Hoping & Dreaming

So, we had an amazing weekend!  We were already excited when we headed in for our Friday evening visit to see Addison; we were told to bring clothes so we could dress her for the first time! She had reached the magical weight of 3 pounds, which by NICU standards means you can officially wear big girl / big boy clothes and start to regulate your own temp. Clothes in hand, we made our way up the elevators to the NICU. As we approached Addie's new bed location (we had just been "promoted" off the most critical side of the NICU days earlier), her nurse said, "Now don't freak out", with a smile on her face. Thank goodness for the smile since those aren't words you look forward to when you baby has been critical for so long.. . so we looked at her, first noticing she was on her Florida Gator blanket (the blue and orange catch your attention) and then. ..she was breathing room air! No cannula! One day before she turns 34 weeks corrected age and 2 months old to the rest of the world, she is off oxygen support for the first time in her precious life! Not only is she off oxygen support, but she is smiling and her O2 sats are as high as ever. Go Baby Girl, Go! She was giddy happy about the removal of yet another tube on her face; maybe she was almost as giddy as her parents, but not quite. :) Her nurse said she had pulled out her feeding tube and was wearing her cannula around her neck, so she wanted to see how she would do without her oxygen. She took the picture above while all of the tubes were off Addie's face so we could see what she looked like as a "free" baby. The feeding tube obviously had to go back since we're still not on bottle feeds, but what a huge step this was! So, we skipped clothes so as not to overdo on her first night flying on her own, and we basked in the wonder of our baby breathing all by herself the rest of the night.

Saturday brought more excitement as her feedings were increased to 28 ml/hr, and she was to try bottle feeding for the first time! Saturday night rolled around, and Addie (still breathing on her own!) took her first bottle from her Daddy. It was one of the sweetest, most amazing things to see him gently working the bottle into her mouth, and slowly, cautiously see her start to work her mouth around the nipple. After a few haulting attempts, she latched on and downed half the bottle! This was awesome for her first time out on a bottle! She probably would have taken more, but we stopped her midway through to burp. By the time we brought the bottle back to her, she was exhausted and ready to sleep the night away. It's amazing how much energy it takes for her just to suck, swallow, and breath all at the same time. She worked SO HARD! She got to cuddle with Dad for a while after that, and it was just the sweetest time we've shared to date. We were all learning to do something new together.

Sunday brought clothes into Addison's life, and our wallets will never be the same. When I got to the NICU early Sunday morning, she was wearing a sweet little shirt that appropriately said "One of a Kind". It was a little big, but that was to be expected. Wearing clothes means that the heating element in her isolette is slowly being turned down so that she can get to where she can regulate her body temperature on her own and eventually be out in a crib. That is a process, but we're starting down that road! The nurses mentioned that she had an "episode" that morning and needed to be bagged. They were concerned that her reflux was getting worse. No worries, though, we were going to start treating the reflux with the addition of rice cereal to her feedings. The rest of the day went well with grandparents visiting, and another attempt at bottle feeding her that night. The rice cereal complicated that process by clogging up the nipple, but Addie tried her hardest and did a great job again, wearing herself out in the process. It was all in all, a tremendous weekend. So much progress for our girl!

.. .And then there was Monday. The wheels fell off. I drove in to the hospital thinking that maybe we'll be getting into a nice routine, I could start trying to get more done at the house (go to the grocery and do laundry. .maybe even clean the bathrooms/kitchen one day!), and Philip headed to Chattanooga feeling great about our current situation. So this is what it feels like when things start to get better. .."HOME" had started to enter our minds, even if it is still several weeks / months away. ..it now seems like a possibility. Then I walked into the hospital, and it all changed. Addison was blue. BLUE. And not breathing. At all. She was limp, blue, and not breathing. ..and apparently hadn't been for a lot longer than anyone would have liked. There were 3 people at her bedside, and 2 people working on her - her nurse and someone from resperatory. She finally coughed and started to come to. ..and then she was blue again. Another cough, and this time she started to turn pink again. Thank God! I've seen her bagged before when she was much smaller and on the ventilator. Sometimes the pressure from the hand bagging helps unclamp their lungs and helps them to start breathing again when nothing else will. It's amazing that with all the machines in the unit, this simple contraption still works best sometimes. So it turns out she had already had to be bagged earlier that morning. And then it happened again later that morning. She kept dropping her heart rate, and then her O2 sats would follow quickly behind. She would turn blue and just not breath. I spent the entire morning anxiously watching the monitors so that if she started to drop again, I could try to catch her before she got too low and stimulate her (pat her on the back, rub her back, rub her foot, flick her foot, her arm.. .anything to try to remind her body to work) until a nurse could come help me. It was agonizing to watch and be a part of. Every few minutes she would drop, stay low, have to be stimulated, have to be stimulated by a nurse, level out for a few minutes and then start all over again. Her poor little body! So, the decision was made to put her back on her nasal cannula, stop the rice cereal immediately, move her back to straight breastmilk (no formula added) and reduce the volume of food she was getting. They immediately ordered a chest Xray, a CBC, a blood gas and several other tests to determine if she had asperated something into her lungs or if she was getting sick or if she had a perforation in her intestines. My head was spinning. ..but it seemed to work. She leveled out, the tests came back ok, again, thank God. ..the mere mention of an infection and I tear up. We've been down that road, and it nearly cost us everything.

So that brings us to today. She's had a better day, all things considered. Her heart rate and oxygen have stayed in a much better place today, and she's been handling her feedings really well. She's just hungry now, which is a good sign; she's missing her extra calories and volume. She did get a transfusion today, so that should help her feel better as well. She does have another tap tomorrow, and we're praying that goes well. We did find out her eyes have held steady at Stage 1 ROP, so we are thankful for that and continue to pray that they do not progress any further when tested again next week.

So, what does this have to do with hoping and dreaming? Well, I've fought feeling defeated and upset about the set backs after such a great weekend. We were coming so far, and to see it all unravel and her feel so terribly bad is absolutely upsetting. I just hate that we pushed her too hard, and now she's having to step back so far. Our sweet nurses, practitioners, and other consultants have been so sweet to check on Addie (and me) today, and I tell them all the same thing. We're holding our own, and we will get to that wonderful place again. Soon. It was a taste of what is to come, and even if it only lasted a few days, it gives us hope of what is to come. A time when she has nothing more than the leads to her monitors on her, a time when she is in a crib at room temperature, a time when we're not afraid to pick her up and cuddle her as long as we want and feed her bottles and nurse her.. .a time to feel "normal". I'm so thankful for that glimpse. It has helped us to see that the dream can come true. We will get there; we've tasted it now. We know what we're working for, and we'll only work that much harder to get there. We've learned a valuable lesson - don't push too much, too hard, too fast. Only change one thing at a time with her, and if someone starts to change too much, speak up. ..yell ...do whatever it takes to keep her on her slow and steady pace. Our Addie truly is "One of a Kind" and needs to be treated as such. "HOME" is coming, just not right now. We'll get there, just you wait and see.

Love ~ Philip & Rachel