Sunday, April 27, 2008

Cooper's Birth - the aftermath

Day 3
This is the day that I will always remember as if it were yesterday – it’s burned into my memory. My sister came by very early on the way to work, about 7:45-8. Jeff took her back to see Cooper in the nursery. We were expecting that he’d had a good night, and would be able to come to our room soon. However when Jeff went in there not only did he witness Cooper having an apnea spell but the doctor told him that he’d had 7 in one hour. They decided to hold him for a bit longer. Jeff went home to shower and get some fresh clothes since we were having visitors for lunch. While he was gone the neonatologist (Dr. Snyder) came into my hospital room and wanted to talk. She mentioned that the nurse practitioner had noticed during an apnea spell that Cooper was having a seizure. She said they wanted to do a CT scan just to check everything out. She explained that sometimes during birth a baby’s brain will have some excess blood which causes inflammation. She said if that’s the case it’s normal, and that the body absorbs the excess blood over time with no problems. She left and I immediately called Jeff, freaking out. I could barely get out the words to him about seizures. I told him to call the people who were supposed to be visiting and tell them not to come. I called my sister, who left work and called my mom to come stay. By the time Jeff got back Cooper was finished with his CT scan and they came in for the results. Dr. Snyder said “Well, we did find bleeding”, to which I responded “That’s good right?” She got a very serious look on her face and said “No, not in this case, he’s had some trauma and there is brain damage’. She went on to say that they couldn’t see how much damage had been done and that he needed both an MRI and an EEG which could only be done in Raleigh. They had already arranged a transport to take Cooper over there. My nurse got on the phone with my OB to quickly try and get me transferred. In order to be moved I had to be able to use the bathroom and be free of IV’s so I moved fast to get myself together. Jeff and I barely had any time to absorb any info. We on the phone with our parents and tried to explain what we could. My mom came up to be with me, since Jeff was going to ride in the ambulance with Cooper and my transport wouldn’t be until late afternoon. They brought Cooper by to say goodbye and it broke my heart. He was in an isolette with wires everywhere, and 2 uniformed drivers running all his machines. I said a very tearful goodbye and let Jeff go with him. There were two holes in the side that I could reach my hands into and touch him. This was only the second time I’d ever touched him, since he was born 27 hours earlier. My mom, sister and I sat and waited in my room for my transport to occur. It was hard for me to even remember that barely 24 hours ago I’d had major surgery; my body had no feelings of it at all. Jeff did a good job of keeping in touch and letting me know what they were doing. I don’t think he left Cooper’s side the whole time. After what seemed like forever, my transport showed up. Even though I was up and walking and feeling fine, they made me ride out on a stretcher. I remember everyone watching me as they rolled me through the birthing center, the main hospital and out through the emergency room. Our ambulance ride was not very comfortable, since it was bumpy and I’d had the c-section. My drivers were 2 ladies who wanted to make chit-chat with me. I had a hard time with this since my mind was focused only on Cooper and what I would find when I got there. We pulled up to the Raleigh hospital, which was huge! They parked at the ambulance bay and wheeled me up some back corridor. I got on the elevator with another woman on a stretcher – she had been hit in the head with a hammer. Finally I got to my room (1-A) and they transferred me to the bed. I had to wait for a doctor and nurse to come check my vitals and get me set up before I could visit Cooper. After they cleared me Jeff showed me the routine for the NICU. You had to scrub your hands, arms and elbows for 2 minutes with a sponge brush and soap, and take off all jewelry. It seemed odd, but I got used to it very quickly. He took me to the back bay where Cooper was. He was covered in electrodes, since he was in the middle of an EEG. This is when I first met his neurologist Dr. Schaefer. She took us to a conference room where she proceeded to explain to us that he’d had a stroke. We were both in such shock – how does that happen to a baby? We were both so overwhelmed that we couldn’t even think of questions to ask her. One thing Jeff did ask was “Do we have to worry about survival?” She paused a moment and then said “No, I don’t think that’s an issue in this case.” She told us that he’d be on the EEG until he had 24 hours free of a seizure. She explained that the seizures were a side effect from the stroke. His EEG was a video one, so he had cameras pointing at him, and a monitor beside the isolette displaying his brain waves. The nurses had a button they could push when they suspected he was having a seizure, and it would note that on the readout. They had started pumping him with Phenobarbital and Dilantin which would help stop the seizures but would also make him almost sedated. He had a feeding tube in his nose. We also met with Dr. Kicklighter, the neonatologist who would be on duty during our stay, since they do 3 weeks shifts. He felt that if he guessed conservatively that Cooper would stay 10 days (boy was he on the money!). At this point there wasn’t much we could do. Cooper was so sedated, and it would take 24-48 hours for his MRSA test to return. We couldn’t hold him until that came back. That night we ordered a pizza, and went back and forth to the NICU. We’d stand outside his isolette and look at him, talk to him, watch the nurse change his diaper and his feeding tube. I pumped every 3 hours – there was NO way I was going to have him miss out on breast milk. The lactation consultant had brought me a pump and explained how much brain tissue repair could be made from the milk. I had breastfed Jackson for 9 months, and knew that I wanted Cooper to get that same benefit, but I wasn’t sure how nursing would work with a NICU baby. If he couldn’t suck, I’d do whatever I could to get the milk into his body somehow.
Day 4
We woke up on Friday and realized that everything had sunk in, and now we had to deal with what we’d been given. Jeff had been researching the Internet nonstop – which wasn’t necessarily a good thing. All kinds of scary outcomes would come up on his search – cerebral palsy (which we since have learned Coop basically does have, in the primitive definition of the word), paralysis, speech problems, vision problems, recurrent strokes, etc. We spent the day doing the same things we had the evening before, going in to see Cooper, talking to family, doctors, etc. Two different pastors came by to pray with us which was wonderful and so comforting. My sister, brother and Holly came by and each got turns going in to see Cooper. He was still undergoing his video EEG. He needed to go 24 hours without having a seizure and the neurologist noted that he had had some that morning. She looked on the readout where they occurred, and then went back on the video to show the nurses what it looked like. Most often – nothing was even visible! Most of the times that the nurses had pushed that button occurred during normal baby spasms. At this point there really wasn’t much anyone could do since he couldn’t be held and was sedated. Jeff & I ate dinner in the hospital cafeteria. Wake Med Raleigh is a huge hospital and while we were walking down to eat it hit me that 2 days earlier I’d had major surgery and here I was – walking! With Cooper I never had the chance to stop and feel any pain.
Day 5
Saturday morning I was woken up very early by the OB making rounds. I was supposed to be discharged that day which I was very upset about it. She offered to tell my insurance company that I was having pain management issues (ha ha, see Day 4) which would allow me another night if I wanted it. I jumped at the chance. Jeff decided to go home and give Jackson some sense of normalcy so around 10:30 he left and I was all alone. That day went so slowly since I was alone. I watched TV, pumped, and went to visit Cooper. I spent a lot of time talking to the NICU nurses who were all wonderful. Late that afternoon the neurologist visited and told me that since Cooper had been seizure free for 24 hours she was going to remove the electrodes from his head – which meant I could hold him! Jeff was so bummed when I called and told him, I know he wished he could be there to hold him also. After she got his scalp all clean I was able to hold him and do some “kangaroo care” – basically I held him close to my bare chest. That night my friend Tracy came to visit and I took her in to see Cooper too. She watched me give him a bath and hold him. He was still so drugged up that he wasn’t opening his eyes. I still hadn’t heard him make a sound since his birth. I spent that evening going back and forth between my room and the NICU. I wanted to spend as much time holding Cooper as I could, but also needed to rest back in the room.
Day 6
I woke up this morning so conflicted. On the one hand I was happy to go home and see Jackson since I hadn’t seen him since Monday night. On the other hand I was so upset about leaving Cooper. More than anything I just wanted to be there with him, 24/7. Because of my surgery I couldn’t drive so I knew I would have to depend on the schedules of others to be able to visit. I spent the morning with Cooper and talking to the nurses. Right before Jeff came to pick me up the nurse took Cooper down for his MRI. I hated that I couldn’t go with him, but she assured me that she would stay there and that he was loopy enough from his medication that he wouldn’t be scared. I went back to the room and waited. Jeff, Jackson and Jeff’s mom came to pick me up. I know Jeff was disappointed that he didn’t get to visit with Cooper that day. Because I’d had a c-section they had to wheel me out in a chair, which was so silly since I’d been walking since Day 2. Jackson rode on my lap and I remember joking with the nurse that I’d birthed a 3 year old. Jeff had no sooner started the car than I started crying. It was the hardest thing I’ve ever done, leaving the hospital without my baby. The difficult part was trying to hide my tears from Jackson. After a few days of that I realized that it would be best just to explain to him that I was sad, and that it didn’t have to do with him. We got home and got settled, and John and Cathy went back that night to visit Cooper.
Day 6-11
We spent these days arranging rides for me to get out to Wake Med as much as I could. We knew that it was most important for me to be the one there. At the same time though I had to balance spending enough time at home with Jackson. It was odd; he didn’t even ask or wonder where the baby was. Monday and Tuesday I had very short visits. Monday Jeff & I went over and got to hear Cooper’s MRI results (very technical, but stuff we already knew) and we held and talked to him. Dr. Kicklighter mentioned they were going to start lowering his Phenobarbital dosage (the Dilantin had been stopped) which should help him wake up a bit. The ideal situation was for Cooper to be in a state that the medicine was stopping his seizures, but that he would be awake enough to eat and socialize. Tuesday my mom drove me over after we dropped Jackson off at school. This was my shortest visit, and the hardest. One of the residents brought me some paperwork on support groups. I made the mistake of looking at all the information, which included worst case scenarios. That afternoon I got in bed and cried and cried. Jeff came home from work early and I told him no phone calls and no visits for me. It was hard because people meant so well and kept calling to ask what happened and dropping off dinners. I just got tired of explaining the same thing over and over again. Wednesday, Thursday and Friday we were able to arrange it that I would spend almost all day there. So many wonderful people helped me those days, friends, family and preschool parents all arranged for me to get across town. I can never repay them for that kindness. On those days I’d arrive about 9:30-10 and leave around 4. I’d eat lunch by myself in the cafeteria. One of my favorite things about visiting during the day was when the doctors would make rounds. I always made sure to be parked in a rocking chair right in front of his station. Dr. Kicklighter and about 4-5 other doctors would visit each baby. Dr. K would give a rundown of the history and current state of the baby. Even though I know he’d done his best trying to keep Jeff & I updated on everything, hearing the way he’d talk to the other doctors was so much more informative to me. It was on these visits that I learned about them lowering his medication dosage, the fact that they thought it was a cord issue that caused his stroke, and I loved how every single doctor would make comments on how beautiful he was. I had to agree, he didn’t look like there was anything wrong with him. Everyday Cooper would get a visit from the physical therapist, Marie Reilly. She would do little exercises and movements with him, and it completely baffled Jeff & I that she could tell from doing that on a newborn that the only lasting effect she felt he would have is his right arm. The nurses loved taking care of him, and at the time he was the only full-term baby in the NICU, and the biggest at 7 lbs. Cooper was starting to have more alert times so the nurses really wanted him to try and breastfeed. I was so blessed to have been given a great nurse for Cooper on Tuesday, Wednesday and Thursday – Beverly Bennett. She made it her mission to get Cooper to breastfeed. Even when he was completely drugged up and sound asleep she’d try to get him to latch on. It wasn’t until Friday that he truly latched on for several minutes and we could tell by weighing him that he’d digested some milk. Hooray – the lactation consultant (Jane) called Beverly at home to tell her the great news! Thursday he had been upgraded to the lower level NICU and at that point was in an open-air isolette. He still had a feeding tube but when I was around they’d try nursing first. I will never, ever forget arriving to visit him on Friday morning. I walked around the corner and he was lying in his bassinet – eyes wide open! It was the most alert I’d seen him yet. The nurse said he had cried while she changed his diaper which was so exciting to me. Finally he was becoming more alert and waking up from his medication! Friday evening I agreed they could take out the tube completely and do bottles if I wasn’t there. Saturday morning I arrived to spend the day as usual but around lunchtime they started mentioning he could go home on Sunday. They basically said he could get the same treatment at home as long as he was eating fine. A couple of things had to happen before he left, so the nurses got everything in gear. They got the consent forms ready for his circumcision. He also had to have one more EEG to make sure no seizure activity was going on. The nurses there were fabulous enough to arrange for me to “room-in” for the night. What that meant was that they had an open hospital room that I could stay in with Cooper before we went home. Since I wasn’t a patient anymore the nurses wouldn’t check on me or help me, and I’d be on my own for food. Cooper was still a patient though, so the NICU nurses would check on him throughout the evening. Jeff came up with some clothes for me and Cooper’s car seat and we had dinner together in the cafeteria. After he left I had a mixture of fear and excitement at the same time. I was thrilled that Cooper would be coming home, but scared to death to have him off of all the NICU monitors. I’d gotten so used to all the bells & whistles. I knew what all the alarms and numbers meant. Now he was with me in a room, and I was supposed to know what to do with him! Around 10 pm the nurse came and got him for his circumcision. He’d be gone for about an hour so I tried to rest. When he came back I tried to nurse him, but he wouldn’t eat. I had to pump and give him a bottle. The nurse made sure to come in every 3 hours and wake us up (my exhaustion picked that night to finally kick in!) We would try our hand at breastfeeding but usually ended up pumping. When morning came I took him back to the NICU and got a shower and a latte. They came to do his hearing test, and his final EEG. At that point all we were waiting on was a neurologist to read the results, and discharge us. Finally some other doctor (not Dr. Schaefer) took a look and agreed we were okay to go home. We had to go through all kinds of paperwork – basically education on bringing home a baby. The nurses knew since we had already had one that we knew what we were doing. However we did receive very detailed instructions on what a seizure looked like, which scared the crap out of me. What if I missed one? The nurses had, and surely their knowledge was better than mine. I knew that I just had to have faith that the doctors would not release him if they felt he was in danger.
Finally – it was time! Cooper was wheeled out in his car seat, but in a little isolette. Once the car doors closed and we drove away the emotions hit us both. We were scared to death to be taking him home! We drove away from the hospital that both Cooper and I had learned to call our “home” and got ready to introduce him to Jackson and start our family of four!

And what a ride it’s been!

Wednesday, April 16, 2008

Cooper's Birth Story

Day 1
Jeff & I were on pins and needles awaiting Cooper’s arrival. We had no experience with this waiting thing, as we’d been induced at 38 weeks with Jackson. As Cooper’s due date got closer & closer, we both got more & more restless. Monday, April 14 I dealt with a major temper tantrum from Jackson, in which I had to physically pick him up – kicking and screaming – and drag him to the car. That evening I started having mild cramps, but I’d been having those for weeks. I went to bed and was awaken at 11:30 with a contraction. I was able to fall back asleep, but then was awoken every hour after that. Finally at 2:30 am (April 15) I got up and went to start timing them. They were so all over the place – 10 minutes apart, 8 minutes apart, 12 minutes apart, etc. I showered and they didn’t let up. Around 5:00 am I called my doctor to get her advice. Since I was attempting a VBAC she felt more comfortable if I came in to get monitored. We called my mom to come over and be there for Jackson, and then we were off! I got into a room and got settled about 6:30 am. A nurse was hooking up the monitor and immediately another nurse ran into the room asking if we needed help. Both nurses looked very concerned and then mentioned to us that the baby’s heartrate had dropped a lot, twice. They went to call my doctor and I mentally prepared myself for another c-section. After a bit my nurse came back with a shot to stop the labor. Dr. Flanagan wanted my body to take a break and get some fluids, and see how the baby responded after that. I was given strict orders though that if the heart rate dipped again, they’d take the baby right then. We relaxed for awhile and I got 2 bags of IV fluids. My mom and sister came to visit after taking Jackson to school. Jeff ate a yucky, greasy breakfast right in front of me! Time seemed to move quickly and my labor picked back up and the baby’s heartrate stayed good. One funny tidbit from that day – we had decided to donate the baby’s cord blood. To do that, you have to fill out a questionnaire with the craziest things on it, like “Is there a chance that the baby’s father is also the uncle”? One of the questions asked about travel out of the country, and Jeff wrote down that we were in Bermuda in July 2007. The woman came back to go over our answers, and got to that part and was counting back in her head. She said “So, 9 months ago” We both smiled and she figured it out! Around 2:30 I got my epidural, which was pure hell. It was worse than any labor pain. The anesthesiologist had to try 4 times to get a good insertion, and all the while I had a full bladder and the nurse was pushing the heart monitor onto my belly. It was miserable. The epidural was horrible all day, I felt so much pain. They gave me a bolster, where I’d push a button to add more medication but by the end even that didn’t work. I dialted slowly, but without any help and the nurses let me just go to sleep that night and hope the baby would drop lower. We sent our family home and tried to rest ourselves. I was in so much pain – every 30 minutes the nurse would come and change my position.
Day 2
Around 6 am I was ready to push and started trying. By that point my epidural was pointless and I was screaming. Dr. Tahtawi came in to watch me push and was gentle but honest when she told me that she didn’t think he was coming that way. She said she’d be glad to help with vacuum or forceps, but that he wasn’t even dropping below my pelvic bone. Around 7am I had such intense pain, especially under my previous c-section incision that I just gave up. They prepped me for surgery while Jeff went to call some family. He met me in there for the start of the surgery. This one was more uncomfortable and longer than my first one. He was born at 7:42 am, and weighed 6.12 and was 19 inches long. When Dr. Tahtawi pulled him out, she said “It’s a boy”! I waited and waited for his cry, but didn’t get one. I kept asking “what’s wrong, why isn’t he crying”, and no one would answer. Jeff stayed by my head, but from his angle could see everything, including the nurses resuscitating him with a bag of oxygen. After about 45 seconds he cried, and was joined by both Jeff & I. The anesthesiologist asked us his name and Jeff looked at me and said “We can call him Cooper”. They took Cooper to the nursery and Jeff went with them while I went to recovery. Our parents and my sister were in the waiting room, so Jeff went to tell them. Dr. Gelber came to see me around 10 am and explained that Cooper was having some apnea, which was normal for babies and that they were watching him for a few hours. We continued to get updates from the nurse practitioner neonatologist, and felt pretty comfortable that he’d join us in the room soon. During my c-section I received 2 doses of Fentanyl, and the doctors seemed to think that may have triggered his apnea. I was able to get in a wheelchair and go down to see him twice, and Jeff took my family and his down there. It wasn’t a sight I was ready for – seeing him with all the wires and monitors beeping. He was absolutely beautiful, though. I started pumping some milk right away, since I didn’t want him to have anything else. We went to our room for the night, and the doctors reassured us that he would most likely be able to join us first thing in the morning. We figured we’d better rest up while we could.