JenniferTenney

So yesterday, February 14th, was not exactly an anniversary, but I remember the day very well. First of all, it was Dakota's original due date. Parents in NICU of premies are often told that the goal is for the baby to be released by their original due date. Of course, with CDH, all bets are off, but back around January 31st it looked doable. After all the drama of ECMO, the surgery, getting extubated, getting through an infection and C-PAP, Dakota was on nasal cannulas by the last week of January and had started feeding. She was progressing really well respiratory wise, and her oxygen was down to 100ccs, the lowest setting, and we were told the setting she would probably go home with. So in a way, she was out of the woods. Most of the adrenaline of the last month left our bodies, we were so thankful and happy and we were ready to take our baby home. Not so fast! She has to learn to eat. But that can't be so hard right? Hah! Well, it started pretty well. Dakota was weak at eating (We had to give her jaw support and rub her cheeks to get her to suck, but she did not totally refuse the bottle.) She was slowly making progress. And on January 30th, Dakota had her GI test. January 31st was a good day. The night before I was told Dakota had some reflux on the study and so I had been up all night researching the nissen procedure which I thought Dr. Kays would reccommend. I was dreading another surgery for my baby and I did not like the idea of the procedure one bit. I understood it and the need for it for some babies, but I didn't like it and I did not want it. I came armed with questions. Dr. Kays met with us that morning and said after looking at the study, even though Dakota had reflux, he would like to try treating it with just medicine and not give her the nissen procedure. Yay!!! My whole body felt the relief!!! He pointed out that she was progressing on eating, even if slowly and inconsistently and also there was the fact that she was right-sided, which meant her stomach was never out of place, making her reflux potentially less severe. Also on the night of the 30th, the night nurse had switched to a NUK nipple and for the first time Dakota had taken a full feed by mouth. It was a good day! We asked Dr. Kays if we could be out of there by February 14th and he said it was dependent on Dakota, but very possible. It didn't happen. In the next, very frustrating two weeks, Dakota progressed at a snail's pace. She just did not want to take a full feed. We would get slowly closer and we would have good days where my husband and I would get her to almost take all her full feeds, then we would call in that night and the night nurse would have only given Dakota 1/2 of her feed by mouth. The doctors said she had to take all of her feeds by mouth consistently to go home. In the meantime, Dakota was gaining weight, so the amount of ccs per feed was going up. We felt like we were trying to reach an ever moving target. On February 14th we felt like we would never get home. I remember going into the pumping room that day and crying my eyes out (harder than I ever cried while Dakota was on ECMO). I just wanted to take my baby home. My maternity leave was rapidly disappearing. I had to be back to work by March 15th and I had so wanted a whole month with Dakota at home (I was so looking forward to my maternity leave and I never really got to experience it like I wanted.). I could not see the light at the end of the tunnel. The walk to the hospital every morning seemed endless. I was sick of living in a motor home. I was 5 hours from home. I wanted to take my baby home. I knew I should feel lucky that Dakota wasn't in danger, respiratory wise at that point. I told myself that I was lucky that she was progressing, even slowly. I knew I didn't want her to get a g-tube just to get out of there ... I would never subject her to a surgery just because I was impatient. So there was nothing I could do but wait and try to enjoy my baby, even though she was in the hospital. I told myself to look at the nurses as nannies and wasn't I lucky to have such good nannies. On February 15th, a great and caring neonatologist came and found us. She said "I have been following you guys and you guys are at a plateau. I know you want to go home, but at this pace I don't see that happening in the near future. So we have to change something." She suggested doing a trial. Taking the NG tube out of Dakota's nose (which makes it much more enjoyable for a baby to eat), having me spend 48 hours rooming in at the hospital and doing every feeding and see if Dakota gained weight. If nothing else, we could see how near or far we are to our goal. We scheduled the trial for the next week. It was a very stressful 48 hours. Dakota did not eat her full feeds ... but she ate enough to gain weight and with much lobbying and talking, finally, on February 25th we were discharged. That is an anniversary I am looking forward to celebrating!!!!!!!!