So Rachel had her bronchoscopy this morning by an ENT surgeon. The procedure didn't take long at all. What they found was that Rachel has a "floppy" airway. This is why she couldn't breath on the nasal cannula. Her airway would close off without the pressure from the CPAP. Rachel got through the procedure like a champ. She wasn't intubated so when we saw her after the procedure she was back on the CPAP. The ENT surgeon said that Rachel's airway will become less floppy with time and as she grows. This could take up to a year so we were told that Rachel may need a trach especially if we want to get her home sooner than later. Also they think she may need a G-tube Fundo as well. We hope and pray that neither of these procedures will be needed. The most important thing is to help Rachel grow. As she grows so will her airway, and hopefully the reflux will some how go away a she gets bigger. Time will only tell for Rachel.
Haley is scheduled to have her bowels reconnected on Thursday. She will also have her eyes examined while she is under general anesthesia. She had her hearing screening today and they said she failed it in both ears. I was very concerned about it, but the neonatologist told me that it was just a screening. Lots of babies fail the screening and have no problems with hearing at all. He said there could be several factors involved, so don't put to much stock into it. The real hearing exam will come hopefully within the next few days. The doctor stated he would be extremely surprised if Haley is deaf.
We continue to fast and pray for our precious little girls. They both have been through so much already in their young lives. Thomas and I know that what will happen is for a reason. We do hope and pray that some how Rachel doesn't need a G-Tube, a fundo, nor a Trach. We will continue to pray that by some miracle she out grows these issues very soon. God will take care of our girls regardless of what they have to go through. We are so grateful for the blessings that have come to us through our beautiful little girls.
Are you kidding me? Now one of the babies could be deaf? Oh how sad. What gets me is if these are not the "real" tests then why does the doctors perform them and then give false information to the parents? Why don't they just do the "real" test initially? At 1 year old my son failed his hearing tests. The doctor suggested that I buy him very expensive hearing aids, which at the time the insurance would not cover and I could not afford. I had a feeling that my son could hear and thought the tests were inaccurate. Come tp find out, because of his prematurity, he was too immature to respond correctly to the hearing tests. Many years have passed since then. He did not get the hearing aids and he hears absolutely fine!!! I am hoping the same will be for your baby.
ReplyDeleteHello there! I have been following your blog since you were pregnant and praying for you often. I am a nurse and actually took care of twins that were born at 23wks gestation. The girl weighed 1lb and went down to 14oz! Anyways all of this to say, that Serena the little girl taht I cared for, had "a floppy airway, tracheaomalasia, paralyzed vocal cord, etc etc. They also told the parents that she would possibly need a trache as well as G-tube. She DIDN'T!!!! She did come home on oxygen which she kept until she was about a year and a half, and then she had a type of surgery to help the airway, I apologize can't remember the name of the procedure right now. Anyways all that to say if you would like to speak with this mother I can get you the information
ReplyDeleteour thoughts and prayers are with precious rachel and haley and their amazing mommy and daddy.... kindest thoughts, shirley, joshua, finn and francesca.....
ReplyDeletePrayers for Rachel & Hailey. Two of my children failed the initial hearing test but passed the next one. (one of my singletons and one of my surviving quadruplets) That is really common. Continued prayers for your family.
ReplyDeleteBlessings,
Our Becca failed all her hearing screens, and even a more extensive test done under sedation (an ABR test), but it turned out that b/c of her prematurity and all the meds, etc, she had fluid built up that wasn't draining - so they placed tubes in her ears, and now she hears! I hope you have an easy fix as well! I might have already said this, but we can really close to a g-tube and a fundo as well but were able to avoid it by working with a speech pathologist while she was still in the NICU. Sounds like there were different issues there, though - but maybe they could help! Y'all have a big week - will be praying that it all goes smoothly!
ReplyDeleteI'm glad Rachel's problem is something that she will grow out of. Even if she needs a trach and/or a G-tube Fundo, she will be fine. All gets better when they grow. Don't worry, she will be ok.
ReplyDeleteHaley will do just fine on Thursday. I'm very happy she is getting closer to going home. The hearing test is no big deal. To be honest with you, I think I haven't seen almost any preemies that have passed it. It is just a matter of time. Like Rachel, it will get better when she grows a little bit more.
My prayers and love continue to go your way. Love, Claudia
this all sounds so serious - but given a little time, may correct itself without extreme measures. Rachel is going to win come what may! give her a little time... airways can get stronger -
ReplyDeletemy grandson had severe reflux that was helped by a trip to the chiropractor... who knows...
Haley's surgery will go well and she will continue to make the best progress possible.
i think the hearing test may be a little premature for such a premature baby ;-)
i am hopeful that you will be able to relax and enjoy the girls without all these 'things' hanging over your heads.. you are amazing parents for these little ones. you are heroes and your testimonies continue to grow and help all of us who follow your blog. thank you
love from frigid Midvale Utah,
Erma
One of our babies failed the screening the first time shortly after birth and they told us the same thing. I didn't worry about it but it is kind of nerve racking to hear that your child could be deaf. We found out the next day that they gave her another test and she passed. I always pray for your sweet babies to be able to come home soon with no problems. Thanks for always keeping us updated!
ReplyDeleteMy daughter failed in one ear on her first hearing test and then passed with flying colors the next time they gave it to her. The nurses told me that it's so common and usually turns out to be nothing. I hope both girls are able to overcome these current struggles and that they won't require any more surgery.
ReplyDeletePraying for you always,
Christina McKinney
Always thinking of your girls and keeping them in my prayers. May all go well with Hayley's sugery tomorrow and sending positive "grow baby grow" thoughts to Rachel!!! Many well wishes coming from my family to yours.
ReplyDeleteI think you need to be very cautious in giving her a trach. I know someone who had triplets and her daughter had the trach until she was 3 1/2 years old because of all the complications that come along with it. Then when it is time to take the trach out - it is not all fun and games. Just make sure if you go the trach route, it is because it is the only option, not because you want her to come home "sooner rather than later". Trachs cause a lot of secondary problems so don't let them pressure you into getting one.
ReplyDeleteWe were also told our one of our twin daughters would have to have a g-tube and that there would be no other option. Well with a lot of prayers and blessings and working hard with her that never happened. Yes she has a few issues but they are being managed as well. The Lord knows all and he will continue to bless your sweet little girls.
ReplyDeleteAs for Haley failing her hearing tests one of our twins failed it multiple times and we were told she would be deaf and need hearing aides and on and on. She is doing fine. She hears has learned words. She does get a lot of ear infections because of her small ear canals but overall does well.