JenniferTenney

So this week was the anniversary of my first time holding Dakota (I am ashamed to say I don't know the date by heart). I remember the events of the day so clearly though. It all started the week before, when Dakota was extubated. After Dakota got off ECMO, she had a very dip free recovery. She was steady as a rock and almost always had Blood Oxygen levels of over 100 CO2 level of less than 40 and her sats were almost always above 98/98 ... so we were blessed. Even after her surgery, she stayed steady, however, like all these kiddos, when they have surgery, a void is formed in the chest (where all the organs used to be). Dr. Kays told us that it is expected for fluid to fill that void-but sometimes it can be too much fluid and that can put pressure on the lungs and heart again, so it is very common to need a chest tube. Well, Dakota almost needed a chest tube ... but Dr. Kays being the brilliant doctor of timing that he is said let's wait till tommorow morning, and by tommorrow morning, her x-ray started to improve on its own. So she escaped without a chest tube. However, I believe there was still a little too much fluid in Dakota's chest when we extubated her because Dr. Kays expected her to go straight to the nasal cannulas, but instead she needed the C-PAP. Ugh, the dreaded C-PAP. I remember being so disappointed that night, but telling myself that I should be happy that she is on to the next step .... even if that step wasn't what I expected it to be. Anyways, Dakota was miserable on C-PAP! She cried constantly, she thrashed about and she was always shaking her head trying to get it off. It has very hard nose prongs that irritated Dakota's nostrils and caused them to bleed and block (sometimes affecting her sats) and it has hard tubes on the side of the face that make it hard for a baby to get comfortable. Well, to make things worse, Dakota got a staff infection, which we caught very early, in her picc line. I believe the infection caused her one morning to start dropping her sats (only into the 70s I believe, but that was lower than Dakota ever went since her 2nd day of life, before ECMO). They had to raise her oxygen on the C-PAP up to 100% and raise her peeps all the way. I remember walking in that morning and seeing the machine and my heart dropped. It was that day that we got her on the antibiotics for the staph infection. Throughout the day, Dakota was doing fine so they turned the oxygen back down to 50%, but it looked like getting the C-PAP off was still a long way off. That was the worse day I had in the hospital because I remember Dakota's neighbor (a non-CDH baby) was crashing all day. I don't know what was wrong with that baby (I wish I knew, but we had just moved to that spot and I never got to know the parents), but I just know that the alarms kept going off and they had to bag her like 5 times throughout the day in front of me. I was watching that baby's sats all day, as they hovered in the 60s, sometimes going down to the 50s and 40s. The parents were crying ... it was horrible!!!!!!! It should have made my worries about Dakota's staph infection and small sat dropping seem inconsequential, but it didn't, it made me worry more. They called in a different nurse for Dakota for the afternoon (so our nurse could focus on the crashing baby)-Sally, a mother hen type older lady that I loved. She gave me a hug and gave Dakota a A+ for her behavior for the afternoon (she was back to satting good as her oxygen was being turned back down). Well, when I came in the next morning after that horrible day ... the baby next door was gone ... and Dakota' machine again showed that her oxygen was at 100% and peeps were all the way up. I just started crying. Dakota was also crying and just thrashing around. The nurse was trying to get her to calm down and she turned to me and said, "Do you want to hold her?" I said "Really? I thought she would have to be more stabile for that?" She said, "Yes, I think she wants to be held and comforted." I said "YES!!!! Of course!!!!" The nurse swaddled Dakota up with all her wires and C-PAP, taped the wires and tubes to the rocking chair and then placed her in my arms. I can't describe how good that felt. I finally felt like I had a baby. She was mine. She was real. I could comfort her. I never wanted to get up. I stared at her face as she fell asleep and relaxed. Throughout that morning, Dakota's oxygen was turned back down to 50% and it never got turned up from that point forward. I sat in that chair until long after my butt and my arm fell asleep. A few days later ... finally!!! ... Dakota was put on nasal cannulas and she was an angel baby after that! So it was actually during Dakota' roughest point when I got the most special gift of finally getting to hold my baby! I can't even imagine how much more special it felt after waiting 3 weeks than if I had just unknowingly got to hold her seconds after birth (although I am sure that would have felt special too), but it was such a sense of accomplishment mixed with love. We had fought so hard for this day. We had made it to this point. We were going home.