There were many different stories parents were sharing. Some babies were born at 23 weeks and all they were waiting for was to gain weight so they could go home. Others had diagnosis' that needed surgery like my Leila. When it was my turn I talked really fast and stared at the table. I didn't say much about her except that surgery would be soon -it was the next day. I've been to nearly all of them since we've been here and I've become social friends with a few parents. For me, even though what Leila has had to fight for I am so grateful it's not as bad as some of the other babies in here. Those parents are so strong and they are that way for their kidlet.
We stayed on the ventilator for about 4 more weeks. Things happen really fast here in the NICU and one day I was told they wanted to get onto a smaller ventilator by the weekend because she was managing so well on the jet being on the lowest settings. Two days later, I walk into a new ventilator that I was able to hold her on. Of course, with my luck it was Janet. She says "I make shit happen". She said they would monitor her and see how she would tolerate the new ventilator and then later I could hold her. Within the next four hours there I was sitting in a chair being passed my tiniest baby. (that's a separate post.) Since LeiLani was doing so well on the new ventilator they got rid of the jet for good and she was moved into a room where two babies share one nurse. It was super overwhelming and it really depressed me to be in there but it just meant she was doing so good she didn't need so much attention and that she was closer to going home.
Her recovery has been a lesson in strength. For her, she doesn't even know how drastically different her life is from other children. She thinks it's normal to be hooked up to machines, hearing the beeps from monitors around her. This is her life and it's her normal. Beth pointed that out to me and it gutted my mommy heart. I hadn't even looked at it like that. So many times I find myself sucking up all of the pitty in our situation because it has been so hard on me and it has been so hard on Kyle. But in the end LeiLani is in the hospital. It's LeiLani who is being poked and living in the hospital. It is LeiLani who is recognized by the state of Utah as institutionalized because she is essentially living here. In the end, it is her that deserves the pitty not us or anyone else. Despite her hard start to this life she smiles every morning I get to the hospital to sing my made up happy morning song. She stares at me like I am her God. She won't look at anyone else if she knows I am near I have to hide ha ha. She keeps me strong. She reminds me that it doesn't matter what you have to trail through in this life you just need to smile and love. She is my everything.
I have loved just about every single nurse I have come to know here. But, it's not all sunshine. I try to focus everyday to be nice to everybody even when they don't deserve it. It's sad I have to be that way but I have gone from a very unkind person to someone who try's to understand everyone and be kind. That doesn't mean I don't lose my shit though. There was one specific nurse I will never forget for the worst and I hate that. My personality walled with her and I wanted to push her out of the window. I was stuck with her for two nights and even though I hated her, she was good with Leila which made me hate her more. I did get to complain about her to Amy and that made me feel better.
When you first get into the NICU, here at least, you think it's going to be forever. There is thick fog and you don't see the milestones you'll see your child reach and you think that "home" is imaginative. I had a few days during this that I worried she'd do good and then take steps back and even feared her life. It makes me panic when I hear her sound groggy because I think she's suffocating. I know that no one would ever let her aspirate on her secretions and I always apologized when I would overload my concerns about her needing to be suctioned again and again. Extubation was really sad to watch but I was more filled with happiness that one, I could hear my daughter cry and two, that she would no longer need suctioning. All of a sudden I think, wow, every week there was less and less at her bedside and now, there is almost nothing. We took away ventilation, we extubated her, she got her strips off her incision and we took out her IV. She isn't on nutrients and the drip machine is gone. She is off of sedation meds and they took away her reflux medication. We have eight days left of Morphine and she's learning to bottle feed so she'll get her feeding tube out. This is how I have confirmed her care is extraordinary. She survived CDH and has overcome her trials with such a fighters attitude. I am glad I have a feisty daughter. Proud even. She won't be taking any of your shit.
To hear LeiLani could be going home in the next week and a half is overwhelming on a lot of levels. I have a new environment to get her used to and I have responsibilities I didn't have before. BUT I get my baby, Kyle gets his baby and we get to be a family together instead of just on the weekends. I have loved the care that PCH has given my Hine and I have also loved the care I have received myself. These are the people you want surrounded by your child when they're sick.
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