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what?
The Dr's were rushing around him and monitors were screaming at me. I couldn't see him because they were all blocking him but his nurse came over and said he was okay. Sometimes with little babies morphine makes them so sleepy they forget to breathe. It wasn't uncommon and they weren't worried about it. So we sat down. We watched Reid, watched the monitors and waited. About 20 minutes later I watched his breath counts and oxygen levels fluctuate and then go down, down, down. His nurse spoke loudly to Reid to wake up and was rubbing his chest with her knuckles. He started to turn blue almost instantly. He finally took a breathe and pinked up right away. Wow. That was scary. I watched my child stop breathing. I watched his nurse look scared at what happened. I was terrified. The Dr. decided to put Reid on room level oxygen. 21% only, the nurse described the breathing tube as riding a bicycle and gavin the air rush at your face. She said the air will remind him to breath by tickling his nose. So we sat and watched the monitor. The oxygen level didn't change much but his breathes per minute did. It was ranging from 30-12. The monitors would beep if it went below 15 so it beeped a few times but the nurse said he's okay, babies sometimes just hold their breath and it's okay. We kept staring. Hours went by and we had to go pack up our stuff and move to the JW House. I was shaking when we left. I was so scared about something happening when I wasn't there that I couldn't speak. Getting back to the house the best thing possible was waiting for me. Parker. He made me smile and laugh and that made me mentally able to keep moving.
That night I called the NICU 3 times in the middle of the night to check on Reid's breathing. They said he was doing great. (deep breaths) I was able to relax for a short while. The next morning Michael and I got up and started making our walk to the hospital NICU. That walk is terrifying. All we could think is what will today bring, what will he look like when we get there, what will happen today, what oxygen level will he be on, will we get news, when will the surgeon come by, what will happen, when will we go home, and the repeating question, WHY?
Luckily where Reid's pod was when I first walked into the NICU (before getting buzzed in, washing our hands, calling his pod area and having a nurse let us in) I could see him. I could see if there was an oxygen machine there and what the number on it was. That was what I needed to know before I spoke with his nurses. Before my knees could possibly buckle beneath me I needed to soak this information in myself and be prepared for what they said. Reid was on oxygen for a total of 2.5 days and it never went higher than room oxygen.
I felt like every time I saw Reid he would have a new wire on him, or it would be out only to return the next day.
Unfortunately I do not remember much of the rest of our 2 week stay in the NICU. When I think back on that time I remember little moments.
I remember when I first walked in and he didn't have the oxygen tube.
I remember walking in and seeing him awake more and more.
I remember sitting in the home of the JW house and watching Parker play with my Mom.
I remember when Reid needed to be sedated for an MRI because his last scan was blurry and the surgeon thought that she saw something on his spine.
I remember continuing to hate the walk over to the hospital. Every day was a new complication.
I remember how we struggled between getting a CT scan for such a small baby or another MRI.
I remember we decided to do both.
I remember Dr. Sullivan confirming our fears, Reid had a tethered spinal cord.
I remember that with all of his complications no one knew what to expect.
I remember that a nurse had printed a medical article about a child with 2 of Reid's anomalies (I don't remember which ones).
I remember reading that article. The child had spina Bfida. I remember being not being able to breath as I continued to read the article. I remember in the article it talked about how rare 2 of these anomalies together were (and my child had more than those 2). I remember when I got to the end of the article there was a blurb. *Further research on child ceased due to child's death.
My heart stopped momentarily. I felt like I couldn't move. I knew I was being absolutely still but it felt like I was shaking uncontrollably and sobbing.
I remember that Dr. Sullivan luckily came by soon after reading that and I questioned her about Spina Bfida and she said no Reid did not have this. I asked about life expectancy. She said that nothing Reid had was life threatening.
I remember breathing again.
I remember our very first "shift" in the NICU where we didn't leave with more bad news. It was so refreshing. It felt like hey, maybe we can handle this. Maybe our world isn't going to end.
I remember our "pow wow" with all of Reid's specialists, his general pediatric surgeon, neuro surgeon, neuro surgeon's physicians assistant and his pediatric urologist. We all sat in the lobby of the NICU in the tiny toddler chairs and talked about Reid's anomalies.
From that meeting we knew that Reid would have a minimum of 3 more surgeries over the next 6 months. He would need his spinal cord untethered, his double colon to be joined together to make one large colon and a fourth surgery to take his colostomy down. This would hopefully be his final surgery. None of his surgeons or anyone they had spoken to had encountered a person with Reid's exact anatomy so they weren't exactly sure how to handle him. So they decided to take it one complication at a time and correct them alone rather than together. As far as Reid's urology is concerned at that point everything was working perfectly so no need to do surgery at this point for that. Possibly in the future but he would be getting scans every 6 months to check the function of his bladders and kidneys.
We had a plan.
In 6 short months my boy would be pretty much just like any other kid. No colostomy bags, no spinal cord injury weighing on my mind, no misconnections inside of him.
My child would be "normal".
We were elated.
Now when were we going to go home?
Next hurdle! Reid had gained almost a lb in fluid from his surgery and sedation and had started loosing it. When it was getting close to us going home we discussed his weight. He wasn't eating much on his own because he had a feeding tube. He rarely nursed and mostly got pumped milk from a bottle but wasn't taking much in. When his Dr's all cleared him from their speciality the pediatrician decided to let us do the "room in" night. So back to our bunker we went but this time with our baby. It was a version of the first night I wanted with my baby. He was in the little plastic bed next to me and my alarm clock was going off every 3 hours. I tried nursing him, but usually had to end with a bottle. Even then he would fall asleep and difficult to wake. I had a feeling that he hadn't eaten much that night. At 8am his nurse came and took him back to the NICU and weighed him. He had lost .2lbs we wouldn't be going home. So back to the NICU he went and we waited to talk with Dr's. At this point he was at his birth weight so I didn't understand what the problem was, but they explained that he isn't taking in enough to gain any weight and had been loosing weight for 3 days in a row. I think that they were too much in their NICU mentality. They were used to tiny preemies where weight loss in huge. Well my child was almost 9 lbs… it was okay that he was back at his birth weight. We discussed what to do. The Dr. decided to give it another day. The next morning, down another .2 lbs. This was the first time he was below birth weight. This was not happening. After all he had been through after all we had been through him eating was keeping us here. So the feeding tube went back in. They were feeding him that way and I stopped nursing. He was still getting pumped milk but just was falling asleep. FRUSTRATED!!! So we discussed what to do, his Dr wanted to keep him there and on a feeding tube. But we were done, we wanted to go home. I made a point to them that I like to think is what sent us home. I said he is loosing weight… an issue that if need be can be taken care of at his hospital closer to home (we were 2 hours away). Another child who needed this high level of care could be in his place while he went back to his home hospital. So they discussed discharging him and having him re-admitted on a failure to thrive diagnosis. Seriously.. my 9 lb child failure to thrive? Whatever was going to get my back to my toddler who had left the day before. Then the Dr. came back and said "You wanna go home?" Um is that even a question!!! YES! So after 12 long hard days in the NICU we packed up our little boy, bundled him in his car seat, got our complimentary beanie from the hospital, and made the 2 hour drive home. We were ready to start our life as a family of 4.
As we were getting ready to leave the JW house that had become our home over the last 2 weeks a package arrived for us. It was a box that was from a town I didn't recognize so we were curious to who it could be from. When I opened the box I saw a care package with candy, gum, shampoos and conditioners, snacks, books for Parker, beanies for Reid, and a note. This amazing package was sent to me from a group of amazing women I met over the internet (yup I'm that Mom and proud to be!). These women pulled their money together and gifted my family so many wonderful things. As I read to note to my husband I choked up and starting crying thinking about how special this made me feel. These ladies who I have never meet care that much about my family and I that they did this. It was a beautiful gesture and I so dearly hope to meet them all one day and give them a hug to thank them.
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