{"id":419,"date":"2023-12-15T14:52:13","date_gmt":"2023-12-15T14:52:13","guid":{"rendered":"https:\/\/narratingteddysremarkablelife.com\/?p=419"},"modified":"2023-12-15T14:52:15","modified_gmt":"2023-12-15T14:52:15","slug":"chapter-15-the-longest-16-hours-of-our-lives","status":"publish","type":"post","link":"https:\/\/narratingteddysremarkablelife.com\/index.php\/2023\/12\/15\/chapter-15-the-longest-16-hours-of-our-lives\/","title":{"rendered":"Chapter 15: The Longest 16 Hours of Our Lives"},"content":{"rendered":"\n

We woke up on the day of surgery with excitement and fear.\u00a0 We were so excited to finally be at Teddy\u2019s repair surgery but were also worried about how Teddy would handle the massive surgery and also about what the following weeks would bring.\u00a0 Teddy also seemed to be excited about the future.\u00a0 He was all smiles and cuteness, which made knowing we wouldn\u2019t see those smiles for a few weeks even harder.\u00a0 We spent the hours before the surgery playing with him, holding him, and loving on him as much as we possibly could. Unless you have been through it, it is hard to describe how you feel in those hours before sending your tiny baby into a massive surgery with loads of risks, but also significant rewards once done.\u00a0 I tried so hard not to think about it, but the fear of losing Teddy on the operating table made me physically ill, but at the same time I knew it was something that HAD to happen at some point and ultimately would give him a better quality of life. I just stared at his sweet face all morning and constantly repeated how much I loved him and how proud we were of him.\u00a0<\/p>\n\n\n\n

It was finally time to head to pre-op and they wheeled Teddy down, while Jason and I followed along.\u00a0 We got into the pre-op waiting room and began the long process of all the doctors, anesthesiologists, nurses, etc. coming by the bay to explain what would happen, the risks, and to have us sign the waiver forms. They told us to expect it to be a longer surgery, at least 6+ hours. They were all so amazingly nice and comforting, but I was glad when the steady stream of people slowed down so we could focus on Teddy.\u00a0 My anxiety was through the roof, but I tried to stay upbeat, singing to Teddy, playing with him, and loving on him.\u00a0 Jason did the same, but anyone looking at us could tell exactly what was going on inside. When the time came to take him back to surgery, they did let me go back with him to be there when he fell asleep.\u00a0 Jason gave as many kisses as he could and then they wheeled us back to the prep room and got us set up to start Teddy\u2019s anesthesia.\u00a0 They prepped me as to what would happen and told me to expect him to shake a little while he fell asleep.\u00a0 I was able to hold him, while they put the mask on and I sang to him \u201cWheels on the Bus,\u201d which was his favorite song at the time, as he fell asleep.\u00a0 He looked a little unsure of what was going on, but we kept eye contact, and I sang to him \u201cThe mama on the bus says I love you; I love you; I love you\u201d as his eyes closed.\u00a0 They had me lay him on the table and give him a kiss.\u00a0 With tears, I told him he was not allowed to do \u201cany funny business\u201d and that I loved him and was so proud of him.\u00a0 I still say and do the exact same thing before any surgery.\u00a0 Then they lead me out of the room and into the surgery waiting room.\u00a0<\/p>\n\n\n\n

Jason and I checked in at the waiting room desk and gave them our phone numbers.  They told us that someone would call us every hour and half to give us an update on how the surgery was going and told us where we could sit, etc. The Boston surgery waiting room is different from any other hospital we have been in.  While there are two rooms with the typical lined up uncomfortable chairs, there is a long hallway area, lined with huge windows, that had more comfortable chairs situated in \u201cfamily\u201d set up.  Since it was still fairly early in the morning, we were able to get one of these areas by the windows and get settled in for what we knew would be a long day.  My mom had come into town a few days earlier to be there for the surgery, so she joined us at some point that morning and we all sat there basically staring at each other full of anxiety and worry.<\/p>\n\n\n\n

While I am not an extremely superstitious person in general, I do find myself around Teddy\u2019s surgeries ensuring we repeat the same things we did in successful surgeries, for all future surgeries.\u00a0 I have no idea why, but it brings me comfort and I feel like if it worked the first time, then why mess up a good thing?\u00a0 What I can say from that day is that I COULD NOT bring myself to leave my seat. Every time they would ask me if I wanted to take a break, I could not do it. I would get sick to my stomach thinking about it.\u00a0 All I could think was if I walked away, what if something happened and I wasn\u2019t there?\u00a0 Or what if I missed the update or them calling to say he was done?\u00a0 To this day I cannot leave the waiting room when he is in surgery.\u00a0 So thankfully Jason and my mom had the strength to ensure we were fed and taken care of.\u00a0 Jason went down to Au Bon Pain in the hospital and got us breakfast (and yes, for every future surgery there, Jason would go and get me the exact same breakfast).\u00a0 My mom went and got us lunch at some point. I stayed sitting in my chair binge watching the new Gilmore Girls seasons series or was up pacing back and forth down the hallway.\u00a0 My phone never left my hand the entire time and anytime our update call was a little late, I started to panic.\u00a0<\/p>\n\n\n\n

I honestly do not remember what time his surgery started, but I do remember that the first update phone call was the nurse letting us know that they were running a little behind because they had struggled to get Teddy hooked up to the IVs he needed. We knew Teddy was a hard stick for IVs when he was first born, but we would soon learn that his veins had not improved and for the next several years, Teddy would struggle with getting IV access.\u00a0 The nurse said they finally did manage to find a few good veins and the surgery had started.\u00a0 The next several updates consisted of things like \u201cDr Jennings is working on the airway or the esophagus\u201d and \u201cTeddy is doing well.\u201d\u00a0 At some point, one of the residents came out and let us know that they were not able to do a traditional repair, so they were working on doing the Foker procedure.\u00a0 They assured us Teddy was doing well.\u00a0 Six hours passed and we were still waiting. Then eight hours passed, and we were still waiting.\u00a0 I believe around the 10-hour mark, Dr Jennings came out and gave us an update.\u00a0 He explained that one of the residents was working on Teddy at the moment, because Dr Jennings needed a little break.\u00a0 He explained that things were taking a little longer than expected due to Teddy\u2019s anatomy and because his airway was worse than anyone had expected.\u00a0 He told us he would be back to update us further later.\u00a0<\/p>\n\n\n\n

We waited and waited and waited and I grew more and more and more anxious.\u00a0 I was physically unable to sit still and felt extremely sick.\u00a0 Day turned to night, and we waited.\u00a0 Then we finally got the call they were wrapping up.\u00a0 At this point it had been about 15 hours and we were basically the last people in the waiting room.\u00a0 Dr. Jennings came out and explained the surgery and let us know Teddy was being closed up and would be heading to the NICU.\u00a0 He threw a lot of information at us, but the gist of it was that his gap was a little too long to be able to do a traditional repair, so they did complete a Foker.\u00a0 Due to Teddy\u2019s unique physical anatomy, smaller ribcage and missing lung on the right side, as well as where a few other organs were due to these anomalies, they struggled to get everything lined up correctly and ended up having to remove Teddy\u2019s Thymus gland because it had grown into the only open space they could use.\u00a0 The Thymus gland is the gland that produces T-cells that are essential to the development of the immune system.\u00a0 He said he was able to leave a small piece that he hoped would be enough for immune support, but also said that people are born without it sometimes and it would just be something we needed to keep an eye on.\u00a0 They were finally able to complete the Foker, which consisted of small thread line lines being attached to both the top and lower pouches of the esophagus. Then those threads were pulled through his back where the surgeons would have access to them.\u00a0 Each day those threads would be tightened slightly to stimulate growth of the two pouches, so they could eventually meet and be reconnected.\u00a0 It is a fascinating procedure, that I will do a more in-depth post on later.\u00a0<\/p>\n\n\n\n

He then told us that the main issue they faced was that Teddy\u2019s airway was much worse than anyone expected, and he was floored that Teddy was able to maintain his oxygen levels on room air.\u00a0 He told us his airway was one of the worst he had ever seen (although I do think Dr Jennings is famous for that line.)\u00a0 Essentially, Teddy had severe tracheomalacia, which meant his airway was very floppy and closed down on itself.\u00a0 Teddy ended up needing three tracheopexies, which means they take part of the airway or blood vessels pushing on the airway and attach it to the spine or breastbone to help keep the airway open. We had not been prepared for this part of the surgery, but we were thankful Dr Jennings found these issues and corrected them. He said overall Teddy did great and handled it all extremely well. He let us know once he was closed up and in the NICU, we would be able to see him. He did prepare us that he would be a little swollen and due to the Foker that he would have a breathing tube, be paralyzed, and sedated for the next few weeks.\u00a0 All told, Teddy\u2019s surgery from the time he fell asleep to when they closed him up was about 16 hours.\u00a0<\/p>\n\n\n\n

Jason and I rushed up to the NICU waiting room and paced the floor until they let us in.\u00a0 By this point it was after midnight and the additional wait at the NICU door was killing us. After an hour of waiting, they finally let us back.\u00a0 I can remember as clear as day walking into the huge NICU, turning left, and following the nurse to the back corner of the NICU. I remember walking down the aisle and seeing Teddy for the first time, which took my breath away.\u00a0 While they had warned us, he would look different, I don\u2019t think I could have ever pictured in my head what we were about to experience. That morning we had our tiny beautiful little baby, who was all smiles and coos, and now our beautiful boy was covered in wires and tubes, swollen to at least twice his size, if not more, and not moving fast asleep. He had an IV in his head and arms and a central line.\u00a0 He had a chest tube and a breathing tube.\u00a0 He had the thoracotomy incision and Foker threads. He was covered in monitors and so many other things. He was stable though and had handled the surgery well.\u00a0 We both did our best to keep it together and jumped right in to help the nurses with anything they would let us do.\u00a0 The NICU nurses immediately fell in love with him and by the first hour there, he had already had a nurse sign up to be his primary nurse and she would ultimately become one of our saving graces during our time in the NICU.\u00a0\u00a0<\/p>\n\n\n\n

That day had been one of the longest we had experienced, and we tried to prepare ourselves for the coming weeks and future surgeries. There was no way to prepare for the future rollercoaster we would all be on though\u2026<\/p>\n\n\n\n

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We woke up on the day of surgery with excitement and fear.\u00a0 We were so excited to finally be at Teddy\u2019s repair surgery but were also worried about how Teddy would handle the massive surgery and also about what the following weeks would bring.\u00a0 Teddy also seemed to be excited about the future.\u00a0 He was … <\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_editorskit_title_hidden":false,"_editorskit_reading_time":0,"_editorskit_is_block_options_detached":false,"_editorskit_block_options_position":"{}","om_disable_all_campaigns":false,"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","enabled":false},"version":2}},"categories":[8],"tags":[],"jetpack_publicize_connections":[],"aioseo_notices":[],"_links":{"self":[{"href":"https:\/\/narratingteddysremarkablelife.com\/index.php\/wp-json\/wp\/v2\/posts\/419"}],"collection":[{"href":"https:\/\/narratingteddysremarkablelife.com\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/narratingteddysremarkablelife.com\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/narratingteddysremarkablelife.com\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/narratingteddysremarkablelife.com\/index.php\/wp-json\/wp\/v2\/comments?post=419"}],"version-history":[{"count":2,"href":"https:\/\/narratingteddysremarkablelife.com\/index.php\/wp-json\/wp\/v2\/posts\/419\/revisions"}],"predecessor-version":[{"id":422,"href":"https:\/\/narratingteddysremarkablelife.com\/index.php\/wp-json\/wp\/v2\/posts\/419\/revisions\/422"}],"wp:attachment":[{"href":"https:\/\/narratingteddysremarkablelife.com\/index.php\/wp-json\/wp\/v2\/media?parent=419"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/narratingteddysremarkablelife.com\/index.php\/wp-json\/wp\/v2\/categories?post=419"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/narratingteddysremarkablelife.com\/index.php\/wp-json\/wp\/v2\/tags?post=419"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}