We never took down the "Welcome Home Neely" sign. It's still hanging up. It was just so pretty and such a well-earned celebration ... I guess we just didn't want that party to end. Having Neely home was wonderful and stressful in all the ways it usually is when you bring home a newborn. There were sleepless nights and there was lots of crying, lots of pacing and cuddling, and lots of schedule adjustments. We were a bit worried about how Laney would deal with having a little sister, especially one that requires as much attention as Neely does. I have to tell you that when I die and my life (supposedly) flashes before my eyes, the images of my sweet Laney loving on her little sister will be among those that put a smile on my face and let me know I've lived my life well. She is such a good big sister. How do you teach a 22-month old empathy? Who knows, but I know my little girl has it. She'd look at Neely and keep saying, "Awww". She'd try to give Neely tips on what to do if you are sad, "Aww, baby sisto sad? Go Uncle" (apparently you go to Uncle Jack when things are rough with mom and dad). "Baby sisto, don't cry". "Mommo - Baby sisto booboos?" (she would say this to me to tell me to give Neely milk). I can't tell you how many times she'd hug her and kiss her or want to check on her - "see Baby sisto?" She'd even hold a mirror up to Neely while combing her hair. Laney would pretty much sleep through Neely's late night crying sessions. She never once got jealous or tried to take the attention away from her. It was so sweet and I am so proud of Laney for the little person she is already becoming. A good person.
Laney loving on Baby Sisto
Laney combing Neely's hair and holding up a mirror for her to watch
We also enjoyed getting to know Neely's home health nurses. Olga & Youlan ... amazing people. We'd see them twice a day and they were quickly becoming family. They took such great, proactive care of her. Olga even went to Neely's pediatrician appointment and advocated on her behalf on certain issues. We should have known how superior her home health treatment would be because when Olga first met us in the NICU, she was greeted warmly by all of the NICU nurses - they know her and love her. We are blessed to be in their care.
So ... how did we get here? Back in the hospital? It started Wednesday night when we noticed increased drainage from Neely's mucus fistula. This site (previously the ileostomy) had always been pretty inactive - the easiest of the numerous protrusions from her abdomen. Just put gauze on it and change it every diaper change, no big deal. There was usually no drainage. There was a little more drainage this time, so we put some gauze down and didn't think much more of it. We put Neely to bed and tried leaving a radio on in her room, thinking she'd sleep better with noise. It worked like a charm because she slept alllll night. It was the first sleep I'd had in 4 days. I felt great! In the morning, I lifted her up to wake her and change her, but noticed she was covered in something sticky. Oh no! I figured her ostomy bag had leaked and the poor thing had been sleeping on that harsh stuff all night. When I unwrapped her, it was horrific! A total shock. The mucus fistula was oozing a ridiculous amount of brown stuff. Her diaper was full of brown stuff ... it looked like a typical newborn poopy diaper. I flipped out, woke up my brother, ran around frazzled trying to figure out what it was. I called Josh and I know deep down we both prayed it was some kind of miracle. This fistula is connected to her unused intestines and shouldn't be producing anything, but poop was flowing through. Flowing.
Jack helped me put a makeshift bag on the fistula (which soon leaked) and I waited anxiously for my mom to get there so she could help with Laney. She got there and we tried again with 2 ostomy bags, which have held up, so far. Then, we waited for Olga and Youlan to come over. Neely did not have a temp or seem to be in any pain, so I wanted the nurses to look her over before I officially panicked. Olga thought she looked fine, but wanted to start measuring her fistula output anyway. We left messages for the GI doc and the surgeon, and everyone said it was nothing to worry about.
4 hours later, when Olga was scheduled to come back to hook up Neely's TPN, she became concerned about Neely's color and the continuous output of the fistula. She worried that Neely was becoming dehydrated from all the fluid loss. "Out of an abundance of caution," she said, she wanted us to take Neely to the ER. She made all of the necessary phone calls to make this process as smooth as possible.
We got to Dell Children's around 5 and were whisked away immediately to a room. She had x-rays. She was put back on all the monitors. They tried to draw blood about eleventy million times, but Neely's veins are so tiny. She is an incredibly tough stick. They could not get the sample. They tried getting blood from her Broviac catheter, but it apparently has a weak spot now and cannot give a blood return. Finally, the ER doc did an arterial stick and did get a sample. She had a catheter placed to obtain a urine sample. Poking, prodding, pulling, pushing ... it sucked. Neely was over it. She had had so much and all I could do was look her in the eyes and hold her hand and tell her it was okay. It felt like a lie. Over and over ... "It's okay, baby. It's okay". She seemed to look back at me so confused because ... we both know it's not okay. I wonder if she hates my face because it's so often the one looking at her when all these yucky things happen.
We were admitted to the IMCU late last night. We were not in the room long before her nurse came in and told us Neely tested positive for C.diff - a horrible bacteria that can flourish when a patient is on antibiotics. Josh and I had read about it a week prior in a newspaper article. "Did you read this? This sounds awful to have".
It felt like a punch to the gut, which I guess it truly is for Neely. This long length of unusable intestine is making her sick. She can't use it to process food, but it sits in her belly and can make her sick. What the heck is that???
Olga came to visit Neely this morning (for no other reason than because she is an awesome, compassionate nurse). She said that Neely looked better and that we should not worry because they caught this pretty early. She reminded us to look at Neely and see how good she looks. She is not on a ventilator. She is sleeping peacefully. A baby in pain would not be able to sleep. Thank God for Olga!
So here we are. It's different here at Dell. We can sleep in her room and be with her around the clock. I feel like we need to be here with her since they don't know her as well. I want one of us to be by her side through all this. I miss my Laney, though. That crazy little girl.
Oh friends ... please pray that she will get through this one and the next one and all the ones after that. Please pray that she never remembers this.
My sleepy family, my little slice of heaven.