Our life is beginning to feel like the movie Ground Hog’s Day. We are unsure what day of the week it is and sometimes even what time it is. Each morning we get up at 5:30, I pump, take a shower, get dressed, rush to make and eat breakfast, and then meet Jeff in the parking lot by 6:45 so we can get to the hospital before the nurses shift change. We receive the report from the night nurse and then meet with the day nurse. If she is a nurse that we have not met before, we tell her everything we think she should know about our precious son. He is a ladies man and will steal their hearts within the first hour. He has a horrific temper and will give her quite the show when it’s time for a diaper change or assessment. He holds his breath when he gets mad and will set off a lot of machines and makes everyone nervous. He is small but mighty and is the strongest little man we know! He loves to have his head rubbed at the top of his nose and lightly patted on his back. He is ticklish if you touch his toes too lightly and will fall asleep if you rub them just right. He loves stories at night and loves his giraffe all day long. He melts his mom and dad’s hearts and they sometimes get emotional or forceful with the nurses but it’s only because they love him and want the best for him. We go through our day watching monitors, getting updates from nurses and doctors, and staring at our greatest creation. We break for lunch and usually finish our meal before we even taste it. Then we head back up to Owen’s room and repeat. We stay for the next shift change at 7pm and if the nurse is new we make sure she knows all about Owen. Then we read to him, kiss his forehead, pray with him, and leave for the night. We pull back into the Ronald McDonald House around 10 and inhale dinner. Then it’s up to bed and we are usually asleep before our heads hit the pillows. The next day we wake up and REPEAT!
Owen had another long day today. He started the morning with some issues breathing. The respiratory therapist was worried about his lungs and put him back on full ventilator support. Due to his fluid loss there was a gap around the ventilator tube. The support that they had been giving him was not reaching his lungs. After the X-ray they determined that Owen’s right lung had collapsed. They decided to give him another day of full rest. His heart function has greatly improved from the beta blockers. He received two chest X-rays, one echocardiogram, one kidney ultrasound and one blood transfusion. For a day of rest he sure had done a lot! As with all steps of Owen’s recovery we are waiting to see when he is ready to push forward again. Until he tells us to, we are resting with him and enjoying every moment we have getting to know him. He is in the drivers seat and as the doctors say sometimes they are just there to help steer him in the right direction. He has his foot on the gas. We have so much faith in our son and the incredible medical team that is caring for him.
What a difference a day makes!! Owen has had a very restful day and the beta blockers appear to be working! He has not had any severe spikes in his heart rate and has been very peaceful most of the day. The doctors would like to see him stable without any spikes for 24 hours before they proceed with the process of extubation. He has gone up on his feeds through his feeding tube and we’re happy to report that his digestion is fully functioning! He has had very active bowels and is keeping the nurses very busy. We are very grateful that its their job to change him right now. We know we’ll be doing our fair share of diaper changes once we get home.
Owen had an incredible moment with his Daddy today. The doctors have begun to wean him from his medications and he is becoming much more alert. Around midmorning today Jeff was talking to him and he opened his eyes wide and focused right on him. Jeff held his hand and spoke to him about sports, watching football on Sundays together, playing in the park with Jaxon and all the other fun things he plans to do with him. Owen was sticking his tongue out and focusing on him the entire time. They spent 30 minutes bonding and getting lost in each others eyes. Watching them together it was as if time stopped and they were the only two people in the whole world. It was so incredible to be able to witness them making memories. I am so blessed to have him as my husband and the father of our precious miracle baby.
“When you change the way you look at things, the way you look at change.” Max Planck, Nobel Prize winning physicist
Sunday is a day of rest… unless you’re in the Cardiac Thoracic Intensive Care Unit (CTICU)! The last 24 hours have been full of incredible highs and lows. Owen is continuing the heart dance and asking us to slow down. Our small but mighty warrior is needing to rest and needing a little extra help.
The CTICU has been at near capacity and the nurses have been spread thin. Our hearts are broken that the 25 bed unit is so full. It just reminds us how many families are affected by congenital heart defects. We watch so many weary families come in in the morning and leave at night. It’s comforting to know we are not alone and devastates us that they are going through it too. The nurses and doctors are all so incredible and it makes our time here a little easier. They make sure we are active in Owen’s care and answer any and all questions that we may have.
Saturday we got the greatest gift since Owen’s birth. At 10 days old he was placed in his mother’s arms… By mother’s arms I mean, fully swaddled, on a pillow, with all tubes and wires connected to my jacket but none the less he was in my arms! It’s hard to find words to explain what the moment was like when they placed him in my arms. I was scared to death that he may be uncomfortable or that one of his lines may have issues. I didn’t want to cause him any pain. I was elated that I finally got to hold him and be his mother. I was overjoyed that I got to do something so natural as holding my baby. In the same breath I was sad that I had to wait 10 days and that my child has been through so much and had never been held. I was sad that when our son was born I did not get to see him till after his surgery. I was upset and scared that he has been fighting for 10 days and he still has a long way to go. I was overcome with so many different emotions and my head was spinning. It took 2 nurses and one respiratory therapist to place him in my arms and when they did all of those emotions swept away. I looked down at our precious miracle and my eyes swelled with tears, I saw my heart in my hands and for the first time in 10 days, we were a family! We got our first family picture, we got our tears of joy together in each others arms, and all that love between the three of us erased all the monitors, nurses, doctors, tubes, and scars.
Saturday night as we left to get some sleep, Jeff noticed Owen was having some spikes in his heart rate. The nurse dismissed it and said that it sometimes happens and it could be an electrolyte imbalance.They told us that they would keep an eye on it and not to worry. By 3:00am the arrhythmias continued and his heart rate had exceeded 260! The doctor checked him and ordered an EKG. The spikes were irregular and so short that they didn’t register on the monitors, so again they said that they would keep an eye on it. By morning rounds the spikes had become more frequent and they decided to look deeper into it. The respiratory therapist also had some concerns with Owen’s breathing. He was struggling during his morning “workout” and his PH was very low. Additionally, an X-ray showed that he has some fluid in his right lung. They decided that he needed a 24 hour rest from the breathing exercises and are hoping that the fluid will be gone by tomorrow so they can continue to push him for extubation. They did a culture on his ventilator tube and it came back negative. Infection is one of the scariest words in an intensive care unit. We are over joyed every time we hear no infection! During the morning shift change the nurse was doing her assessment and noticed that Owen’s IV in his left arm had infiltrated. He had lipids (liquid fat), Lasix (diuretic) and his pain medication flowing through the line. Unfortunately, the medications were going under his skin and they do not know how long he had not been receiving them and they had been like that. He was very alert and noticeably in pain when we got there. They had to squeeze the medication out of his arm to reduce the swelling and prevent any skin damage. He was miserable. I stood by him holding his hand and tried my hardest to soothe him. It was the hardest thing we’ve ever had to witness. It took everything in me not to pick him up (tubes and all) and run! His heart rate then began to spike more frequently. They ordered another EKG and after reviewing it they believe that Owen has Atrial Ectopic Tachycardia. They have started him on beta blockers and are hoping that this will eliminate the spikes in his heart rate. He will have to be on this medication for weeks maybe even months to keep his heart functioning properly. Lastly, we did have one win today. He has had a cvp line in his neck since his surgery. The longer a line is in the greater the risk of infection. Today they replaced the line and put in a PICC line. This line can stay in for a long time and can be used to administer medication or draw blood. It will limit the amount he has to be poked going forward.
We left the hospital around 10pm and Owen is being taken care of by one of his favorite nurses. We ask that you pray for our little warrior. We ask for prayers of rest and strength. We ask that you pray for his lungs and his precious heart. Please pray for renewed strength and energy for Jeff and I. We are two weeks in and have a long ways to go until we are all home. The days are long and we are so afraid of getting sick from exhaustion. Thank you so much for all of your messages and encouragement. We read your notes everyday and they offer us little boosts of joy.
We’d like to also thank all of those that have served and are currently fighting for our freedom. We are forever grateful for your service and sacrifice. Wishing every one a Happy and Safe Memorial Day.
Do you know the muffin man?!?! He’s getting ready for his morning “workout”! He had another great night and praying that he is ready to be extubated this weekend. Just waiting for Owen to tell us when he’s ready.
Wishing our heart family a happy and safe Memorial Weekend! We’ll be partying it ip in the CTICU!
Big spoon… Little spoon! Owen loves his giraffe sound machine. He’s having another great day! They had nothing but good things to say about him in rounds. He is still a little puffy so they are continuing to work on getting the fluid off. He and his nurse Anna had a big milestone today… He got the catheter out and then peed on her! It was the first time she’s been peed on in her 3 year career! Our favorite respiratory therapist, Aaron, is working towards getting him extubated. They call the process giving him “workouts” where they only give him pressure support for an hour and see how he does breathing on his own. He takes very little breaths and gets very tired. That is normal. He is currently in a deep sleep and getting ready for his next “work out” at 2pm. Hoping he’s extubated tomorrow so I can finally hold my baby!
Good night heart family! Owen had a great last two days with his nurses. He is quite the ladies man and all of the nurses call him their boyfriend by the end of their shift. He has released a lot of fluid but still has a generous amount to lose. The doctors are hoping to start the process of removing the breathing tube tomorrow. We have been told this can be a quick process or take several days. As with everything, Owen is in the drivers seat and we are all just along for the ride. Jeff and I fall more in love with him every second and its becoming harder and harder to return to the Ronald McDonald House at the end of the day.
CHLA offers a great program called Literally Healing. Everyday they give us a new book for Owen’s library. It has become a routine of ours to read to him every night and then give him kisses. We are so grateful for the program to have new books to read as I am sure Owen is happy he does not have to hear “Guess how much I love you” one more time.