Baby Z: Step Down Unit April 22, 2014
November 24, 2013: We moved to our new room on the 7th floor, Room 7303. We were so happy that Baby Z was getting better and we were hoping to go home soon. We now had some privacy because this room had a door vs just a curtain like before. We unpacked our things and met all the new nursing staff. The goal of the Step Down Unit is to teach you how to take care of your “special needs” baby while at home. The nurses there had many patients, 7-1, so they were there just in case you needed them. They would come in every few hours and take his vitals and asked if we needed anything but we were in charge of diapers and feedings. We were super nervous about taking care of this little guy. This was our first baby thus we were still learning how to do the normal baby things and on top of that, how to care for a heart baby. We had to weigh each diaper and record the weights on a dry ease board along with how much he was eating each feeding. We loved being able to do the normal parenting stuff. The sleep schedule: Daddy stayed up until 3:00 am with Baby Z then Mommy’s shift would start while Daddy got some sleep. We both ended up with about 3 hours of sleep a night. The first night Baby Z was sleeping so Dad thought he would sneak in a quick relaxing shower, wrong. I was awoken by the sounds of alarms going off and a room full of doctors and nurses. I was so sleep deprived I honestly could not comprehend something was wrong at first. Dad came out of the bathroom and had no clue what was going on either. A nurse came over to us an explain that Baby Z was having what called tachycardia. His heart rate was in the 250’s and if it did not stop they could give him a medication that may help but they wanted to wait to to see if it would go down on its own. After ten minutes, which felt like 5 hours, he was able to get down to normal range. I was so relived but the relief was short lived because once all the doctors and nurses left his room they had to come rushing back because it had started again. Alarms were screaming, his heart rate very high, and little Baby Z just sat there staring at us like he had no clue what was going on. He was able to fix it every time and did not need to medication. We had about 10 episodes that night. Super scary night for Mom and Dad. November 25 2013: The doctors say tachycardia can be common after surgery. They started a drip of magnesium, his blood work showed it was low, and the cardiologist are put him on a medication for rhythm issues . Unfortunately, all this meant that we would be staying a few extra nights. He still had his chest tube in and so he was on Tylenol because they can be painful. That day, they started to wean him off the Oxygen and he seemed to be doing well with that. The new heart medicine was horrible. He hates it. One of the nurses said that some of the bigger kids says it can make their mouth numb. It took us forever to get it down him. Then once he had taken the medicine, he screamed for hours. It was a 2 hour ordeal and we had to give it every 8 hours. I was sleeping and Dad was on duty when I was awoken by the familiar loud dinging. The room filled up with doctors and nurses again. There was a new doctor on night shift and he wanted to try somethings that may help him come out of tachycardia faster. They put ice on his face. He was not happy about this. He screamed and it did not seem to be helping. After a few minutes they put in a rectal thermometer. They were trying to get him to bear down, not working. He was able to come out of it on his own after a few minutes. Just like the night before the alarms continued to go on and off all night. He had 5 episodes that night. November 26, 2013: Today was our hearing test just one more thing to check off our list before going home and thankfully he passed with flying colors. The day consisted of the normal: EKG’s at 4:00 am, Chest X-ray at 5:00 am, Meet new doctor at 6:00 am, Meet new nurses at 7:00 am, wait for the doctors to make rounds all morning to see what the plan for the day would be. Not much changed this day. I dreaded to see the sun set because when night fall came I did not what it would bring. I may or may not be awoken by alarms going off and my sweet little baby’s heart racing. I would sit and watch the monitors all day and all night long. It would drive me crazy just wondering if it would alarm. When Baby Z would move about it would make the sensors misread and it would ding. You never knew if it was a misread or a real issue until you ran and looked at the monitor. I was driving myself nuts. Dad had finished his shift for the night and now it was my turn. It was 4:30 am and I had just got finished feeding him and was rocking him to sleep in the rocking chair. It started, the alarms were going off. My stomach fell to the floor, not again. Dad awoke, in came the staff and they swept him out of my arms onto the hospital bed. I felt so helpless. After 6 minutes they decided to try the ice and try to get him to bear down, did not work. As always, he came right out of it on his own and acted like nothing happened. Unlike the previous nights this was the only time the doctors came in the room, no more attacks all night November 27, 2013: After the normal day of EKG, X-rays, etc the head doctor made his rounds. He was not happy that the new doctor placed the ice on his face that early. He said his orders were to only do this after 15 minutes of SVT. He told us to not let them do it if they try. We called him Dr. House. He got the job done and he wasn’t worried about hurting someones feelings. The plan for the day was to change his heat medicine to another in hopes it worked better for him and that he would like the new one better. Chest tubes came out this day and so did the Oxygen! I was so happy we were making some progress in the right direction. Night came and we were able to sleep because we had a normal heart rate all night! I was so relieved. November 28, 2013: Happy Thanksgiving! I was so thankful for everything! Many people felt bad that we spent the holiday in the hospital. We were just thankful that we had our sweet little family all together. Today we got our first bath! It was not a tube bath just a sponge but still it was relaxing for him and he passed out afterwards. Mom and Dad had to take a CPR classes and we had no SVT all night! This would make 2 nights in a row and if we go SVT free tonight we get to go home! November 29, 2013: Things were finally winding down and we were checking things off the list before we could go home. We still needed to do the car seat test. This is were they sit the baby in their car seat and they have to stay in there as long as your ride home would be. The nurses watch their vitals to make sure they stay within normal limits. Since we lived 3 hours away, they decided to just do 1.5 hours because we would stop half way and get him out. I have no clue why but I was so nervous about this silly test. We put him in the seat and started the clock. It was not 3 minutes later the nurse comes in says “why are you felling.” His O2 stats were in the 70’s, not good, We made some adjustments to the seat, the newborn headrest was removed and we put in a booster pad, and that seemed to help. After 1.5 hours he passed! I was so happy and finally could quit stressing over it. If he did fell he would just have to have a bed like car seat that he lays flat in. Not the end of the world but something I did not want to have. We did not have SVT again so we get to go home tomorrow! November 30, 2013: Going home today and now the real adventure begins!
Baby Z: Post Surgery PCCU February 26, 2014
Day 4 (November 21, 2013)
The hard part was over, now what. Baby Z had gone through open heart surgery and survived. Now we wait. Wait to heal and wait to hear if we would be home for Thanksgiving, wait on everything. We got a sleep room our first night in the PCCU, pediatric cardiac critical care unit. These are slim pickin’ and hard to get but we were so thankful for one. It had a queen size bed with a foam mattress and not much else. You had to check in at 9:00 pm and be out by 10:00 am. That room was meant for sleeping only and that is what we did. We awoke at 6:00 am and Mr. Z ran down the hall to check on Baby Z. He wanted to get there before to nurse change to get an update on how he did in the night and to also meet the day nurse.
Baby Z was still much sedated and did not move or open his eyes until late that night. He was still on all the medicines but he was very swollen due to all the fluids he received to increase his blood pressure from the night before. They added Lasix to get some of the fluid out of his little body but he still was not peeing enough, so they upped it more. This seemed to help and we were producing lots of urine by the afternoon. The scariest part as this time was the ventilator. I hated watching a machine breath for my baby. The night nurse advised me that they were going to start trying to wean him off of the vent and run some tests during the night. They would take him off for an hour and back on for 3 hours and continue until they thought he was able to come completely off. They draw blood at these times to see how our blood gases were doing and if he passed 3 blood draws he could come off. I was super excited to hear this news. By the time we went to bed we got the news he had passes his first test.
Day 5 (November 22, 2013)
Thankfully we were once again able to get a sleep room for the night. We awoke at 6:00 am and rushed down the hall to the PCCU. We walk into his room and see our baby with no breathing tube. He was extubated right before we arrived, we missed it 😦 He now had a nasal cannula that was giving him small amounts of oxygen.
We had big changes this day. They decided today they would let him try to eat for the first time ever. He had a speech therapist come to evaluate him and she thought he would be able to give it a try. We started with 5 mls of breast milk and he loved it! They also removed some of his IV medicines. It was such a nice feeling to start seeing things less stuff on him. That night we did not get a sleep room. We stayed in his room which had a fold out bed big enough for one person to sleep and a rocking chair. He did get one of the newer rooms that had its own private bathroom, that was nice plus. It was not comfortable by any means but we both were able to snuggle tightly on that bed and slept okay during the night.
I loved seeing less of theses. We are down to only 2 rows! There were 4.
Day 6 (November 23, 2013)
Not much happened this day. Mostly just waiting to see how he did without most of his IV medicines. They were able to stop all the medicines, even his heart meds, and waited to see how he would do. They also removed his Art line (a thin catheter inserted into an artery) this had to be done while a heart surgeon was on duty in case some happened since this line ran straight to his heart. He was now on oral calcium, Pepcid, and Lasix and doing great! They were happy with his urine output and was able to get his urinary catheter removed and got to wear a diaper.
We once again slept in his room with him but we liked it much better because we did not worry as much as before when we were in the sleep rooms. It was not comfortable but we did not care. He had a flat screen TV and Mr Z, being an engineer, rigged it so we could control it via cellphone, so we had some entertainment. We still had our family coming and going the whole time so there was not time to get bored. Once everyone left, visiting hours were 9:00 -9:00, we relaxed and tried to sleep. Nurses came and went all night long but they really tried not to disturb you. We LOVED the nurses in the PCCU!
This is his room in the PCCU
This is the view from the back were we stayed.
Day 7 (November 24, 2013)
Big day today! We were moving up to the 7th floor and mommy finally got to hold Baby Z for the first time since his surgery! What a relief! Baby Z would be moving to his own room. There we were excepted to do most of his care,unlike the PCCU, there was 1 nurse to 4 babies on the 7th floor. In the PCCU he had his own nurse, just for him. They rolled his big boy crib in the room were getting ready for the big move. We were so happy. Everything was happening so fast. The doctors did their rounds, they released him, we packed all our stuff, held Baby Z, the nurse packed Baby Z things and off we went. We were in his room before lunch time.
Baby Z, Surgery Story February 5, 2014
I didn’t sleep well the first night in the hospital without my baby. I just felt wrong. He was sleeping in his NICU with his nursing staff at his side while his Mom and Dad were in another hospital. I was now moved in the postpartum ward at Vanderbilt, exhausted and waiting to get discharged but that would not happen for another full day. As soon as we were able to go visit him, we did. My nurses were not very happy with me because I was never in my room; I had more important places to be. Day 2 was spent in the NICU. In the NICU there were many rules to follow. Only 2 people in the room at a time, must wash hands before entering, you had to be buzzed in, and if you weren’t mom or dad you had to be “the list” to go back. The whole day was spent letting people in and out to visit and anxiously waiting to hear from the surgeon hoping we wouldn’t miss him. We had no time when he would be by to talk with us just sometime in the afternoon.
At this point we still did not know what we were facing surgery wise. We didn’t know if he was going to be able to use his full heart with some alternations or were we heading down the half a heart, 3 open heart surgeries route. It was late in the evening when his surgeon stopped by his room to talk. They let more than allowed amount of people in the room for this conversion. I apprehensively sat next to my husband awaiting my newborns fate. He said surgery was going to be early the next morning and his plan was to repair his narrowed aortic arch and patch the hole in his heart. Once inside, he was going to have to measure the left side of the heart to see if it would be adequate in size to work. If not then we would have to have the first of a 3 part surgery series, the Norwood.
The unknown was killing us. We did not know what to say to each other let alone to our family and friends who were waiting in the hospital day and night with us. How do you act when you don’t even know if your baby was going to live or die? Exhausted, we both crawled into my small hospital bed and we tried to sleep as much as we could.
End of day 2
We had to be in his room by 6:00 am the next morning but we arrived earlier to spend some time with him. I was trying to stay strong but I could not take it any longer. I broke down once I knew it was really going to happen. I sat there rocking my sweet boy in my arms not knowing if I would ever be able to hold him again. My 2 day old son was about to have open heart surgery and there was nothing I could do about it. They said it was time to go to per-operation area and they rolled his warming unit onto the elevator and up into his little waiting area. There was no one around us, just husband and I alone with our little man. We once again tried to stay strong for him but once the nurses and doctors said they were ready for him and rolled him back, we both lost it. We stayed in the back until we could get a grip on our emotions. After about ten minutes, we headed into the surgery waiting room were our family was waiting. They all hugged us but we were emotionless by this time. I still had to go back to Vanderbilt to get discharged, anything to keep me busy. It took about 2 hours to pack everything up, shower and get my final checkup. We patiently waited by the cellphone for the surgeon’s nurse to call. She would call us every hour or so with an update and let us know how he was doing. The conversation was very short but at least we knew how surgery was going. We got a call stating that he was about to be out of surgery and to head to the surgery waiting room. I was not sure what to think. The surgery was supposed to take a lot longer than 3 hours. Did something go wrong, was he not able to fix it, did he code? I was a mess. We still were not out of postpartum ward but yet again I waved to my nurse and ran out the door.
Waiting to go back for surgery
We had a nurse at the Children’s Hospital nurse take us the long way to around were we would hear the news alone from the surgeon before having to tell our family what was going on. As soon as we sat down in the crowed waiting room, out came the surgeon in light blue scrubs. Very calmly, he said he was able to repair the aortic arch and patch the hole. The big news was he said that the left side of the heart measured adequate! We could have fainted. Our baby was going to have a whole heart! He said he would be in recovery then moved to the PICU within a few hours. We calmly, holding hands, walked to the elevators and looked at each other and lost our emotions once again but this time they were tears of happiness. We had been through so much together the past 9 months and finally we had an answer. We walked into the NICU waiting room just crying. Our family did not know what to think, good or bad? I was finally able to get it out what the surgeon had told us and hugged everyone. To celebrate we went downstairs and had lunch and ice cream. We finally were able to go back to postpartum and finally get discharged.
We waited at the PICU until they said we could go back and see him. We prepared ourselves for the worse. I knew he would be sedated and be hooked up to many machines and IV’s. They said he may even be hooked up to ECMO. This is a heart and lung bypass machine. We walk into his room; there he was, our sweet little baby boy. He looked so good! His nurse, Anna, was telling us about everything that was hooked up to him and why. She was working on him and we were just getting settled in then it happened, he coded. His blood pressure hit rock bottom, stat button was pressed and we were moved to the back of the room. The room filled with doctors and nurses and then in ran his surgeon. He asked the nurse what she did. He said he was too stable for this to happen. The nurse came to the back of the room to tell us what was going on. She stated that he was very dry. Once they started giving him lots of fluids and his blood pressure started coming back up. The alarms stated to silence and he was finally stable once again. She told us he would be very swollen the next day due to the fluid but in a day or two it would go back down. This was such a scary moment that we will never forget.
I have never posted this picture before but now I feel okay doing it. See that little thing laying on the PCCU bed, that is Baby Z. He is hooked up to a lot of stuff 😦
These pictures are scary to look at even now.
About 8:00 pm, our family was able to come back and see him, 3 at a time. Everyone was happy the way he looked. 9:00pm came and visiting hours were over. It had been a long day and we were able to get a sleep room for the night. We gave our little man a kiss and went to bed. We slept very well that night. I do not know if this was due to exhaustion or relief. Whichever it was, it felt great.
That was the end of day 3