Christmas is Cancelled

Call me dramatic, but it is what it is.

This holiday was already going to be different because of Covid and the baby being in the hospital but Leonard and I came up with a pretty good plan to deal with that. Christmas morning was going to be spent with Xavier, we were going to take pictures in our matching pj’s and snuggle with him as much as possible before heading back home. Well, that all changed in a matter of moments….

Monday we got a call from the eye doctor saying that his laser surgery (mentioned in my last post here) was not successful on his left eye so now it’s time for him to be evaluated with another doctor in Chicago. I’m thinking ok, that’ll probably be sometime next week so I’ll be able to make arrangements during the week. No. He was leaving within the next 24 hours. LIKE WHAT?! The NP was on the phone basically booking his trip asap so we dropped everything we were during around noon and just went straight to the hospital. There was no way I’m letting people take my baby without me laying eyes and hands on him. Doesn’t even matter if I saw him the day before. HE needs his momma. By this time, I had already been crying like crazy. Leonard doing his best to console me, but he’s hurting too.

Why are we continuing to go through this?? Hasn’t Xavier been through enough??

So we arrive to his room and this sweet little boy is wide awake happy to see his parents early in the day not knowing what the hell is going on. I’m trying my best not to cry while everyone is explaining what the next steps are and handing me consent forms to sign, but it’s inevitable. The nurse tells me that we also need to pack up his stuff in his room because if he comes back he’s not guaranteed to be in the same room. UGH! Social worker is in the room letting us know our housing options and that most options are closed because of COVID, hospital in Chicago blowing up my phone, doctor in the room talking to me. COMPLETE CLUSTERFUCK, but organized. Then the transport arrives and it’s time to load Xay in the helicopter. Chicago sent a nurse and a respiratory therapist that would keep an eye on him the entire flight, and yep you guessed it, no room for me. So that means we will have to be separated. :insert tears: The NP asked to pray with/for us before he left. Once they took Xay out of his room, insert total meltdown by mom and dad.

The reason all this happened so fast is because the eye doctor wanted to lessen his chances of his retina detaching and the doctor in Chicago specializes in doing this type of eye surgery in little babies. The last thing we want is for him the be blind in one eye so I get it. It’s just not easy as a mom. Soon after we left the hospital we went straight home to eat, because we hadn’t had anything all day, and then pack. I was tired but I didn’t want to wake up super early to get on the road. We got to my mom’s house and stayed with her. By morning we made the hour and a half trip to the new hospital in Chicago.

The hospital is very nice but our previous hospital had us spoiled. We had to make 2 separate appointments to just see the baby and only 1 parent is allowed with the baby at a time. I go in first and find that he’s doing just fine and his helicopter ride went well. The nurse asked if I wanted to hold and I said yes. Soon as they put him in my arms something is wrong. He starts gasping for breath and his stats fall. I’m trying not to panic but as soon as they take him from me and put him back in the bed a swarm of 20 people come in and reintubating him. I cannot stand to see him so helpless so I just breakdown. It’s even worse because I can’t call Leonard to come to me. It takes maybe 5 mins to get him back together because he was fighting everybody. Hell I would too if all these people I didn’t know where surrounding me. During that time the eye doctor came but decided to come back later when Xavier wasn’t so stressed. Great now I’ve delayed everything because I wanted to hold him. He did eventually come back and had his exam. Xavier has stage 3 retinopathy of prematurity(ROP) in his left eye. The doctor doesn’t recommend surgery right now due to his age and he’s not at stage 4. So he will get medicine injected in his eye. Quick procedure but will monitor baby for about 2 weeks to make sure retina doesn’t detach. 

This all has happened in a matter of two days and Leonard and I are completely exhausted. Our friends are absolutely amazing though. Unbeknownst to me, one of his God Moms immediately went into action to find us a hotel close to the hospital so we didn’t have to make the hour and a half drive (round-trip 3 hours) everyday from my moms. She called on our circle for assistance with discounts (you know at least one person has a hook up) and another friend got us a room for a couple days. Once the word was passed down everybody just simply told us to let them know what we need. Like I can’t express how much I love yall. It brings me to tears knowing the support we have. It can get a little overwhelming for me to provide the constant updates, but I know you all care deeply and for that I’m grateful.

We are preparing to go see him at our scheduled times today and just waiting on the call from the doctor for when he’s going to do the injection. I’m praying that the outcome is successful and he can come back closer to home.

5 thoughts on “Christmas is Cancelled

  1. Jarryn Robinson

    Sending you all so much love and continuing to pray for healing for Xavier and peace of mind for mom and dad. You all are doing great! Peace & Blessings from the Ellis family ❤️

    Liked by 1 person

  2. Rebecca Burrow

    Tianna and Leonard, I am praying for the both of you and especially Xavier as you all continue to navigate hospitals and medical care. I am proud of you guys for having the courage to be transparent in sharing your story. No need to apologize for what you feel or think concerning this journey. God’s blessings, peace, and miraculous Hand be upon Xavier, Tianna, and Leonard.

    Liked by 1 person

  3. Yanick Goens

    Hey,
    I have been reading your story along the way and praying for you all. Never said anything. Have just been going into prayer for you all. Your son is beautiful. You are stronger than you feel. Just know you have more people supporting and praying than you know.

    Liked by 1 person

  4. Tania Price

    Thanks T for sharing, I am all caught up and praying hard for you guys. I think of you guys daily and wonder. Love you girl with all my heart and wish you and your husband more better days. I have seen that eye look many times. I am so happy he had it to give to you! Merry Christmas!

    Liked by 1 person

  5. Tenille

    Praying with Steve and Arielle as soon as she wakes up from her nap. Just got this. Love your spirit and your strength. Thank you for sharing your heart with the entire world! Keep pressing. God IS Able.

    Liked by 1 person

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