Well, I'm not even sure where to begin. This little girl is giving us grey hairs and we haven't even brought her home yet :) Last Friday she had a procedure done by the ENT (ear, nose, throat) doctor in the O.R. where they put a scope down her throat to determine if her vocal cords were paralyzed. We received great news that both cords have full movement but the vocal cord on the right side was damaged from when they intubated her at birth. Malia was very swollen and the tube had a difficult time going down leaving her with what they call a void in her throat, making it impossible for her vocal cords to close properly. So we receive great news and then this happens........ Shortly after her procedure while she is recovering in her room, Harley notices that her color changed from normal to blue in an instant. At that moment the alarms are going off alerting the nurses that her heart rate is dropping and something is wrong. They start to bag her (giving her breaths) and gave her medicines immediately to help open her airway. They finally get her stabilized and have to put her on CPap for the night. In hindsight, the Dr. thinks that the scope going down her throat was rigid and may have caused irritation to her already sensitive throat making her airway constrict and not allowing her to breath. Man o' man, this little girl almost gave her daddy a heart attack.
On Monday of this week, they did a swallow test where they took her to radiology and assessed how liquids travel down her esophagus. We were given the results of the test with good news and bad news. The good news being that she is able to eat out of a bottle as long as the breast milk is thickened. The bad news being that I won't be able to breast feed her until her throat heals and can tolerate thin liquids. The bad news did not even register as bad because we were just so thankful that she can now eat and is another step closer to coming home. Her progress with eating continues. The past several days she was only taking 20ml from the bottle and the rest of her feeding (34ml) was given through her tube. Today, they graduated her to a faster flowing nipple and Harley was able to feed her 50ml with no complications, almost her whole feeding!! We were so excited! Hopefully she will continue to eagerly drink from the bottle.
I am ready for this sweet little girl to come home. I am getting burned out traveling to and from the hospital everyday, finding childcare for the girls and coordinating their schedules with Malia's. I continue to trust in the Lord for strength and endurance and know that in His timing all things are perfect! He has been so faithful to us and has given us so much grace during this time. We praise Him for all that he has done and continues to do in our lives!
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Praying for Malia and healing for her throat and all that involves. I know how eager you must be to bring her home. For now though it is good to have that medical team at the ready when her alarms go off! We love you so and are continuing to pray steadfastly. Hugs all around. Janie and Barry
ReplyDeletePraying for all of you I can't even imagine all the struggles that you are going through. One minute at a time and wow so many blessings. Hugs from Illinois!!
ReplyDeleteSarah Slim Sarasin
Alison (and Harley), your faith and ability to still rejoice in the little things after all you have and are still going through is beautiful to behold. Love and hugs~ Jill
ReplyDeleteThe Lord is with you all and watching over Malia. She is an inspiration to all of us. We will continue to pray daily for her and you all. Paulette
ReplyDeleteThanks for the update. You are modeling faith in the goodness of God. I hope and pray that He will give you an extra measure of peace and stamina. Give Kayla and Lydia a kiss from me.
ReplyDeletePrayers and supplication for you
ReplyDelete::Sigh:: I remember all of our traveling... 1 hr commute twice a day (for 7 weeks), and the feedings too! Counting ounce by ounce, and so much joy when our little guy would drink an entire 2oz bottle! Oh, and I can just imagine the panic you felt when those alarms went off... it took so long (it seems) for our son to learn to breath while feeding! Scared me so much... I'd be there, coaching him "breath baby, breath!" Oh, how I feel your tiredness, pain, and most of all, praise. Many prayers for you and yours.
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