LOVE

Ainsley Beatrix Ward....I will always love saying it, thinking it or hearing that beautiful name spoken .  We now have pictures up around the house to continue to look at and be reminded of the love given to and received from Ainsley. Ainsley Beatrix Ward left us on the afternoon of August 28, 2012.  Things had moved fast the past couple of days concerning Ainsley's condition and her ability to hang in there, even with the great measures that were being taken to assist her in carrying on. However, she did not pass away breathing the same dry air of the hospital, having little to smell, and only the sounds of voices and alarms to make up her world. She was able to be in our arms, breathe fresh mountain air, have the sun kiss her face, and listen to the sounds of crickets chirping and leaves moving in a slight breeze. Ginnie and I have never known the love we have experienced with Ainsley, and possibly may not again. She will always remain perfect to us and we will dearly miss her beauty, strength, love, and just her presence.

I know I've said it before, but we are blessed to live close to Mission Hospital. The doctors and nurses of our hospital here in Asheville are some of the most superb human beings I have had the pleasure of meeting in my short life. Without them, we may have never even gotten the opportunity to know our daughter for the 25 days that we did, and they have been beautiful to us and Ainsley every step of the way.

Much love and thanks to everyone who has sent their prayers, positive thoughts and energy, and just supported us throughout the past month. We love you all!

Breathe

Whew, the past week or so has been quite the ride.  You know, I wish I could say there has been tons of forward progress, but I can say that the doctors seem to have a direction they're heading in with treating the infection Ainsley has.  Over the past week Ainsley has regressed somewhat in terms of breathing in that she has needed more oxygen (100% for multiple days in a row) and she was put back on the oscillating respirator. This ventilator is the one that shakes her, but I learned that it is actually more gentle on her lungs than the other respirator she was on, and stimulates more of her lungs. Ainsley being on so much oxygen for so long is a concern because of complications that can arise from that, such as hardening of her lungs and inflammation. Also, late last week, Ainsley was discovered to have contracted some type of staff infection. Since then she has been receiving anti-biotics and has been responding well to them by her breaths appearing easier to achieve, the infections seems to be going away and her oxygen needs have slightly decreased.

The plan of action now appears to be: fight off the infection, assist Ainsley with her lungs to breathe better and on her own, assist Ainsley with continuing to improve kidney and other organ function, and assess where Ainsley is at with how much damage she has sustained at birth and during this whole process.

Not going to lie, times are kind of rough right now. I still long to hear my daughter cry, to be able to look into her eyes, and to know with confidence that she will be able to have some of the basics in life, that each one of us take for granted, as they come automatically to us every minute of every day. Keep those prayers and positive thoughts coming, each one makes a difference and is appreciated. As for my wife, Ainsley and I; we just have to remember to breathe.

Hurry Up And Wait

Waiting is the word. Ainsley has been doing well the past couple of days. She has slowly been improving on her blood gas tests, she's making slow steps towards reducing her oxygen needs, and her movement has come back nicely. The physical therapist was even stimulating her enough yesterday to try and get her to open her eyes. She isn't quite there yet, but did give the PT some good reflexes and responses to firm touch. Yesterday was a good one for small steps of progress and because Ginnie was able to hold Ainsley for about 2 hours! I think this helps both Ginnie and Ainsley, and is some of the best healing one can get. So, we're all just hanging in there with tons of hope, watching in awe at Ainsley's improvements, and hoping she decides to show us something new each day! Thanks again for all the love an support being sent our way! We really appreciate it and keep it coming! Ainsley has a ways yet to go, but she is on her way there!

Ainsley's The Boss

Many times in life I have gotten caught up with wanting things to happen within my own time frame, and I can be quite impatient with some things. For instance, with getting my wife presents. Now, some of the gifts for her were actually given on that appropriate day of Christmas, birthday, or anniversary, but very often it was,"Sweetie, why don't you go ahead and open it!? You can open it now if you want, I think you'll really like it". I've been reminded of this in the past couple of days as I strive to remember to tell my anxious energy and mind to SHUT UP when in comes to what Ainsley is doing and when she's doing it. She is on her time frame and is quite frankly, the boss. She has told us all this in the past couple of days by expressing that she needed a break to recuperate after making non-stop positive steps since last Friday, giving us all a wiggle and move show, and then having an energy draining day of breathing on her own (while doing so through some secretions all day). After a day off the respirator, it was thought best to place her back on and to also assist her in recovering her baseline with some Nitric Oxide. I will say though that the respirator she is on now is not an oscillator, doesn't shake her body, and appears to be a more peaceful experience for her. During the past two days Ainsley has retreated within, and has not been showing us much movement at all. Until tonight! By this evening Ainsley was looking much better with her swelling having gone way down, her blood gas results (while still needing work) are looking more positive, and when I changed her diaper she was kicking some and wiggling in response to cold wipes.  She also moved all four limbs when being moved by the nurses to be weighed! Our night was also brightened by having a visit from a good friend who brought us the best fish and chips I've ever had along with some beautiful blankets for Ainsley, and another friend who brought a very gracious gift and card from co-workers and friends.

All that said, my wife and I have experienced one of the first large bumps on our journey with Ainsley. Although, I think that bump mostly shook us and that Ainsley is on her own schedule, where she has much more to show us when she's ready; 'cause she's the boss.

Highs and Lows

One of my coworkers, in my job at a day treatment program, has used an example from his own life to assist the kids we work with in processing their days in terms of what went well, and what could have gone better. He uses the example of sitting down at the dinner table every night, while his kids were growing up, and having everyone state their highs and lows for what happened throughout the day. This exercise is an appropriate way, I believe, to go through how today felt.

Early this morning, Ainsley's tube for her ventilator came out; either of her own doing or by the tape holding the tube in coming loose. She demonstrated the ability to breathe on her own fairly well, so that assistance from the respirator was discontinued. We were told she was breathing on her own, but was working hard on demonstrating that she has the ability to swallow, cough when needed, and that she has a gag reflex. We had previously been informed days ago that Ainsley had been observed demonstrating her gag reflex, but we had yet to see evidence of swallowing or coughing. In seeing her today it was easy to observe that Ainsley was having some troubles with disposing of secretions in her throat. It seemed that she was trying to cough, but couldn't quite get the force needed to clear her throat. Despite not having productive coughs, she didn't have liquid coming from her mouth and always seemed to do away with whatever secretions were giving her difficulty breathing. As this occurred throughout the day, we concluded that she was indeed swallowing because there was no other way that she could rid herself of these substances/secretions. Through her rattled breathing, the nurse, as well as Ginnie and I, could swear that we heard some coughs as well though. 

Ainsley continued to have steady breathing though and Ginnie and I both ended up having the opportunity to hold her today! It was AWESOME! It's hard to describe how wonderful holding her so close and being surrounded by her sweet presence was! It is hard to get pictures sometimes in the NICU, but here are a few that came out ok.

It was a great time to share with my wife and daughter. We also had a great visit with our friends Zach, Marissa and Asher White, who came by to share dinner and their experiences with us. It did both mine and my wife's souls and minds good to ask them questions and listen to what the had learned during their NICU experience and how they had navigated the roller coaster of emotions, as well as peaks and valleys of hope.

Towards the end of the night, along with the nurses, we observed Ainsley having  a much harder time catching her breath.  She was taking very quick short breaths.  Her blood gas was taken and found that her carbon was very high, further demonstrating that she wasn't getting productive breaths. She was just having a hard time, and it was decided that she should be given the assistance of the respirator again.  This is technically seen as a step back I guess, but after seeing how much more comfortable and relaxed she was, I knew it was the right thing. I know the saying goes, "Two steps forward and One step back," but I really feel that this was one step back after about 5 forward. Our girl has worked SO hard during the first week of her life, and I just know she has so much more to show us! Feeling kind of spent tonight so I'm going to leave it at that.  Keeping hope alive here, and thanks for all the love and support out there! It is felt and appreciated!

To Hold And To Be Held

The power of touch is an amazing thing. Ever since Ainsley was born (a whole seven days ago now) we have  wanted to touch and hold her much more than we have been allowed, due to her situation. We have been informed that we should just touch, and not stroke her skin, as not to overstimulate or stress her too much. All of this made the conclusion of today so exciting!

First off, this morning we arrived to see that Ainsley was having a good morning. She had received great levels/scores on her blood gas test, her Nitric Oxide level had been lowered, and she was remaining stable. We were then told that it continued to seem likely that she would be able to cease needing the support of Nitric Oxide all together, but we would see later today if that would be the case. All of this also added up to the possibility of us getting to hold Ainsley today or tonight.  One of the awesome nurses at Mission Hospital had helped Ainsley stay out of her movement mischief by swaddling her and letting her have some time resting on her belly. This was the first time we had seen Ainsley on her belly, but she seemed very comfortable and secure with the swaddle. I was a little disappointed that we couldn't see her moving about as much, but was really happy that she was tolerating the swaddling, as this should be naturally calming for her being so new to the world and used to the restriction of the womb. We had a good day with Ainsley, but the time came when I had to leave for work and Ainsley had not yet reached the point of being able to get rid of the Nitric Oxide. Ginnie and I were both a little disappointed, but realized that this would hopefully happen very soon regardless.  I told her I was still hoping that it would happen while she was there tonight, and she promised to send me a text and pictures if it did. All I could think about at work was if Ginnie was getting to hold Ainsley yet, and if she had been able to say goodbye to the Nitric Oxide. Part of me was actually dreaming that Ainsley would be unhooked from the respirator as well and Ginnie would just be able to hold her without restriction for as long as she desired. We got busy at work and I didn't notice my phone vibrating at all. During a short lull I checked my phone and saw that I had 4 text messages. I checked them and this is what I saw....

I was so excited!! I felt the urge to just run out and drive to the hospital, but knew that I would get to share this with her soon enough, plus I've never been fired from a job and didn't want to start now. So, Ainsley was taken off of the Nitric Oxide, seems to be faring well without it, and there is a chance that tomorrow she could even be taken off of the ventilator....maybe. : )
Ginnie was able to hold Ainsley for an hour and a half! She said it was wonderful and made today the best day ever! This may be common knowledge, but before I started learning about baby things and especially about the connections between mother and baby specifically; I didn't realize how newborns reacted around their mothers. Ginnie was able to experience her body heating up to keep Ainsley the appropriate temperature, and actually was able to observe (with proof of numerous monitoring devices) Ainsley's comfort when introduced to the skin of her mother. Ainsley's heart rate and blood pressure when down to calm levels and she just chilled with her Momma.  So, not a lot else to say about today, but I can say that I'm SO looking forward to tomorrow! Ainsley seems to keep making those baby steps of progress, impressing us daily, and I can't wait to see Ginnie hold her and hold her myself!  I will leave you with one last cute picture of Ainsley in a knit cap that one of the nurses put on her, and a beautiful baby blanket/burp cloth made for us by Marissa Kent-White (with Ainsley's full name embroidered-Thanks Marissa!), that she is laying on.

Causing Mischief and Puttin' Her Feet Up

Another fun filled day of watching Ainsley move even more than yesterday!  Today she would move often, and without the provocation of a touch or squeeze of the knee. Many times she was moving all of her limbs within the same little session. Although, while practicing her movements she did get into a little trouble with the nurses. : )  She really enjoyed lifting her right arm up to rest beside her head, and each time she did she would mess up the monitoring IV/wire for her blood pressure on that arm, causing beeps. This beeping would in turn provoke a nurse to run over to check her vitals, only to find that she had just bent up her wires. Every time a nurse placed her arm back by her side she just wanted to pick it up. : ) Eventually, the nurses just placed her arm under her breathing tubes, comfortably, and her fun was thwarted. She also enjoyed stretching her legs out some today, and getting quite comfortable by utilizing her breathing tubes as a nice footrest.

If you happen to see the bright yellow disc on her ear, that is to keep her from getting over stimulated. She was also rubbing her hand against these at times and pushing them off. : )  It was a great day of watching our little girl become more active. Some more exciting information from today is that her Nitric-Oxide has been lowered another point unexpectedly, will most likely be lowered another point tomorrow, and the Doctor on the floor today stated that he would like to see her receiving NO Nitric-Oxide by the end of the day tomorrow. Also, she may have the amount of ventilator use reduced.  With all of these positives, it was also great to have some of our bestest friends Jared, Katie, and Jonas Brush visit with us today. We actually have to thank Katie over and over again for being such a huge support and starting a meal train, which has been immensely appreciated and helpful! On top of all that, another good friend has gone into labor downstairs and could have her new baby boy by then end of the night! Well, kinda tired tonight, and I'm feeling like I just kinda threw all of this up really fast and I hope it made sense. 'Night everyone and hopefully I'll have even more progress to speak of tomorrow!