They always say the nicu is a rollercoaster full of ups and downs...and even though I knew that, I was NOT prepared for what was about to happen to us. It was definitely a ride of being super high to all of a sudden plummeting with no signs of coming back up.
Allie became very very sick. Her stomach was not able to process the formula food she was being given and she developed a disease called NEC. Necrotizing Enterocolitis happens in a small amount of preemies but at the same time its one of the more common diseases that they get because of the immaturity of their digestive system. She started to spit up the food she was being given and the doctor decided to do an xray and that's when he found out what was going on.
To make matters worse, the bacteria that was most likely in her abdomen (from NEC) had spread to her bloodstream. So my poor sweetheart was infected all over. I cant imagine what she must have felt like.
She got test after test and had iv's coming out of every limb. It was so awful. We were hoping over the course of 2 days that antibiotics would do the trick, but they didnt. Her belly got discolored and super distended and never got better. It was finally decided late Monday night that she needed to be transferred to UCI incase she needed surgery.
Watching the UCI team come over and set her up to be transferred was just torture. She had to tolerate so much to be moved from hospital to hospital..her little arms were still moving around, which was great to see but at the same time broke my heart. Its hard for me even as I write this to relive that night. I cant put into words what it feels like to see your child suffer and put up with things that she is too young to understand. I think its even harder when your child is only 10 days old. How she ever made it through that week, I will never know.
We met up with her at UCI and came in as they were setting her up in her new room. She had even more wires and more iv's and all kinds of doctors were coming to examine her and figure out what they should do next. I spent that first night with her at UCI, even though I couldnt hold her and she was so out of it from drugs, I felt better in telling myself that she knew I was there.
She started having blood and platelet transfusions since her numbers kept dropping, and she even had what is called a broviac put in her chest. A broviac is pretty much a life line for people/babies who dont have enough iv sites or who dont have strong or long lasting iv sites. Allie has been poked everywhere she could. Her veins were too small and her arms and legs were too tense to try and start sites anywhere on her limbs. So the broviac is surgically put into her chest and with it, she can have many iv's tied to it. She can get blood drawn from it, meds put in it, etc. Im so thankful that it worked for her as her other option if that didnt work was to have one in her jugular or even in her head! I dont even want to think about that!!
It was finally decided that she was to receive an abdominal drain in hopes to soften her belly a little bit...pretty much a last ditch effort before surgery (their last resort). So around 1 or 2am she had an abdominal drain put in which looked pretty funky. It was, essentially, a long piece of tube that went in one side her her stomach and came out the other. It started draining fluid which was great...her stomach ended up looking a little better but the discoloring was still there and her stomach was still pretty tense. After 2 days of no high change and continuous positive blood cultures (in which they test to see if she still has bacteria in the blood) it was finally decided that Allie would have exploratory surgery to see what was going on in her abdomen.
I dont know if I can even put into words how screwed up my life was that entire week. I sat by Allie's bed side so many times, wondering if that was the last time I was going to see her...wondering if my last mental images of her would be of suffering and tubes in her throat and iv's in her skin and puffy little eyes and a discolored belly and chest. As much as I could sit there and stare at her all day, she was really hard to look at.
I broke down many times...the thought of losing my baby absolutely killed me inside. As much as I tried to have hope and stay positive, it was really hard to ignore the fact that she was sick enough to possibly not make it through. And the doctors and nurses dont sugarcoat anything for you (and I wouldnt expect any different) so when they cant even give you an optimistic outcome, you know it has to be pretty bad.
I didnt necessarily go through a "why me?" phase...but more of a "why her?". Why does my poor sweet baby have to go through so much during a time where she shouldnt even be on the outside yet? Why does this happen to any baby at all? This is the only thing I still dont understand. Why was Allie chosen to fight this fight? Why why why why why???
I spent many hours trying to bargain with God...and I know that that's not the point of having faith or of praying, but I didnt know what else to do. I pleaded with him to not take my baby. I kept telling him that we needed her here more than he needed her there. I couldnt imagine my life without her and didnt know how to wrap my head around the concept of her possibly dying. I hated even typing that just now. Its something no parent should ever have to consider. What kills me more, is that this is a sad reality for so many parents every day. Its just not fair.
On August 4th around 5 pm, Allie went under the knife so the doctor's could take a look at her intestines. Saying goodbye to her before we had to leave the nicu was the most awful thing ever. (side note: it was totally awesome that the OR came to her instead of her being taken to the OR...pretty neat that they can do surgery's like that right from her bed. The thought of them having to move her really frustrated me so I was so happy that they didnt have to go that route). We just told her we loved her, held her hands and promised that we would see her in a few hours. She had been so strong up until then and I was so scared that this would be too much for her poor little body to handle. Imagine going into surgery with a blood infection!
We finally left and went out into the waiting room where our friends and family were waiting. It was so nice to have such a great support system there with us. And surprisingly, it was a lot easier to get through those few hours by almost pretending nothing was wrong. We watched Family Feud, joked around, talked about the baby shower...it was nice to almost feel like something was normal for once since Allie was born. However, that was quickly erased when we saw the doctor finally come out of surgery.
Exploratory surgery was definitely the right choice for Allie. She ended up having to have about half of her bowel removed...in 3 different sections. She also lost her ileocecal valve as well which means she's going to have a long road ahead of her with most like life long nutritional adjustments and requirements. (see short bowel syndrome)He said it was definitely not as good as he expected it was going to be, but he also added that it could have been so much worse. We are so thankful that they went in when they did!! She has an ostomy on her left side...and in a nutshell, it pretty much means her intestine is on the outside of her body while the rest of it recovers and grows inside so they can go in and resect her later (like in 10+ weeks). So where her two little holes were for her drain, there are now 2 parts of her intestine just chillin there. Its weird to say the least...but honestly not that bad to look at. Allie doesnt seem to mind it (then again she is heavily drugged haha!) but this is pretty much what is saving her life, so I'll take it!
BUT she is here! She made it through surgery and now has to battle with recovery! I hate that it wasnt cut and dry like "ok surgery is done and she will recover just fine and everything will be perfect the end". Because of her bacterial infection it added a whole new level to her recovery. She pretty much has to fight 10 times harder than normal because her body is already putting up with enough from the bacteria eating at her tissue and weakening her. She's still on a crapton of antibiotics and even received blood and platelet transfusions during the surgery...but we are so so happy that she made it through! The hospital team told us to expect her to get supper puffy a few days post surgery so we are already preparing ourselves for that. She honestly looked pretty darn good when we got to go see her after surgery. I am so very proud of our little girl...such a fighter!!!
After a long and emotional couple of days, Michael and I finally slept, at home, in our own bed, with no alarms, no pumping, nothing. It was so wonderful. We may not be able to be full time parents to Allie right now, but what we can do is be there for her as completely as we can every time we visit. And to do that, we need sleep. We need food, water, rest...things that we weren't getting a lot of. Taking a few hours for ourselves was the best thing for us. I felt totally recharged and more emotionally stable the next day. I finally understood the impact that a lack of sleep can have on you! I treasure my sleep that much more now!!
August 5th - Happy Birthday Dad!!! I think it was a gift for all of us to be able t go visit Allie in the hospital that day. She was puffy, but not as much as I was expecting. We just sat with her and talked to her and admired how cute she still was :) We even got the chance to go out and celebrate Dad's birthday with lunch at TGIF's. I swear I take every bit of normalcy I can get right now...haha as long as it fits within my pumping schedule ;)
Her blood culture came back positive today, which is ok because she JUST had surgery and the antibiotics are finally having a fighting chance to work...whereas before they were just containing the bacteria but not really killing it. I cant wait for the day that we get a negative!!! I am so hopeful for her!! I just feel like if she can get through this, she can get through anything!! I think God agreed with me that we need her here more than he needs her there...she is meant to do big things with her life! I just know it!!! I certainly know that she is not out of the woods yet and we have a long road to recovery, but today I breathed a small breath of relief. We have crossed such a major hurdle and Im praying this is the first step of going back up on our rollercoaster.
My baby girl, I dont know if I will ever be able to express what you mean to me and how you have impacted my life. You have been in this world for 13 days and have endured more than a lot of people have in their entire lives. Im not sure why God chose you to fight this fight but he obviously knows what he is doing because YOU are showing US how to live. I sometimes feel like all the "things" I have been through in my life, good and bad, just dont even compare to you and the things you have already had to go through...and I almost feel guilty for ever complaining or whining about things that are now so minuscule. I really have no right to complain about anything. I have you and your dad and my life cant get much better than that. Thank you for opening my eyes. Thank you for choosing me to be your mom and thank you for having this unbelievable will to live. I love you to the moon and back xoxox
Subscribe to:
Post Comments (Atom)
This made me cry. Prayers to you.
ReplyDelete