Looking Forward to the New Year

Yesterday, Declan spent the day visiting the cardiologist and having an echo cardiogram. The doctors were pleased with the way things looked.  Nothing was present that shouldn't be - his heart was making all the right noises. The cardiologists were happy with his progress as well. They were excited about his weight gain as hit 10 lbs even! The concern we have is his lack of bottle feeding. Prior to leaving the hospital he would take close to 1/2 an ounce. Since then, the amount he has taken orally has slowly decreased - now down less than 1/5 an ounce. The doctors were not as concerned as they are more focused on his weight gain. We have therapists coming this week, so perhaps they can crack the code to Declan's lack of bottle feeding. Luckily, he has the feeding tube to make up the difference. 

We are so blessed that he has been relatively healthy.   His color is good, the scar on his stomach has been healing, his heart sounds good, and he is slowly gaining weight. We are doing our best to adapt to our lack of sleep, and getting more comfortable with replacing his feeding tube  (he threw up the tube out of his mouth 3 times this week.)  Cambria is learning :"not to touch" and I love to watch her walk up to Declan and say, "baby, shhhh" and hold her finger to her closed lips. 

Looking for "Normal"

I can't believe how long its been since I've updated so I apologize  We returned from the hospital last Sunday afternoon. Declan had been keeping most of his feeds down and the doctors felt comfortable with us leaving. Declan has been doing pretty good keeping everything down at home as well. We were working on getting his feeds up to 75cc's per 3 hours. But then the other day he started throwing up again. As a result, the doctors have backed down to 60 cc's for a couple of days to see how he does. They seem to be okay with it as he has moderate weight gain. But we hope he can handle the feeds so we can start to ramp him back up. His weight is at 4.27kg. (For all his charting we have to do kilograms). His weight today was slightly down,  but the overall trend is positive. Today, when Tammy realized the number was less then yesterday, she said, "We'll just weigh him a bit later and maybe it will be a bit more."  I replied, "You cant just weigh him 5 times a day and pick the best number".  Tammy's reply: "Well clearly you haven't been on many diets!" 

I think the biggest adjustment is just trying to see how this all fits into everyday life. It is so difficult having to monitor Declan so closely, all the time. It's both mentally exhausting and physically draining. The constant feeding, then keeping him still so he doesn't spit up the feed, with a short break before doing it all over again is taxing. Then to top it off, we try to put in time with the girls so they don't feel neglected. The process makes for long evenings and tiresome nights. We have started switching feeds and that has helped and we've been given the green light to skip the 3am feed. Last night was our first night without that feed and it felt great.  We've had Tammy's parents at our house and we've now swapped out to my parents here. We are grateful for all the help, prayers, and little acts of kindness. Thank you all!.

Hospital Take Two

Sorry, it's been a few days since I've updated the blog. Between going home and trying to establish some sort of pattern, work, and then returning to the hospital, it;s been a bit tough. But to backtrack a bit, we only lasted 3 days at home. The fun began Wednesday night. We just finished one of Declan's evening feeds when his feeding tube came out. Don't even ask how. We  have an amazing Doctor who came and helped us insert a new tube. A short while later Declan threw up with such force that his tube came out of his mouth.  We were able to put the tube back in. I thought all was well and Thursday morning I was off to work. The day went fairly well, but then Tammy called me just after 5 and let me know he threw up his tube again and the doctors wanted us to return to the hospital for observation and to get his feeding back on track. I rushed straight to the hospital from work and I met Tammy at the ER  Of course like any other ER visit - the process was VERY slow. First we had to wait to get the new tube placed. Then of course we had to get an X-ray to check the feeding tube's placement. Boy was that fun. We were wheeled to the "holding bay" for the x-ray department. All three "bay's" were full so they positioned us against the wall with an insightful view of the poor moaning man in bay 1, the gentleman contending for the worst case of pneumonia in bay 2, and the mystery lady in bay 3. Needless to say, Tammy covered Declan in a sheet in her best effort to protect him from every manner of bacteria and disease. Thankfully, the x-ray technician rescued us with a quick x-ray so we could be admitted to the 7th floor.

Because of the increasingly frequent feeding tube displacements, on Friday the nurses gave us instruction on inserting a new NG tube . We practiced a few times on a small doll before attempting the real thing under the watchful eye of the nurse.  Although practicing on the doll was good for understanding technique, it just isn't that same as trying to feed the floppy, thin tube through Declan's nostril as he gags and thrashes around. But I survived, or should I say, he survived. An x-ray after the fact showed the correct placement of the tube and his feeding was off to the races.

The primary purpose of this hospitalization has been his frequent vomiting. He hasn't thrown up the tube since we arrived but he has continued to throw up, including some odd yellowish bile almost immediately after he had eaten. (But no milk came up, so that was weird.)  They haven't been able to pinpoint anything specifically that might be causing everything. He may just have the tendency to spit up more so than other babies and/or have a type of re-flux. But we will see. We hope to be able to leave tomorrow - assuming no additional episodes. We will keep our fingers crossed.

Home At Last!

We are finally at home! We spent much of yesterday with the nurses passing our "final exam": spouting back medications, doses, frequency; reviewing our "red flags" and if you can believe it, proving to the nurses we knew how to use a scale properly. I must say leaving the hospital was a bit anti-climatic. We've worked with so many doctors and nurses, we almost expected the type of send-of you see when a ship leaves port. But no, just one nurse bringing in the paperwork and "okay, you're done" - not even a walk to the car.  But we were free!
Once home we had to set up our little, medical center in our bedroom. We have an oxomiter to measure his heart rate and oxygen saturation once a day, (or more until we become less paranoid.)  We have a dresser top full of medicine and syringes for his twice a day medications. Also stationed next to his pack-n-play is his tower that holds his feeding pouch and pump which pushes his milk through his feeding tube.

Our first night here at home was ROUGH.  Declan has to be fed every three hours, and it takes about an hour to do it.  We first feed as much as we can to him via bottle (usually less than an ounce) and the rest is given through the feeding tube. So the night went something like this: 9pm to 10pm feed. 10 to 11 get everything ready for the next day. Overslept the 12am feeding and woke up at 12:30am. Fed him until a little after 1am.  Slept until about 3:30. (This feeding we do entirely via tube, so doesn't take too long, other than having to get up and turn off the pump and flush his line.) Slept from just before 4am until just after 6am to start feeding again.  The difficulty is that it really takes both of us right now for the feeds because we have to do a couple of tube placement tests and set up the feeding pump while the other person tries to get the poor sleepy guy to take as much food as he can via bottle. I'm sure we'll get used to it, but it is an exhausting process.  Giving the meds is another process in of itself. Luckily that is only twice a day.

We were pretty frustrated when we woke up this morning. The amount of formula Declan normally takes via bottle had been much less since we came home, we weren't "on the dot" for his feeding schedule, and he threw up some of his meds last night so we had to call the doctor at 11pm to modify things a bit. Plus we were running late this morning bringing Declan to his doctor appointment at 8am in the down-pouring rain.  Our doctor was very good at helping us step back and look at the big picture. He gained weight and is now above his birth weight, and his bottle feeds will pick up. Eventually we will learn not to stress the little things.  We are getting used to the lack of security blanket the hospital provides and are very grateful for grandma and grandpa's help. We couldn't do it alone. We are grateful for everybody's help!

Light at the End of the Tunnel

D-day, Departure Day, whatever you want to call it. We are cautiously optimistic that it will take place on Monday! The doctors and nurses feel confident that we will be ready to bring Declan home this coming Monday. We've been practicing the feeding tube, reviewing warning signs, and watching Declan pass his various tests. He passed his hearing test and latest echo test. He continues to be seizure free and his bottle feeds are ever-so-slowly improving. Our Journey board is half full as well. I'm itching to get out of here. It feels like we are frozen in time - day in and day out in the same small room with no escape except the occasional food run. I think we've eaten every food in the cafeteria, passed up almost every food truck outside, and consumed far to many Subway sandwiches. It feels like the last three weeks have been one very long day.  We are so excited to go home. We miss our girls and cant wait to see them! It is a bit scary to think that we will be essentially, "on our own" but we're ready to try that next step!

Back to School

Yesterday was Back to School Day. We were bombarded with instruction from various nurses and technicians from morning to mid-afternoon. As part of our "progress board" we have to show proficiency in various aspects of Declan's care. We began with an introduction of his oxygen saturation monitor. The device tracks his oxygen saturation and heart rate. Something we'll have to monitor daily. Additionally we received training on his feeding tube: how to flush the lines, and set the computer for the correct amounts and duration. Felt fairly manageable if we never had to leave the house; but daunting to think about taking him anywhere. "Well" the nurse said, "you'll have a backpack you can keep the monitors and feed bags in if you're traveling."  That sounds exciting.  Left me feeling a bit overwhelmed.

The day wouldn't be complete without our daily medicine quiz to test our knowledge of what feels like his ever-growing list of medication (usage for each one, dosage, and how to administer them.) Also met with the Cardiology Nurse who will be our primary contact during our weekly visits. She taught us about various warning signs to watch for, that might dictate either an immediate visit to her team versus a call to the ambulance.. That part was a little unnerving thinking about how often we'll have to make that decision. But overall we are feeling better about things. Although Declan's weight has been about flat, his feeding has improved slightly. So although they are definitely baby steps forward, they are at lest steps forward.
Also, we finally got a shot without tubes because he was in between a new feeding tube insertion.

The Journey Board

Today we were introduced to the "Journey Board". The board consists of about 35 things we have to have completed, or "mastered" in order to leave the hospital. The requirements range from such items as identifying your pediatrician (which we thankfully have the best) to being able to administer his various medications through his feeding tubes. It also includes requirements such as testing for oxygen saturation  and understanding red flags that would require a return trip to the hospital.  It's a bit overwhelming to think about everything we have to be comfortable with; but we have a great nursing staff that can teach us. I keep joking with Tammy that we should be awarded an honorary nursing degree by the time we leave the hospital. In the next few days they will be showing us the ropes and teaching us the skills we will need.

Overall Declan continues to do better. Still working on getting him to stop throwing up the formula, but he's keeping more down today. Weight gain was minimal, but positive at least. Looking forward to completing the chart, one box at a time and getting our little fighter out of here! Thanks again for all the thoughts and prayers!

Graduation Day

Last night Declan graduated from the PICU! The move into the "regular" children's unit was definitely bittersweet. On one hand we are grateful to have progressed enough to move, but on the other hand, it was very nice to have various doctors and nurses camping right outside our door. But progress is good! He was released from the PICU because has hasn't had any additional seizures, no episodes of SVT, and generally has been improving.  Our biggest assignment now is to get him to gain weight and bottle feed. We generally feed him as much as he will take, with the balance given through his feeding tube. Before going home, he must consistently gain weight. (We are still under his birth weight of 8lbs 3oz) We also need a larger proportion of his feeds through the bottle. With HLHS it's a bit tricky because they don't want them burning too many calories by feeding. So he is fed smaller amounts every three hours. Definitely makes for interesting nights. I definitely feel like we're entering more into a newborn routine - just a few added wires, tube, and monitors.

I really hope we can get to the next step soon, this room is much smaller than our PICU room. Last night Tammy and I shared a "couch".  When we saw the 24" width, we looked at each other and smiled. Who would get the 12" with the backside of the couch to hold you in place and who would get the 12" with your body precariously hanging over the edge? I forget whether I volunteered, or whether it was assigned to me, but you guessed it - I won the precarious side!  We knew spooning wasn't an option - too small. So we tried the ole' head to toe sleeping method. We would place our heads on opposite sides of the couch and hope for the best. I grabbed on to her legs to prevent me from falling and she held on to my legs to keep me on the couch. We couldn't stop laughing. Luckily we only had to sleep for 3 hour stints because of Declan's feeding. But I am grateful, as Tammy gave me some great skin care tips for my legs when we woke up in the morning.

A Growing Fanclub

The day began quite early, 2:30 am to be exact. Declan did his thing in his diaper and wanted to make sure I knew it.  As strange as it sounds, I found some comfort in having to get out of my "bed" and groggily change his diaper and attempt to feed him.  I felt like one of the millions of other newborn parents out there - much closer to an average newborn parent.  Of course the morning wouldn't be complete without a 6:00 am trip to the MRI machine.
In order to get more information about the seizures Declan was having, the doctors ordered an MRI. However, there was great discussion as to when. The surgeons wanted to keep his fragile body away from the MRI machine as long as possible, and the other teams of doctors wanted it right away. Well, after many long and heated discussions, they agreed to this morning (as long as he wouldn't need to be sedated.) Given the surgeons objections, Tammy and I were extremely apprehensive and nervous. As I sat in the waiting room for 60 plus minutes, worst-case scenarios kept pouring through my head. But thankfully, Declan kept calm during the process; and although some of the pictures were slightly blurry, he was not sedated at all.
Later this morning Declan received more glowing reviews from the occupational therapist. He took 23 cc's by bottle and gave two squeaky burps. The nurses were all smiles and gave him praises - it was quite the performance.  We've really been trying to boost his bottle feedings. That will be the biggest hurdle that stops us from taking him home. We would love to get him comfortable enough so we don't have to take him home with a feeding tube. Additionally, tonight he took 37 cc's! Amazing what we get excited about these days.
Then, this afternoon, we got the results from the MRI. Not exactly what we were hoping for. The images show that various small portions of his inner brain show signs of minor injury. His seizures were probably caused by a blood clot that broke up and dispersed into different parts of his brain. At this point we don't know what the extent of his delay or decreased ability resulting from the damage will be. But we can hope for the best case scenario of recovery because he is so young.
Also, I heard some videos I've included can't be seen on mobile devices or Ipads so trying to repost this to see if it works:

Happy Thanksgiving

As I think on what it means to be thankful, I am reminded of the quote,"Happiness is a state of being". We have to be thankful and live in the present, not become fixated on that care-free future we often envision.  I probably am overly repetitive on this point but I have come to love and be thankful for every little step forward that Declan takes. Maybe it is by necessity of the situation, but Tammy and I relish every step forward. I feel like I have to - we have such a long haul ahead of us. We have to be grateful for the present.  If I am not positive, I start to feel that panic. You know that panic? The panic you feel when your are camping on a frigid night and in order to prevent from freezing, you cinch up the mummy sleeping bag so tight there is barely a hole to see from.  And when you wake up you can't find the hole and so you start panicking and scrambling to find the hole to get out? That's how I sometimes feel when I look at the journey ahead of us. Declan's experience has forced me to look at the present more-taught me to be thankful for every point along this journey.  I am thankful for my family, and I am also thankful for all those thoughts and prayers by so many people out there-some I am aware of and more that I am not aware of. So I thank you all!

The Cutest Boy

How does that phrase go? "There is nothing that brings a smile to a man's face like a full belly". I must say I witnessed one of the cutest smiles ever tonight. Tammy and I were feeding Declan his monstrous 9cc's (to supplement his feeding tube) That volume is usually enough to tucker him out.  He had finished and had that drowsy look on his face. I sang him a song and as soon as I finished he cracked the cutest baby smile ever! The smile flashed a couple of times and Tammy and I were both grinning ear to ear in response. We couldn't help but look at his cuteness in admiration - it was definitely one of those "Simba" moments for those Lion King fans out there.
We have been feeling very fortunate today. Declan was back. He had no seizures today, and we think we have the correct medication for him. (Although he will continue to be monitored witth an EEG to be sure about it.) The surgeon removed his pacemaker leads that had remained as a precautionary measure. He also removed the tube that went straight into his atrium in his heart.  The surgeon arrived to our room with his surgical tools and glasses in hand, "as a precautionary measure" he said. In very rare instances, it could bleed badly and he would have to immediately open up his chest again and stich up the bleeding - bedside. Just what I needed to hear. As the surgeon ever so slowly pulled the tubing out, Tammy helped keep Declan calm and I kept watching for Tammy to faint. But the procedure was fairly quick and Declan's bleeding was quick to stop. So 3 lines were removed from his body: 2 pacer lines: check, 1 RA line: check.  I feel as if each day I am winning Declan back, one piece at a time.

Screen shot of the day

I've often wondered how long you can stare at a computer screen before you go mad. Hopefully, I'll never find out. Declan's been attached to an EEG with the output on the screen as shown, (and a little camera to capture the action). These images are sent to "the Cave" as the nurses call it, where a number of neurologists stare at various patient's screens all day, monitoring the endless stream of waves, hoping to identify seizures. I don't know how they can do it. Declan had a number of non-clinical seizures (only visible by the charts on the screen) last night, but with the adjustments in medication, we think they have almost stopped. (Only 2 in the last 12 hours.) We hope to get these stopped altogether tomorrow. So a slight victory there.

On a very positive note, the therapists came in to work with Declan on feeding out of a bottle. (He has not had a bottle at all in his little lifetime). She was wonderful: very kind and soothing through the process. She gave him rave reviews about his "sucking level". After 15cc's he was zonked; but received a very enthusiastic "thumbs up" from the therapist.  He gets all of his nutrition through his feeding tube; so this is just for developmental purposes. After feeling so down last night, it was nice to wake up today with a clean slate and experience some small victories. We will take them in whatever size or form they come!

When Will It Stop

This morning started off very positively, Declan's oxygen tube was removed. We finally had full access to his cheeks! We were feeling very upbeat about everything. The doctors were going to give us the green light to feed him with a bottle. We were feeling so good about things I decided to head down to work for a bit. After battling taillights on I-95 for almost 2 hours, I settled into my desk. My office visit was short-lived however. About 40 minutes after I arrived Tammy frantically called me asking that I return to the hospital because Declan was having seizures. Although my visibility was hampered by both the driving rain on the windshield and my tears, I made it back in half the time.

I was greeted by Tammy's puffy eyes. She informed me that when she was getting ready to feed him he started getting sleepy, and then the seizures began. They called the doctors in and he seized again. We began receiving visits by various doctors and neurologists.  Declan received medication to stop the seizures. He also underwent a CAT scan. The scan returned nothing obvious. As the medication wore off the seizures crept back. I don't know if the nurses just felt bad for us, but they allowed us to hold him for the first time since his surgery. The experience was very bittersweet. As I held him in my arms, he would occasionally seize. My hear ached every time I felt his small body twitch in my arms. I wanted to stop them somehow, but couldn't. The doctors are slowly increasing the dosage until they find the right balance to stop the seizures.

Declan's head is currently covered in the lines used for an EEG - looks like a little hat of gauze with 24 various colored wires poking out.  My eyes go from him to the monitor and back again.  I sit and stare at the waves on the screen and cringe every time I see the patterns that indicate a seizure. Unfortunately, he can't have an MRI yet because there are lines  going into his heart from his surgery that cannot be removed yet. Hopefully with the EEG and MRI they can pinpoint the cause.

The doctors seem optimistic: "he's doing great - we're just having a minor setback."  I do my best to shake my head in agreement, but I feel with each step forward we take an almost equally large step backwards. I am so drained from this process. We were so excited about what today would bring, only to have our hopes shattered by another setback. I feel exactly like my emotions the first night after his surgery, unsure what to make of the situation and the uncertainty. Let's hope for a brighter tomorrow.

A Mother's Cry

We finally had a nice boring day with Declan. Our assignment as given by the doctor was to work on his sucking skills because he hasn't had a bottle since birth. All of his nutrition  has come through IV. He has started his feeding tube but we are hopeful to start bottles in the next few days or so. But throughout the day he remained stable and lasted the day without an SVT episode. We also had a special treat with Grandma and Grandpa bringing Acadia and Britta in to see Declan. I love hearing their hushed tones when they see him and lovingly stare at him

Earlier today I was reminded that I have so many things to be thankful for. I've been running a fellow "PICU resident" (father of a patient) wandering around the hospital floor for the past few days. Whenever I see him he's had a look of hurt in his eyes. So yesterday I tried to strike up a conversation with him. I learned through his broken English that his 17 year old daughter was just diagnosed with Leukemia. Well today Tammy and I saw him and his family in tears, and then heard his wife wailing uncontrollably. The sound was deafening to our emotions; it was a mother's cry for her daughter. I learned that his daughter had very serious internal bleeding which spread to her lungs and things had taken a nasty turn for the worse.  The family was not very hopeful. I don'k know Spanish, but understood enough to piece together,, "why". I felt helpless to do anything other than place my hand on the father's shoulder and let him know we would be praying for them.

The interaction caused me to take a pause at our situation. I think that sometimes I (or we) forget there is always somebody out there whose problems are worse than our own. So many people hurting out there we are not aware of. So many things to be grateful for in our circumstances - we just have to learn to recognize and appreciate each and every small victory and special moment!

Marching Forward (sort of)

10:00PM Today was full of baby steps. The day was completely different from yesterday After having a very steady night, the doctors cleared Declan to have various items removed from him. The tubes for his chest drain and stomach drain were removed, among a few other items. He also had his catheter removed so we are all clear for diapers!  Later this afternoon he had a CPAP trial where they take him off of his breathing machine to see how he would respond. He passed and tonight they removed his breathing tube down his throat. A few doctors and nurses gathered in the room and they readied the oxygen, just in case he didn't respond well. Normally, his oxygen saturation levels are in the mid to high 80's. As they removed the tube I watched the monitor fall to the low 80's, then the 70's. My hands started sweating as the numbers fell into the 60's. But then he came back up into the low 80's. He still is slightly oxygen assisted, but as you can see he is much happier!  He is able to cry now and it is music to my ears! (For now.) His tube feeding has resumed as well. Although yesterday was a step back, today Declan marched forward!

11:30 PM Can I take back what I just said? I was literally about to hit the post button and his alarms went off because his heart rate began spiking again to the 270's. Another SVT episode. The doctors were able to control it, but it was another room full of doctors, another round of sweaty palms, and another round of anxiety. Here comes another sleepless night. 

Grey Hairs Galore

Life has a funny way of keeping you on your toes. Just when you get settled in to a routine and feeling good, along comes a curveball.  All of Declan's numbers (hear rate, respiratory rate, blood pressure, etc.) have been very consistent yesterday afternoon and through the night. We woke this morning with good news of his overnight stability. Then at about 10:00 this morning his heart rate suddenly spiked to 270bpm. We first thought the machine wasn't picking up the sensors correctly. A different monitor was brought in to confirm the rate - it was correct. Suddenly doctors and nurses poured into the room and began scouring the printouts and discussing possible reasons for the SVT, (very rapid heart rate) Meanwhile, Tammy and I are fighting back tears, wondering if this is it. The doctors kept reassuring us that his other vitals were fine, so he can tolerate it for the time being. I had a million things running through my head.  I kept trying to think, "doctors keep saying par for the course, par for the course" but the stronger voice in my head yelled back, "par for WHAT course?" Tammy and I were frightened beyond what we have ever felt and hope to ever feel. Thankfully, his vitals remained stable during the episode and it was agreed upon by the doctors to give him a medicine used commonly for SVT but that only became effective after the second attempt.   He has been fine since, and the doctors attributed the SVT (so far) to an imbalance in electrolytes because various factors. (I'll spare you the details) They say it can be common for children after a Norwood to have "little" episodes.  If this was a little episode, I pray that he never has a big one.  Our nurse was wonderful - kept such a level head; and I am so grateful for the doctors and social worker who would whisper to us what was going on. On a positive note for the day, one of Declan's monitors came off so we can see more of his cute little face. We love you sweet son, hang in there.

Tree of Life

Declan had an eventful night last night. Sometime around 1:00 AM or so his "numbers" changed a bit: sat levels, blood pressure, etc started moving around. The biggest, was a large spike in heart rate. After trying various methods of reduction, they were able to get it back down to a "normal" level. Thankfully, Tammy and I missed it because we had opted for the "sleep room" last night. It was a difficult enough afternoon and evening and we were eager to attempt some peaceful rest. For what seemed like hours yesterday, there had been doctors in and out and we where trying to process and interpret everything. We were on the edge of our chairs and suffering from over-stimulation. We were overcome with emotion and exhaustion.  We slept the best we could. By the time I returned to the room at about 5:00 AM, he was stable and doing much better. The surgeons keep telling us it is par for the course, but I must be a much less experienced golfer than he is.

I'm grateful for modern medicine. I stare in amazement at his "tree of life" - his IV tower with various lines and pumps all feeding his little body with minute amounts of drugs to assist his little body in recovery.  Although he doesn't look good to the naked eye, it's amazing to think how much he has improved over the last 20 hours. His heart and stomach drainage have improved and his vitals appear stable.  We're starting to see some twitches in his body and get excited when he responds to our touch. He's our fighter and we appreciate everybody rooting for him!

The Waiting Game

10:00 AM: After an emotional morning we dropped Declan off at the OR for the Norwood operation at about 8:30 this morning.  So now the waiting game begins.  We are trying to keep busy: cross-stich, blogging, whatever it takes to pass the time and not dwell on the situation. (Although I realized I didn't marry Tammy for her cross-stitching skills.)  Each nurse that approaches the waiting room cause our eyes to dart up to see if she will be the one to give us the update.  Many names have been called, but no Declan yet. 

We arrived here at 7am and were rewarded with some special time with Declan. We took turns holding him, kissing him, talking to him, and with Grandpa's help, giving him a blessing. The NNICU nurse was kind enough to allow both Grandma and Grandpa in with us to say some emotional goodbyes.  We were prepared to put up a fight before giving him up; but know he needs this procedure so we tearfully and reluctantly gave him up. We know he will be watched over. 

2:30 PM: One of the nurses from the OR popped out about an hour ago. Said Declan was doing well. They have started the repair, but he looks good to this point. Thanks for everybody's thoughts and prayers! It's really meant a lot to us during this time: family, friends, friends of friends and more - we are grateful for you all!

7:30 PM Sorry its been a long afternoon so hadn't had a chance to update. The surgeons returned about 3:30 or so. They gave us a good report: he handled the surgery well. The doctor liked the way he adjusted during the surgery so he was able to close his chest.  He said his bleeding was under control as well.  His Aorta was on the small side (even for HLHS babies). But that was part of the repair and the surgeon said it was par for the course. Declan was wheeled up to the PICU where we got our first look at him.  It was a bit rough.  Although his chest was closed, his incision was difficult to look at. He is very swollen from the various fluids and has a multitude of lines and tubes coming out of his body.  There always seems to be 4 to 5 doctors in the room asking the nurse about various numbers and wanting this IV or that IV to be adjusted. 

From the discussions with the doctors the next 12 hours are the most critical of when something can potentially go wrong; so they keep a close eye on him.  I was doing pretty good right after the surgery and felt very upbeat. But now it seems a bit stressful to be in the room with him with the numbers flashing all over the screen mixed with various alarms constantly going off.  I'm also straining to pick up the lingo from the doctors constantly conversing with each other about this measurement or that measurement - just out of an audible level.  I can't help trying to memorize the thresholds for all the numbers and tests.  Tammy tells me that I have to let it go and trust the doctors and nurses, but I find it hard. I'm not sure if it a control thing, but I find myself wanted to know when each measurement threshold is breached and why. It's going to be a long night and longer couple of weeks.

Reality Check

Tomorrow is Declan's Norwood surgery so Tammy and I spent the good majority of the morning cuddling with Declan. We are constantly amazed at how much better he looks each day. Every day that goes by he looks more and more like a Petersen (or Saunders depending on the audience you ask).  We enjoy every moment holding him, not knowing what could lie ahead.

This afternoon we toured the PICU (Pediatric Intensive Care Unit) where Declan will be spending the next few weeks. We saw his room and received additional description of his condition when he returns from surgery. As the nurse described what he will look like with the various tubes leading to and from his little body, we fought back the tears. I completely lost it when she suggested to bring a current picture of Declan, so we can remember how he looks now versus when we see him in his post-operative condition. I continued to fight back the tears thinking of how Tammy and the girls might react from their first glance of Declan. That was the hardest part of today. He looks so good now, and I cringe to think of the pain he'll endure tomorrow. The surgeons stopped by the NNICU today to review the procedure with us again, which helped calm us a bit. But as I held Declan for the last time today I kept rubbing my fingers across his soft, smooth, chest knowing the next time I do that it will be scarred from the surgery,

We have heard from so many of you and really appreciate your support and prayers. You don't know how much it means to us. Tammy and I have heard from so many of you through phone calls, posts, and texts.  We thank you all.

Tomorrow morning Declan's Norwood is scheduled for 8:30 and should last 5 to 7 hours. Please keep him in your thoughts and prayers. He's our little fighter and I know he can do it!

His Eyes!

Declan's daily report from the doctor's came back with more good news of stability! Tammy held him for quite a while this morning and I enjoyed a cuddle with him as well. Every day he seems to look better and better. His poor swollen face has improved dramatically. His jaundice is running slightly high but no need to put him under the lights at this point. Overall the doctors have been well pleased - all things considered.  Oxygen saturation is running a bit high, but his blood gas and lactate levels have been holding steady; so they haven't' had to make any adjustments. Tammy and I were talking about how much our love for him has grown. We've been amazed (like all parents) how much and how quickly we have grown to love him. If nothing else, our experience to this point have taught us to cherish every moment with him. It's affected us at home with the girls as well - really trying to live in the moment and appreciate everything we do with them - slower to anger and quicker to love.

This afternoon in the NNICU (I always thought it was one "N") was an eventful one. Declan was subjected to every manner of poking, prodding, and probing conceivable. He was poked by various doctors; he was given an ultrasound to check his head, organs, and another heart check, and nurses attempted blood samples. The upside to the various disturbances - a wide awake Declan. We loved it - we hadn't ever seen his eyes open much before.

The downside of the afternoon's excitement was that it wore him out. He began the process very alert, but by the time of the last ultrasound, he had fallen asleep while being checked. He was so exhausted. Of course the nurses attempt at taking blood woke us both up. Poor Declan cried as the nurses unsuccessfully attempted to draw blood from his heals and veins in his hands. The process not only caused heartache to watch, but brought me back to the reality of the situation. His circulation is not strong enough to get enough blood to his extremities. I often look at him and think we could just unhook him and take him home, but this was a good reminder of why he's here and what modern medicine can correct.

Keeping Busy

This afternoon Tammy was resting peacefully in between visits to the NICU, but I was too restless. I don't know if was cabin fever due to our "luxurious" hospital room or thinking too much about Declan and the uncertain of his situation. I found a great app on my phone and thought I would throw together a few photos and short clips into a little "trailer".

If the video doesn't work, try this:  Declan's Journey

I found that this seems to be a good way to express my feelings and helps me cope with everything.  We were able to hold Declan again this afternoon and loved every minute of it. I'll post a few pictures too.

A Parent's Touch

This morning we sat in on the doctors' rounds for Declan. His "round" consisted of various doctors and the NICU nurse. They discussed his doses of IV fluid, prostaglandin, etc. Everything was kept pretty consistent. The doctors are keeping a close eye on not only his oxygen sat levels, but blood gases and lactate levels. Similar to a lactic acid build up in your muscles when your body requires lots of oxygen from exercising, a high level of lactic acid for Declan means he is not getting enough oxygen in his tissues from the blood he's receiving from his heart. Luckily he is currently in the acceptable range.  Sedation would come if he starts exceeding the range. We know he will have to be sedated at some point before the Norwood is performed, we are just trying to prolong it as long as possible. (We think the first surgery will be Wednesday, if all continues on schedule.) Overall they are pleased with Declan's development, he's been staying calm and stable. They keep the top lowered over his little incubator to keep his environment as calm and stable as possible - looks very cozy and warm. 

After the meeting, with the doctors Tammy and I sat in our usual positions to watch Declan through the incubator windows.  The nurse asked if we would like to hold Declan today. We were thrilled. She said because he has been so stable with his numbers we could hold him for a bit. Tammy held Declan first, than I took my turn.

The feeling of holding him in our arms again was amazing! We loved getting to see him up close and talking to him.  We looked at him with amazement as he nestled in our arms. Although Declan pretty much just slept, just holding him in our arms helps to heal our heavy hearts. It's been very difficult not having access to hold him at will. This experience has helped us appreciate every interaction we have with him and not take anything for granted  I couldn't believe how thrilled I was yesterday to change my first "tar diaper"! We are doing our best to soak in every moment we have with him!

Declan's Here!

Declan's Finally Here! After having the induction pushed back to Thursday night, and Tammy being in labor all day long, Declan was born at about 8:30pm on Friday, November 14.  Tammy was fantastic. She waited as long as she could before requesting the epidural. However, once she received it her blood pressure dropped and she became very faint so they had to drop back on the dosage and give her something to bring her blood pressure back up. A bit scary but the nurse and doctors were able to quickly remedy the situation. Her dilatation was slow in progression until the membrane broke and then everything went quickly after that point. Once Tammy was an "9" or so, her parents and I quickly dressed in our "scrubs" and she was wheeled to the OR for delivery.   The OR was a bustle of activity, various sets of doctors and nurses scrambling around to get ready: a few nurses, a couple of OB's 2, anesthesiologists, a couple of pediatric cardiologists, and others I didn't recognize. The OB's wouldn't let Tammy start pushing until everybody was in place which; caused Tammy excruciating pain - it was difficult to for both of us to bare. Once Tammy was able to finally push, it was a matter of minutes and Declan was out!

I was a bit surprised and nervous because of how blue he looked coming out (due to both the birthing process and the HLHS) Declan had a very small cry and then stopped. The cardiologists grabbed Declan and took him to the next room. Probably 30 seconds or less passed, but it seemed like an eternity; and but then we heard Declan's cry. So then we all cried. He was then brought back in the room to us to finally hold him.  He was beautiful!  We cherished those moments holding him-not knowing when we would be able to do it again. About 3 minutes later we reluctantly gave him back to the cardiologist.  I walked him back to the ICU where they would be inserting an IV through his umbilical cord and preforming the echocardiogram to check his heart.  We wouldn't be able to see him for a few hours.

Tammy was once again wheeled back to her room, where she commenced to throw up and my crippling migraine began. We were quite the pair.  Luckily we rested until a bit after midnight. One of the cardiologist returned to give us the updates we were anxiously waiting for.  Declan's condition was pretty much what they expected - as seen from his pre-birth ultrasounds. His left ventricle is severely underdeveloped, along with the aorta, mitral valve, etc. Pretty much the "standard" variety of HLHS. He was receiving prostaglandin to keep his PDA open so the right side of the heart pumps blood both to the lungs and the rest of the body. The Cardiologist said he was breathing on his own, which sometimes the prostaglandin can hinder. Additionally, the oxygen saturation levels were good, around the mid 90's. So a good looking HLHS baby!

After receiving the okay to venture down to the NICU, I wheeled Tammy down to see Declan. The NICU was a new experience for me, so I wasn't familiar with the strategically placed baby stations, each hold a sweet baby fighting its own struggles. Some babies small, other smaller, each baby hiding his or her own story of survival. We located Declan and found him resting peacefully. He looked MUCH better. His color was closer to a pinkish hue, although his head was still on the blue side - but a big improvement.  The first thing we noticed was the various lines into Declan: an IV through the umbilical cord,  and leads for his heart rate, temperature, and blood saturation.  But it didn't matter, he was here and he was as healthy as we could expect!  Although unable to hold him, we touched and kissed him until our weariness from the day forced us to bed.

We returned this morning to see him and found his color had improved from yesterday. He was cleaner and a little more of the infant "puffiness" had left. We spoke to one of the attending doctors who gave us a bit more detail about is oxygen saturation levels. They usually want the mid to high 80's or so, but Declan's was getting to the upper 90's which is higher than they would like. Because the right side of the heart pumps blood to both the lungs and rest of the body in its current state, a sat level too high means that too much flood is being pumped to his lungs and not enough to the rest of the body (tissues and organs).  As a result, medication is given to reduce the saturation to an acceptable level. He is currently being monitored to see how that level of medication works. We hope it works because if it does not, they may have to sedate him until his first surgery (the Norwood) is performed. Declan would basically be put under so they could manually control his breathing and get the correct oxygen saturation to the rest of his body. (I hope I described the explanation correctly from the doctor.) We love Declan so much already. I feel like we've been through so much with him already and know he is a fighter! One of my favorite moments of the day was watching Acadia and Britta meet him for the first time in the NICU.  Wide-eyed and nervous, they lovingly watched him and gently stroked him. They will both be fantastic sisters! Will keep you posted when we find out when Declan's first surgery will be performed, we think Wednesday, if his body cooperates, but will let you know! Thanks for all the thoughts and prayers!

A Night for Reflection (Tues Night)

Well, tomorrow was supposed to be the big day. We were scheduled to go to Yale New Haven Hospital for Tammy to be induced. But early this evening Tammy received a call from the hospital letting us know about our expected arrival at 8:30 tonight!. This was news to us! We scrambled to get all of our family in place tonight instead of tomorrow, show up at the hospital, and then are told that instead of inducing her tonight, it might happen tomorrow!  The team of surgeons, cardiologists and OB's would discuss the timetable tomorrow. So instead of my nice comfy bed, and a nice calm night with Tammy I get this wonderful hospital couch to nestle into for the night. I hope I can sleep, my thoughts and emotions have been all over the place today. My excitement rivals that of Christmas morning, but is overshadowed by fear and trepidation.

Although this is still only the start of the journey, it feels like we have been on this path for a very long time.

 I still remember just a few months into the pregnancy going to a secondary ultrasound at the hospital for "precautionary reasons". Our youngest Cambria had such an ultrasound and we didn't think too much of it. But then I remember hearing the tech mumbling to the doctor, "left ventricle this and left ventricle that" and "do you see the Aorta?"  all moments before the news came crashing down on us that our son was diagnosed with Hypoplastic Left Heart Syndrome. I remember fighting the tears as I returned from hearing this news at the hospital and went to pick up our sweet girls. Acadia looked at me and knew something was wrong instantly - "Daddy, what's the matter?" she nervously asked. I thought for sure I had put on my "Daddy Face" but she saw right through it.

That seemed to foreshadow the remainder of Tammy's pregnancy to this point - keeping emotions in check, trying to take all the unknowns in stride. I think for me this process has been a bit different than Tammy because she has been lovingly carrying Declan for 9 months; whereas my interactions with him are the occasional pulsating "kicks" against Tammy's stomach. And because the pregnancy has progressed so much like any other pregnancy (he's fine while inside her now) - it feels like a "normal" pregnancy until we return to the doctor for another gut-wrenching visit.

Those visits stir up the pot of emotions once again and I once again find myself fighting back the tears. Usually it's Tammy and I taking turns with the tears. She might be crying and I am good, then I fight tears and she's good. The most difficult visit for me to date was the visit with our cardiologist, Dr Weeks and she went into great detail of the logistics of the birthing process, the three surgeries, and the steps in between them.  I was absorbing it all, feeling good, ready to tackle what might come our way when she took a sidestep to discuss pain management for Declan. Everything halted for me.  I was processing everything mentally and emotionally she was saying but then it was as if my mind hit a dam that stopped my thought process and emotions and they began pooling as I thought about the pain he would be enduring. His chest would be cut open, heart partially replumbed, and in immense pain - but he would have no way to tell us. He would probably be  in so much pain he wouldn't have the energy to cry.  That did it, I couldn't bear to think about it. I lost my composure and the emotions spilled over. I could vaguely hear Dr Weeks continuing to talk, but I couldn't stop the tears and the thought of him in pain. I've had various knee surgeries, from scopes to reconstructive surgeries and know the grogginess, nausea, and pain that you feel when you wake up. If only I could take Declan's pain for him.

I don't know what tomorrow will bring. Tammy and I are both excited and scared. Whatever the outcome may be we will learn to adapt. We appreciate all the thoughts and prayers of family and friends, everyone has been so great to this point and Declan hasn't even been born. We'll do our best to keep everybody up to date.