It's a guessing game

Friday night after I left the hospital Madden was miserable, he had a very rough night and needed 5 extra doses of sedatives to help him relax. The next morning they TPA'd his chest tubes and he dumped 140 cc's from the left side. He was better throughout the day. Then later into the afternoon he started to melt down again. His blood pressure was all over the place - though his art line in his right arm is very unreliable - his heart reate was nearing the 200s and his resp rate was very high. I kept saying that he was dry and needed fluid...finally 45 minutes to an hour later, they gave him fluid. He was so dry that they had to give him fluid two more times throughout the night. I was actually a little mad at myself because Friday night I knew he needed fluid and never said anything... After the fluid he was settled for the rest of the night and most of the morning. Then around lunch time the RT's came to change the tape on his ventilator and that's when things went bad. He was MAD. He cried for a good hour. His temp was up to 38.6 and all of his numbers were high. Of course the solution, more sedatives. That only pissed him off even more...until the adivan hit. Which calmed him down for a while...as soon as he woke up he was just as angry. I always wonder why we try to cover up the problem wiht more sedatives instead of trying to figure out why he is so mad...but its a guessing game. Your guess is as good as mine and my guess is as good as the doctors. It is so frustrating. Madden finally relaxed and I left for dinner. Rocky and I had dinner together at my parents place. Rocky went back to the hospital and text me, guess who was miserable again. His temperature went up to 38.9 and all his numbers were high again. They are now thinking he has another infection, this is our fourth or fifth infection. It is soo frustrating. I am not sure how Madden is going to grow when he is busy fighting infection after infection.

Madden we love you as big as the sky and will continue to fight with you. You are a strong little boy and you will get through this. xox.

Madden sprung a leak

Today's weigh in was very disappointing. Madden weighed in at 7 lbs 0 ounces. All that "weight" was really fluid. Madden's chest xray yesterday morning (they xray every morning) looked quite hazy on the left side and yet the chest tube on that side wasn't draining. They knew there was a blockage so the TPA'd the line. Over the course of the day and night they drained 140 cc's of fluid from that side and another 45 from the right side. We fully expected him to be down in weight due to all this fluid loss...but weren't expecting it to be quite so low. Early on in this journey Madden was also weighed in at this number and at that time we know he had fluid on board so this isn't the lowest he has been. It is probably the most accurate weight we have since he was so dry when he was weighed today. We also know that right now, for the first time ever Madden has everything going for him in the "ability to gain weight" department so he should be able to gain. I am not going to take this weight as a negative. I am going to look at this as his first accurate weight and believe that he will go up from here.

For me today was a bit rough. We had a converstion with one of Madden's primary doctors and the reality of some of the things we talked about were hard to hear. Though I know that the "elephant in the room" is that one day they "might not be able to give Madden back to us", hearing is quite another. It's heartbreaking. I truly beleive with all my heart that we will get Madden home one day but listening to him not getting home being a possibility makes me instantly sick. After our talk I wanted to get away from the hospital for a little so I decided to run over to Kingsway and grab some lunch and shop a little - Kaelin's birthday is coming up. I went into H&M and wandered into the baby section...probably not the best idea on a rough day. I stood there looking at all the little clothes and bawled my eyes out. I know its trivial but I want Madden to wear clothes. I want him to have a closet full of clothes. I want him to be home so I can dress him in clothes. I want a little bit of normal.

Overall Madden had another pretty good day. His arm is getting less swollen and doesn't seem so tender to the touch. He is peeing like a champion so they have cut back on the lasix - hopefully this will help him gain weight. His chest tube drainage has really slowed down and his xray this morning looked great, hoping there isn't anything left in there to drain and that he doesnt start collecting more fluid there.

Keep fighting my sweet little warrior. We love you as big as the sky and neverending like the sky. xox

We've gained weight!

Really...we have ALL gained weight. I am not overly happy about myself gaining weight, but Madden is weighing in a 8 lbs even now!!!  Go Madden!

It's funny because usually your baby gaining weight is something that just happens...and not something that makes you over the moon happy. For Madden to be able to survive his next surgery he needs to get bigger and stronger. "Heart babies" (what I call Madden and all his "friends") have a very hard time growing because they are sick. So Madden growing makes my family over the moon happy. And this is the first time in his little lifetime that he has actually gained weight...not just fluid. This makes today a GREAT DAY!

The last two days have been very good for Madden. We have spent a lot of time holding hands, kissing and talking...really the poor kid has no choice. It's the best feeling in the world to have him hear my voice and look for me. The bonding that happens in the hospital is a lot different than the bonding parents are able to do with their babies at home. So being able to see that he recognizes my voice makes my heart smile. He has been a lot more relaxed lately and isn't hating the breathing tube as much as he was a couple days ago. He is still draining quite a bit of fluid from his chest cavities but it is less than it was last week so they are hoping that they will be able to start him on feeds again this Monday. Today they had to TPA the left drain (which is basically like putting draino into your sink to clean it out) and then it drained 60 cc's of fluid - which in an adult would be about 2 liters.  After the fluid is drained he is usally quite a bit happier as I am sure it makes it so much easier to breathe comfortably. His arm is still really swollen but doesn't seem to be bothering him as much. The doctor thinks that he likely has a localized infection from an IV that had previously been in that arm and instead of the meds and fluid going through his veins it was draining into his tissues.

Today I received an amazingly thoughtful gift from the family in the bed beside us. They are a family of 5 from BC. Their 15 year old daughter had a heart transplant a week ago and they are all here fighting with her through her recovery. Their daughter has been through more than anyone should have to go through in their lifetime and is no doubt a miracle. While the two older daughters were in the gift store they found some stollery bracelets that said "miracles happen". They bought one for each member of their family and also bought one for me. I was incredibly touched. It's true miracles do happen. They happen every day all around me and right in front of me. My family was blessed with Madden, a sweet little miracle. Needless to say I immediately went downstairs and bought a bracelet for every member of my family as well. We are proud of our little miracle now and forever.

<--------

Kaelin on Miracle Treat Day supporting his little brother (our warrior as Kaelin calls him).

Rocky's post

One of Rocky's posts from this morning that I want to keep...

"This may be all over the place as I will be giving info on Madden and venting.....probably all at the same time. On a major positive note Madden turned 7 weeks old yesterday and we fall more in love with him each day. This little man has taken us on a wild (not so entertaining) ride these 7 weeks and I wanna share with you my last 48 or so hours with him. Sunday morning I walked into 3 people at Maddens bedside and as I looked up his vital signs were all over the place which makes us worry. His Heart Rate was up to the 180s and his blood pressure was extremely high as well. They gave him a bunch of drugs to settle him....but nothing was working. Finally the doctor drained 65ccs of fluid which was pressing on his right lung....and within a half hour or so he was somewhat more settled. He then went on to have a great rest of Sunday and into Monday until about 630pm. At that point shortly before shift change he again started to get irritated and over the next 2.5 hrs his Heart Rate was minimum 175 and was hitting 200. Again...once the doctor was called in and after they gave him more drugs to settle....they pumped him with some fluid and all was corrected and he had a decent evening. The problem is with Madden he needs to grow so when he's working this hard he burns calories which will hinder in that growth. Their is something wrong with Madden and we were informed that today will be a busy day around his bed.
I guess I'm telling you this to kind of give you a glimpse at what carly and I deal with on not even a day by day basis...but an hourly basis. The thing about being a parent is when your child has discomfort....a fall and a bump or scraped knee...or a fever ...we pride ourselves in giving our child comfort and making them feel better. It's at this point where Carly and I feel helpless. With all the tubes it's difficult to hold him and when he's really stressed you have doctors and nurses doing their thing. You have no idea the joy when he's a little bothered and you whisper in his ear...tell him to keep fighting...tell him you love him...sing to him...rub his head..and he settles. But when the major stuff is going on you have to take a backseat and watch others try to get him settled. People often ask me how angry I am over this and Why this has happened to our family. Well to answer the why question.....we've adopted the if not us then who?. It's going to happen to someone and we were chosen for a reason. And I firmly believe we were chosen because of the wonderful friends and family we have around supporting us. To the anger question I simply offer this.....I don't think I've ever really been angry....the emotion I feel daily is sadness. I'm sad alot....and I cry over the weirdest things.
I will end with this....yesterday I was at home doing some laundry.....and for almost 3 years we've had 4 piles of clothes...mine carlys kaelins and rykers. But yesterday I had a 5th....we had some of maddens blankets we've been using at the hospital we had to get cleaned. As I sat and looked at that pile tears came to my eyes as I thought to myself that 5th pile should have sleepers and bibs and little shirts. We desperately want Madden home to have him know life outside tubes and drugs and doctors and nurses. We basically want our family of 5 to be together.
Please please keep praying for Madden as I believe with all my heart at some point he will be allowed home.....it just won't be for some months. The DeLuca family loves you all and are truly blessed to have this support given to us.

I love people

When we first found out that our unborn baby had a serious heart defect I wasnt sure how we were going to get through this. I wasn't sure how my family was going to be able to handle this. To be honest with you I dont think we would have been able to if it weren't for people. People we know and people we have never met. People are amazing. They have carried us through the minutes, hours and days we didn't think we were going to be able to get through. We have had so many people do so many incredible things for us. A few examples - Madden has a star in the sky named after him and watching over him, our freezer is full of food from people we know and people we don't know, people we know and people we dont know are praying for him, people have donated their time and money so that we can focus on getting our baby home, people have cleaned our house, people are thinking of our son while they are at home with their families - the list goes on and on. Words are not enough to express our gratitude. Madden has an army of people helping him fight for that we will be forever thankful. xox.

A quick update -

Apparently after my post last night Madden had an episode. His heart rate was almost in the 200's and his blood pressure dropped drastically. Poor Rocky has been there for the past two rough patches while I have been there for the smiles. It's not easy watching your child suffer knowing their well being is in someone else's hands. Apparently 3 nurses tried to comfort Madden for over 45 minutes and gave him a few doses of pain meds and some sedatives to try to settle him before finally calling one of the drs. She got there and told the nurses he needed fluid... Very frustrating because as Rocky was telling me what was going on I told him that he was probably dry and needed fluid. I just wish that if I can figure it out that fast it can get dealt with faster.

Today is day 50...

This morning I walked into the same situation as Rocky went through with Madden last night. This was happening all over again, at the same time morning rounds were at our bed. The drs were talking about how they were going to bring all his numbers down with medications. I was so frustrated I just started crying. To me it was so obvious that something was wrong with him. He was so upset and uncomfortable. I told the drs that they can do whatever they want medically but until they figure out what is actually bothering him and fix it, the numbers arent going to change. The dr listened...he walked over to Madden and examined him. His left arm happens to be about 3x the size of the right one and is inflammed and red and tender to the touch. He either has an infection, a clot or his arm is broken. They started him on antibiotics in case of infection and ordered an ultrasound and an x-ray to be done. They also increased his pain meds to help him with the discomfort. So far we dont have an answer but at least we have a reason as to why he is so upset. It seems to be one thing after another... The doctor thanked me four times today for challenging them.

Also had a chat with one of Madden's primary drs this afternoon. I finally asked him if they have ever seen a baby with Madden's anatomy...the answer was no. Not very comforting. Actually the entire talk wasn't all that comforting. A lot of obstacles that need to be overcome before we are at a safe place with our baby...we will get there.

Madden we love you as big as the sky and will fight with you and for you every minute of every single day. xoxo.

7 weeks old

Madden is seven weeks old today and weighs 7 lbs 7 ounces.

He still has quite a lot of fluid on him so is probably even a little less. He did get as low as 7 lbs 2 ounces so at least we know he is going the right direction. The plan is still to rest him and get him growing. He is still intubated and does not like the tube but is managing quite well with minimal sedation.

I got to the hospital this morning around 9:30 and he was awake. He didnt go to sleep until I left the unit at 2:30 to have lunch. I figure he is making up for the last 6 weeks that he mainly slept through. He was very alert and following me with his eyes. Its nice to see him doing a few normal baby things.

To avoid surgery in the next two weeks they have Madden on a new medication that is supposed to drop his blood pressure and help to send more blood to his body instead of to his lungs. About an hour after the medication is given it peaks and his blood pressure drops so you have to watch him very closely. If he is settled and sleeping his pressures can drop a little too low at which point you need to bug him to get the pressures back up. If that doesn't work then giving him some fluid usually helps.

All in all Madden has had a pretty good day.

Keep growing sweet boy! We love you as big as the sky. xox.

He SMILED at me!

Today started out rough for Madden but ended with a smile.

Rocky got to the hospital this morning just as the nurse was changing Madden's diaper. He is NEVER happy during bum changes but usually settles out pretty quickly after. He didnt thins time. Both Rocky and the nurse tried to console him for over an hour. His heart rate and blood pressure were high, his respirartory rate was high, his sats were low. The nurse gave him two doses of morphine and two doses of adivan and he still could not settle. From the MRI Madden had a few days ago we knew that he had more fluid pockets on his lungs with the right side being worse. Dr. Cave figured he wasn't able to settle because the fluid had become too much for him to handle. He does have chest tubes on both sides but neither of them have been draining anything. Dr. Cave tried to aspirate the left side but nothing came out. He then tried to aspirate the right side and immediately got 47 cc's of fluid out. Over the course of the day the right side drained another 40 cc's. They TPA'd the left side twice and it is slowly draining fluid also. After the fluid started coming out Madden's heart rate, blood pressure, sats and respiratory rate all settled and he was much happier.

I went to the hospital after Kaelin's soccer game and spent some time with Madden. When I got to the hospital I started talking to Madden and he opened his eyes and smiled at me. It melted my heart. He really does know me and loves me :) He had a very good night and was very settled. He didn't cry once and we talked all night long...well I talked and he listened. One of my favourite nights with Madden so far.

Madden we love you as big as the sky. Sleep tight little bug. xox.

The last month - June 28 to July 21

Madden has spent the last month and a bit in PICU. The rest of the unit has turned over multiple times and yet we are unable to find our way out of this place. We know this is where he needs to be so we are thankful that he is there but at the same time seeing Madden stuck is heartbreaking. We know his turn will come eventually, we just wish it would come sooner.

Let's finish getting up to date on Maddens status. Since June 28th Madden has had a lot go on and I haven't written anything down. Which means the following is everything I can remember about the last month in no particular order.

After the cath and ultrasound was done on Madden to see if he had developed any clots as his platlette count has continued to drop. The ultrasound found 3 clots. Two smaller ones in his neck, one on the right and one on the left and a large one in his right femural artery. The one in his right leg is very large and it is closing off the artery. He also has a smaller one in a vein in his right leg. Luckily his body has created other routes for the blood to flow to his right leg so it is still getting some circulation.

On July 2nd Rocky and I both decided to go to Kaelin's game to watch him play. At the game we were given a poster signed by all the players on the team. Kaelin's team has been incredibly supportive of our family during this time.

Our baby's kidneys have not been functioning very well since surgery. Mainly because his kidneys have taken many hits with the meds that he is on as well as the fact that your heart sends blood to the places that need it most and your kidneys are low down on the list. Because of this a pd cathedar has been put in Madden's stomach to help him get rid of fluid and toxins that he is unable to clear on his own right now. Around the middle of July the kidney doctors decided that Madden's kidneys were recovering and they felt he no longer needed the dialysis. The cathedar was removed and his kidneys have continued to improve even with the lasiks he is on to help him offload fluid.

Madden has had a few episodes where everything goes out of whack and the doctors need to up his support in all areas. One time this happened it was so bad that the intensivist that was on shift sat us down and talked to us about ecmo and heart transplants. The also put Madden on level 1 alert, which means the blood bank is prepared should be need to go on ecmo - basically a bypass machine that you are on constantly until surgery...not a good thing. The doctor told us that we are still far away from this but that the conversation is something that needs to be had. It was the hardest thing Rocky and I have had to hear. Neither of us had to think about it, we know that Madden is fighting for his life every minute of every day and we will be with him through this fight until he gives up. We will never give up for him. We will do everything we can to help him fight and fight with him.

Madden became neutropenic, which means he was immunocomprimised. His white blood cell count was 1 and his nutrofills were .1. Both very low. If he were to get an infection he would have nothing to fight it with. The doctors decided to put him on preventive antibiotics just to be safe, of course this like everything else has risks. The hemotologists figured that his bone marrow has been supressed because of either one of the medications he was on (that was discontinued once he became neutropenic) or because he overshot when he got an infection and created so many white blood cells that now his bone marrow is taking some time to recover. Either way Madden's blood cell counts have started to climb again and everything seems to be improving in this regard.

Kaelin and Ryker were finally able to get at Madden to give him some much needed love. I think these moments made everything all better for a few seconds.

<---- July 19

On July 17th Madden seemed to have hit a wall with his progress. He wasn't able to get off the breathing support and we need to figure out why. An echo was done to see if Madden's heart has stopped functioning as well as it was previously. The echo showed a significant narrowing in the descending part of his aorta. The narrowing seemed to be so drastic that the cardiologists didnt believe the results and ordered another echo first thing the next morning. That echo also showed a significant narrowing. Because clinically the narrowing didnt make sense the doctors decided an MRI would be necessary to get more accurate results. The next afternoon (July 19th) Madden was reintubated again and sedated for his MRI. He did very well during the test...because they had to put him to sleep - for the 4th time (open heart, chest closure, cardiac cath and MRI). The MRI showed a narrowing in one of the outflow valves in the heart and also thickening of the heart tissues. Another echo was done later that day to get a better view of a certain part of the heart. This echo showed that the narrowing they initially thought they saw coming from the heart wasn't as bad as they originally thought. Instead they figured that the main issue is that too much blood is being pumped to his lungs and not enough to the rest of the body. In the morning on the 20th the surgeons discussed what potential options there were for Madden at this time. They decided doing anything to Madden at this time is way to risky seeing as how he is only 6+ weeks old and very fragile (the poor kid hasn't grown in height or length and still weighs less than he did at birth). The plan is to leave Madden intubated and sedated enough to be comfortable for the next week or two and try to get him to grow then reevaluate. The hope is that Madden will then be strong enough to be able to breathe on his own and be able to handle the amount of blood he is sending to his lungs - which will hopefully be less.

And this is where we are at....

Madden we love you as big as the sky and can't wait for the day we can bring you home! xox

Going back in time

I started this blog as a way for us and our friends and family to remember Madden's journey...only thing is I am starting a little late. So this first post will take us back to the beginning and will get us as up to date as possible.

A lot has happened in Madden's first 6 weeks...

On April 16th (at 32 weeks pregnant) Rocky and I were told that our unborn baby had a heart defect. We were referred to the perinatal clinic at the Royal Alex hospital. Two days later a fetal echo confirmed that our baby had a serious heart condition. We were told that our son had a very small left ventricle, holes between the top and bottom walls in his heart and a big common valve instead of two valves. A series of three surgeries would be needed to "rewire" his heart to function with only one ventricle. The first surgery would happen within the first ten days of life, surgery number two at 4 - 6 months of age and surgery number 3 at 3 - 5 years of age. We were also told that he had a 75% chance of having either Trisomy 13, 18 or 21 and that we would need to do an amnio to get results. If our baby had any of these the chances of him surviving was slim to none. At 36 weeks the amnio was done and within two weeks we were told that our baby had none of the chromosome problems. This was one of the happiest days of our lives. It meant that our angel had a chance at life. The perinatal continued to follow us until our baby was born with ultrasounds, MRI's, stress tests, blood work etc. It was a busy few months. At our last appt at the perinatal clinic on June 1st we were told that our baby boy was weighing in at 9 lbs 12 ounces. That terrified me. Thankfully it also terrified my doctor. At my appt that Monday he stretched me to try to induce labour. He also booked me to be induced the next morning if his methods didn't work....they worked.

On Monday June 4th (Rocky and I's first wedding anniversary) our sweet baby boy - Madden Rocco DeLuca - was born at 9:46pm weighing 8 lbs 3 ounces (needless to say the estimated ultrasound weight was wrong...thank God!). Welcome to the world baby boy! Two hours after Madden was born he was transported to the Stollery and admitted into the NICU. Rocky went and met the ambulance at the UofA. That night he had a number of tests done (xRay, Echo, Stomach and brain ultrasounds etc.)

On June 5th Madden met his two older brothers and his grandma for the very first time. Lots of hugs, kisses and snuggles were shared this day!!

 Over the next few days Madden's work of breathing and rate of breathing started to increase. On June 10th the NICU doctors decided that Madden needed some help and decided to intubate him. This really helped Madden with his breathing but was VERY hard on us. The hardest part for us was seeing Madden cry and not hear any sound. Madden was also not a fan of the breathing tube and had to be sedated to stay comfortable. Every day Madden seemed to just get a little bit worse. Finally on June 13th one of the cardiologists decided to push the surgery up and spoke to the cardiologists. The next morning Madden went in for his first open heart surgery.

Surgery day... Thursday June 14th (Madden's due date). This was a rough day for Rocky and I, especially because we were not expecting Madden to be going in for surgery. I went to the hospital alone and was told when I got there that Madden's surgery had been moved up since he was going into heart failure and that he would be the second "case" of the day. I met with the surgeon - Dr. Rebekah - and he went over the plan for surgery and the potential complications as well as the risks. The surgeon planned to fis Madden's aorta (the arch coming off the heart) and close the ligation in his heart. For this to be done the surgeon had to go thru the middle of his chest and would likely leave his chest open to allow for swelling and to avoid to much compression on his heart. Rocky and I spent the morning praying for Madden and giving him as many kisses as possible. He also got a few pep talks to help him get thru the surgery. At 11am the anesthetic came to get Madden to take him for surgery, they let us walk a little ways with him and then asked us to say goodbye so they could take him into the O.R. Kissing him goodbye was incredibly hard and waiting for the next 5 hours was even harder. The surgeon came our around 3:30pm to tell us that the surgery was done and that he was happy with the work he had done. He also told us that Madden would be on his way to PICU in a few minutes. Rocky and I waited to see him come by, seeing him was one of the best feelings in the world. Even with all the tubes and wires he looked good. That night was ROUGH. Madden had a number of heart arithmia's (one being SVT's - his heart rate went from 160 to 220 in one beat. drs got everything ready to shock his heart out of it - meds and the machine, they also put ice on his face to try to shock him out of it. Was one of the scariest times of my life. Luckily Madden self converted within a minute both times), his pressures dropped, his sats dropped to 9 etc. Rocky and I spent the night at the hospital going in and out of the room. Sitting there and watching him struggle was just too hard...we needed to take breaks.

Madden used the pacemaker for probably the next week or so. His heart was very agitated from the surgery. On June 17th the surgeons had planned on closing Maddens chest however due to the amount of swelling and fluid that was draining his chest was left open. On June 18th at 11am his chest was closed.

----------> Madden a few days post surgery.

June 20th - Doctors think Madden has an infection but not sure where. His white blood cell count is up.

Nurse sent cultures to see if anything grows.

June 21st - Found pheumonia infection. Madden is very puffy and his colour isn't very good. He is struggling.

June 22nd - Finally took the breathing tube out! Added a drain to his left side to drain a fluid build up. Madden is on antibiotics and his white blood cell count is leveling off.

June 24th - Madden has been put on the cpap machine to help him with his breathing since he is working hard again. They took out the chest tube and one of the side drains today.

June 25th - ENT came to look at Madden as he is still making minimal noise since the breathing tube has come out. Apparently his left vocal chord has been paralyzed. They are thinking it was likely bruised during surgery and will recover. Recovery can take up to 2 years. Not being able to hear Madden make any sounds is completely heartbreaking. Today the central line came out and the pacemaker was turned off. His white blood cell count is also now within the normal range.

June 26th - Madden doesnt seem to be improving so the drs are going to do an echo to see if his heart function has gotten worse. If everything looks good then he will be going back to NICU today. After the echo it was decided that Madden would be staying in PICU and that he would be getting a cardiac cath done tomorrow to see how big his shunt is. This procedure has complications and he will need to be asleep for this. Drs are thinking he will need his next surgery sooner than later.

June 27th - Madden had a rough morning. His breathing got really bad, his sats dropped, heart rate increased and his blood pressured dropped. He had to be intubated in an emergent situation. Even Dr Koh did the cardiac cath. It went well, but took a very long time. Rocky and I were expecting him back much sooner and were very worried. In the end the shunt wasnt as big as they thought. However they are still thinking he will need surgery sooner. The goal is to get him to at least 6 weeks of age before needing to do the surgery.