Tuesday, May 31, 2011
Wednesday, May 25, 2011
Monday, May 23, 2011
Friday, May 20, 2011
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.
B & L & d
Wednesday, May 18, 2011
Tuesday, May 17, 2011
Monday, May 16, 2011
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.
B & L &d
Saturday, May 14, 2011
Friday, May 13, 2011
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.
B & L & d
Wednesday, May 11, 2011
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.
B & L & d
Tuesday, May 10, 2011
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.
Monday, May 9, 2011
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.
B & L & d
P.S. I did get Lindsay a beautiful (smokin' hot) dress for Mother's Day - it was no day
Saturday, May 7, 2011
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
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
Thursday, May 5, 2011
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.
B & L & d
Wednesday, May 4, 2011
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!
B & L & d
Tuesday, May 3, 2011
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.
B & L & d
Monday, May 2, 2011
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.
B & L & d