Today Emily and I met with one of the neonatologists to talk about Ellie.
First, they had ordered a consult with an ENT specialist (Ear, Nose, Throat) to look at Ellie's throat, swallowing, breathing, etc.
The ENT found that Ellie had no muscle tone or reflex in her throat. There is tissue that opens and closes over the trachea to protect her airway and lungs from fluids and other nasty things. That tissue was simply floppy and was not opening or closing of its own accord. Also baby's vocal cords provide the dual purpose of voice and protecting the air way, and Ellie's were not doing either.
Up until now Ellie had been on a CPAP which is a similar device used for people that have sleep apnea. The CPAP was providing pressure into her air way so that the tissue covering her trachea would stay open. If she does not have the positive pressue the tissue covers the trachea and she is not able to pull air into her lungs.
The danger of the CPAP is that her trachea is left open all the time and there is no protection for her lungs from fluids and asperation. If she would asperate, there is a high risk of pneumonia, which could be fatal.
So, Ellie was put back on a ventilator. A ventilator does a better job of protecting her air way because there is a tube that is intabated down into her trachea.
Long term -- The neonatologist discussed what it would take for Ellie to come home. There are two issues caused by Ellie's hypotonic state that keep her from coming home. 1. she cannot protect her air way and cannot breathe without assistance. 2. She cannot suck or swallow milk for nourishment.
So the solutions presented to those problems are a Tracheostomy and a Nissen Fundoplication and G-tube.
A Tracheostomy is a an incision made into the trachea to provide an alternative airway for breathing.
A Nissen Fundoplication is a procedure to tighten the sphincter where the esophagus and stomach meet in order to prevent asperation from occuring.
A G-tube is feeding tube inserted through the abdomen into the stomach.
Obviously surgery comes with risks and this is far from a perfect solution.
Diagnosis -- So far we have no diagnosis as to the underlying cause for Ellie's hypotonia. Some tests have come back and we are still waiting on others. There is also the possibility that we may be left with no answer for Ellie's condition at all.
So keep praying, we aren't losing hope for a miracle. God's reasons are not known to us and we may never truly know. Using the eyes of faith we step out into an uncertain and unknown future every day. And today we have a precious child that God has given us to love and care for.
Pray that Emily and I can make wise decisions for Ellie's care.
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Thank you again for the updates. We continue to pray with and for you. She is a precious gift.
ReplyDeleteDear Adam and Emily, I check here every day and I am touched by the way you are facing your challenges and by the understanding you have of Ellie's medical condition, all of which you explain so clearly for us. I'm sorry that the news is not more positive, but I know that your decisions are going to be well-informed, that you'll consider all factors, and that you'll do what is best for your family. I send my love to all of you.
ReplyDeleteStill praying. We stopped in yesterday, but no one was home. Can we come and see Ellie?
ReplyDeleteThank you for the detailed update so we can pray for specifics. May you all be cradled in His Koinenia, to know what a gift each of you are! with love & prayers, John, Katy & Heidi
ReplyDeleteKeep up your spirits. The Lord has your precious family in HIS care and has all these "circumstances" already "figured" out. Lean on Him. Draw nigh to the Lord and He will draw nigh to you. May you find the wisdom and decision you have to make about your daughter regarding a surgery to be one that the Lord has guided you and directed you to choose. In Christs love, Melody Timmerman
ReplyDeleteWe are praying that the grace and care of our Good Shepherd will comfort and strengthen you and bring the miracle of healing to Ellie.
ReplyDeleteBob and Jan Boersma
You are in our family prayers daily! May Our Lord continue to give you encouragement & perseverance in this trial, as well as healing to Ellie.
ReplyDeleteWe are keeping you all in our prayers daily. We are amazed at your understanding of the medical issues and appreciate the update so we know exactly what to pray for. Although it may seem that putting Ellie on a ventilator is step backward, it is just as you said - to protect her airway. We are also praying that God will continue to surround you with support from your loving Christian family & friends and that He brings just the right person at those times when discouragement seems becomes overwhelming. He understands your every concern.
ReplyDeletePraying continually... I Thess 5:17.
ReplyDeleteLove you guys.
Rest in the arms of Jesus.
ReplyDeleteI think of you guys often and would love to help you somehow. I just don't know the best way. Feel free to bring the boys over while you visit Ellie sometime. We live fairly close to the hospital. Our boys would love it. It is an encouragement to hear how God's Word and Spirit are a comfort to you and that you are able to focus on God's sovereignty during this hard time in your lives. When we had our Seth, our pastor at the time visited me in the hospital and read God's Word to me. He encouraged me to be reminded that God will give strength each day, for that day. "...Your mercies are new every morning...Great is Thy Faithfulness." We will be praying for your family.
ReplyDeleteDear Emily and Adam, and family,
ReplyDeleteAs first heard the need of prayers, through our prayerline,have been thinking of you and praying for the needs you present {so helpful in specifics Adam writes}. And just wanted you to know many in our Providence family community are also keeping you in thought and prayer. We are also encouraged in our faith walk by your testimony to our all-knowing heavenly Father being in control of every second; knowing all your needs. We will continue to lift you all up in prayers. In Christ's Love, Beth N. (and Sarah M.)
Thanks so much for the updated photos! I keep praying for strength and endurance for your entire family as you are on this journey. Draw nigh to God and He will draw nigh to you.
ReplyDeleteIn Christs love, Melody Timmerman