Update on Mylah....

Last night Mylah was transferred back to the PCTU (Pediatric Cardiac Thoracic Unit). Her oxygen levels all of a sudden started to decline.  The situation was EXTREMELY scary and honestly I thought that was the last time I would see my daughter alive. She turned very blue and it was obvious that she was having trouble breathing. My heart still aches at the visual images that are now etched in my mind. No parent should ever have to go thru having the hospital call a "Code Blue" on their child.

Currently, she is stable & back on the ventilator, Versed & Morphine.  She is fighting the tube (which I'm told is good). She has a fever of 102 so they are working to bring that down.  There are 3 possibilities as to what happened, but the staff here is very baffled because other than her dependence on the nasal oxygen she seemed to be progressing well and then all of a sudden came this rapid decline.

Mylah could possibly have a viral infection which they are trying to determine by doing blood cultures. She's been given Tylenol for her fever and they've unwrapped her and placed a cold towel on her head to try and cool her down.

Possibility #2 -She aspirated her feed from earlier yesterday. This may have blocked her airway and created this issue last night. She also hadn't had a bowel movement since Sunday so its apparent that she's having trouble digesting her food and over the Sunday we noticed a lot of reflux in her feeding tube.

Last and the one I'm praying it's not- Her Trisomy 18. There is a small possibility that because of her T18 her brain may not be telling her body how to breathe properly. I'm not claiming this one.

Due to the fever I'm praying the infection is the source of our current issue.

Nevertheless, we must start all over.

The words that I need to say are really stuck because my thoughts are very cloudy right now so I won't try to type of this long drawn out blog entry today.

Simply stated... we need all the prayers we can get.

Thank you all!!


  1. I am praying for this child and putting her on my prayer list...

  2. Mylah, you and daddy has been put on my prayer list. I have you and your family for over 18 yrs. You all has god on you all side. He hear you voice. He know you are a firm believer. Love Lou

  3. Let us all who love and believe in the Lord and his mercy and grace bow down on bended knee and pray for this child's healing.

  4. May God give you the strength to be strong for your baby. God is able.....

  5. Mylah is being loved and prayed for by many that you will never know I believe that there is power in prayer. we are praying that she will get better and that that the power of GOD will be manifested in her life. We love you and are praying for you and your family.
    Lekia's mom

  6. As the mom of two preemies, one born at 24 weeks who spent 116 days in the NICU, I can empathize with the range of emotions you're experiencing. I liken the NICU to a rollercoaster with highs and many lows. And boy did I hit a low when I walked into my son's room to find the nurses & dr's bagging him. I was so distraught and had to leave the room when his heart rate and oxygen levels dropped below 40. Like you, that visual is forever etched in my mind.

    Our little ones are so resilient though; look at how many odds Mylah has beaten. And my thoughts are with you and your family as she continues to beat the odds.


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