At 11 am, after several hours of breathing above the ventilator, they decided that Maya was awake enough to extubate. Orders were written, the respiratory therapist was called, and plans were made to give her first feeding post-surgery at 2pm. They figured she'd have 15mls, then 30mls at 5pm, and finally her 45mls at 8pm, at which time she'd be taken off the IV and moved back into TCN to be with Bobby. I called Peter with the good news and he told me he was on his way to the hospital from work. I went to pump so that I would be with her when they removed the ventilator.
Peter arrived at 11:45, just moments before the therapist. Soon, she and the nurse were scrubbed in and they pulled the vent. For a few minutes, everything seemed fine. And then Maya began to desat. And her heartrate plummeted. And suddenly, this perfectly pink, chubby baby, who has perfect lungs, began to struggle for every single breath. Her little chest heaved. Her lips turned more purple than pink and her skin was pasty white. Her little fingers were clenched into fists and her chest rattled as she tried desperately to breathe. Thinking that she might have some minor swelling in her trachea, the nurse administered a dose of epinephrine. Nothing. They decided to put her on CPAP, to give her throat a chance to open and the epi to work. Finally, she seemed to be doing a little better. I decided to leave her with Peter to go check on Bobby.
Fifteen minutes later, I get a text message: "Come Back". The chief neonatologist, the nurse practitioner, Maya's nurse, and the respiratory therapist are all working on Maya, who looks so small and fragile on the large table. Alarms are going off. The CRNP is bagging Maya, using a tiny baby-sized mask to breathe for her. Her tiny little chest caves in with each labored breath. Finally, the doctor tells us that they will have to put her back on the vent. And, as they use a fiberoptic tube, the reason why becomes crystal clear. Her trachea is swollen shut.
Normally, this is seen in babies who have been on vents for a long period of time. Either the tube used was too large when she was intubated yesterday and caused the edema, which then became worse when the tube was removed, or she just has a very sensitive body. They have no idea why; these are their best guesses. As they suctioned her, we saw blood in the tube. Her poor little body was just so battered and bruised today. I couldnt kiss it and make it better. I couldnt take anything away. I couldnt even hold her when she sobbed silent cries, unheard because of the tube protruding from her little mouth. I could only stroke her hair, hold her tiny hand, and kiss her forehead, telling her over and over how brave she was and how much I loved her. I have never felt a deeper anguish in my soul than being unable to comfort my child and knowing that I have to allow people to put her in pain in order to help her.
After she was reintubated, they moved her to the last pod in ICN. Her nurse stayed with her, as did we. She was finally stable and we were able to sit by her bedside and just hold her hands while she slept. At 3pm, they moved Bobby from TCN to be next to his sister. He just wanted to look at her the entire time. We had to hold him by her bedside and, if we tried to turn away or put him down, he would squirm and fight us until we moved in such a way that he could see her. When he fell asleep, I put him back in his bed. They were both sleeping soundly when we kissed them goodbye and came home tonight.
Right now, Maya is stable. They introduced 15ml of milk tonight and will continue, assuming she tolerates it well. The plan is to give her steroids tomorrow and then to try extubation on Friday. Hopefully, the meds will held keep her throat from swelling back up. Please pray. Pray that we will be able to hold our little girl on Friday and take away the horrible memories of this week.
She looks much better tonight. Her eyes are slightly puffy instead of deep purple and swollen. She still has a lot of secretions due to the vent tube, but the bleeding has stopped. She is drug free and isnt restless, so we are hoping this means she isnt in any serious pain. She can now open her eyes and focus on us, although she has to have eye drops every hour right now, which blurs her vision (and pisses her off). She's a tough cookie. She still has the strength to fight the nurses as they take her temperature or change her diaper. And our little chunky monkey holds our fingers so tightly that we would have to pry her fingers open to move them. She pushes her feet into Peter's hands for her nightly massage. And she will smile when she's kissed, even though it is hard with the tube... She will look up at us and melt our hearts with her beautiful eyes and little smile...
There are no new pictures... It is hard for us to see her with the tubes and I dont know if we will take pictures of this time... Suffice it to say, however, that she and her brother are still the most beautiful babies. They always will be.
And now, another NICU journey begins. Almost 8 weeks forward, and now 3 days backwards... Hopefully things will be better by the weekend.
Prayers appreciated. Continued prayers requested.
I can't imagine what you guys are going through Michele. This must be so excruciating the waiting. Your family is in my prayers. I pray dear Maya will be well very soon.
I'm so sorry :( Thinking about you and your little ones. Hoping for a speedy recovery and continued growth!
Always praying for Bobby and Maya.
Will send extra prayers for Maya.
Praying for you and Peter too.
I'm sorry to hear about Maya's very hard day. Our daughter had to be reintubated within hours of being taken off of the vent, and it was horrible. One tip, since they say hindsight is 20/20. Take a picture or two. You can always delete them or throw them away later. You don't have to share them. But, someday you might want them, when you're telling her how far she has come (and why she is the cause of all your gray hairs!!).
I'm in tears. I'm so sorry you guys have to go through this. Jimmie did amazing for a month and then had a blood transfusion and suddenly crashed. He ended up back on the vent for 5 days. That was definitely the worst week in the NICU.
Maya will recover and do great! I know she will. In the meantime I'm praying so hard for her.
Much love and prayers!
I am so sorry to hear about your tough day. I hope and pray it gets easier for you all soon.
I think you should take pictures of her for your own memories. No need to post them here or even look at them yet, but just so you have this piece of her story recorded for the future.
Keeping prayers and good vibes sent your way.
I am so sorry for the setback. I pray that it will be very shortlived and that Maya will be back in TCN by week-end. God bless!
So sorry to hear this. Sending so many prayers and hugs to you and little Maya, and all of your family.
Thinking of you and your little ones tonight. Especially Maya. Big brother sounds like he is doing a wonderful job of looking out for her.
Oh Michele. I'm so so sorry that Maya has had this set back. The memories I have of J trying to get off the vent are burnt into my memory and hearing about poor Maya struggling like that, it just breaks my heart for her and for you and Peter and for little Bobby. Poor, poor little darling.
I hope that the swelling stops and that she will soon be extubated. I hope her eyes heal up quickly and that the ROP has been stopped in its tracks.
You are all in my thoughts and prayers. Much love xo
I know that everything must seem overwhelming right now, and no mere words can fix it. I'm sorry you all have to go through this.
Maya is a big, strong girl. She's going to do just fine after she vaults her way over this hurdle. You are all in my thoughts.
I often talk about what you blog about each day to my family. Everyone of us is praying hard for Maya to be ok again soon. I don't know what else to say to make you feel better - Just hang in there Michele. Lots of hugs..
Praying that this passes quickly.
Poor Maya, Poor Bobby, Poor parents.
Oh Michelle I am so sorry you guys and Maya have to go through this. Ventilation is just awful. I remember how it felt to see Jordan like that. It is a painful thing. They don't call it an agressive life saving measure for nothing.
I can feel her fighting from here Michelle. She's a tough cookie. Hoping all goes well on friday and you can get rid of those awful tubes for good.
What a brave beautiful little girl Maya is, and a caring brother she has. Thinking of you all.
Sending you some love. The bond between Bobby and Maya is incredible. I'll keep all of you in my prayers.
Michele, first *huge hugs*...second continuous prayers coming your way for Maya and Bobby.
Oh, I'm so sorry she (and you all) are going through this. My heart just aches for these sibs who already love each other so much. You know you have my thoughts & prayers. Thinking of you all, today.
Michele, you and your family are on my heart and in my prayers. Maya is a tough, strong little girl. Just remember that the NICU journey is a roller coaster...I am here if you need me...always.
Lots of Hugs and love from PGH
Oh wow! Continuing to pray for a quick and speedy recovery for Maya. How touching that her brother will not rest until he is by her side. What a big protective brother he already is!
I'm so sorry! My heart hurts just reading this. I hope Maya can have a good day today and continue to get better and better!
Oh poor Maya!! I really hope she can get that vent out soon! Praying things go well the next attempt.
Praying for and thinking of Maya, and you all. It's so touching that Bobby is so protective of her already.
I am so sorry Maya has to endure so much pain right now. I cannot even imagine how terrified all of you were when they were working on her and all the alarms were going off. Sending you lots of hugs and strength and still praying so hard. =(
Saying prayers for your little Maya. What a scary and stressful day! Thinking of you and your family.
Goodness. My heart is in my throat. I'm holding her in mind as her strong little body works to heal.
((((HUGS)))) to all of you!! Sorry for the steps back but keep hanging in there. Thinking of all of you everyday :D
Sweet little Maya- I am so sorry she is having a tough time. I am praying for her, and got my neighbor praying and on her church's prayers list too. I am so glad you have a great NICU that lets Bobby be in there with his sister to help her heal. This is also such a blessing for you two- to have your babies together and to be a united family unit to help heal Maya.
Keep fighting, Little Maya. We are surrounding you with prayer.
I'm sorry Maya has to go through all this, and that Bobby has had to miss out on seeing his sister. I'm glad they moved him in to be near her - it will help her heal faster. Much luck to you all...I'm sure Friday will be a better day.
Will continue to pray...I am so sorry for all that you guys are going through.
And many, many ((hugs)) to you all.
Continued prayers for you all.
I'm so sorry it was such a terrible day. Sending lots of prayers for Maya, and of course for all of you.
That poor baby. It must be so hard. I am sending lots of prayers your way!
Oh Michele, I'm sorry. I check your blog every day at work and this was NOT what I expected to read. Now I sit here at my desk, trying to keep the tears in my eyes from running down my cheeks.
I will say extra prayers for Maya, and for you and Peter (and Bobby). I can only imagine how poor Maya must feel, and I can only imagine how helpless you and Peter feel just sitting by unable to make it all better.
First time to comment. I never pray, but I will pray for Maya (who shares her name with my 4 y old daughter!). Hugs, kisses and the best wishes from Argentina.
still praying for little maya, hope all is going better today.
I will keep praying for Maya's healing!
So sorry to hear about this set back. I'm thinking about you and Maya.
Oh sweetie, I know the NICU can be such a difficult journey. Many prayers and many hugs!
Oh hon, hoping this is just a giant step back before a few great leaps forward. Hang tough Maya! Like mum says, you sound like one strong cookie.
You hang tough too, mom. Sending you all my love.
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