Happy Memorial Day

 These boys make my heart melt.

 Coop's reaction at an airplane spotting.

Happy Memorial Day! We are so blessed.

At last!

Captain is home! I can’t believe he’s finally home! When I arrived at the hospital this morning and the doc told me he could go home, tears filled my eyes and I ran and hugged the nurse. Even as I look at him right now, I could pinch myself because I can’t believe it’s all over.

William’s surgery went well, and we were so grateful for our surgeon, Dr. Collazo, and his expertise in saving our child’s life. It is amazing to think that he does this on a daily basis. I will forever be grateful for his hard work and his family’s sacrifice in getting him through school and to where he is right now. The world is a better place because of Dr. Collazo.

And some of you are not aware of some of the small yet big miracles that happened to us along the way. One of them was meeting Dr. Ben Cramer. Last summer, one of my college friends who I had not talked with in years randomly flew into DC for a meeting. She remembered I lived here and contacted me to get together for dinner. We had her and her husband over and as we began talking, she told us that she was staying with her sister and brother-in-law who had just moved here for his job. When we asked what he did, she replied: He’s a Pediatric Cardio Anesthesiologist at Inova Fairfax Hospital (our hospital). Ten days later we found out about Captain’s heart defect. Ben and his sweet wife had us over the night we found out about everything. Ben was the one who took William from us the morning of his surgery. And he was also the one who kept checking up on him for the remainder of our stay. I cannot tell you how comforting it was to have a familiar face and someone we admired make sure our child stayed asleep and pain-free while in surgery. Some may call that a coincidence, but I call it a miracle.

Another miracle that we encountered is that Dan, Cooper and I had moved to a new city (Oakton) exactly a year ago. In finding this home, we prayed that we would be led to the place that would be a good fit for us. We found a place, felt good about it, made an offer and got the house. A few days later we met our neighbors. The one right next door turned out to be a Neonatologist at Inova Fairfax Hospital. Go figure. And he was one of the doctors that kept a watchful eye on William while in the NICU and when he came home. He and his dear family have done so much for our family to which we are immensely grateful. Coincidence? No. Miracle? Yes.

These are a few, yet there are countless other examples of when we have seen the hand of the Lord in our lives. We have received such superb care and help from these doctors, nurses, friends and family along our journey. I do not have time nor space to personally thank all the angels on both sides of the veil that have come into our lives and alleviated our burdens. This has been the hardest thing we have gone through, yet we have seen more miracles in the last 10 months than we ever have before.

William still has a feeding tube but as he continues to gain more strength to eat on his own we will be able to get rid of it. It may take a few months. The surgeon said that William has a little bit of leakage in his valves, and there is about a 25% chance that he will need additional surgery in the future. This could be in 1 year or in 15 years, or not at all. Regardless, he will be monitored by the cardiologists for the rest of his life, and we pray that we will never have another hospital visit.  

Driving home from the hospital today, I couldn’t help but think that a chapter in our lives has closed. And for that I am grateful. I know there are still challenges to face in front of me, but at least I don’t feel like I could lose my child or that I will have to walk this road alone. I can breathe a little easier and relax a bit more. We are sure in love with this little guy, and we wouldn’t trade him for anything.

 

Quick Update - Post-Op Status

William's surgery was completed without a hitch.  The surgeon commented on the size of the hole... apparently it was massive.  Some things you can see with an echo, some things you can't... the size of the defect is one of those things that you just can't see.  Just goes to show how hard William had to work to move the blood throughout his body and why the surgery needed to happen sooner rather than later.

The next 24-36 hours are very crucial to how long his recovery will be.  So far there hasn't been anything too out of the ordinary, although, his body is definitely responding to the trauma of surgery.  As we speak I'm watching a nurse who is, in turn, watching the monitors constantly, walking back and forth, adding/adjusting medicine, explaining things to me as they go along.  As the doctor put it, levels that he shows now, may not mean anything in a day or two, but since it's within the first 24-36 hours, the look at everything.  I am 100% confident in the nursing staff and doctors.  He is absolutely getting phenomenal care.

Lindsay and I thank all of you from the bottom of our hearts for the outpouring of love and support through texts, emails, notes, prayers, fasting, thoughts, and acts of service.  All of you are busy-ridiculously busy-and yet you still find time to do these things in support of us and William.  I know I will never be able to individually thank all of you for the many things you have done.  We love you and humbly ask for your continued prayers as we begin the post-operation journey.

With Love and Gratitude,

Dan and Lindsay

Surgery Plan

Many of you have asked to be in the loop in regards to William and the time of his surgery. I will briefly fill you in on the details as they have changed often within the last week.

Wednesday William had another bad day and we found ourselves back at the hospital again for the 3^rd time. His breathing was faster, he had not tolerated his feeds and he was anything but calm. At this point, the doctors have done all that they can do in regards to medicine and care, and their hands are tied until he get his heart repair. So it was a easy decision for the cardiologists and surgeons to unanimously agreed that it was time to operate. William will remain in the hospital and will undergo open-heart surgery first thing on Monday morning. This is a major and intricate surgery where they will put him on bypass and completely reconstruct the valves and chambers of his heart (which is the size of a walnut). This heart repair often encounters many complications. We are asking for the prayers and holding a special fast (on Sunday) for all who wish to participate. At best, he will remain in the hospital for 2-3 weeks. The marvelous thing we have learned is that babies with Down Syndrome tend to rebound and recover more quickly and easily than normal developing children. So we are praying that all goes well, and that after this surgery he can heal and lead a normal life.

Thank you again for all your love, kind words, support, meals, and prayers. We love you.

Xoxo,

Lindsay and Dan

He's Home!

He’s home! Little William is finally home. We picked him up about 5 weeks ago from the hospital, and he has been doing very well ever since. It’s great it is to have all my boys under one roof, and none of them are sick (knock on wood).

William seems to have gotten over his RSV quite well. It took about 3 full weeks, but he is back to 100%. Most babies are hospitalized with the virus because of 2 reasons: they can’t breathe and need oxygen (which wasn’t William’s case) and/or they can’t eat. This part semi-affected him. He had a harder time eating because he was coughing so much, but it was a non-issue because he has a feeding tube. So whatever he couldn’t eat from the bottle, we put through the tube.

Regardless of the RSV, William was going to be sent home on a feeding tube. He simply didn’t and still doesn’t have the stamina to finish a bottle on his own. His heart defect makes him feel like he’s running a marathon and drinking a bottle at the same time. In addition, the swallow/suck/breathe combo was hard to coordinate. So while in the hospital the nurses made me become “familiar” with the ng or feeding tube.  Any type of cord/tube on a child freaks me out, and I have had a difficult time coming to grips with the fact that I’d have to deal with it. The first 2 times I tried inserting it through his nose, it coiled out of his mouth. Yeah, not fun. Especially when your poor boy is screaming his head off. The third time was a charm, except for the fact that I vowed to never again insert it on my own. It needs to be changed monthly, and I’ll have one of my home nurses do it for me. I wanted to do it once so that if he happened to pull it out in the middle of the night, I would have the confidence to get it back in. Let’s just pray it never happens…

The feeding tube has been both a blessing and a curse. It is a pain to mentally be aware of –when you dress him, bathe him, cuddle him or even just pick him up. It gets wrapped around his body, coiled around his arms, pulled on and yanked. I’m actually surprised it hasn’t come out yet. But on the flip side, it is a wonder and blessing at night! We have a home feeding pump which we hook up to William’s ng tube, -which means he gets continuously fed for 10 hours at night and therefore he sleeps 12 hours straight. Yes. It’s a beautiful thing. The main purpose of the pump is to conserve his energy, so he can try to bottle feed as much as possible during the day. I offer him the bottle every 3 hours, and he usually eats 1/5 of an ounce each time. Barely anything. Sometimes it’s more and we get so proud and cheer him on, but that’s few and far between. So whatever is left over I have to “gavage (sounds like garage).” It’s a technique they showed me in the hospital where I hook his ng tube up to a big syringe, pour the rest of his milk (which is fortified with extra calories so he eats less and gets more) in the syringe and let gravity work. It slowly works its way down the tube and lands directly in his stomach. It gets a little tricky with a 2-year-old running around, but luckily Cooper is still in denial that his little brother exists and keeps his distance.

So this whole feeding thing is a process and learning curve but it is SO much easier to deal with than making 2 trips to the hospital every day and the emotional roller coaster we endured. William is home and thriving. Many people have asked me when his surgery will be. We still have no idea. Every time I see the cardiologist, I try to pin him on at least a month, but he won’t budge. It really is a week to week decision. But ideally they’d like him to be 12-15lbs. William’s little heart is the size of his fist, or a walnut right now. They’d like him to plump up a bit before he goes in.  And once he has his surgery, hopefully his feeding tube will come out shortly there-after.

So that’s our update from here. Again, I am humbled by the many thoughtful notes from those who I haven’t heard from in years, from the dinners we’ve received and for the kind words from all. Thank you for caring, and for being a part of our lives. I honestly couldn’t be happier right now, and we are starting to get back into the groove of our lives.

 

 

 

The Journey Continues...

It’s almost been 6 weeks that William has been in the hospital, and I feel like I have aged at least 6 years! I’ve made over 85 visits to the hospital, paid over $150 in parking fees, visited 4 different units in the hospital, met with dozens of specialists and followed up with a never ending list of test and lab results. I’ve also come to memorize the potholes and bumps on the road to the hospital, befriend many other patients, respect many doctors and even be on a first name-basis with the garage parking tenants. I guess I’m a pretty big deal at the hospital…

A little over a week ago William was scheduled to be discharged. I was so excited as I woke up that morning thinking I would finally bring my baby home. Away from the needles and IV’s, away from the monitor beeps, and away from the constant blood tests and cultures. As I ironed his coming home outfit that morning, I got this small suspicion that I shouldn’t get my hopes up. After all, he’s been scheduled to come home twice before and then he’d lose too much weight or have trouble breathing. But last week I thought we were through all the problems. I thought he’d finally come home. As Dan and I began to leave the house to pick up William, I received a phone call from the nurse telling me that his temperature had spiked to 105 that morning, with a heart rate of 220 and that he was not coming home after all. Again. Dan and I hopped into the car and immediately ran to the hospital.

At that time William was on the Pediatric Floor for training and preparation to be discharged from the hospital. But once his fevers started spiking that high, we found ourselves back in the Intensive Care Unit (PICU).  From there the tests started. Every day they drew more blood, pricked his already scabbed over heel and took more urine samples. Nothing showed up and his fevers continued to spike. The doctors were perplexed and the potential diseases/viruses/bacteria that were brought up with doctors kept Dan and I up at night.  They thought at one point he had Meningitis and did a spinal tap. Thank heavens that came back negative! We never knew when we went to bed whether we’d be awaken by a phone call from the nurse telling us William had another spell. There were even moments when Dan and I thought we’d never bring William home. I wish I could erase from my mind the image of little William in his hospital bed, panting and struggling to breathe when his temperature spiked too high and when his heart rate was over 200.  Those are images that will probably haunt me the rest of my life. I worried and still do how his already frail heart can withstand such pressure. Wouldn’t he go into heart failure? The doctors assure me that he will be okay, and that if needed, he could go into early surgery.

Yesterday I received a call from the pediatric cardiologist telling me that William tested positive for RSV. I cannot explain to you the rush of emotions that went through me. On one hand, I was worried for William and how his already delicate heart/lungs would be able to withstand this virus. But the other part of me was relieved and encouraged that we finally knew the source, and that it wasn’t worse than it could be.  He was tested 7 days ago for RSV, which came back negative, but it wasn’t until they tested him again yesterday that it finally came back positive. And so now our little journey continues.

I do not know what the future holds. I do not know how William will endure this virus, or when we can take him home or when his surgery will be. I’m learning not to think of that, but to just keep my head down and make the best of the current day I have. There are smiles I can’t miss from Cooper. There are jokes to be had by my sweet husband. There are countless meals and notes from friends and family that brighten my day. There is so much good in my life. As so I live day to day, hour to hour trying my best to deal with the challenges that befall me, and to relish the good moments that I have. And when I have moments of complete despair and wonder if my life could get any harder, I meet someone who has it far worse than I do. And I am reminded of how richly blessed I am.

All that we suffer and go through molds us and shapes us into becoming better people. So it’s worth it. And William is also worth it. I would relieve these last 6 weeks a million times over again if it meant that I could still have him in our family. He is such a blessing and I believe he will be the one leading us to heaven.

Update on William

Seeing that William has been in the NICU for 3 ½ weeks, I thought it time to update friends and family on his condition. I was hoping and praying for this post to be a happy one about his plans to come home, but unfortunately that time has not arrived just yet. There are 3 main things that the doctors are monitoring quite closely and will continue to until little William comes home: his breathing in his lungs, his oxygen saturation levels and his feeding. Although I do not profess to be a medical expert, I will attempt to touch on each of these areas.

The Lungs:  Because of William’s rather large hole in his heart, there is an extra amount of blood flow to the lungs. This makes the lungs wet and heavy. His body/heart/lungs then have to work twice as hard to breathe and dry those babies out. The doctors and nurses compare it to running a marathon and being out of breath.  Whenever I hold him, his little head bobbles up and down and his chest moves in and out -and you can visually see his small body working hard to compensate for his heart defect. Obviously he can’t do it alone, and he is getting help from medicine (diuretics) to rid his lungs of that extra fluid. The medicine is helping, but we haven’t found the right dosage or combination of prescriptions. It’s a balancing act to find the right amount which dry out his lungs but don’t dehydrate him, or deplete/flood his blood levels of potassium or sodium. Even today they added to his dosage of diuretics, and I hope we soon find the right amount.

Oxygen: You will remember from my previous post that we were trying to get William off oxygen. The good news is that we have, the bad news is he still has a nasal cannula (breathing tube). He is breathing the same room air that you and I do, but he has an increase in air flow which pushes the air up his nose. We are trying to wean him off his cannula incrementally because he can’t go home on it. 

Feeding: Initially, William’s eating was awesome. He was able to take a bottle and also nurse from me. He has the coordination of sucking and swallowing which is HUGE, especially since he has Down Syndrome. Dan and I were encouraged initially with his abilities to gain weight and eat on his own. Unfortunately his eating volume began to scale back because (as noted above) his lungs/heart were working overtime and he was trying to run a marathon and eat at the same time. He got worn out after a few sucks, became disinterested in eating, fell asleep from exhaustion and therefore began to lose weight. Last week the nurses put a feeding tube up his nose to help him eat.  He has started to gain weight incrementally and we are so grateful for that. He’s 2-3 ounces heavier than his birth weight (6 lbs. 15 ounces) and ideally he needs to be 12-15lbs for his surgery. Today I found out that the doctors plan to surgically implant a feeding tube into his stomach. Poor little guy. As if he hasn’t been through enough! It will be temporary until he has his heart surgery, recovered and can eat strictly from the bottle. We have a long ways to go until then. The doctors feel that this tube is easier/less risky for me to use when he comes home. If I were to incorrectly place the tube, it could cause damage to little William and we’d be immediately sent to the ER for an X-ray and exam. Ugh, no thank you. But I wish the latter solution was easier to swallow (no pun intended…). It just kills me to see him go through an additional surgery–even as small as it may be. My heart just aches to see this sweet, innocent boy go through it.

So the question I know we’re all asking is: “so when does William get to come home?” I wish I knew. It seems every day the answer is different. In fact, within these 3 ½ weeks, twice we’ve been very close to bringing him home and then BAM, there’s been a hiccup or set-back. Looking back, I’m so grateful he didn’t come home because he wasn’t ready. It could be a few more weeks, or it could be a few more months. At this point we are living a day (or an hour) at a time and taking things as they come. He will come home when he is ready, and we are learning patience in the meantime. Besides Dan and I, no one has seen little William. Not even my mother (who was here for 3 weeks) or mother-in-law. Talk about patience! The hospital NICU rules have tightened due to the severity of the flu outbreak and only parents are allowed inside. I get the rules, and I understand the restrictions, but I just want to share little William with everyone because he is so darn cute. But until then we are focusing on his health and praying he continues to get the best care possible.

If you’ve made it to the end of this never-ending post, I thank you for caring. Thank you for your prayers and kind words. These last several weeks have been nothing less than a rollercoaster, but we have faith that smoother days and flatter plains are on the horizon. Hopefully next time I post, I can announce his homecoming!

Xoxo,
Lindsay

P.S. Enjoy the pictures. Isn’t he adorable? We’re completely smitten!

Introducing: William Christopher Ricks

Dan, Cooper, and I are blessed and honored to welcome William Christopher Ricks into our little family. He was born January 14, 2013 at 8:52pm weighing a healthy 6 pounds and 15 ounces. Our little toe head is a miracle in our lives, and we credit his safe arrival and delivery from all the many thoughts, prayers, fasting and support from so many friends and family. To all of you, Dan and I send our most heartfelt thanks and appreciation.

For those of you who aren’t aware, our little William was born with a heart defect called a “Common AV Valve.” This hole in his heart will require open heart surgery when William is between 4-6 months old. We found out about this complication at our routine level 2 Ultrasound when I was 20 weeks pregnant. We entered in that appointment eager to find out our baby’s gender, and left feeling like our hopes and dreams for our child had fallen apart. In addition to finding out the news about the baby’s heart, we soon learned that this type of defect was common in babies with Down Syndrome or Trisomy 21. We did further testing (amniocentesis) and received the results a week later that confirmed the genetic disorder.

So on Monday evening and at 39 weeks, little William was born. I fortunately was able to hold him for a few moments before they took him down to the NICU and he has been there ever since. He is progressing beautifully. They are still keeping a careful watch of his heart and on Friday will perform another echogram which will in large part determine when he can come home. He is eating well, breathing well, and hopefully by this weekend they will be able to take him off of his IV and oxygen. It is a miracle to see how far he has come this week and we thank our Heavenly Father as well as friends/family who have helped us every step of the way.

As many of you know, it has taken some time for Dan and I to wrap our heads around what we thought would never happen to us. But now after holding William this week I can honestly say that I would want it no other way. I know that this little boy was meant for our family and that I am supposed to be his mother. And I will now thank the Lord every day that I am blessed with this perfect child. I wish you all could meet him and feel of his pure and innocent spirit. He is an angel and I can’t believe the Lord has entrusted him into our family. I know I also speak for Dan that we are privileged to be his parents and hope that each one of you will come to know how special he is as well.

I will try to do better to update this blog with pictures, his progression, surgery and smiles. I know he will forever brighten all of our lives as we watch him grow.

Xoxo,

Lindsay, Dan and Cooper