Little Surprises

Yesterday, Daddy and I took lunch break and came back to Mason's bassinet to find a voice specialist around his bed. Apparently, while we were gone, they performed a test to see if there was any damage to his vocal cords. Children who have undergone surgical repairs to the left side of the heart often have their vocal cords damaged. The doctor, with no bedside manner whatsoever, told us that one of his vocal cords was not working. She indicated that is was probably due to surgery and he may have difficulty in swallowing. It was obvious she had never gone to Tact 101 while in medical school-the message was delivered with very little compassion. Fortunately, there was an therapist that was there to visit us who told us she would be performing a swallow study on Tuesday. We pray the cord isn't completely damaged-according to the therpist, Dr. Hanley and several nurses there is a 50% chance that it will repair itself and return on its own. Right now, Mason has a sweet little cry.

Today, Ernie left back home. It is time that the kids know that we still exsist! He hasn't told them he was coming and will be giving them a big surprise. Another big step was taken today. Baby Mason got his RA line out. This is a lijne/lead that goes directly into his heart. He bleda little when they pulled it out and therefore they had to give him some blood. The hurses took this time to change ot his dressings and find another vein for his IV line. I should be able to hold him sometime today. The chest tubes will be one of the last things to go. We also found out that he would be changed over to formula, Monogen, because the fat in the breast milk is going into his lymph nodes and being excreted out. You can see this in the secretions coming from his left chest tube. The clinical term for this is Chylothorax. It is caused due to trauma/nick in the lymph nodes near his heart. This is typically seen in repairs/surgery done to the aortic arch. The chyle from the lymph nodes is leaking out and filling his pleural space (space around his left lung). The condition is expected to heal on its own but I was told it may be undertermined amount of time. This means we will not be leaving the hospital until the drainage has cleared up. That is okay though-it was caught and we are hopeful that his little body can fix itself from this as well.

Extubation Day

Yesterday, Tuesday, August 27th was the day Mason was to be extubated. When we arrived to the CVICU early that morning he had just had another tube put into the back of his chest. The fluid that has been building up needed to be removed prior to having his tube come out and therefore his planned extubation needed to wait another day.

Ernie headed over to CVICU this morning to find that the doctors had decided that they would go ahead and remove his tube today. I remained back at the house to finish up some paperwork and got a text from Ernie saying they were about to do the procedure. Daddy was there to take the pictures and see the wonderful event. I'm actually glad I wasn't there since I didn't need to see him under any stress. Luckily, everything went well and he was able to breathe on his own. Another great accomplishment for our little one. He remained awake for the next five hours. His beautiful little eyes followed each of our faces. He looks so beautiful!

Starting out at 8 pounds 14 ounces sure must have come in handy,since now he looks so thin! Most likely he will be weighed in the next day or two and we'll be able to see just how much weight he has lost. Soon, the goal will be to put some of that weight back on. We are eagerly awaiting the dotor's ok to begin his feeds again. This is breast milk fed through the tube in his nose. One of the challenges for me has been to keep pumping every two hours or so for this little one. It's just a small thing to have to do compared to everything he has been through so far. As so many care to remind us, it's a long haul.

Mason's Chest Closing

Monday, August 25, 2008 was the day Mason's chest was closed! For the past few days, each doctor/nurse/nurse practioner commented on how good Mason's progress was. Each day we saw his swelling go down and his chest was coming together on its own. He is such an amazingly tough little guy and is holding his own.

We spend the majority of the day at his bedside. Although he is only 7 days old today, we know he is aware his Mommy and Daddy are there for him. The doctors told us that is was very possible that Mason would have his chest closed on Monday but of course, it was all pending on the surgeon's availability and bed space in the CVICU,(cardiovascular intensive care unit). We were told that Dr. Hanley was not in, but that Dr. Reddy would be the one doing the surgery along with Dr. Maeda one of the Fellows. The surgery would take place in the CVICU itself, not in the operating room. The room is removed of all visitors/parents and non-essential staff and the OR team is brought in. We waited all day for word and heard that around 3:30Dr. Reddy was giving his 45 minute notice to the parents of the patient he was operating on. Around 4:30 Dr. Reddy came in and told me, "looks like he will have his chest closed soon." We were so excited since we thought there was no way he would be set to go today. An hour or so later, the CVICU was closed off and Mason was on his way to closing his chest. At 6:20 pm Dr. Maeda came over to us in the patient waiting area and told us that everything went well. Mason had no problems with his pressure/stats so they were pleased with his results. We were so excited-this was such a fabulous step. His chest is being held together with surgical wire and will be re-opened on his next operation. Those wires will be there for the rest of his life!

This morning during rounds, the Doctors all agreed that he should be weaned from some of his medications, which include the paralyzing agent and morphine drip. The morphine itself can be administered by his nurse if she sees that he is getting agitated. I find myself so tearful wondering if he is in any pain. I can only continue to pray to God that he is watching over this sweet little boy.

When I walked in this morning, the curtains were pulled open and sunshine was bathing him in such a beautiful glow. For the first time since minutes after his birth he opened his beautiful eyes. He was staring right at me-I don't know for sure if he could see his Mommy but it felt so good no matter what! When he hears Daddy his heart rate goes up-we know he can hear us at the very least. Throughout the day he has started moving his limbs around a little at a time. His jerky movements are small but every one is helping his circulation improve. The most uncomfortable thing to watch has been when the nurses or the respiratory staff suction out his chest. Once he was crying, without sound, and started to turn purple due to the fact that the tube that is providing his oxygen/breathes is being suctioned out and he is void of air at the time. My heart felt such pain-I wish I could be there instead of him. Ernie asked his nurse, Anne, if this was typical and she said yes. She assured him that it appeared that Mason was not in pain since his blood pressure and oxygen levels changed during the procedure but shortly thereafter went down/up respectively. This is little reassurance to a mom not wanting any pain to come to her child.

We will be heading back to the hospital shortly to resume our vigil. Nurse Rosalina will be there tonight. She has been in the pediatric nursing field for over 30 years and takes the best of care with this little one. The only way I have been able to sleep at night is knowing he is in her care.

Baby Mason's Surgery Photos

August 22, 2008 Mason's Surgery, August 23, 2008 1 Day Post Op

Surgery Day

The most highly anticipated day of our lives has finally arrived. We heard Thursday that Mason's surgery had been scheduled for Friday morning-first surgery of the day. I asked to be able to hold him and got the okay from Dr. Hintz, the Neonatologist. Daddy went to give blood and I held Mason for approximately 2 hours. It was so wonderful! The transfer from his bed to my arms was almost effortless, regardless of all the wires and tubes he was connected to.

When we arrived at the hospital Friday morning we were greeted with the news that, yes, in fact he would be headed to surgery in the morning. His nurse then was able to have Daddy hold Mason for a while before getting him ready. When it was time to head to surgery he was sleeping on his tummy comfortably. The Director of Pediatric Anesthesia, Chandra Ramamoorthy, MD, was to be in charge of his anesthesia and was assissted by one of her Fellows. Her Fellow commented on Mason being the best hypoplast she had seen! Dr. Ramammorthy was ready to take Mason but found one of his leads not connected to the portable statistics/readers. She promptly took charged and found what was missing and we were off. At approximately 8:30 am when began our walk to surgery. When we reached the coridor to the surgery unit, I lost my composure and started to cry. One of the worst things possible is to have to give your baby to others for one of the most complex surgeries that could be performed on an infant.

At approximately 2:00 pm we were found by Arden, Patient Care Coordinator, and told we were getting our 45 minute call. This meant that in approximately 45 minutes the surgeon would be out to speak to us. A little over an hour later, Ernie saw Dr. Hanley coming towards the patient waiting area, where we were tucked behind a post. He almost walked away and Ernie called out to him. I quickly searched his face for the answers he would be giving us and knew things went well. He began by telling us that everything went as close to perfect as possible. There were no new anomolies that were encountered, everything was just as they expected with the heart. He said Mason was on the heart/lung bypass machine for 1 1/2 hours and that this was on the low end of the spectrum. I asked what we would expect to see when Mason was out and Dr. Hanley told us that he would have his chest open but covered, in somewhat of a football shaped opening and of course he would be connected to a series of ivs, chest tubes, monitors, etc. Dr. Hanley also told us the next 24-48 hours were the most critical. In addition, he commented on the fact that we grew a healthy, strong boy and that helped. We expressed our sincere thanks for all that he had done and asked that he thank his entire team for all their efforts. He gave us a wonderful smile and said he would be sure to do so. In approximately another hour we would see our sweet baby boy.

Exitement consumed us as we approched the CVICU (cardiac care unit). Mason had made the first step towards the pallative repair of his heart. We made it over to his bassinett and found him hooked up to all those drips, ivs, tubes, monitors, etc. that we had been seeing in photos of other surgeries and which Dr. Hanley told us about. I almost couldn't see any of those things, but focused solely on my beautiful little boy. I was so thankful that God took him in his hands and has given him the strength to get this far. We almost couldn't contain the joy we felt upon seeing him-no matter how many other things were connected to him. We spent most of the afternoon and evening with him and went back to Ronald McDonald for some fitful sleep. I called his nurse, Julie at 1:30 and 5:30 to ask how he was doing and both times she said he was doing well.

This morning we headed off to the hospital and thought we would be getting there in time for rounds. We were told they would be approx 9-10 am but were in fact done at 7:30. No worries, we heard that all had gone well and that the only order thus far would be to add diuretics to remove some of the fluid build up. In fact, if you look at him he doesn't have too much build up at all. Throughout the day, we sat at his bedside and took breaks for breakfast, lunch, and breast pumping! I did notice that occasionally he had a couple erradict breathes but was told that they would be sure to monitor that he was still properly sedated. They do not want him to wake up with his chest open. His nurse, Melanie, told us that they would gradually wean him off his medications once his chest was closed. We later heard from the Head RN that it looked like his chest might even get closed tomorrow, Sunday. This was so exciting! Everyone who has seen him thus far, medically, seems to think he is doing very well. Of course, the Head RN let us know that there have been times when they think everything is going great and something unexpected happens. Overall, she said he is doing picture perfect. He is receiving some blood to accomodate his somewhat low bloodpressure and will receive the diuretic to allow him to urinate later today. In the meantime, nurse Melanie told us she will be changing all the drip lines as they are removing the tubes from his naval. She will be hooking up new lines to run through the existing arterial lines. I counted approximately 8 drip lines she would be changine-but possible more.

The following is a list of medications he is being given: (nurse Melanie, kindly printed out this list along with a print out of each drug and their description/usage)

Epinepherine-helps blood pressure

Milrinon-increased bloof flow to the extremities

Dopamine-helps blood pressure

Heparin-prevents blood clots

Vecuronium-paralytic while his chest is open

Calcium Chloride-helps blood pressure and heart contractions

Morphine-pain medication

Around the clock:

Zantac-prevent acid production in the stomch

Cefazikub-antibiotic

Asprin-prevents blood clots

We will be heading back to the hospital shortly to meet the new nurse in charge of Mason's care-she will arrive at 7:00pm for change of shift. Although our strong boy has made it through his first surgery we have a long road to go. With all the support of our friends and family and most importantly, the faith we have in God, we know we can make it through.

Thank you Dear God for all you have done in our lives. We especially praise and thank you for allowing us to have Mason here with us today.

Baby Mason's Baptism

Our sweet little boy was baptized today. We had Deacon Don Sifferman perform the rite of baptism while Mason was in the NICU. His godparents are Bill & Marsie Dignam, our good friends from Silver City. Although they were not here today, we know they had us in their thoughts and prayers.

So far Mason has done extremely well and has not needed to be intubated-no tube for oxygen. We believe it might be possible that his first heart surgery (Norwood Procedure) may take place Friday. We continue to pray that God keeps him in his arms and protects him each day.

Baby Mason's Photo Album