My Dearest Daughter

I had this notion that would keep up with daily updates, both for myself and for all of our supporters. As you know, it's been a few days since my last update and it was really better that I waited. I needed some time away to meditate, retreat, and regroup. However, if I had to sum up the last few days in one word, discord.

If you read through the majority of my writing you will generally see optimism, motivation, and high spirits. At my core, this is unchanged and not something that I find difficult to access - I never really have. What I would say about myself of late is that I find it somewhat difficult to reconcile patience with results. I am an incredibly patient person up until I reach a point where I think that reasonable actions should be rewarded in a timely and reasonable fashion. Each day the "five-year-old" in me says that Delaney is going to wake up tomorrow crying or engaging us in some normal way. So far, over the last month that we've been home I'm sad to say that has not happened. I don't even know if this is truly a reasonable expectation, the five-year-old doesn't care.

I guess what really triggered all of this is that we have been doing everything possible to my knowledge that is safe, healthy, and hopeful for Delaney and I would like to see greater strides. No one has a timeline that we can check. The only chart that has any relevance are the growth charts with our weekly checkups - she's way behind. To hear that she is in the 3rd percentile in weight for infants her age is somewhat disheartening. However her head is doing much better growing within the 75th-80th percentile and she's grown a little over an inch since she's been home. I just wish that there was a chart that would compare her to other infants who have suffered similar traumas so we had more relevance. It makes us feel somewhat adrift. Our expectations as parents for what we should be seeing in our little girl at this stage of her life is very skewed. We've had to throw out everything that we thought we knew about "what to expect". It doesn't change the love we have for her, or the efforts we will put into her development.

We have to have different expectations or it would multiply our disappointment. It does make us sad when we settle down and take the time realize the loss therein. We feel we are really good parents and we would love to be joining in on all the same milestones that our friends are celebrating. We do look forward to adding to the family one day and hope that we will be back on track in our own experience as parents. We hope that God will grace us with another opportunity to bring life into the world and hope that he sees fit to bring us a life that will be healthy. I think we've had enough parental "excitement" for a lifetime!

We have seen some good signs, but I don't want to gloss over the truth of the matter that she is really struggling. It's so painful to see that she can't just go through her day without something medical or clinical that needs to be done to keep her comfortable, breathing, seizure-free, and growing. Over the past five nights we have seen her get very agitated with a heart rate above 180 - one night reached 200 BPM. That was downright scary. My patience had truly reached it's limit in that I just couldn't figure out what we needed to do to help her. I was so mad, I was throwing things around the house! Finally, after we administered all the medication we could and didn't see a noticeable improvement we called our home care nurse and after talking things through we waited it out another ten minutes. The meds finally kicked in, her heart rate went back to normal, and she fell asleep. I think the defining characteristic of our frustration is that in so many ways, appearance being the main factor, she looks like a normal baby. Unfortunately, she has a symphony of complicated issues going on under the surface. If only her inner functions were inline with her outward appearance, what a beautiful masterpiece that would be!

Like I said, my optimism, motivation, and spirit are still strong. We are moving forward and tomorrow we will see a neurologist at the Michigan Institute for Neurological Disorders (MIND) clinic in Farmington. One thing that we never received was a very thorough explanation of the findings in the EEGs or MRI from Children's and we hope that bringing those reports with us we will be able to get a thorough explanation, and perhaps some notion of what to do next. There may be specific areas that we need to be focusing on in physical therapy that would help us to gain ground faster. If the doctors at this clinic can help us to keep moving forward, I think I will regain some momentum. I would really like another EEG to be done. She has improved in appearance and behavior since returning from the hospital, so there would have to be some improvement in the EEG. You can't have one without the other in my non-medical opinion. I don't know if the doctor will be administering that tomorrow, but we would like that done eventually. There is some debate as to whether this should be done sooner or later, but a month's time is an eternity for an infant. I would be very surprised if we didn't see some favorable gains.

I will be taking Delaney in for more Ki treatment at some point this week. We took her four times last week and she definitely responded to it. I've even learned a bit more about administering it myself. Last Thursday, Sensei was kind enough to give me a short lesson/demonstration. He can do amazing things with his energy. If you are attuned to Ki energy, you can't resist it. He actually demonstrated in front of me and our friend Nicki the power of Ki. His partner Patrick who is also a practitioner stood up and Sensei was able to control muscles from a few feet away. There he was standing and Sensei had his arms flexing no matter how hard he resisted. After a few amazing examples of this, he turned to me and said "same-a-same, but a gentle, gentle" as he gestured to Delaney who was quietly lying on the nearby mat. I spent a few minutes at that point administering some Ki treatments to Delaney myself. I could see that something was happening. If your Ki is flowing you will look down at your hands and your skin will be somewhat mottled, my brother Sean describes it as a pattern that resembles raw ground beef. He's right! I did try it at home and I'm not sure exactly what the difference is but all the energy I felt at the Dojo, was not the same as what I felt at home. Then again, I'm not a 60-something Japanese man who has been practicing his whole life and learned Aikido from it's founder. So, I give me a little slack. If you are interested in this practice, here is the link to Sensei's dojo. What I didn't realize is that Sensei was a part of a study of Ki and it's effect on water. Sensei was involved with Dr. Masaru Emoto, who's work was made relatively famous in the movie, "What The Bleep Do We Know?". You can read about that here as well.

What I have to say as I write finish this latest post, is that my dearest Daughter is waving her hands and looking around (sometimes at me). Making some gurgling noises along with the occasional high-pitched sigh. A gentle reminder that it's all worth it.

God Bless,

B & L & d

Reclaiming Home, and Fostering a Healing Energy

Settling in to a better routine at home including several days of reclaiming our bed. Delaney is getting accustomed to her real crib. We had the last visit from the Occupational Therapist, two major Ki (pronounced "Key") sessions from Sensei, second Feldenkrais appointment, we made an appointment with the MIND clinic in Farmington, and a lot of positive behavioral signs from 'little d'.

Having returned to our own bed has been wonderful in a lot of ways. For the last few weeks our home has felt as though it was reduced to an apartment of sorts. We spent most of our time in the living room and kitchen. Our couch had become a bed, and we became all too comfortable with an air mattress (while quite excellent, is not meant to be a long term sleeping arrangement). Getting back our bed has also meant that we have reclaimed our house, everything feels more spacious again. I am really happy to see Delaney using her crib and making use of the room that we put so much work into. I wasn't sure that was ever going to happen and it feels very rewarding. I feel more motivated to complete the mural that I was previously so excited about. She deserves to have all of the cute amenities we had planned.

Yesterday we received the last of four visits from our OT. She has been very kind and gentle with Delaney, I think it's cute that she made a point to use her name - most usually refer to her has 'baby', 'honey', 'sweetie', which are all endearing but it's good to hear her name which we are so proud of. She was impressed with how alert she and how much spontaneous movement there was during the session. I expressed some concern about Delaney's toes and feet that appear to be getting 'tight' and curling slightly. She recommended that we massage her feet and apply gentle stretching. I certainly don't mind pampering her in this way she deserves to be spoiled a bit. She also said that she would be looking into whether it would be advisable to have braces made to prevent her feet from tightening up, we may or may not pursue this (more later).

One of the most impressive experiences through all of this would be taking a trip to the Aikido dojo in Sterling Heights. I have mentioned Ki before and have been lucky to have my brother Sean available to administer some healing energy to Delaney and even saw some impact. I wasn't quite prepared for how amazing it was to see Sensei in action and receive the treatment from a very powerful practitioner. We arrived at the dojo and were greeted by some students, Patrick, and eventually Sensei himself. I had to fill out a form agreeing to treatment and signing off that any techniques learned would only be utilized as indicated. On the form I shared that we wanted our daughter to be seen and for what reasons. We placed this on the desk and awaited our turn.

Eventually we were called over to the mat and Sensei began preparations for treatment. You could hear his rhythmic breathing and muttering to himself in Japanese. Intermixed we saw him touch his own head with a pensive look on his face as he stated "this-a paht, uh ok" then moving his hand slightly to a different part of his head "this-a paht, uh not ok'. He was mimicking on his own head where he sensed that Delaney was having problems. He then focused his attention, gesturing to his own chest. Again indicating a concern about her health and in particular her heart. The key here is that no one told him that she was having heart issues. The sheet that we filled out was never shown to him. He just knew.

From there he called over my mother, who trained with Sensei some years ago. He asked her to place left hand on a particular part of Delaney's head and then asked her to take her right hand touching her thumb to her ring finger holding them strongly together. Sensei then attempted to separate her fingers. In areas that showed weakness, Sensei could easily pull my mom's fingers apart. Conversely areas that were strong in Delaney he could not separate her fingers. Take it for what it's worth, but something was happening. He then focused on the treatments, he had mapped out where to focus his energy, his healing Ki. This went on for a good forty minutes and Delaney was relaxed and comfortable the whole time. She was breathing very easily and open. Her hands which at times are clenched were open and soft. She seemed to be soaking the energy in, much the way she was when Sean administers Ki. Sensei spent some time with her and alternated with his fellow practitioner Patrick. It has been noted that when Patrick and Sensei travel to Japan, that many people line up to see him - they feel his power in a different way than Sensei. After the treatment was completed, we asked him how often he should see Delaney. He very quickly said "ebery day you can do". And after what we experienced later that night, I will do my best to get her there as often as possible.

Later that day when we were home, I could see that Delaney was much more energized than she has been. Her eyes were very active as we have seen before, but this time the seemed much more purposeful. She definitely appeared to select what she was looking at, even if for just brief periods of time - more than I had seen previously. We were very encouraged by this but much later into the evening she seemed a bit agitated. Her heart rate increased and we could see that she was a bit irritable. In some ways, I like seeing the emotion. Her getting a little angry is a good thing, it's that fight that only our Tenacious D can muster. However this seemed to tip the scales a bit more than we would like so we administered some meds to calm her down. Within in a few minutes her heart rate calmed and she was fast asleep.

Today, we were visited by the Feldenkrais practitioner for the second time. Lisa has been wonderful with Delaney and we were excited to see what this next session would have in store. What I really like about Lisa is that she has a very positive spirit, you can tell that she is passionate about what she does. She is purposeful in her attention to detail and the behavior she is trying to stimulate in her. Each action is in tune with what Delaney is giving her. She takes the direction that she's going and alters it slightly. Encouraging the connection to larger movements, and the combination of limbs, muscle groups, and reflexes that will hopefully help her to regain strength and control. The practice is centered around retraining the brain to make the connections of movement necessary to get her back on track. Today we focused on tummy time, "discovering" facial features, and getting comfortable with rolling over. Lisa didn't disappoint and the more that I watch her in action the more I feel I can get Delaney in a routine of practicing these exercises.

From there we had a wonderful visit from our friend Nicki. She came along with baked goods to snack on and her spunky attitude for some light conversation and laughs. She also decided to come along and witness the Ki treatment for herself. Today, when we went we got a special treat of a brief Ki demonstration. She was even able to participate, despite not "knowing" exactly what she was looking it I'm sure it was neat to see Sensei in action as a "first timer". He is a very impressive man, entertaining at the very least. He is an excellent teacher and following the treatment with Delaney he was able to teach me some of the technique and how I should be using it while away from the dojo. I won't get into the details, but it was fascinating and I could definitely feel the energy in my hands and gut. I was sitting quietly and still, sweating like you wouldn't believe - very much an indicator of feeling and sharing the energy. I'm not sure my energy will feel quite as strong at home, but it certainly can't hurt. She always loves when I stroke her back and hold her in my arms, so a little more attention along with my own Ki can't be a bad thing.

When I held Delaney this evening I was just giddy. Her eyes were moving a lot and she even cracked a little of the "Elvis" smile that I like to call it. Sort of this half smirk for brief moments. It reminds me of when we first had her home and she would smile in my arms. I so long for that to return, and perhaps we are seeing some glimmer of her old self returning! As I stared at her beautiful baby blues, I decided to play with her gaze a bit to see what might happen if I covered up her field of vision. In the past it didn't matter what you did, she appeared to stare off in the same direction. What was different tonight is that when I covered up part of her field of vision, she slowly ever-so-slightly moved her eyes to "see around". As if to say "hey, your blocking my view!". She didn't do it every time, but I definitely saw something I hadn't seen before in the weeks we've been home from Children's.

I know that our prayers are being answered. Particularly those requesting that we continue to 'surround ourselves with wonderful people, so that wonderful things happen'. Sensei and Patrick are wonderful people. Had I not been centered in myself and my faith, and my belief that I will do everything in my power to help Delaney in every way, we would not have gone for the Ki treatment. If I had allowed doubt to enter into the equation, we would have stayed home. On the wall of the dojo there is a simple poster - "Ki is love". I believe that.

So the next time you send your positive energy to our family, perhaps you will be sending some Ki of your own.

God Bless,

B & L & d

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

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

Delaney Update: 5/18

I am writing to you today in a much more rested state than yesterday. There were little to no issues that woke us up, aside from the usual tossing and turning. To our amazement we found ourselves asking each other, Did you suction her? No, did you? We may have actually gotten six hours of sleep! It's funny what you take for granted in life, and what has to happen for you to see it.

Yesterday was a busy morning. I had to leave right away for my own doctor's appointment, both a well check-up as well as a follow up for my ankle which has been aching for over a month, almost no healing. So, it's gotten to the point where I really need to figure out what's happening and get this fixed. I have to take care of myself so I can take care of others. My doctor is recommending physical therapy, and possibly an MRI on the ankle to ensure there isn't any significant tearing. I'm fine with getting it looked at and the physical therapy, but it's a matter of when. I will make it happen, but time is not so flexible these days.

When I returned from my doctor's appointment, our Nurse Sue had come and gone. One thing I didn't mention yesterday is that all of the spitting up we had experienced over the last few days was due to her feeding tube which had become dislodged slightly. Sue repositioned the tube and she has been feeding well without incident ever since. It was relieving because we want her to continue to gain weight easily without a lot of extra intervention.

Our Feldenkrais practitioner was also still here finishing up. I updated you a little bit about that, but we were both astonished to see how Delaney behaved later that evening. I really should have had it on video, and wish I had thought about it. She was highly active for at least three hours last night. So, imagine the video that I posted a few days ago over a much longer period of time and a lot more movement. Her head turned from side to side, and her eyes swept back and forth. She focused on the toys we have hanging from her crib which have high contrast black and white designs on them. We got such a kick out of that. Again, we so easily take for granted the little things. We get so excited about the littlest of behaviors, but when you have taken such a blow as we have...it's rather humbling.

Today we were visited by Dr. O'Shea, and it was so helpful for us to get some guidance on somewhat of a timeline and what direction we should take with her care. She gave us a lot of reassurance that we are doing all of the right things. She gave us some sense of really what should happen next, and then gave us a lot of confidence about what we should feel optimistic about. It's so helpful to have a medical professional be able to arm us with not only solid medical advice, but also great parenting advice on how to support each other. Dr. O'Shea gave Delaney her immunizations which make us feel so much more comfortable. She certainly doesn't need to complicate matters by getting an infection. We want to protect her as much as possible. She really likes that we are using PT/OT resources, and stressed that Delaney will need a lot of help to learn/re-learn what other babies are more naturally going to acquire. It was also helpful to get somewhat of an education on the kind of brain injury that Delaney has sustained. I was struggling to understand the difference between her brain injury and traumatic, which is a critical difference as we look toward other therapies. She has more to overcome potentially, but her brain is still developing. There is much we don't know, so we do everything in our power to stimulate new connections.

While we may have ruled out HBOT (for now) we have a lot we can still do to pursue brain healing and development, particularly because we are seeing so much spontaneous movement. There is just too much risk involved with an infant. Especially since she has a compromised heart. She has already sustained a hugely traumatic event and there is a risk for blood clot, embolism, and a critical increase in blood pressure to the lungs. It's not something that we are willing to risk at this stage. She is currently very delayed, to what degree she can "catch up" is yet to be determined. We want to do everything possible to help, but we aren't going to be cavalier about trying experimental treatments. The possibilities using safe methods are wide open!

We are so blessed to have the family and friends that we do. After the last post we received many messages offering support to give us respite. I actually have to sit down and organize who to call first and maybe start some sort of a rotation. I feel like a baseball manager...batter up! Who's on deck? Stay tuned, you will be contacted.

Looking forward to more nights like last night, in fact this will be the first night that we will be able to sleep in our own bed in many many weeks. Beaumont Home Medical came to give us a quieter O2 concentrator with much longer tubing that will allow us to move the operation upstairs. Again, one of those little things that can so easily be taken for granted. It should be a good rest of the day, and a wonderful night. Now if we can get this weather to break?!

God Bless,

B & L & d

Two Steps Forward, One Step Back

As I reported last week we finally started seeing Delaney gain weight, and made some interesting behavioral improvements. Both we found to be encouraging. Like with any good news you begin to expect more of the same each day. It's unfortunately not so easy to just expect steady gains every day. Some things we just have to be patient with, easier said than done perhaps.

I got some things mixed up in the calendar and mistakenly said that we were supposed to see our Pulmonary specialist Dr. Doshi yesterday. Well, that's not in the calendar until next Monday. So Yesterday I decided to make use of my time and head over to Children's Hospital to pick up Delaney's records, including her MRI and EEG results so we can have something to compare our new results for when we meet with U of M Neurology. I have to say that I did pretty well with time, I was actually able to get out of there within two hours, must be some sort of record. Since I was there anyway, I checked in with our Cardiologist Dr. Sommerfield (I had been misspelling her name up to this point.). I had hoped to be able to get in to see her this week, which would be the two weeks that she had asked for. Accommodating as ever she was able to pencil us in for this Friday at 9:00am. She's such a good person, not only for working with us but she also takes the time to ask how we are doing and really genuinely cares. We feel very fortunate to have her. So one mental note that I will throw out there, is that she would like to see Delaney's x-rays from our most recent trip to Beaumont. I will get on the phone and order those up today.

One setback today which was upsetting is that we can't move forward with the Hyperbaric Oxygen Therapy until her heart surgery has been completed. They are concerned that she would be at an increased risk for an embolism. So we really need the defects in her heart to be fully repaired before we enter in to this kind of therapy. I just hate waiting on that, because I feel that every day is critical. Certainly, we are not remaining stagnant we have many other avenues we are pursuing, it's just that we are most excited about this therapy with everything we have seen and read. In the meantime we will keep the PT/OT working and we even added one more feature to that today.

We were visited by Lisa, our Feldenkrais practitioner. I wasn't able to be here for the full session, since I was at a doctor's appointment of my own. However what I did see was very interesting. My gut tells me that it's better than traditional PT. She is truly looking at how the Brain links behavior and movement of limbs to the entire body. She uses these subtle movements to trigger learning in the brain. She will be looking at fine and gross motor development. She saw some encouraging signs, many that we have been seeing which is validating. She was able to get Delaney to "push off" with her feet, gently but it was definitely there. She also noticed that she was spending more time with her head turned to her left than she had when she first started. Something that we have been dealing with since being home is that Delaney has a tendency to turn her head to the right. We are really hoping for much more balance. This therapy as I have shared before has had great success with children. I will never forget the video of a young college girl who as a child was given a very grim prognosis. We don't know if Delaney will be graced with as much benefit, but I am so hopeful.

This is turning out to be a very difficult week for our family. Lindsay and I are extremely tired, and we really need some breaks. We love our house but we need to get out more. This horrible weather isn't helping. So we will be acting on that to get out of the house for a few hours. Maybe with a little help from our friends we can make that a bit easier.

Prayers for rest, patience, hope, healing, and inspiration would be greatly appreciated!

Love,

B & L & d

Delaney Update: 5/15

Such a dreary weather day today. Mostly we just hunkered down and tried to stay warm. Of course spending time working on some of the PT/OT exercises with Delaney, while balancing that with allowing her to sleep. As I sit down to write this update I realize that sometimes an generally uneventful day is a wonderful thing.

For nearly a month now we have been dealing with the biggest crisis of our lives. The most wonderful gift bestowed on to us needs our constant support for the fight of her life. There is an undeniable high level of stress that we have grown accustomed to that for a period of time we thought we would never find relief from. Yet as weeks go by we do get breaks from the emotional strain. Today felt fairly easy.

I can't say that I'm entirely used to this, I really don't want to be THAT comfortable with it. It is my feeling that this is a temporary situation. We keep looking ahead to future gains. However, it is important that we remain calm and self-assured as we deal with the health care regimen, and patient so that our little angel feels confidence and is at peace. Delaney is so attuned to us. More and more I'm able to recognize her emotional states. Along those lines I find it more important to maintain composure to ensure that she experiences calm, loving time with us.

Some of the way that she used to communicate, through crying, appears to be returning ever so slightly. Late last night as we were helping her clear her airways she was upset. Until now, there has been one or two faint cries and red watery eyes. This time she seemed to cry out several times consecutively. Still weak and faint but she's trying, and it was oddly comforting. Another development in this "uneventful" day, was that late tonight she started to reach her hand up as if to touch the toys that hang from her crib. This was something new altogether, she hadn't tried that even before all if her trauma.

So apart from happily assisting Delaney with her development we were able to find diversion. I caught up on some tv shows on Netflix, Lindsay went to a baby shower. Tonight we watched Toy Story 3 for the first time. It was a lazy Sunday, and all of the "sun" was shining inside the house this time.

God Bless
B & L &d

Delaney Update: 5/14

We continue to adjust to this "new normal" in our lives and while I would say we have been incredibly optimistic it really isn't an easy thing to maintain 100% of the time. All of the advice in the world tells us to live in the moment. Just think about "what is" and not too much about what was, what should be, or what will be.

In our lives, there isn't anyone who can tell us what to expect in Delaney's development...not with any real precision. No one has a crystal ball. We will put ourselves in contact with those who will have the best chance of effectively evaluating Delaney's progress in many key areas. We hope and pray that those experts will be able to give us the best of outlooks. It's just difficult when we realize how long of a road lies ahead of us, with so much uncertainty. However, the only option in my mind is to remain positive. There is too much that we don't know to choose to do nothing else but keep on moving forward. Or just keep on swimming...

I know that many people faced with what we are dealing with would feel they have all kinds of excuses to curl up in a ball and give up, give in. It's just not how we operate. So we move forward. I do get overwhelmed if I think too much about everything that needs to happen medically. There are so many appointments and specialists, a lot of milestones ahead that we need to get on the calendar. So much to manage, so it's important to focus on 'the next thing'.

Monday, we meet back with Dr. Doshi. We are excited to hear what he has to say about the x-rays and hopefully what needs to happen to get us closer to weaning Delaney off of the O2. She's been doing reasonably well with her breathing this week, with some occasional "fits" which required the all too familiar suctioning. We are hoping to also get a handle on this mucous that she seems to have an endless supply. It would help all of us to sleep through the night without worrying about her airways. I will say that she has improved in that we have been able to go as long as four hours at a stretch without suctioning. This took a bit of a backslide over the last two days, where we had to be very careful. In one instance I was really in a panic with how red she got in the face and how much it reminds me of the night she was in crisis and I was so helpless. I am at least thankful that I have the means to give her relief from her breathing troubles.

This coming week we also have to get back to see the Cardiologist to keep tabs on the Coarc and other defects that we hope are reasonably in check. We know that she has to keep gaining weight in order to be in better position for surgery, and while I know that she ultimately needs it, it scares us to death that she has to go through something so extreme. We want what's best for her and she has so much healing to do already that it's hard to believe that she has more in store. Yet we trust Dr. Sommerfield and know that she has the same hope as we do for her full recovery.

In other news, we have set an appointment for a Feldenkrais therapist to evaluate Delaney on Tuesday. We are really excited to see what she has to say about a treatment plan. Everything that we have read and learned about it makes us feel that she should really respond well. To think that through these treatments we may be able to repair those neural connections in her brain means so much. Not to mention Reiki and Ki treatments, which have been nothing short of amazing. We are so hopeful that we can overcome this grimmest of prognoses thus far. We feel thrilled about the progress she's made with simply the love, attention, and prayers we've been able to give her at home and through our family and friends.

Thank you for keeping up with the course of events, and sorry for the short time-out the other day when Blogger was offline. I will try to keep up with updates, I don't want you guys worrying! :-)

Love,

B & L & d

Pictures worth 1k words...how about a video!

It's been an amazing couple of days in the Flatter household. We have had several visits from Nurses, OT/PT Clinicians, and even more of an awakening from our 'little d'. I will give you the short version so you may just enjoy this short video.

Delaney continues to amaze and surprise us, from the beginning of the week until now she has gained weight, increased eye movement and overall responsiveness. Everyone who has seen her this week has noted how much better she looks. This is important for us to hear since we see her every moment of every day it can be difficult to gauge changes. We of course notice a lot of positive gains, but we just love hearing it from other people too!

We are continuing to grow our support. We are going to receive one of the greatest gifts of all. An old friend of mine, Julie has agreed to provide breast milk that she has stored and won't be using any more for her own children. We had a lovely conversation, and aside from the obvious help it was so nice to connect after all these years. I thought it was so neat that she will be helping feed Delaney! We both observed how Facebook has allowed us to get a "second chance" on relationships that we had or didn't have in our school days.

So next week, we have more appointments with PT/OT, Nurse, and will likely be seeing our Cardiologist again. We have to closely monitor the Coarc and be prepared that further surgery could be right around the corner. We will meet with Dr. Doshi next Monday, it will be good to start getting a better picture about what his plan is for her lungs.

I'm not sure if everyone will be able to see the video, if you can't let me know and I will find another way to post it. This is a Facebook video so if your office, or institution blocks Facebook, then you may have to wait until you are at home to view.

Enjoy!

Please pray for her heart condition to hold out long enough for her to gain enough weight to be strong enough for the surgery and recovery.

God Bless,

B & L & d

Delaney Update 5/11

I had quite the sleepless night, both from feeling wired and overly vigilant, for whatever reason I just couldn't "trust" the machines. It's really difficult for me to hear Delaney feel any stress or pain whatsoever. I guess it's just my natural reaction to her having been through such overwhelming trauma I just don't want her to suffer even the slightest discomfort. However, between the Home Care Nurse yesterday and several developments today I have to become more comfortable with her having a little struggle...that perturbation and challenge will stimulate her to grow and learn. Probably a good lesson for is all.

One of the observations that Sue made yesterday is that as long as her O2 is in the normal range we shouldn't be suctioning so frequently. Doing so doesn't allow for her to make an attempt to clear things on her own. She may eventually relearn her cough and clear her throat again. If we take over for her all the time she might never re-learn. That's really tough for me. That image of her struggling to breathe that fateful night is etched into my mind and as a result I have the hardest time resisting helping her any sign of trouble.

Today we met with Syjid, our physical therapist, a very kind and gentle man. Well spoken, with a slight Indian accent. He spent about two hours with us teaching the exercises we need to help Delaney regain and maintain her muscle tone responsiveness, flexibility, and most importantly her suck and swallow response.

After a few minutes of evaluating her, it was fun to see him smile and chuckle at Delaney's efforts. She was pushing back and showing off her strength, he even stated how he reviewed her chart before he arrived and had a much different impression of what he was going to see. He was impressed with how alert and reactive she is. He was encouraged by that and encouraging to us that she will improve and quite possibly regain these essential skills.

Probably the most interesting part of his visit was that he explained that his own son was in a very similar situation which lead to a astonishingly similar prognosis, that his son overcame and surprised everyone. His son was also healthy at birth and a few weeks after being home had developed pneumonia, they brought him to the hospital and had many interventions that were similar to ours. He too required CPR and was deprived of oxygen and also required ventilation. The doctors told Syjid and his wife that his brain was compromised and would likely have a lot of severe problems. He is now a healthy, albeit hyperactive, young boy. To which I exclaimed if Delaney is to get through this, I can take hyperactivity!

Later that day we had a busy afternoon getting blood work and x-rays at Beaumont. What started out as a simple walk-in procedure became a four hour draining outing. I hate how everything takes so long in outpatient care. Granted I'm thankful that he were even able to accomplish this on a walk-in basis but Delaney is so fragile you could clearly see the effects of being carted around on her. I just wish things could move as quickly as they do for in patient care. When we were at Children's Hospital, they would order up and x-ray or procedure and it was there within minutes.

On a walk-in basis there's so many steps. Checking in, wait, go to the next station, repeat the same information, wait some more. I just wish they had an online registration that would give you a number or code that you could bring with you and cut all this mess and red tape. It's a bit antiquated and really in this 21st century I can't understand why we can't streamline this process especially in a hospital. It's not the same thing exactly, but making an appointment at the Genius Bar at an apple store was simple and automated. We should do this for medical walk-in appointments.

The good news is that the x-rays showed her lungs were in relatively good shape. One of the x-rays was able to be read right there and it was nice to have it interpreted immediately. The radiologist took several pictures with a machine that had digital imaging. It was neat to be able to see this in action and actually see her airways in the screen. We learned That the concern we had before about the narrowing of her left bronchus is no longer present. Also, there doesn't appear to be any scarring or damage toner lungs from the vent. He also didn't see any indication of a "Strider" (a notable sound that is present in airway constriction). We have to wait on the rest of the film and for Dr. Doshi but this was at least a good sign.

Late last night we discovered something which was nothing short of amazing. I noticed that her eyes were rather "goopy" so we put some drops in each eye. We couldn't believe what happened. She ever so slightly moved her eyelids in response to the droplet of artificial tears! It was the closest we have come to seeing her blink all the time she's been recovering. After seeing that, I know we are going to see more development. With my background in behavioral Psychology, I know that both striated and smooth muscles can be trained and controlled. Particularly in this case we know those connections to her brain are active, because she reacted to the stimulus. Simple put: stimulus -> response -> reward...we can help her relearn and retrain these functions!

There is so much we are having to take on in this fight. We want nothing more than for the nightmare to be over. We hold on to every positive sign we can and hope that each day brings us closer to normalcy. There is a mountain of work ahead of us. We need energy, patience, optimism, kindness, respite, laughter, diversion, peace, hugs, quiet, courtesy, an most of all understanding.

The support we are receiving in so many ways is humbling. We have been so touched by the generosity of you all. In that spirit I'd like to thank the Seaholm Water Polo team for their fundraising efforts, they took it upon themselves to raise $250 dollars for Delaney. We are so touched by this. No matter what may be going on at Seaholm with recent attention about troubling graffiti, I know that the vast majority of our students are good and kind young adults. We have so many reasons to be proud of them, I truly hope that efforts such as this outshine the negative attention that vandalism has brought to our community.

There are so many good people in this world, and we are speechless as we consider how many people have been inspired by our situation. Inspired not only to help in every way, but to hold their own children in a different light.

Give your kids an extra hug and kiss today, they are a gift.

Love,
B & L & d

Chewing Bubble Gum...and being all out of bubble gum...

The title is an obscure reference which I will leave for the savvy movie buff. However, I will share the punchline in an equally obscure way. Essentially, after being a kind, easy-going, firm when necessary type of guy; there's a point in time when it's important to just demand what it is that you need from people. In a war, recognize that it requires soldiers to dig down, and get the job done.

I woke up fairly refreshed today after a decent sleep, 6 hours has got to be a record of late. Went downstairs to check on my babes who were cuddling sweetly on the couch. After preparing the meds, changing the diapers, we awaited the visit from Sue from Beaumont Home Care. We are always happy to see her she is very professional, organized, thorough, caring, and communicative. She asks all the right questions and gives us a lot of confidence that we need after what has become, on reflection, a pretty horrible experience with our previous care team.

The more we reflect on the previous "care", the more we recognize how many mistakes were made. There are a lot of variables so I don't fault them 100%, but there are some pretty basic things in my view that needed to happen, that didn't. We were initially under the impression that it was to be more "Palliative Care" which would entail a lot more focus on the well-being of Delaney.

There are some key components to basic care that I would have liked to see. The previous nurse never weighed Delaney. This really bothers me since one of my biggest concerns was that we didn't want her to suffer or starve. How could one know if she was losing weight if you never weighed her? The nurse never noticed a key factor that her heart was "Moderately Depressed". Our current nurse noticed such a big difference in the strength of her heartbeat, upon use of the current prescription of Digoxin, that she exclaimed that it was like a different heart! I don't expect a nurse to be a Cardiologist but if a heart sounded weak that should be noted.

Under the Home Care, Sue takes copious notes. Obviously, the focus has shifted greatly towards development and thriving. She works closely with our Pediatrician, she actively makes referrals and recommendations to supporting her health and growth. All the while she looks after us to ensure that we are taking care of ourselves. We certainly have a lot of people on our side which have routinely reminded us to take time out for ourselves. Reminders from all sides are greatly appreciated.

People make mistakes, people miss cues, we are human. I get that. What I don't get is that with everything we have been through with Delaney that someone could allow her to starve. There was no way that we could have possibly known that the feeding schedule we were given would have been so far below what she needed. We were following instructions and when we expressed concern about her difficulties keeping the food down, we just didn't receive a thorough enough response. So the sleeping giant awakens.

You may be asking yourself, I still don't get the reference for the title of this post. Well, the key is "I'm all out of bubblegum". You'd have to be willing to watch the old sci-fi thriller from the 80's to fully appreciate it, but the point is I'm not playing games with my daughter's health.

I mentioned that we were referred to Dr. Doshi. When Sue came this morning she was beginning to ask where we were on the various appointments we had to being Delaney to. When we told her that we got in to see Dr. Doshi yesterday, her jaw dropped. "Wow, way to go Dad!"

You see, we don't know how long the catheterization will hold. That Coarctation is a bit like a ticking time-bomb, it's been stretched but it will eventually revert. We just don't know when. So we have no choice but to move quickly. If I try to set up an appointment and hear the line, "The soonest we have is 2-3 weeks...", that is totally unacceptable. I explain her situation and won't take no for answer. We don't have that luxury.

There is so much urgency, yet we have to be measured and in control. This is a marathon and not a sprint, however like any good distance runner knows there's always a good place for a fartlek. It's Swedish for speed play, and a work out regimen where you intentionally run faster than pace for intermittent periods of time. So when the time comes in a distance race for you to accelerate, your body will respond. So we keep pace in this race, but always know when to juice it up a notch to stay ahead. We are able to do so because we now have the tools and personnel to be aware of her vitals, and effective to adequately respond.

It's beginning to feel like we are getting our feet under us in this "new normal". We can do so because our faith is strong, our friends and family are powerful advocates and we have an enormous growing army that is steadily rallying around us.

We received a couple of packages yesterday, from Arizona. One was from an old friend Erin, filled with all sorts of goodies. The other was from a group of friends who made us a very special gift from their hearts and hands. Heidi, Laura, Chele, and Alyssa apparently are learning how to quilt. They decided to make them for babies and when they were searching for a special baby to receive the first quilt, they read this blog and elected to send it to Delaney! It's a superb quilt, one that we know she will enjoy for years to come.

Delaney got another special visit from Uncle Sean and the added bonus of a Ki treatment. Within minutes of the treatment she was wide awake and kicking and practicing those jabs. As I looked on with a smile in my heart she moved her eyes, this time much quicker than she had before. It was a joyful moment. Moments like these reinforce to us that our efforts to give her the best chance possible to thrive are paying off. I later joked that we have help from just about every religion, practice, faith, from science & medicine to the metaphysical. It funny 'cuz its true!

We ask that you share in our intentions that we continue to have the energy to move forward with fervor, to bring the right people into our lives, and that God sees fit to hold our family in His hands keep us on a path to healing and full recovery.

This journey just couldn't be possible without you, and we are so glad you are a part of the healing. Whether your support comes on the form of prayers, thoughts, time, or items of need. We thank you from the bottom of our hearts.

Love,
B & L & d

Delaney Update: 5/9

Delaney Update: 5/9

An uneventful morning was an easy start to the day. A few phone calls, one to refill a prescription, nurse Burke checked in, and one to set up an appointment with Dr. Doshi for Delaney's pulmonary workup. We returned from our appointment to find that a certain Border Collie had been engaged in a little mischief. We capped things off with a lovely odor with good friends.

As we got up today, we really seem to feel a sense of normal. Just getting up and making breakfast, checking on the needs of Delaney and each other. It was Mommy duty night last night and even though that was the case I couldn't ignore the alarm of the Pulse-Ox sensor going off. It was acting a little erratic and probably do to the sensor dislodging slightly off of her foot. We could tell that she needed suction with the "Junky" sounds that came from her lungs. I helped out with the technology and some auctioning and wandered back in the sack. We find that it's much better if one of us gets a full night sleep, although we long for the days when we could both share that joy.

I fell asleep pretty easily and woke to the sound of our Home Care Nurse. She was just calling to check on Delaney (we just love that she does that). I gave her a generally good report and she was genuinely excited to hear about her increased voluntary movement and responsiveness. We will see her for the second time tomorrow, where she will check on little d's vitals, weight, and feeding regimen. We are hoping we can increase the feed sober can move her more towards regaining that weight she has lost.

We did call Dr. O'Shea's office to refill the Phenobarbital which initially was not a problem and then the pharmacy called to say they didn't have enough...then retracted the statement while we were on the phone. I was relieved, I didn't want to go through another goose chase for meds. We need this medication for seizures that were discovered at Children's, we are hoping that they have since subsided and we can wean her off of that.

The referral process was started for U of M Neurology department. We are nervous but anxious to see the results from that. I think There has to be an increase in activity, since we are obviously seeing such an increase in her behaviors.

We met with Dr. Doshi which was a very positive experience. Je was friendly, gentle, kind, and well-spoken. We just don't need any more other details getting lost in translation. We received orders for blood work and a chest x-ray. We really like his approach, mAking this next phase of treatment much more appropriate and tolerable.

Falling asleep...

Love,
B

Delaney Update: 5/8

Mother's Day tears, respite, recovery, and feeling like a human being again.

When we woke up today things started out a bit like the movie Ground Hog's Day. We've been attacking the daily grind of this war much the same way every day. We didn't realize that we could decide to make changes for our betterment but for whatever reason we just haven't. Typically we just allow adrenaline to carry us. We know that this isn't right or healthy, we just didn't know how to break the routine. We know that we've been tackling the tasks at hand with Delaney's best interest at heart and in that we have been unwavering. Whatever semblance of a routine we thought we had just could never have worked for very long, and today I think we hit that wall - hard.

We both just broke down and cried at the absolute unfairness of the whole thing. Delaney didn't do anything to deserve this. I think we know that it's as they say "life happens". True, but this isn't a life, and jot the life we envisioned. We got angry, we yelled, we sobbed, and we held each other tight. Sure we know we have to live in the moment some days it's harder than others.

We spent a lot of time today sorting out our feelings about what has happened, where we are at, and where we are headed. It was very emotional and since I'm a counselor I'm certainly not uncomfortable with emotion, but when you really let go and let yourself "feel" it's a little scary but always feels better afterwards, and today was no exception. What I find astonishing is that as strong as we are in this relationship, I didn't think it would be possible to love each other more. I think that we've determined that this love "...goes to eleven" - a la the movie "This is Spinal Tap".

Finding peace within the nightmare. Our first reminder came today when Sean and Jill visited for a time. Sean was all charged up with Ki energy, his well-timed sense of humor, and a little dose of his confidence channeled through his alter-ego "Spike" (which we all can use a dose of from time to time) was just plain wonderful. I love my brother very much and he was in his element today. I smile right now just thinking about it.

Our second reminder arrived when Cece came to visit with a meal and a few grocery items. Her visit was brief but set in motion some things that were rather unexpected. She told me very simply that we needed to get out of the house, more than once. It was a gentle nudge that was needed and appreciated. Even as I listened to her advice a part of me was thinking "How are we going to do this?" Sometimes the solution presents itself, and you have to know when to accept it into your life.

My parents came to visit, they called to announce they were in the driveway and that we should meet them outside. We suspected something, a gift perhaps? (Well, duh...winning!) We approached my Dad's Jeep and as he opened the back hatch, we see a box...it's a brand new HDTV! It felt like Christmas...but the bonus gift seemed to have the greatest impact.

After we prepped Delaney with her next feeding and cleared her airway, my parents stayed and watched over her for about 45 minutes.

With that, Lindsay & I took our first bike ride of the season. We finally felt like human beings again. The fresh air and sunshine were amazing. We made it through all of the angst of the morning we reached the afternoon feeling more like a normal family again.

I would be remiss if I didn't leave you with some Delaney observations. More and more as she grows, I'm starting to truly notice more of the traits that Lindsay and I gave to her. Not only physically, but in personality.

When I look at her eyes and forehead I see myself. Her cheeks, chin, and nose are all Lindsay. Her ears are mine for sure. Long limbs, she got from the two of us. There's something so special about seeing our traits on Delaney. She is our legacy. We hope that all of our best traits we've given her will serve her well.

She has our sensitivity, our affection, and our passion. I know that's what keeps her going. She has tenacity, and anger even. It's what gives her that fight.

She showed us something this evening that I'm not sure we've noticed before. It was her eyes, they were turning red and at first we thought they were just irritated in some way that you would if you had an allergic reaction. Her eyes were watery too. What I finally put together was that she was crying.

It crushed me to have taken so long to recognize it but at the same time I was reassured more than ever that she really is in there. How scary that must be for her to be trying to reach out, to tell is she's upset or lonely. Or that maybe she just needs to be held. Well, I couldn't resist picking her up at that point. I said all the things any parent would say to soothe a child. I don't know of she understands the words but I know she understands the tone. Within a minute or two, of me holding her those eyes went back to normal, she calmed down and slept a while. It was so sweet. So sweet.

I'm so glad that we have been able to make good decisions for Delaney. We are going to make it right for her, we're giving her all the time she needs. With a little help from our friends and family, we are going to keep ourselves sane so we can continue to make those good decisions for her.

Tomorrow we learn more about what our next steps our. We should have the referral for the Pulmonary specialist, and perhaps some more information about HBOT Treatments.

We really felt like a family today, and after we got through that initial worry and pain we simply enjoyed each other's company. We ended Mother's Day the way it ought to be.

Love,
B & L & d

P.S. I did get Lindsay a beautiful (smokin' hot) dress for Mother's Day - it was no day

Delaney Update: 5/7

After a long night, complete with a little scare, we were able to spend the day resting and recovering from the emotions and fatigue of our long day of change yesterday. Poor little Delaney was just exhausted from all of the tests, travel, and all too familiar experience of the hospital. Again, home proves to be the best medicine.

Around 2:00am this morning Delaney's O2 level began to dip. Her breathing was a lot more labored than it had been in two weeks. We followed all the protocols, clearing her airways, keeping her on her side for fluid drainage. I made a slight adjustment to how her head was aligned and her O2 levels started coming back up. We turned up the oxygen just a tick to help her recover. Even still it had appeared that she was working harder for each breath. It concerned us enough that we contacted the on-call nurse to ensure that we were doing everything right. She assured us that we had, and made it clear that if we had any other trouble to feel free contact her. We stayed up and watched her a while and her vitals remained solid, and we all reached a bit easier.

Later in the morning we spent a lot of time with wet diapers, runny nose, and just a ton of fluids in her airway. It felt like we were suctioning her every ten minutes. I didn't think a baby could produce that much mucous! Between getting her feeds set up and meds, we received a phone call from our Home Care Nurse checking on Delaney. She is a very good listener and really was great to talk to. We really feel taken care of, and that the focus is Delaney first which gives us a lot of peace of mind. We discussed some next steps for Delaney's care and have a Pulmonary specialist through Beaumont, Royal Oak. We are relieved to have a specialist so close. We really don't want to have to travel to CH more often than we need to. Aside from the medical mumbo jumbo, we had a great day with 'little d'. The nurse recommended that we have a lot of "skin to skin" time with her. This really stimulates a lot of brain connections and we want to "wake up" as many of those connections as we can. So Lindsay and I took turns cuddling.

After a period of cuddling we both alternated playing with her, talking, and stimulating her in many different ways. Ever since George played "physical therapist" with her a couple of weeks ago we've been trying to keep it up. She has steadily and noticeably increased her voluntary movement. She has also begin to "anticipate" my next move - she's learning. There were time today that she actually started moving her arms and legs in much the same manner that I was pulling and tugging her gently in different directions. Something is happening.

Her eyes are still moving more, although not sure what she's focusing on, with the exception of faces (that seems to be there at least part of the time). I also could see that her pupils are much more responsive than they were in the hospital and even more so since last week. I can't wait till we see her track an object, I know that's coming. Probably the most exciting awareness I noticed was when I had her in my lap on the couch. I could tell that her nose was getting clogged up so I turned on the suction machine and reached over for the utensil. Much to my surprise before I even reached her nose, she turned bright red and brought her arms up to her face. While I hate to see my baby girl upset, this is the most noticeably we've seen her respond to audio. That suction machine is loud, obnoxious, and really irritating to me...and I'm not the one getting it shoved up my nose and down my throat, I would hope it would bother her. She sure let me know about it. I'll admit I caved and just wiped here nose with a cloth, I thought that might be more of a reinforcement.

We have a lot of irons in the fire and it's so important that we find the time to play with her and enjoy her, we are a family and she is still a joy! I joke about people being "Baby Drunk" around her, well I'm a baby addict! I freely admit it, she melts my heart and I would do anything for her. I have much more to say, but will perhaps include it on our next installment.

Love to you all,
B & L & d

Delaney Update: 5/6

One of out biggest fears was that as we shifted home that Delaney would be getting the proper care. From the very beginning when we weren't even sure she would make it, we didn't want her suffering, starving, or in pain of any kind. We trusted our instincts and today got her on the right track .

It was a busy day. Not a lot of time for rest, and we had a lot of energy spent on listening and learning - preparing for this next phase. We were all drained physically and emotionally. New services, nurses, and equipment.

We were pleased to meet the home care nurse and complete our intake. She was very sharp, high energy, and no nonsense. Her focus was baby first and parents second, which is really what we want. In that vein she got through gathering information about our history and then everything else was all about our little rock star. She was weighed and measured, vitals checked, and nutrition needs were assessed.

At her weigh-in we were heartbroken to learn that Delaney has lost a pound since being home, not at all what we expected, although we thought she might be losing a little since building up her stomachs tolerance for food, since the NEC. We just felt awful that we've failed to get her feeding right to this point in time. We are now on our first day of Human Milk Fortification, which should help increase her calories. We will be getting biweekly weigh-ins and the nurse will help us to monitor her nutrition, hydration, etc. It's good to know that we will have the support we need with our goal for recovery, we want nothing more but for our sweet baby to thrive.

After our intake with Home Care, we had to quickly get ourselves together and head down to Children's Hospital for our cardiology appointment. We met with Dr. Summerfield who was anxious to see us and we caught her up on all the developments with Delaney. She was amazed and thrilled.

As for the medical side of the visit, we learned that the Coarc has not retracted much, if at all. We were glad because this means that we still have time to address all of her other issues and not have to worry about open heart surgery, just yet. They assessed her blood pressures on all four limbs which is important to be able to note any difference in upper and lower extremities. In her case, today we are within a healthy limit. She explained that while the catheterization was sufficient, open heart surgery would improve this much more but there isn't any rush on that.

She added that some more work should be done to fully assess her pulmonary function, the whirlwind of getting Delaney home we never got a good picture of what was happening with her lungs. You see, the Ventricular Septal Defect (VSD, "Heart Murmor") has an impact on her lungs that forces more blood in that direction. As a result, there is higher stress on that organ and within a lot of fluid accumulation. Apart from the VSD, there was a notable issue in her left bronchus where there is a slight narrowing. We are hoping that a pulmonary specialist may be able to find out what's going on and find a solution. So, now we need a pulmonary specialist. (If we get her lungs in good shape perhaps we will have less issues with secretions and worry less about clearing her airways and in turn get more sleep. The thought of that is heaven.)

This trip to CH is what drained us the most today. We anticipated an hour or two and it ended up up lasting three hours. It was stressful on us, so poor Delaney really had a hard time towards the end. She's still so fragile and we could tell that her breathing was much more labored as we got ready to go home. It's taken a few hours being home to see her calm down and breathe easier, I think she knew where she was...we weren't happy either so I'm sure she picked up on that too.

We know we are doing the right thing and putting our baby girl in the best position possible for this second chance at life. It's hard for us, because it isn't one or two "things"...it's four BIG things. We are driven to our wits end from time to time. We are so tired, and hate that we have to be in this position. However, our resolve is strong. Our minds are clear, and our faith is keeping us going.

Prayers for rest and strength. would be best served today.

Love to you all!

B & L & d

Cinco De-laney!

Today started out sort of rough. We were really tired from the night's caretaking. We also experienced some blues, to say the least, as we reflected on what our sweet baby was like before all of this started. Despite that beginning, the day ended with feeling very productive.

As we woke up today, as if we actually get solid stretches of sleep, we were just exhausted. We do try to alternate mommy/daddy duties but last night we just needed to tag team. Delaney had been spitting up slot recently and my anxiety was really high as I checked on 'little d' often. We instituted the continuous feed (to make digestion easier on her), which in theory could give us three hour stretches of sleep. I just couldn't trust it, especially since we've grown accustomed to being hyper vigilant every half hour to an hour.

Being so exhausted led to a discussion about being overwhelmed by our circumstances and exasperated that we just broke down. We spent some important time together mourning our losses. Lindsay is frustrated, angry, and dissapointed. We had just started to get the hang of parenting and found a rhythym for how to deal with all of the nuances of child rearing and everything crashes down around us. I am sad that we were just starting to get all this communication from her, albeit nonverbal, but it was so rich. She would sit in my arms and bring out this smile that would just melt you.

Because we believe that we can get her back to where she was, we took steps today to put her in the best position possible. We are giving her every chance she can get. Our wonderful doctors at Birmingham Pediatrics got the ball rolling today with Beaumont Home Care Services. We set an intake appointment for tomorrow, and we should get a very good idea of what to expect from there. Molly O'Shea and Stacey Wittenberg there are perhaps the best doctors I've met, they care about their patients and their families like no other practice I know. I can't say enough good things about them. They are truly champions in Delaney's care and we couldn't do this without them.

Also tomorrow, we will be headed back to Children's Hospital to meet with our Cardiologist, Julie Summerfield - another Angel. It will be a follow up to the Heart Catheterization to ensure that the Coarctation repair is holding. If not we may need to be scheduling open heart surgery to make a more permanent repair of the Coarc, and the additional holes her the heart.

Apart from those exciting developments we were visited by several wonderful people today. Rev. Schlak from Birmingham Lutheran Redeemer was here. He's such a wonderful person, we always feel better having spent a little time with him. He's such a good listener. What is also so inspiring to me is to be able to pray with him, you just feel empowered and touched. More of the warmth that we need in this home.

Our good friend Nicki lifted our spirits with breakfast and great conversation, she was able to get us to laugh which is so healthy and curative. It was also good to hear the wonderful news in her life, she really deserves wonderful things too. It was fun to see how excited she was to finally hold her for the first time, and was definitely "drunk on baby" - giddy herself over all of the expressions and movement. What was really cool is that Delaney actually let out a slightly more powerful, yet brief, cry than we have heard in a long time. It was fun that Nicki was here to witness it (more fun tricks, later).

My mom swung by briefly with fresh cut tulips, and soup from one of my childhood "neighborhood moms", Barb. Of course my Mom is always good for a smile and shot of positivity too. Love you, Mom!

We were also visited by a lovely parent from Groves High School, who came with good food, warm smiles, and heartfelt prayers. She was touched that we allowed her to be a part of Delaney's healing while we were glad to bring her into our home.

Most importantly, both Lindsay and I held Delaney for extended periods of time today. We took the advice of an old friend Laura, who happens to be a Psychologist (profession after my own heart) and gave us some really concrete activities we can use with Delaney to stimulate brain activity and development. Save the specifics, we are starting to see some results. More often than before she moves her arms and legs voluntarily, many of you have see the video I posted on Facebook (I will soon post pics and video here on a separate post) it was that, times ten. She turns her head from side to side, she arches her back to stretch, probably the most noticeable and impressive motor behavior using all limbs at the same time. Her yawns have become more distinctive and cute like those of old.

All of that is wonderful and gives us butterflies every time we see it. However, today as my mom pointed out before (perhaps even a bit prematurely) - the EYES have it. More true now than ever. We know that at least part of the time she was making direct eye contact. She even started showing signs of 'tracking' or 'following'. I was just giddy.

We know that these are all positive signs of the power of prayer, the human spirit, and the magic of babies. Much like catching a wave we are jumping at every swell, encouraging everything we are seeing. I studied behavioral psychology at Western Michigan University, and one rule that stands out in my mind: "the best predictor of future behavior is past behavior"...we have every reason to beleive that this will only continue. The behaviors will increase in frequency and duration, and likely will stimulate a synthesis of new behaviors.

We fervently hope that you will share in our intentions that she continue to regain her abilities. We hope and pray for the day that she relearns the ability to blink, and how to cough, suckle, and swallow. These basic skills would help make her life so much easier an go a long way to reconnecting to her family.

We love you all for the support, we can't say it enough.

Be well,
B & L & d

Delaney Update: 5/4

It was an interesting day today. We made some contacts and some decisions. With how well Delaney has been doing we feel we need to be looking at a different kind of assistance. After speaking with our pediatrician, we will be contacting Beaumont Home Care Sevices. We need the kind of support that respects what we are seeing as parents. In turn, giving the kind of care that responds to her development and growth. We have felt a little abandoned since leaving the hospital and the current nursing care has been relatively sporadic and more reactive, more about "us" than Delaney. What we've been receiving is just basic maintenanc and I REFUSE to allow her to stagnate.

I was especially motivated to look into different home care after a phone call to the Nurse Practitioner. We had called because we were concerned about Delaney (still) spitting up at feedings. Her recommendation was to switch from breast milk to Pedialite for 24 hours. Granted, if we were experiencing other digestive issues and dehydration that might have been an option, but we aren't and with Delaney's growth and development being what it is...we see evidence of it daily.

In short, I...was...pissed! I immediately contacted our pediatrician and asked for advice on how to handle the feedings. She got us in touch with a nurse on staff and calculated exactly how much breastmilk she should be getting every 24 hours and then calculated how to manage a continuous feed using the infuser. Further in order to boost her calories and keep the volume down she recommended that we order Human Milk Fortifier. Not something that I had ever heard of, but it is often used with premie babies. It's expensive, about a dollar per unit, but it's what she needs right now and really we can't put a price on that.

On another note, I also had a very encouraging phone call from my old friend Wade (I just learned that he's a Neurologist at UofM). After a great conversation, he validated so much of what I feel and see in Delaney. He gave us a good direction to go and will soon be in contact with a colleague of his who specializes in pediatrics. I'm so excited! We talked a lot about what we were told at Children's Hospital regarding the brain trauma. What has been bugging me the whole time is that the research that they cited was from premies and neonates that experienced oxygen deprivation at birth. Delaney experienced three glorious weeks of brain development, that is a huge difference in and of itself. Further, and not to be too presumptuous, we don't know what kind of home environment those babies had, or what kind of support those families had access too. Too many variables, and too few case studies (not more than 250-300 children). And as I said before maybe Delaney is the 301st baby they didn't see. Tenacious D, in the house!

In closing, Lindsay and I were well taken care of today. Kelli and Greg were here and took care of much needed chores around the house, ran errands, and just brought good warm vibes to our home. Our good friend Caroline made it possible for a massage for each of us right here at home (It helped so much). Our other friend Cece (aka Earth Angel) made it possible to have Delaney's feet and hands imprinted in ceramic tiles. We can't wait to see the result, it will be as precious as she is!

God Bless,
B & L & d

Delaney Update: 5/3

It was the second night in a row of Daddy-Duty, and while I'm tired it was uneventful. Beyond the regular feedings and respiratory checks, it was just a matter of trying to get as much sleep as I could. At different times during the night Delaney had varied levels if sleep and wakefulness. The occasional sigh, gurgle, and coo was much preferred over the previous night's anxiety over hydration.

Today was a relaxing day, the first in a while. As much as one can get "used" to this, we were calm and settled. We had good solid feedings with no spit ups, many a wet diaper, and a lot of physical movement - which always makes us happy. We even increased her amount per feed with no problem. I'm excited about that because I want her to start gaining more, I think she expends a lot of energy in repair.

We had our second visit with the Reiki specialist today. Much like last week, she was active - even more so today. She just seemed more responsive and not by mere reflex. We had her lying on her back, her legs and arms moved easily with purpose, her eyes were brighter and appeared to scan the room. I wouldn't be able to tell if she was actually focusing on something, but each time she makes an effort we are encouraged that she is going to grow and improve. Much the opposite of what one typically associates with Hospice.

As we have come to learn through stories anecdotal and otherwise, many people who sort of wind up in Hospice care actually "graduate". We want nothing more than to see our Delaney make it to this graduation, and many more. She's got a lot of learning to do and so many adventures to take. Each time she breathes a little easier and shows us more of the fight that she has in her, the more we are encouraged and inspired. Lindsay and I are her biggest cheerleaders, but I want her to be able to know all of the hundreds, and now, thousands of people who are cheering along with us. One day I want her to know that she made it though this time with help from people who may never meet her face to face, but they were so touched by her story that they were compelled to be a part of it.

I made some more contacts today with some alternative therapies, doctors for second opinions, and more help to support Lindsay and I to be as strong as we can be. I have some doctors at U of M Mott that I will get in touch with tomorrow. We also have a Feldenkrais practitioner that we will be contacting tomorrow. Not sure how quickly we will be able to get that going but in the mean time we got a great email from an old High School friend who is a Psychologist. She had many simple suggestions on some very good exercises we could do to stimulate all of Delaney's senses.

In terms if respite, Lindsay's Dad arrived this afternoon, just to stay the night. He's an RN and helped us with the first few days if learning how to manage home care. This kind of help is peace of mind to know that we can take a break and step away for even an hour. Coincidentally, we were contacted by another RN who offered this kind of help and we will definitely be taking her up on that.

This gift of time is such a huge part of our ability to cope. Moreover, Delaney's ability to overcome. I recall when we were in the hospital and being hit with blow after blow, this domino effect of diagnoses. I broke down at one point sobbing and said, "She just needs time...". We felt things were moving so quickly, that even we couldn't keep up let alone our poor helpless child. We kept asking, "When is she going to get a break?" It felt so much like a nightmare when you want and need to get away but find your self unable to run, unable to cry out for help; or if you did it only manifested as a quiet whimper.

As scary as it was to hear that the hospital couldn't provide anymore help and that we would be going home to Hospice care, ironically it has turned out to be the best medicine. Further, we are pursuing things that we wouldn't have the freedom to use as completely in the hospital as we can at home. Ultimately, Delaney is our child and our responsibility to care for. As long as all of the modern medicine has truly done whatever it can, we will take it from here. As parents in the hospital it felt helpless. We had to give over the power to those with the expertise. In an odd way, that power has now been returned to us. Lindsay and I have a lot of love to give.

Since her Dad (and youngest sister) were here to help out this evening. Lindsay and I were able to do something we haven't been able to do in quite a while. We went out to dinner. It wasn't easy, and as time wore on we grew increasingly anxious to return home but the time away was really valuable. We always have really good communication, but being able to separate from the intensity of caretaking allowed us to have some deeper conversation about what has been going on in our hearts and minds. We talked about our fears and hopes, about extended family and friends and their role in all of this. We also talked a lot about faith.

You can't help but ask a lot of "Why" questions when tragedy strikes at a family. We are no different, but what we found tonight is that we differ in some of our expectations about how to cope with the why of it all. We talked about the importance of recognizing where Delaney truly is in her recovery and balancing that with what and where we want her to be. All the while we have to be able to mourn the loss of where she was before all of this happened. There are some really big losses here. There's the loss of what was, and yet there is also the loss of what we had 'expected to be'.

Our efforts emotionally and spiritually need to be directed towards allowing events to unfold, without prejudice or expectation. However, we fervently hope and pray for all of those positive things that we want for Delaney. In turn, keeping a balance of all of those things will help us to encourage the growth and development that Delaney is capable of and maintaining our positition to "see" it and respond to it appropriately without being clouded to the truth.

I leave you with our hope that you will cotinue to pray for the best possible outcome, our ability to allow the events to unfold, while holding our hope alive for all the best things for our daughter.

Love,
B & L & d

Delaney Update: 5/2

The ups and downs of taking care of anyone healing from massive trauma can be a very slow process. Filled with gains and losses. I was able to share some small but very happy gains yesterday. Today on the other side of the coin we are closely monitoring Delaney's fluid intake. She went an extended period of time without a wet diaper and this worried us a great deal.

She has been appearing very healthy outwardly, clearly looks 100% better than she did at the hospital. However, being new to infant care, let alone with the maladies she has faced we have to be extra careful to monitor many specific vitals, but hyrdration is a serious concern that we need to be extra careful with as we try to increase her amount of breastmilk per feed.

Since she was at Children's Hospital and on IV fluids for so long we have had to try to increase her daily intake a little bit at a time, as her stomach completely heals from the Necrotizing Entrocolotis (NEC). This is treated with antibiotics and IV nutrition. She wasn't allowed to feed normally for 10 days. As a result, her stomach shrunk and since that time her body has had to learn how to digest all over again.

As we have tried to increase her feeds, Delaney has been able to tolerate these increases pretty well. We recently hit a snag and couldn't get her above 45ml per feed without her spitting up a fair amount. A baby spitting up isn't usually a big deal but Delaney can't cough, swallow, or clear her throat. So there is always the danger of aspirating fluids. A delicate balance of increasing feeds and not over doing it.

Last night as we examined her we noticed that her fontanelle (soft spot) and discovered that it was slightly depressed (a sign of dehydration in infants). We called the on-call hospice nurse and got some advice on how to handle it. Based on his recommendations we added some water in between feedings through her feeding tube and reduced the amount of each feed and increased the frequency from every three hours to every two.

Last night, I was a wreck. I couldn't sleep until I knew we had a wet diaper. 1:30am turned to 2:30am, still nothing. Each hour I checked and have small amounts of water in between regular feedings. As 3:30am rolled around I just couldn't stay awake any longer, but still no wet diaper.

Much to my relief as I woke up, Lindsay found the jackpot. I was never happier to hear about a wet diaper in my life. Our efforts finally paid off and she had several wet diapers today, and we are back on track.

I have written before about living on the moment, let me tell you when we are monitoring feedings, diapers, breathing...I'm certainly not thinking about the playoff hockey, politics, or funding education. It's just the three of us coordinating our attacks on all of these fronts. It's not easy, but we will do anything for our daughter.

...but enough about us, how about you? I would like to take this opportunity to thank you all for such generosity. Words cannot fully express our gratitude for the outpouring of support financially, emotionally, and spiritually. This little girl has touched so many in such a short period of time. She is so tiny, yet so powerful. I can't help but think of "The Lord of the Rings" epic story, with Frodo taking on a task that was so much bigger than himself. He couldn't do it alone, and in our fight neither can we. Thank you so much, we love you all.

God Bless,
B & L & d