Blog Comments

Praises, Praises! Yay for "Nani" and yay for you too, Mom.

Keep up the great work!

Blessings Always,

Maria
Nonna to Angel CHERUB Liam ("The Lion") Anthony Hunt

Love this picture. She is so pretty.

Amairani is beautifu!! What a precious child!!

Thnks she really is im proud of her shes indured more then some people will in a life time! !

Love to hear that Amairani is thriving at home! She sounds like a beautiful baby girl with those green eyes and red hair! That is wonderful you have no worries from the doctors and she is doing well. Hopefully, she will outgrow the oral aversion. What a precious miracle!

Some errors due to my phone thinking it knows what i want to spell!! Lol sorry

Sounds like Amairani is thriving at home! So happy you are home with your baby girl. It sounds like she has a wonderful personality and already has a good taste in music! Enjoy this precious time with your baby girl. (((HUGS)))

That's wonderful. Will be thinking of you tomorrow.

Blessings! Welcome Home, Amairani!

I hope your little miracle continues to grow & thrive!

Best wishes for a beautiful Thursday!!! Hope your baby girl's homecoming is wonderful....HOME SWEET HOME!!! I hope Amairani just thrives at home.

thnks ;] we finally made progress today 15mls. of milk thur a dr. brown bottle & i think she kinda realize its a good thing cuz she look up & smiled after like tht was so good & didnt hurt mommy ;] i so cried

If she like the drops of milk in her mouth, that is a great start! It will take time for her to learn to swallow and suck and breath at the same time and not upset her. She is a precious miracle and in time, her time, she will get there! Hang in there!

The drops are a good idea. That's how we got Ethan to start drinking water. I agree with Tracy; therapy is a great way to get help and ideas.

She is on acid meds... She like the mills just drops in her mouth n will drink 2ml of breastmilk tht way, I was thinking she was just gonna skip the whole bottle thing too because she will take drips of milk in her mouth but dosent like when anything goes in for a long period of time she can't control... She loves licking the cotton off her socks she has on her hands so she can handle stuff in and around but not stuff that has to stay in for a long time

Hope you get to take your baby girl home soon! Have the doctors been having her work with OT and some type of feeding therapy? It is just going to take time and lots of practice to learn to bottle feed. Some CDH kids never learn to bottle feed, but learn to take a sippy cup and then on to solids. I take it, you have a feeding tube then? Feeding difficulties in my opinion is right at the top of the list of difficulities for CDH kids, ranging from mild to severe. You may want to post on the forums and ask for ideas too...not everybody realizes these blogs are here.

Have you tried all temps. of milk, from cold to warm, to hot? Different nipples and bottles? Is she on acid reflux meds? Some babies relate feeding to pain from the reflux and don't want to eat. It sounds like she has a strong oral aversion. I know one mom would take milk in a syringe and slowly get her son to like the taste of milk and not the shock of all at once from a big suck at the bottle.

It is good she is taking the binky! Praying you find something that works for her, but working with some type of therapy may give you some ideas or different things to try.

This is so frustrating I try n try everything and nothing seems tp.work I abouts to make her hungry n stop her feeds so she can realize it a good thing and start to like it more

That's great news. Our son, Ethan, will not eat. He used his pacifier great but when it came to milk or food, it just was not happening. He was intubated 6 weeks. After he got pneumonia a couple of times, his pulmonologist would not allow him to try the bottle any longer as they thought he aspirated. He is now 3 1/2 years old and has severe aversions to food. He doesn't like it on his hands, face, lips and most definitetly not in his mouth. Although he has made some progress with holding a cookie or something in his mouth, he does not chew or swallow. He has this big fear of having mushy things on his hands or anywhere on his body. The therapists have worked with him by putting shaving cream on his arms and legs. He is just making slow progress. Therapy has been great. He wouldn't have made the progress he has without it. He will drink from a cup now and has recently drank a whole juice box. We just made sure we used the pacifier as often as possible. When he started teething, he really took to it. But just before he turned 2 years old, he threw it down and never used it again. I think he figured out that we used to "pacify" him and help him calm himself down. Let us know how it goes.

Your story is encouraging. She is so strong and fighting.
Sounds like she is doing well. So glad to hear your news. I am praying for her. God bless you and this journey.
Julie Dobbs-Bryson's mom

What a strong baby girl! So glad the surgery went good and no patch was needed! Drastically reduces her chances of reherniation as she grows. The sac may have helped her lungs grow even more and hopefully, she is soon extubated. Praying for continued healing and recovery. Keep the good progress going Amairani!

Tracy, Ian's mom

Praise God!

Onward & Upward, Amairani!

Blessings Always,

Maria