Delaney Update: 5/23

Friday to Monday seemed like a long hiatus from the updates. Sure didn't want to disappoint our readers but it was greatly needed to take a step back and just "be" for a while. We've had a lot of appointments, visitors, deliveries/gifts. We re-tooled the home situation and tried to find some more avenues to rejuvenate our own resolve.

Friday morning we got ourselves together for another trek out to Children's Hospital. We thought sure this would be a much quicker visit, however the pace of the hospital won out. It was another four hours of our life between travel time, tests, and consultation. We do love Dr. Sommerfield, she is patient, kind and thorough. The short version of the story is that Delaney's heart function is responding very well to the Dijoxin. We are still watching the VSD, as there is still a significant amount of shunting between the ventricles. This leads to a lot of potential complications in her lungs, although for now her respiration is doing very well. We got some advice regarding Delaney's inability to blink which is very helpful and one we will have to watch. Due to her inability to blink, we have to be sure that her eyes remain moist. If her eyes dry out, this can cause very painful abrasions which could lead to infection, etc. So much to take care of, so much to worry about.

Later that day we returned home and received a visit from an old friend, Julie. She provided us with a lot of frozen breast milk which will really help to ensure we have enough high quality food for Delaney. Lindsay's pumping schedule is difficult to maintain, physically and emotionally. She's been keeping up, and I am so proud of her for putting this effort forth. It's so difficult to know that this essential connection between her and Delaney has been interrupted, so coldly. However, Julie's kindness is so appreciated and we are so touched that she will be a part of feeding out sweet little angel.

One oddity that was totally unexpected was that as soon as Julie entered our home I heard a loud crash from the kitchen. As I walked in, our cabinetry had crashed down on the kitchen counter! It was there, teetering on the miscellaneous items that were spread out on the countertop. For the next half-hour we tediously, carefully took out all of the dishes and placed them on the kitchen table adjacent to the little disaster. To our amazement we only lost one bowl, and our dog Ella's treat jar & food dish. Not exactly what we needed with everything that we are dealing with, but what are you gonna do? Turns out the previous owners took their "cheap" cabinetry and had it refaced with solid wood. However they didn't think to reinforce the job by screwing it into the joists, they just "trusted" the old nails to hold everything. Didn't work. In the aftermath we decided to leave it down, and placed all of our dishes on a bakers rack that we purchased from Bed Bath & Beyond, it actually makes the kitchen much brighter and more open. So, as we've been trying to focus on the old "everything happens for a reason" mentality, we can just add one more thing to that tally sheet.

We were so incredibly tired out from Friday that most of Saturday was spent in a sleepy stupor. Apart from taking care of Delaney we just crashed. We had to motivate ourselves to get out of the house and enjoy the sunshine. We had my parents over a few times watch Delaney so we could head out for a bike ride. It's always nice to get out, but we never feel we can stay away too long no matter what level of care we may have in the home. We just feel so intensely responsible. It may sound silly in some ways. What parent doesn't feel intensely responsible for their child? We just have such a heightened state, it preoccupies us all the time. It does wear on us. It's difficult to disengage. I really didn't have the energy to even write this blog, which is so soothing and therapeutic.

Escaping for brief moments in time is so important, takes the edge off. Little things here and there can bring back that energy that we so need. It's been nice to have the television, which has provided it's own level of escape. We have watched several movies, some horrible, some delightful...yet nice to shift one's focus on anything else. We laughed and giggled as we "beat each other up" on the Wii. Lindsay is quite the master of Sword Play on Wii Resort. She really relishes knocking me off the platform into the water. It's activity like that, which brings out the best in our relationship.

When we first met and the weeks and months afterward, we knew how to play, love, and care for one another. Our relationship is something special, we love each other very deeply and easily. Even through this most distressing time in our lives we have no doubt that we will remain strong in our devotion to one another and even talk about having more children - Delaney needs to have brothers and sisters! As terrifying as this is we are good at this "parenting thing", and it would be a shame if we didn't have more children for it. We love each other so much, and we know that we will get through this no matter what.

One of the most beautiful gifts we have received during this dreadful time was from my cousin Colleen. Not only was the gift itself priceless, the words she expressed were so touching. I have thought a lot about whether or not I would be specific about what she shared with us, and I've decided that I will keep that between her, Lindsay, I and close family. However, she expressed such heartfelt words of encouragement, love and support and so beautifully worded that I'm not sure I could recapture it and give it justice here. One thing that I will share is that she indicated that we were never really close. Certainly not because I wanted it that way. It's something that I had always wanted to overcome. As a young adolescent and through my adulthood I never really knew how to deal with it. I've always admired my cousin, she is beautiful, smart, and independent. I am forever thankful for this gift that connects us to not only each other, but to my Grandma McDonald who would have a big hug and kiss for us both...and as I've mentioned before was the original spitfire of the family. She is looking down and smiling I know it, she having a few words with the man upstairs on our behalf!

Today we met with Dr. Doshi regarding her pulmonary function and we started to wean off of her oxygen. She had been on 1 liter and as is currently is on .75 liters. Her O2 saturation has been holding in the mid 90s and above. We are pleased and would love to see the day where she doesn't need oxygen assistance at all. However, it's a fine balance and because she has so many issues, it's a delicate balancing act. Too much oxygen causes issues, as well as too little. If we were able to have surgery on the heart it would alleviate the "shunting" which is affecting her lung function, but to put her under anesthesia would have her take another hit to her brain, which none of us can really take at this point.

We are doing everything we can for our little girl. We can't help but think about the injustice of it all. She was a totally healthy happy baby for three weeks and then disaster struck. We had her in what should have been one of the safest places in the world for an infant in crisis. She was stable at one point and just after they began prepping her for transfer to Children's is when she crashed. Why couldn't they have just transferred her while she was stable? Change that one thing and we wouldn't be where we are today. I know it was protocol and probably 99% of the time a baby is transferred without incident...I guess we were the 1%. It's really sad when you focus on that, and we try so hard not to play that game of "what if" but how can you not?!

I find that we have come around again to an issue that I have written about before, and one that we worry about the most - her brain. All of the problems that she has faced with every part of her body are fixable. What amazes me about our little Tenacious D is that she has been hit with a ton of bricks and with help will overcome every malady that has resulted. Our most fervent prayers are that she can overcome the biggest challenge of them all and heal that delicate brain. We are doing everything we can, we hope that the physical therapy, occupational therapy, Feldenkrais, and Ki will do what science tells us isn't possible. That she will be able to form those essential connections so that she may be able to suck, swallow, hear, see, grasp, crawl, and communicate. Please pray for for these and all other essential elements of our baby's development. We don't need her to be gifted, just whole.

All of our love,

B & L & d