JenniferTenney

I don't know how long I will do this for, but this is my second year and I still find myself reliving Dakota's days in the hospital, especially momentous days. I have been doing it like crazy the last week .... not even trying, but my mind just flashes back to emotions of that time. This is going to be a ramble, but I need to get it out. Of course on Dakota's birthday, I relived the stress of her birth, and saying goodbye to her ... but I also remembered how I was eerily calm that night. I remember sitting in the hospital, reading my book that my sister gave me on "The Bro Code by Barney Stinson" eating crackers and gingerale and calling in to Shands and pleased that my little girl was stabile. On the 26th, I relived the dissappointment and fear I felt when I called in that morning and heard she was no longer doing so well. I remember the hospital handing me a knitted christmas hat and said that maybe Dakota could wear it later. I knew that it would be so long past Christmas when she could wear a hat, that she would never wear this one. This hat made me aware that most moms were holding their babies now, and I was holding a hat to put in her rememberance box that she would never wear. I still have that hat and look at it as a symbol of what was so very wrong with Dakota's birthday. I remember packing for Gainesville in a daze (and what I packed brings back memories, like the scarf I am wearing today). I remember Dr. Kays calling me and telling me that he thinks Dakota needs to go on ECMO. She's doing all right, he said, but they are at the end of their options, other than ECMO, so it's time. I said yes on the phone. I remember riding up to Gainesville, waiting for the phone call confirming that she was safely on ECMO and trying to force myself to eat a plain chicken sandwich from McDonalds (I did not want to pass out, so I was trying to force myself to eat). I remember arriving that night and being so happy and so relieved to see Dakota. She looked exactly like I expected her to look on ECMO. Her numbers looked good. The nurse showed me her chart from the day and showed me how she had started to crash and then showed me her last couple of blood gases since she'd been on ECMO and how they had improved. They actually had to turn the flow down already since her oxygen was a little too high. I remember how good it felt to hear this. I remember feeling pride for my girl. I remember grabbing my hands behind my back so I wouldn't touch her and going up to her and telling her we were there and we love her and taking her first picture. I remember the nurse telling me I was very calm- she asked me if I was just a calm person. I was very proud of myself and told her that I had prepared myself for this. Honestly, I was in shock. Dr. Kays told me that he was leaving for vacation and that Dakota would be on ECMO a minimum of 10 days while he was gone. He said he was leaving me in great hands and would be in contact as well. He was happy with Dakota's status on ECMO. My parents called to tell me they were driving up. I remember telling them that was silly since they were scheduled to ride up with the motorhome the next day - there was no need to come tonight. My dad said that they just wanted to be there for me. I know now that what they wanted was to be there with me if she died ... because when she went on ECMO, they believed she was going to die. I did not believe this at all so I didn't even realize what they were saying. I just thought they were being silly. I remember the morning of the 27th, my parents were waiting in the NICU waiting room when we got to the hospital and I showed them with pride my baby. I showed them the chart and the machines the nurse had showed me the night before and told them what are good numbers and what they were looking for. Dakota's numbers looked great all day. Her sats were at 100. Her blood gas oxygen was over 100 her CO2 was under 40. I worked on pumping and sat by her side all day. I read the notes in her notebook and soaked up everything I could about what to look for. I talked with her and they let me hold her little hand (Dakota didn't mind a little stimulation so I was able to touch her quite a bit during her ventilation period.) I started reading the Twilight Series next to her bed. I went to toys-r-us and bought a breast pump. Again, I was eerily calm all day. That night I called in every three hours, again all good news. The next morning (December 28th) I woke up with a pit in my stomach, anxious to go see my girl. But Derek was working on getting the wireless internet set up in the motor home and he wanted to get it set up before we left so he could work when we got back from the hospital that night. I was getting angry, I called the hospital again and she was still doing fine. We finally got to the hospital at around 10am and they had us wait a little before letting us come back. I didn't know what that meant. when I walked in to Dakota's area, the alarms were going off on the ECMO machine, but to me at that point, they were just alarms and they meant my baby was in trouble. I remember watching as the nurse adjusted Dakota's position and commented to the ECMO technician that maybe she should just hold her like that all day. She wedged some blankets under Dakota to hold the position and then turned to explain to me that they were having a tough time getting the flow of the ECMO machine that Dr. Kays had ordered. That terrified me. I remember sitting there and waching the alarms go off with wide eyes and a fast beating heart. The nurse after readjusting Dakota again, turned to me and noticed my face. She said, look, look at your baby. She is pink, she is comfortable. Look at her sats on the monitor, she is still 100/100. Look at her last blood gas, it was good. This is our problem with the machine, Dakota is doing fine. Finally I understood. I kept asking questions though, would a slower flow increase the chance for blood clots? The answer was maybe but they were watching closely. Does Dr. Kays know what is going on? They told me they had left him a message. This is the first time I broke down. I remember going back to the pump room and just crying and rocking. I said, why, why does this have to be our journey? Please let her be okay, please let her be okay. The other surgeon came by and the nurses told her what was happening. She looked at Dakota's charts and then said, well, it looks like this baby is ready to come off ECMO. Are you sure?? I said, Dr. Kays said a minimum of 10 days. Yes, she said. She explained that they would have to have another surgery to reposition the cannulas in Dakota's neck if she was going to remain on ECMO, but while the flow had been lowered, she had shown that she didn't need the machine anymore and remained "stabile as a rock" so they were going to take her off. She told me that Dr. Kays was aware of what was happening and approved. So they lowered the flow way down to what could be sustained without having to constantly reposition Dakota and told me they would do trials off all night and then take her off the next day. I called in all night and she was still doing great. So now we're up to today, the 29th. My mom and sisters were still in Gainesville, my dad had gone back home to work. I remember sitting in the waiting room and waiting for them to take Dakota off ECMO. I remember going back to see her and thinking how big the area looked without that machine. I remember again being so proud of Dakota - I called her my little overacheiver. I remember some fear in realizing that they did not leave the cannulas in the neck just clamped off as another CDH baby's mama, Olivia's mom, told me they did with Olivia, in case she had to go back on ECMO. But they were confident that Dakota was doing well. I remember before each blood gas that day, my stomach was in knots and then big smiles would break out as we realized she was doing well. It was a good day. My sister later told me that she thought that Dakota would die until they took her off ECMO. It wasn't until that point that she allowed herself to believe she would live. I am glad I believed it the whole time! I love you baby, I am so glad that you are here with me and that these memories have a happy ending!!!!!!!!!