed no amount of patting and burping would give her relief and this probably was the cause of a lot of her crying. This is an inherent problem with CDH babies. We have a feeling Nayeli will have many gassy years before the whole CDH thing rights itself as she grows. We know there will be days like this, but this was one of the tougher ones. We pray God gives our baby girl the strenght to feed better each day.
The DR's did an x-ray yesterday on Nayeli's chest and lungs to check on the previously mentioned fluid. The results are not back yet. We have been ever concerned about this fluid situation, and truly hope tomorrow morning brings good news and little or no fluid at all! The DR's also took a sample of the fluid coming out of Nayeli's left eye. Those results have also not come back. Her eye is still leaky, but has not gotten any worse. We are very happy about this.
Good news is, Nayeli is finally tuckered out from all her fussiness today....so, she is asleep at 7pm and probably only slept about an hour today on our shoulder. Hope she has a great night of sleep and wakes refreshed and less gassy! Thanks, as always, for all of your support and nice comments. It continues to give us strength, as does the Lord.
18 comments:
Congratulations! Nayeli is coming along amazinigly! I know that HUGE relief and feeling of those little steps like getting the NG tube out, and getting to feed add lib! A step closer to getting to nurture and take care of her like a "normal" baby... and a step closer to getting her home! She gets cuter and cuter with every picture you post! Thanks for sharing her (and your) CDH journey! I take so much comfort in other CDH parents who are or have gone through the same things...as I am sure you do also! I will be praying and sending good vibes for clear lungs, and no more icky fluid!
(Your right about the gassy stuff with CDH kiddos...my two year old is still struggling with reflux and tummy issues. But we are thankful and know how lucky to be able to say that is all she has had issues with so far!) :)
Amanda Turner
San Antonio, TX
http://www.caringbridge.org/visit/raelynturner
Yay! A tube free Nayeli! You look gorgeous baby girl. Getting "unplugged" is a huge milestone for CDH babies. Congratulations!
Jen
She looks great!!! I am so glad that things are going well for you all. Hopefully you will be "h" before you know it. YAY, Nayeli!!! Way to go big girl!!!
About the limited visitations when you go home, we did that as well as not taking Kaden anywhere during the flu season. Have the doctor's talked about the dangers of RSV with you guys as well. Kaden had to get shots each month of RSV season for the first couple years of his life, as it is very dangerous for children, especially with lung issues. I would definitely talk to them about that. But, like you we had hand sanitizer everywhere (and still do) and everyone had to wash their hands when they came over. I actually made a sign and put it on our front door.
Again, I am so happy for you guys. Keep up the great work, all of you!!!
Amy
Oh, and about the gassiness...we gave Kaden Milicon (sp??) drops for a long time and it seemed to help.
Woohoo Nayeli!Watching that video of Nayeli brought tears to my eyes. Liz and Shane you must be so proud of your warrior princess, I am!
Amber
Yeah Nayeli!!! Oh my gosh! I can't believe how quickly this is all happening! I know it seems like a lifetime to you, but really, it seems like everyday you post such drastic improvement!
I know God is truly doing a wonderful work in your baby girl!
God bless you guys!
It's so great to see Nayeli doing so terrific and with no more feeding tube!!! John Michael gets tired after breastfeeding, too. The way I see it, he and I missed out on several weeks of me making just a little bit of milk and him nursing on that little bit and only needing that little bit, and now I make way more milk and he needs way more milk but his stamina is for that first or second week of nursing still. So we make it up with the bottle filled with my milk, and that's working out really well.
And you aren't kidding about the gassy! Nik calls John "Little Ripper."
The view from Nayeli's room is beautiful, and so is she! I love the picture of her in her little hat. How precious.
You all are so inspirational the way you are so rooted in your faith. It is helping me to be more faithful, too, and look at scripture more. Thanks so much for that!
-Megan, John Michael's mommy
Well done little Nayeli! What incredible news! You all must be so proud of her. She's made incredible progress and continues to amaze us all.
She's so adorable and watching the video brought tears to our eyes. We hope that you will continue to get positive news and that the fluid test results are nothing to worry about.
Thinking about you!
Hugs,
Ingrid, Alex & Alina
wow...she never ceases to amaze me..every time I check the blog..she is one step closer to home. Don't worry about the feeds though, if worse case scenario is that she has to bottle feed, it is a small price to pay to be able to take her home. Look at what could have been and be thankful for every "baby step" no pun intended. She is indeed a beautiful baby, and even more so now without that feed tube. God is good. All of these things happened to our son also and he has spent his life proving to the Drs how wrong they were about things he may "never" do..so hang tough, don't give up, have faith and you will be rewarded with a happy, healthy Nayeli......love and prayers to all, Gail
Yay! Congrats!!!!! That is a huge step in the right direction. Especially when the docs start mentioning special care when you get home (quarantine). It won't be long now. Sending many prayers your way!
WOW!!!!!!! great news! so glad to see her face w/ nothing on it! totally BEAUTIFUL!!! prayers for all of you guys! stay strong!
She is simply gorgeous! Wow she looks great. I'm so impressed that she took 60 ccs! THAT is amazing. I hope you two are resting?? I think Miss Nayeli is going to be saying bye, bye to that hospital very soon. She needs no one but her Mommy and Daddy.
We are still praying and asking God to hold her and you in His strong arms through this cdh battle. Hold tight. You are almost off the roller-coaster!
~Terri ans Brian
YAY! So exciting! Congrats!
Congratulations - no feeding tube!! Way to go Nayeli. I love checking her blog and seeing the steps she is making to come home. She is so adorable in the new pics and looks very good. Many prayers the tests for the various fluids (chest/eyes) are all okay.
Have a great Nayeli--you are doing so good with your feeds, keep it up princess!!
Tracy Meats - mom to Ian, born with a LCDH on 4/3/04 and WY and CO State Rep. for CHERUBS
Way Cool!!! She is a true miracle. Really, she just is awesome. God has answered our prayers. We will continue to pray for your strength and hers. You guys are doing an amazing job! WOW
WTG baby girl!!!!!!!
Love,
Fer
CHERUBS Mexican rep.
Unplugged Nayeli - looks great!
Keeping you all in my thoughts, prayers and LUNG FUNCTION chants and now stamina eating chants,
Elizabeth
It is sooooooo wonderful to see her beautiful little face without any apparatus attached. You have a beautiful and amazing little girl !!
-Jenn Ray
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