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!!
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.
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