I apologize for not posting an update this past weekend. The babies had an incredibly rough week this past week, and I had a hard time coming to terms with some of the changes that we are looking at as a result. It is very easy to post when, for the most part, the news is good, and the difficulties are minor. When the news is difficult for me to process, it is even MORE difficult to write it down and to share with a group of people. However, I take comfort in knowing that because I DO share the intricacies of my babies struggles, there are many targeted prayers being said for them. So let's begin.
Emmett was scheduled for an attempted extubation this past Wednesday. At first (meaning the first 2-3 minutes), he seemed to do ok, but he eventually began laboring harder. It didn't help the situation that he was upset about the process and crying! After several minutes of his pulse-ox reading being poor and nowhere near recovering, he had to be reintubated. Despite the fact that this was not the result we were all hoping for, there is good news. An ENT doctor was present during this process and was able to look at Emmett's trachea without tubing in the way. He determined that there was no scarring, only mild tracheo and laryngo malasia. There is nothing about his airway that would prevent him from breathing on his own. Unfortunately, their are several other factors that impact this ability. I will list the ones I know:
1.) they both have a repaired diaphragmatic hernia
2.) they both have an open wound where their abdominal wall should be.
These are the two main reasons, and as I said before, I am sure there are other reasons.
Within an hour of Emmett's extubation failure, Owen's breathing tube became displaced. His pulse-ox began dropping, he was not taking in breaths, and his heart rate became bradycardic (slowed down). The doctor bagged him and the nurses walked quickly to get the necessary tools to get him reintubated. During this process, his numbers became so low that the doctor called for the crash cart. The nurses retrieved it and prepared it, as well as an intracardiac injection. I stood just outside of the room watching all of this. Watching as my babies heart rate continued to drop. Watching as the oxygen saturation level in his blood dropped. Watching as they prepared the injection. Watching as they readied the crash cart.
We nearly lost Owen that day. Very nearly. Too nearly. But praise the Almighty God, and a huge thank you to the well trained doctor and nurses who were there that day, we did not. As a result, the doctor advised that we begin considering a tracheostomy to prevent near tragedies such as this one. The benefits of this would be that the airway would be secured, and we wouldn't have to worry about the babies extubating themselves. In addition, attempting extubation would not be nearly as traumatic, as they could be easily plugged back into the machine.
All of this was a lot to take in. From beginning the day with huge hopes of having one baby extubated, and being able to hear him cry, and coo, and fuss, and laugh to the complete opposite within a matter of hours. And then shortly after this almost losing one of my babies. I wanted to curl up with my babies and weep for them and with them. Instead, I had to head home to gather Ethan from school and Liam from our babysitter. Dave remained at the hospital talking to the doctor, nurses, and respiratory therapists. He wanted to stay close to our little ones.
Thursday morning, I arrived at the hospital mid-morning after getting Ethan to school and dropping off Liam with our babysitter. Owen was resting, so I said hi to him, and let him be. He had quite an eventful day the previous day and needed the rest! I walked over to Emmett's crib, and he was wide awake. I took off his little mitts (that sort of prevent them from grabbing and pulling on their tubes) and placed a plush rattle in his right hand. It fell out of his hand, so I picked it up again and placed it back in his hand a second time. It immediately fell out of his hand again. I looked at his hand, placed my finger in his hand and realized that his right hand and wrist was paralyzed. I asked the nurse about it, and she made her own observations and spoke to the doctor about it. They scheduled a neurology consult. I held Emmett again for the second time that day. He remained content for about 7-9 minutes, then he hated it. He cried unconsolably until I requested that he be placed back in his bed.
All of this was just too much. I gathered my belongings, mumbled to the nurses that I was leaving, and headed out the door in sobs. I didn't know where I was going to go, or what I was going to do, but I needed to get out for an hour or so and process everything. Before I left, Jenine stopped me, hugged me, listened to me, encouraged me, and walked me to the first floor. I headed in the general direction of home, and eventually made it after purchasing much needed larger sized clothing for Liam.
Currently, the babies are generally stable. Owen seems to have a small infection that is being treated with antibiotics, and he continues to sleep a lot as his little body recovers, fights infection and continues to heal. Emmett is feeling better, and even smiled and probably would have laughed if he could! It still makes me cry to think that I may never hear my babies cry again while they are infants. I may never hear them coo at me, but I am very thankful that I can see their cries, coos, and laughs in their big blue eyes.
As of yesterday, the plan is to hold off on tracheostomies for a little while longer. To place a feeding tube in both of them to attempt to feed them. And to allow them to recover and heal.
May our God give you comfort, rest, and peace.