Delaney Update: 5/19

Today, we woke up fairly well rested. We had a smooth and easy start to the day. A pleasant visit from the Sue, our home care nurse, as well as another positive visit from the Chris our Occupational Therapist. We found a lot of reasons to smile today, and even laughed and played together.

I got about seven hours of sleep for the first time in over a month. Lindsay would have slept the same if not for having to use the breast pump for Delaney. I woke up feeling refreshed, yet I felt a little sense of panic (as usual) thinking that Delaney might need something. I checked on her, her sats were normal, but I could here a little congestion so I suctioned her airways out and she immediately sounded better. The poor thing hates it when we use that machine, but she almost "knows" that it will help there's thus look on her face as if to say, "I know you have to". Right after I laid back down and drifted off for another half hour, my body was like "oh yeah, sleep is good...we should do more of this!".

We had a simple breakfast and before long the OT was here ready to work with Delaney. She was impressed with her movements and liked her responsiveness. She focused a little more on her neck and shoulders and showed us how we can encourage her to begin lifting her head. There are several positions we need to use and give her more opportunity to try. She also cautioned that we have to pay attention to signs for when she's tired or "had enough". We probably know what to look for, but it was a good reminder.

Not too long after we received a visit from Sue the RN. We just love her, she asks all the right questions and gives us great insights every time she's here. Today she weighed her, listened to her breathing, her heart, and took blood to be tested. Her lungs sounded good but she is suggested that we use Postural Drainage and Percussion (PD&P) to help release any mucous build up. It's a small tool that is soft foam and has a cup-like interior that sends sound-waves into her lungs that gently work to move the secretions out. It's interesting that we witnessed them do this in the hospital and thought it was the tapping or patting that was effective, but it's a actually the cupping and percussive action that helps the most. So another piece to our daily regimen of care, but we are more than happy to do it.

She also took a blood sample to check for anemia since both she and Dr. O'Shea noticed that she appeared to be a bit pale. They also want to see what her electrolytes are like since this is the 2nd week on diuretics. We can easily add more iron to her diet if need be, not sure how she will get electrolytes, perhaps Pedialite...we just don't want to dilute her feeding too much with other liquids since she needs to gain weight so badly. Needless to say all of this is another blessing that we have the care that we do.

Overall, everyone who sees Delaney comments on how good she looks. We see signs of her filling out a bit more each week especially in her legs and arms, and those cute cheeks! This week she gained one ounce, so we got the green light to increase her caloric intake. It makes me so comforted to know she's gaining.

Following the visits I was really motivated to use our Costco rebate check to buy Wii! So while Lindsay stayed with Delaney I went out on a short mission. Much to my surprise Costco was totally out. I would not fail, this day! They exchanged my rebate for cash and I headed over to Best Buy, in and out.

Back home, after quickly setting things up, Lindsay and I played and laughed. We felt like kids again, for sure. I even felt like I got a bit of a workout in and believe me I could use the exercise. It's been a few weeks of stress and comfort food. As we seem to be continually adjusting to our new routine and finding respite through friends and family it gets easier and easier to find openings for leisure and fun (and hopefully exercise!). So crucial, yet not as easy to achieve as one might think.

Friday we head back to CH for a Cardiology appointment with Dr. Sommerfield. Somehow time slipped away from me and I forgot to get the x-rays sent from Beaumont to her office. I will have to be sure to make that happen tomorrow. In this visit we hope to have positive news on the state of her Coarc, we now know that the best thing for Delaney is to push off the open heart surgery as long as possible. We would more likely re-catheterize the Aorta before entering into major surgery. Due to the brain injury it is too risky to put her under anesthesia for long periods of time. Open heart bypass surgery could take as long as 16 hours. It's just too much for her, and would have her fall several steps behind where she's already wound up. Catheterization takes about an hour to an hour and a half, and recovery is much much quicker.

In other news, we are receiving a donation of frozen breast milk tomorrow and that will give us a lot more flexibility in being able to accommodate Delaney's growing demands. We are so touched to have this kind of support, since we know that breast milk is truly the best food she can get.

We know that this leg of our journey has been difficult. There are days where we are simply stunned and in disbelief as to how we even got here. We want to get off the ride, wake up from the nightmare...but that's not going to happen. What we can do is enjoy each day with the time we have with our little angel, our Tenacious D, and know that we are doing everything we can to make each day livable and find opportunities for laughter, joy, and quality-time together. Delaney is such a blessing in so many ways. She's a reminder that we all have the power to fight, to overcome, and to inspire others. She's still here, and we will lift her up at every opportunity.

We are still getting generous donations from all over the country and world. Some anonymous, others from close friends and family. We don't know quite how to thank everyone enough. Just know that we appreciate it and thank you for being a part of Delaney's recovery. Your donations, prayers, time, and words of support bring us all together. We welcome you as a part of our extended family. I think we might be on our way to some kind of world record for "neighborhood moms" (as I like to call it). There is amazing power in community, if nothing else we need to embrace that.

Anyway, it's late and I'm rambling...but happy.

Love,
B & L & d