Just Breath

It's funny how we can hold our breath and not really realize it sometimes. Last Monday was Addie's shunt surgery, and it was definitely one of the longer days in our life. We got to the hospital a little after 5 a.m. so we could spend some time with Addie before shift change at 6. Her surgery start time was scheduled for 730, and technically parents can't be in the NICU from 6 - 8 so that the nurses can give report. We hoped to come in sometime after report was given, but we didn't want to risk not seeing her before surgery. It was a really special time, and one I won't ever forget. We started her day off with a diaper change and a quick sponge bath since she would have to go more than a week without another bath. She tolerated everything fairly well, but she was obviously uncomfortable with her head so full of fluid. Once she was clean and dry, we swaddled her up in a warm, cozy blanket rather than redressing her before surgery, and then took turns holding her and cuddling her. We told her how proud of her we were, how brave she was going to have to be, and Philip did the sweetest thing and talked her through everything that was about to happen so she wouldn't be scared. I had been praying so hard that I wouldn't break down on the day of her surgery because if I got started, I may not stop, and I wanted to be strong for Addie and Philip. Tears would just make it worse. Well, Philip's precious conversation with Addie, telling her about Dr. Harris who was going to fix her headache, almost did me in several times. He is such a good Daddy. The nurses working in our corner that night were so sweet and supportive - these girls always are - but it means even more on days like this.

We were blessed to be able to carry Addie up to the surgical floor, and once we got off the elevator, we handed her to her nurse and watched them walk away. I was so glad Addie's primary was working on the day of her surgery. She loves Addie, and if I had to see anyone carry Addie away from me and into surgery, she's the one I would want to do it. I just remember thinking that it was the first time I had held Addie outside of the NICU environment, and that's a big deal when the first 4 months of your baby's life has been spent in the NICU. I can't imagine how it will feel to carry her out of the hospital someday. I will always remember our first breath of non-NICU air together (Addie slept right through this part of her adventure), and I will always remember handing Addie to Kelly and watching them walk through the doors to the surgical suite. That is the moment the moment the surgical clock started ticking in my head.

I think I was numb, really. It was a very surreal 2.5 hours. Our family waited with us, and I thought we did a great job acting like we weren't watching the clock, wondering when we would receive an update. You would think time would crawl, but we did a pretty good job of distracting ourselves. It wasn't until Dr. Harris showed up that I realized I had been holding my breath for over 2 hours, at least that's how I felt when I after Dr. Harris said she had done great. Relief just washes over you, and you feel like you're breathing for the first time in ages. Once we met with him, we hurried back to the 5th floor, and Philip & I went straight in to see our girl.

She looked huge!! That's what I will always remember. After her last surgery, she was still just 2 pounds and the vent and equipment dwarfed her. This time she was laying all stretched out and looked so big unwrapped and undressed in her warmer. She honestly looked good compared to what I was expecting. The vent didn't look so big like it did for her first surgery, and her skin color and everything looked worlds better than it does after she has a tap. I have to say that Kelly brought her back to us looking incredibly good considering what she'd been through. She was already starting to wake up and had that blank, post-anesthesia look in her eye. She kept lifting her arms slowly, like she was taking stock of all of her body. Thankfully the pain meds and sedation helped her sleep through the rest of that day and all through the next day in relative comfort.

Addie stayed on the ventilator through Wednesday afternoon. We had to back her off of the stronger pain meds and onto just some baby Tylenol for pain eventually so she would be awake enough to breath for herself.

I know Philip & I fought the entire process leading up to her shunt placement. We were scared of the surgery and the long term impact it would have on her life. I have to say now, only a week removed from surgery, I am already so thankful for the blessing the shunt is to our sweet girl. She's already a different baby. She's more active, more truly alert more often, and much less fussy. She even seems to be drooling and spitting up less! It's amazing the difference relieving that pressure on a day in and day out basis can make. Her head is still fuller than they want it to be, but it is slowly normalizing. I know we may have problems with the shunt in the future, and we still aren't out of the woods yet as far as an infection, but I have to say that already the shunt is giving Addie a much better quality of life. I'm so thankful that God gave someone the skill and foresight to create the shunt, and even more thankful that He used Dr. Harris to safely help our sweet Addie. We asked Him to heal her, by whatever means necessary, and even though it wasn't the way we would have chosen, He did ultimately heal her. We are forever thankful.

Addie had another eye exam yesterday, and they remained stable at Stage 3 with a trace of Plus Diseas in each eye. We're praying for stable again next week.. and really praying for the day when they start to improve. Surely in the next month or so we will come out of the risk zone for retinal detachement, and she will start to show signs of improvement. We are all living for that day, but for now, we'll take a week at a time. We'll hold our breath every time they come in to dilate her eyes, and we'll start to breath again once we hear the results.

Everything else is going well. She is weighing in at 5 lbs 12 oz and 16+ inches long! She's still well below the growth chart, but she has come such a long way. At least her grown has an upward curve now! We are so incredibly proud of her! She seems to be drooling/spitting up a little less than she was, which is great news for her poor raw, right cheek that has started to break down from all of the acid in her spit up. We can't imagine what her esophagus looks like if this is how bad her cheek looks after just a few days of excessive spitting. She still has a dressing on the incisions on her head and her belly. Those should come off in a week or so, and the doctor said they continue to look good. She also had a repeat swallow study yesterday afternoon, and she has improved there, as well. She now only aspirates on thin liquids, not thick, which is great! That means that she can safely take thickened liquids by mouth again, at least as far as the risk of aspiration into her lungs is concerned. That is an entirely separate issue from her reflux, so we will have to see how she does if they try her out on food beyond her NJ feedings. I'm can't begin to tell you how much I HATE the idea of seeing her try to take foods into her stomach again and seeing her start to throw up all the time again. She is only just now comfortable for the first time in her short life, and I hate to see that go away. I know it will be necessary; you don't want to see her undergo another surgery to fix her reflux if it has improved. ..but I just don't feel like it will be that much improved. As much as I dread it, I will have to trust our doctors and nurse practitioners to use their best judgement in how to proceed from here.

She has recently discovered her hands! She loves to pull them up to her mouth and gum on them. She has also learned how to hold on to her paci, which is super cute! Unfortunately, she can't coordinate her movements, so she is often pulling her paci out of her mouth when she jerks her arm away, and she gets so upset when her paci suddenly "disappears". It's so amazing to watch her discover things and to simply enjoy the world around her.

She really is amazing. I can't tell you how amazing and special you all are to us.. we couldn't have made it through the last week without your love, support and prayers.