So far, Nayeli is doing a pretty good job but she gets tired faster than the average baby due to her smaller lungs. So far, she is averaging 15 or so cc's from Liz, and we then bottle feed her the rest. The most we have gotten her to bottle feed is about 35 cc's, which leaves her a bit short of the 65 cc mark set by the DR's. The remaining amount of milk is being given to Nayeli through her feeding tube. The DR's and lactation nurses believe Nayeli is doing an excellent job and noted her respiration rate and oxygen levels are great while she feeds. They feel it is only a matter of time and Nayeli will have no problem eating her 65 cc meal.
The DR's lowered our daughter's oxygen through her nasal cannula from 3% to 2% today. She is so close to being off oxygen all together, but they want to give it a little more time. We asked the DR's if they could put a time frame on how much longer we will be here. The DR said she likes to estimate a longer period of time to be on the safe side because if it is shorter, it is always a surprise. The DR said if all goes as it has been going, Nayeli could go home in 3 to 2 weeks. The DR's are going to start weaning Nayeli off of the Lasics, and want her to take in full feeds before they release her. They said they do not want to send her home with a feeding tube and intend on taking the tube out soon.
After this meeting, I looked out the window of Nayeli's beautiful view of the Golden Gate Bridge, Golden Gate Park, and part of downtown San Francisco. Liz looked at me and asked me what was wrong because I had tears in my eyes. We are very blessed and everything that has happened for us can only be the work of God. There is no other way to explain this miracle when the DR's told us things would be tough when our daughter was born. Things have not been easy, and there have been painful, scary, and frustrating days, but the way things have gone for our daughter are nothing short of a miracle! We are so thankful to God, our sleepless nights and prayers have been answered. We pray this path continues and we love our daughter so much.
We thank everyone for their prayers, support, and overall words of encouragement. Please keep this coming. Rest assured you have all helped us through this battle and have kept us strong and faithful!
9 comments:
Nayeli is a miracle baby and I'm happy to have followed her through this blog. She sure does look like her daddy. You are all blessed, and I thank God that prayers were answered for the health of your little girl.
Keep going Nayeli. Your almost there. I'm looking forward to the blog when you all go home together.
Praise God for her continued strength and increasing health.
She looks so healthy and cute. I'm so glad you are breastfeeding. Just don't get too frustrated. I was barely able to breastfeed Quinn in the NICU - there is a lot of time and amount pressure. All the nurses told me to not worry because it will go better at home and they were totally right. Just keep trying and stay positive. That liquid gold is such a huge gift, and the bonding is priceless. Keep up the great work...your love for her radiates from the pictures.
Nayeli is a miracle and you hold on to that little girl!! We are praying that she continues making those steps towards going home. She is doing awesome and the eating just takes time, but she is doing wonderful so far! Once she gets home, she will just thrive and take off with her eating!! Best wishes she continues to do well with her feeds and is gaining weight. Way to go Nayeli--keep fighting little girl and you will soon be home with your mom and dad. What a wonderful Thanksgiving blessing, if Nayeli was able to be come home by then.
Hugs to the Nelson family,
Tracy Meats - mom to Ian, born 4/3/04 with a LCDH on WY and CO State Rep. for CHERUBS
Hi Shane and Liz,
We are so happy that Nayeli is improving and that you were given such great news. The next couple of weeks will fly by and before you know it, you will have your little one home. We've been following your blog every day and even though you are 5,000 miles away, it feels like you 3 are part of our family.
Nayeli is so lucky to have such wonderful parents and we are convinced that she will continue to make you proud every day.
You are in our thoughts and we pray for further good news.
Hugs,
Ingrid, Alex & Alina
It is a gift to be able to realize that the precious baby you brought into this world is indeed a miracle from God. She is doing so well, it is hard for you at times to see that, because she IS doing so well, you want her just to hurry and come home. That is a natural and normal feeling to have, but for so many who have been on the other side of things...where the recovery was months and months, or not at all..Nayeli's progress is nothing short of a miracle. God gave this child to you because He knew you would be special and loving parents. Her recovery gives so much hope to parents who are expecting a cdh baby, or are going through this right now. Stay strong, stay involved and welcome the love and support of family and friends. Nayeli is truly a loved and cherished little girl and will be home with you before you know it. Love to all, gail
what great news!! thank you for updating us that are foloowing you guys and praying a lot for all!!!
Everyday is progress. She is such a determined little girl.I keep her in my prayers daily, and look forward to meeting her in person. She is truly beatiful...
Thank you for keeping us posted and a part of her life :)
-Jenn Ray
OH Shane I love you honest and raw words about your strong faith in God. It is so wonderful that Nayeli is doing so well.
Liz I love the video. I soooo remember those Halloween eyes. Precious!!
You both are doing excellent.
Oh yes I think 65 ccs is alot to expect her to eat. I can see what they are aimimg at but come on. If she can come home witha feeding tube that really isn't that big of a deal. Ava did. I would try to persuade them to change their minds. I guess you have to do what you fel is comfortable.
We are thinking of you all and praying up a storm. Thanks for the updates. She IS a MIRACLE that is for certain!
~Terri
Liz, Shane, and Nayeli,
We are so excited for your little one's amazing progress. She and John Michael are rewriting the book on kicking cdh booty! I'm sure you all will be out of there before the 2 week prediction with the way she's going. I LOVE her hair!! It's so gorgeous! Some day we'll have to take a California vacation and the tail-kicking twins can meet! :)
Best of luck to you with the last few days in the hospital. We will continue to pray for you all!
-The Larsons in Alaska
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