Yesterday I was talking with a friend about my feelings during this whole journey. We took a lunch at work yesterday & indulged in Thai food & cupcakes. I'd been craving both for a few weeks. It was nice to get away from the hospital. Away from the beeping, the medical jargon, the smell; just away from it all. Although I'm never really fully away. My mind & heart is always here at the hospital with my daughter. No matter how much I can't stand being here, I am always in a rush to get back when I leave.
My friend & I were speaking about Mylah's episode of respiratory distress on July 24. I don't think most people who are aware of what happened really KNOW what happened. I was good to get some of my emotions out to my friend. I know she will never fully understand what I felt, but it was good having someone cry with me. I explained to her that sometimes I go through these rough periods because this is hard and even the strong get weak sometimes.
Last Friday, Mylah went in for her G-Tube surgery. Intially, the plan was to do it the same day as her trach, but because of some digestive issues she'd been having the surgeons decided that they would just put in her G-tube at a later date. Last Friday was that date. Thursday evening, the surgeon discussed with me the procedure, the risks, possible complications, it's severity; all things I've become used to. I gave my consent. I planned to work from our Southfield office on Friday. The surgeon informed me that the G-tube surgery was considered minor and that the percentage of complications were very low. I had no doubt that Mylah would pull through with no problem.
She left for surgery at about 10 a.m. Friday morning. My sister waited while I left and went to work.
The day began to progress and about 1:51 p.m. I noticed that I had not heard from my sister. I called and she informed me that she was still waiting. I called Mylah's nurse and my worst fears confirmed.
"There was a complication during surgery"
If I would have just stayed there maybe this wouldn't have happened. Her nurse tried to explain what happened, I was on the phone, but I wasn't present during the conversation. She said Mylah's bowel had been nicked at the end of the procedure, there was a lot of bleeding, her blood pressured dropped very low and she had a very hard time breathing. Mylah was back in her room and was stable, but she was very pale from the tremendous loss of blood. She required a blood transfusion, and was put back on the old ventilator because she required more support to breathe. She would have the surgeon call me.
YOU'VE GOT TO BE KIDDING ME.......... is all I could think.... Here we go AGAIN.
I didn't know what to do. Scream, cry, or yell. Should I leave or stay. The hospital was about a 35 minute drive from my job. It was getting close to rush hour and I'm not in a mental state to drive. I was worried about myself.
I called my sister and told her that she could go back and I had to tell her what happened. Neither one of us were prepared for this. How does a routine, minor surgery turn into something major? While on the phone with my sister my voicemail notification went off and I knew it was the surgeon. He left a message, but no number to call him back.
Frustration level rising.....
Placed a call to my sister and told her to tell the nurse the surgeon called about but didn't leave a phone number. The nurse would page him to my desk phone.
Mylah's ICU doctor called shortly after. She repeated the same. At the end of the G-tube insertion (which was successful) as they were pulling back the laparoscopic camera the needle nicked Mylah's bowel. They inspected the bowel by pulling it all the way out, closed her up and then she began to bleed from her G-tube site and her trach. That's when her saturation dropped and her blood pressure plummeted.
I just couldn't believe what I heard. Then the surgeon was calling. He didn't sound concerned or sound like it was serious. I just sat at my desk in disbelief. I began to cry. I couldn't hold it together anymore. I cried and cried and cried. My friends at work tried to console me. They prayed for Mylah, they cried with me and encouraged me to leave. GOD has a way of showing up right when you need him.
There was no traffic on the road. I got back to the hospital in record time to see her. My baby, 7lbs barely, 36 days from open heart surgery, 1 week from a tracheotomy, & pale white. Getting the 1st of 2 blood transfusions to help restore the blood she'd lost. Another set back. In that moment I realized that nothing is minor anymore. Things can change so quickly. What does the future hold?
I explained to my friend yesterday that many days come and go and I feel like my daughter has drawn the short stick. Uncertainty is a way of life for me right now. You can be the most faithful servant of GOD and you will still have these days. If a person going through something like this tells you they don't ever think about the uncertainty of the future they are definitely lying. If they tell you that never experience days where they feel like they can't go on, they aren't being truthful. People often forget that we are still humans.
The day Mylah went into her respiratory distress (July 24th) her life literally flashed before my eyes. I knew the moment I dreaded had found me. Scenes of her funeral; people crying, singing, and giving their condolences all played in front of me. Her obituary, her closet full of clothes, her crib, her name on her room wall. Having to explain to the clerk at Babies R' Us the reason for returning her clothing. All of this played over & over in her head. As I laid on that floor crying, calling out asking GOD not to take my baby, acknowledging that HE is almighty, powerful & able to do exceedingly above what any man can. I begged him to spare her. And he did.....
Tomorrow isn't promised, but neither is the next hour and the unknown eats away at me sometimes. I don't know if I will get to give her this big 1st birthday party that I've dreamed of giving her. I'll never know if she'll ever experience the things I did as a kid. I don't know if I will get to school shop, or pack a lunch, or go to a parent teacher conference. I'll never know what HE has planned for her life.
In these uncertain times, He's teaching me to appreciate the small things. Her smile, her amazement with the mobile spinning above her bed, spit bubbles coming from her mouth, her response to seeing my face. Those things bring me peace and help me make it to the next hour. With each hour those uncertain moments begin to fade and I'm able to move on. To celebrate and appreciate the gift of my daughters life.
Slowly Mylah is starting to return to the Mylah we knew before surgery. She's smiling so much more than before. She smiles at our smiles. She smiles when we rub her head. The nurses love her and she has her favorites too.
Right now we are trying to figure out her feeds. She had some days where she was fed, but couldn't hold it down. They are trying to let her rest hoping that she just needs time to recover from having her bowel disturbed.
People often ask how I'm doing. My response? As long as she's okay, I'm ok. Right now.. she's ok & so am I.
Thank you for all your prayers and continued encouragement & support.
Thanks to all those who continue to call, text , send gifts and even come visit.
Please continue praying for Mylah.
Pray that she gains strength. Pray she gains weight. Pray that this trach is temporary and that she will be able to maintain her airway on her own. Pray that her muscles get strong. Pray that she eventually will eat orally. Pray that she has strength in her legs and will be able to use them.