Being home had it's challenges. Reid came home drinking pumped milk from a bottle fortified with formula. We had a home health nurse come over every other day and do weight checks on Reid and check his surgery incision. After being home for 1 week and Reid finally starting to gain weight, we tried nursing. He did great!! Yea another thing that I was worried about can be checked off my list. Then there was him pooping… out onto his stomach. This was a continual struggle, but after a while it was easy. He was constantly leaking through his diapers and I would have to figure out how to try and prevent that. Whether that was moving up a diaper size or adding a second diaper inside of his diaper, whatever worked. Then there was the diaper rash. At the time I thought it was bad because it was on his tummy… little did I know the diaper rash we would eventually be dealing with.
Reid as an infant was exhausting. He was a pretty good baby, had the typical baby growth spurts and basically cried for 3 days with each one. He hated (and still does) sleep. He and I hang out a lot at night together. But other than this he was a good baby. I could take him wherever, butI chose not to. If he were to get sick during those first 3 months it may delay his surgeries and after coordinating with all the different surgeons he did not need this.
As the months went on and my newborn turned into just a baby I really enjoyed this. I felt like I had forgotten that inside of my little man there was a lot wrong with him. Since returning from the NICU I had not googled tethered spinal cord. I was terrified. I didn't want to know about the surgery and how dangerous spinal surgery was. I didn't want to know how rare it was or the number of kids who had become paralyzed during surgery. About 2 weeks before his surgery I finally decided I needed to know. I needed to have some sort of idea of what was about to happen. So I googled it. Tethered Spinal Cord Surgery 3 month old baby. WOW. I was shocked. This wasn't as rare as I thought it was. And almost all cases were very successful. I was so relieved. The one thing I did notice was that the youngest child I had seen via google have the surgery was 9 months old… and Reid would be only 3. That was scary. But our surgeon was very confident in what he was doing and that was a comfort to us.
When the time came for his surgery my anxiety was getting stronger and stronger. I finally had to seek some professional help just to be able to sleep at night (when Reid was sleeping). It helped a little but anyone who knows what it is like to have a child who is going through surgeries knows that nothing will help take the worry away. It is debilitating. It made me want to shut down and run away and wish I didn't have to know what this amount of worry was. But I didn't. I kept going. I kept waking up 4-5 times a night and snuggling a little man and putting a pacifier back in his mouth… for the 4th time in 3 hours.
The night before his surgery was tough. I knew that I would be saying goodbye to Parker and not knowing when I would go home again. We were told that most cases went home after 3 days but it wasn't a for sure. His surgery was scheduled for a Wednesday with pre-op appt on Tuesday. So I thought home by Saturday would be great! We were blessed again to be able to stay at the JW house from the night prior to surgery until… we went home. It is such a wonderful place to be able to leave the hospital and unwind. The fact that they provide meals too is a huge plus. We had Reid with us that first night and he slept like normal… waking up 3 times just for the pacifier. We got up in the morning and walked our little guy over to the surgery floor and checked in. They let us go back to the pre-op area and wait. This was scary. the pre-op nurses were not impressing us. They were shocked to see that Reid had stomas. Um aren't they suppose to know a little something about their patient. They had no idea what to do. They didn't know how to keep his bag on because we weren't using a bag. They ended up putting on a urine bag over his stoma that leaked immediately because it was a urine bag. When it was time for them to leave with Reid it was hard. Luckily for me my husband was holding him when they did their "time out" and walked away. We handed Reid to the nurse and watched them leave. We lost it. We stayed in his pre-op room and cried and prayed for our little guy. We didn't know what our future would be like after this surgery. Would he be able to walk? Would he be able to have a normal future? Would their be complications? We had no idea.
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