It was one year ago today that our 6 pound baby boy had his tracheostomy. We had spent nearly 4 months in the hospital by this time. We were terrified. There is no denying that. The idea of bringing home a preemie was something I knew (by now) I could handle. But a preemie with a tracheostomy? That scared me to my core. To properly tell this story I need to go back a month or so. It was just after Christmas in 2007 and Christian was 2 months old. After several failed attempts at extubation (removing the ventilator tube) the Doctors at OHSU came to us and told us that it was looking more and more likely that Christian was going to need a tracheostomy. He was a healthy baby with no underlying problems which was remarkable since he was a 26 weeker. They could not pin point an exact reason as to why he suffered from subglottal stenosis (narrowing in his upper airway). They attributed it to the fact that because Christian was born so early and his needing to be on the ventilator to breathe for such an amount of time, that the tube ventilator tube that went down his airway actually caused severe swelling. The Doctors told us that their hope was that the tracheostomy would be a temporary thing and that as Christian grew so would his airway and he would be able to have it taken out.
This news hit Jason and I like a ton of bricks. Just the idea of our baby having to go through all that was heartbreaking. We did not know all the details about what this actually meant. We had a ton of what if's? going through our mind. Jason and I talked a lot about what the doctors had said. We came to the conclusion that we wanted to wait and allow Christian to "grow" another month and then see if he could handle extubation. In our hearts it just felt right to give Christian a chance at being able to do it on his own. After all, he was only just about 4 pounds at this time. Was it a selfish decision? Some may think so and I don't know. All I know is that nothing felt more "right" at the time than making the decision to give Christian another month. I can't allow myself to go back now, in hinds sight, and second-guess the decisions that were made during that time. To us it was the right decision at that time. 
The Doctors respected our wishes and allowed Christian one month to grow and see if he could handle extubation. A few weeks passed at it was time for extubation. Christian was put on CPAP and it looked very promising. He was relaxed and breathing at a normal rate. That lasted for about 13 hours and then he needed increased oxygen. They had him on what is called heli-ox (no idea how it is spelled) but it is a combination of helium and oxygen. I guess the helium kind of thins the oxygen, therefore making it easier to breathe. This made Christian squeak like a mouse with each breath. Christian had been started on steroids to help reduce swelling in his airway. The steroids made him so irritable. He was very uncomfortable. I spent my days at his side just trying to comfort him and keep him calm. He was given medication for anxiety. He was struggling and it was extremely difficult to watch. I could see that it took his entire, tiny body to muster the strength to get air into his lungs. He lasted only a couple days off the ventilator and then needed to be put back on. He was not able to get enough air breathing on his own, and he started to lose weight because he was using so much energy just trying to breathe, trying to survive. What a little spit fire. He would have never given up trying. He had the determination. His body did not have the means. He would have kept trying until his body could no longer take it. We knew this and so did his doctors.
The day that the doctors told me that Christian was going to definitely need the tracheostomy I was sitting next to his bed. I was holding him in my arms and rocking him. I was staring into his eyes. Christian's eyes have always been a source of comfort to me. I could not even look at the doctors as they relayed the news. I could only look into Christian's eyes. And as I cried, uncontrollably, it was his eyes that were saying "I'll be OK, mama." He was strong, I was not. I remember his sweet nurse putting curtains up around me so I could have some privacy. I remember really appreciating that at the time. They were always so good to me, treating me like a mother who they knew loved her baby with all her heart and soul. I know they all loved him too.
After some time I placed Christian carefully back in his isolette, always careful of all the tubes and wires that he was connected to. He was sleeping soundly and so I went down to the lobby and found a soft chair that faced the window. I sat there and cried again, oblivious to many people around me. Jason was working so I called my dad knowing that he would answer. I could barely speak as I told him that Christian was going to need the trach. My dad assured me that it was the best thing for him and that I would be able to take my baby home soon. Just hearing his loving voice gave me strength that all would be fine. Thank you, dad, for being you and loving me (us) so very much. I called a few others and told them the news.
By the time I was done making phone calls I was all cried out. I stared out the window and begged God to give me a sign that everything was going to be alright. I felt so scared. Just as scared as when they life-flighted me. And then it came. The peace in my heart that only God can give. I sat there and just breathed. I was becoming calm. I was back in control and thinking positive thoughts. I just knew that Christian would be fine and that we would be too. I knew that if anyone could do this, I could, because I am his mom.
Christian's surgery was scheduled about a week later. I was given all kinds of literature about the tracheostomy. The nurses started my training immediately by bringing out posey collars, trach tubes, the doll with the trach, artificial noses....etc. Jason and I took the parenting CPR class for a second time because now we had to learn how to perform CPR on a baby with a trach using a bag. We learned suction and how to keep everything sterile. It was overwhelming but I was determined to be able to take care of Christian. There were still many unknowns that would only be answered once Christian had the trach in place. We did not know if Christian would require the use of a ventilator once we went home. We did not know if we were going to have to have a live-in nurse. We just did not know.
This was us loving on our boy before surgery.
The surgery date came and I had scheduled myself for an early hair appointment that morning. It sounds strange to say but this helped me to relax. We were in good spirits. Excited that Christian would finally be able to breathe without struggling. Excited that it was only a matter of weeks before we take him home. We spent the time before his surgery talking to him and rubbing his forehead. He loved to have his head rubbed. We were able to walk with the team who wheeled him down to surgery. We waited in the waiting room until Dr. Milczek came out and told us the surgery was a success. He also told us that when he was able to take a look at Christian's airway it was as narrow as a coffee stirring stick and that there was no way he was able to get enough air into his lungs by breathing normally. He told us it would be about 45 minutes until he would be back in the NICU for his recovery..JPG)
This is Christian just after he had his trach placed. This is the first time we saw his face without tubes and tape on his face (just the feeding tube).Once Christian was back in the NICU he slept for most of the day. He was still hooked up to the ventilator with his trach because he needed to be able to adjust to it as well as get enough oxygen into his lungs. He was such a little trooper. We decided to go home for the evening since all was well and he was resting.
The next day was fantastic. Christian was awake, alert, and smiling. Most of all he was able to breathe. I had never seen him so relaxed. It was a joyous day. Jason and I left the NICU that day with happy hearts. We had no idea that the next 12 hours would be the hours that we would come closest to losing our son.
On the morning of the 24th I received a call from Norma, one of the nurses that knew me and Jason. This was not normal for them to call. I was the one who always called in to see how the night went. She said to me "Crystal, I am going to put the doctor on the phone." My heart stopped beating. A doctor gets on the phone and tells me that during the night Christian started d-sating (o2 dropped) and the night nurse thought it was because of pain and kept increasing his pain meds. He still kept having the problem.I am not sure about time frames of the events that took place from the time she came on shift till the time I received the phone call. Let me go back and say that when a tracheostomy is performed it is imperative that the trach stay in place so that the stoma (hole) can heal open. For this reason the trach is tied as tight as possible, without choking, around Christian's neck. It takes at least 5 days for this healing process. There is no way that Christian would be able to tamper with it in any manner and have it come out. The nurse who took care of Christian that night had never been his nurse before. We had never met her.
So the doctor gets on the phone and tells me that Christian has been through some trauma early that morning. They don't exactly know what happened but somehow his trach became dislodged. There was a period of time that he went without oxygen although the exact length of time is unknown. The nurse did take him out of his bed to weigh him and she does not know if that is when the trach was dislodged or not. The trach is still dislodged and there has been a doctor giving him manual breaths with a bag. He told me that Christian will need to go back into the OR to have the trach placed again. I could not believe my ears. There were so many questions. I told the doctor we were on our way and that it was about a 30-40 min. drive depending on traffic. We got dressed and headed to the hospital. Jason's aunt Shela came with us.
When we arrived at the NICU we were greeted with sad eyes. The receptionist, the nurses, some I could tell had been crying. They were all our family while we were there. They cared about us and their concern was evident by their faces. There was a whole team of doctors and nurses around Christian's bed. He was turned sideways in his bed and a med student of was giving him manual breaths with a bag. He was alert and saw me when I arrived by his side to comfort him. The nurse that was on duty when all this happened was at my side, crying, telling me her side of the story and I could not even look at her. Only into my son's eyes. They told me once again that he was okay but this time I felt so unsure. He was extremely swollen and the doctors told me that his swelling had gone down about 50% which really frightened me. Apparently in the rush to get him oxygen he was given too much and the oxygen had nowhere to escape so it was inside his skin. I remember touching his forehead and feeling little air pockets pop. It was then that I also learned that they had to perform CPR on him. My 6 pound baby had to have chest compressions. I could hardly bare it. That is when it really hit me. He almost died.
Dr. Milczek was called in (it was Sunday so he was not working) and I could tell that the events were upsetting to him. He was not happy. If there is one thing I have learned about Dr. Milczek, it is that he is the best of the best and he demands the best from everyone that works with him. He examined Christian and spoke with his med student. I remember him speaking quite firmly. Then he followed us to a private room and told us that Christian would be going back in for surgery right away to have the trach put back in place. I asked him if there was any way that Christian could have dislodged the trach himself. He said NO.
Of course you can imagine the legalities and liabilities of the hospital had come into question. There was a hospital representative there when we arrived (to smooth things over) so to speak. We were extremely upset that no one could tell us why/how this happened. We were upset that the nurse chose to lift Christian from his bed just to get a weight. It was unnecessary. There were so many emotions but the number one concern was getting Christian back into surgery so that he could start breathing on their own. We were told that the amount of time that Christian went without oxygen was unknown and there was no way to tell if he had suffered any permanent brain damage. This was by far the worst day in the NICU that we had experienced since Christian was born.
Christian went back in for surgery and people kept coming to us to "make sure that all our questions were answered". I really think they were scared of a lawsuit. We were only thinking about getting our son well and getting him home. We were told that because of the events that took place, the hospital was changing protocol for babies who go into surgery. They are to be returned from surgery in a bed that has a scale in it so that they do not have to be moved to be weighed.
Christian tolerated his surgery well. Dr. Milczek told us that when he went in to place the trach he actually removed a few blood clots that had formed around the stoma. We took that as a sign that there was a reason all this happened. It was a good thing that they removed the blood clots. Just trying to find some positiveness, you know? He again slept most the day. I stayed by his side as long as I could. I was more exhausted than ever. I left him sleeping comfortably and in the care of a familiar nurse. The doctors assured me that he would be very closely watched.
A few days later, Christian started having similar symptoms that the nurse had reported on the morning his trach was dislodged. He started de-sating and his heart rate was increasing. This time I was there, he was in the care of his regular nurse, Cynthia, and the doctors that I am familiar with were right by him. They initially thought he needed pain control but that did not work. So they suctioned Christian.....still nothing. Then they suctioned deeper and what they got up was a fairly large blood clot. Suctioning was repeated and each time a blood clot was produced. It clicked in my head that this is probably what happened on the day his trach was dislodged. He had a blood clot, the nurse kept treating him for pain. He continued to de-sat until he was getting no air at all. I imagine that in the rush of the respiratory team to get Christian so he was getting air, his trach somehow became dislodged. I don't know if this is fact but this is what scenario came into my heart. I really believe that God wanted me to be there, at that very moment, witnessing the events taking place. He wanted me to have some understanding of what probably happened. Honestly, I felt better after that.
Christian recovered from his trauma and eventually I could touch his forehead without feeling air pockets popping. He was able to be taken off the ventilator and breathe completely on his own. He started gaining weight. He ate from a bottle with no problem whatsoever. We were told that it is not rare for people to have swallowing problems with tracheostomies. Makes sense. We were trained, hands on, how to care for Christian. I was determined to know all that I needed to know and be comfortable and confident in my ability to take care of him. I was trained well.
This experience taught me that we can never take any day for granted. We had left Christian on the happiest day, only to awake to our worst nightmare. We never know what the future holds.
This is Christian on February 25th, 2008. It was the day after he has his 2nd tracheostomy surgery. He is holding his daddy's hand.
**This post is not intended to dis-credit OHSU hospital or its staff in any way. We have nothing but the upmost respect and grattitude for the men and women who cared for Christian. We always felt that we were in the absolute best care there was to offer. They were our family for 4 and half months. It is only a re-cap of events as well as I can remember them.
4. Christian's Bedroom because it is exactly what I had 
5. These pink 
