I'm not sure this story will be layed out in the best format. It will seem like everything is all over the place but that was the reality of our life. We were being pushed around all over the place and spinning around like a hampster in a wheel.
When I first met the boys they were in an incubator called a giraffe with blankets over them so they had complete darkness. They lifted Elijah’s blanket off first and all I could do was start to sob. His little body was so small and he had tubes and wires coming off him from all over. Owen had all the same wires coming off of him as well. My heart was broken, they should still be in my belly. I never imagined seeing my babies that size and it really takes your breath away and shocks you to the core.
Both of them could fit in the palm of our hands. You could see through their skin, all the veins and vessels under it were very visible and the skin color was red. Their eyes were still fused shut and they had barely any hair on their head but a bit of peach fuzz covering their bodies. They had a small amount of bruising on their bodies from the delivery. They both were on ventilators since they could not breathe on thier own. I.V's were placed in the belly button to give them nutrition that way. Honestly they looked like little aliens.
I was brought to my room to get some rest but I could not sleep for I think my adrenaline was still running from everything that happened. I had nurses coming in to check on me and push down on my belly which by far was worse than my unmedicated delivery with Harper. They would help strap my pump to me and check back a bit later to collect my milk(if I had any). It was a very lonely time spent with my mind racing of what was going to happen over the next several months of life.
It wasn’t until the boys were 2 days old I was able to gently touch them. You didn’t want to stimulate them too much since they shouldn’t even be out yet and you want to mimic the womb as much as possible.
Within the first week they both received blood and platelet transfusions, had ultrasounds to check for brain bleeds. Which Elijah did not have one and Owen had a grade 1 which resolved on its own. They slowly were given some breast milk on top of their I.V nutrition. When they were a week old Owen started to become bloated in his belly and his skin color became greyish. The doctors where concerned that he had NEC(necrotizing entercolitis) meaning he possibly had a hole in his intestines that was leaking stool into his abdomen. They ran other tests that showed he had sepsis and menigigits as well. It was late at night on January 21st where they transferred Owen via ambulance to Children’s hospital in Milwaukee. A few day's later Elijah starting getting sick and they checked blood cultures and found he also had sepsis and pneumonia and started treatment for him.
When we first arrived in Milwaukee with Owen we were brought to a conference room to speak with the doctor. The look on his face showed this was going to be a heartbreaking conversation. We basically were told Owen was very sick and the chances of him making it through this were slim to none and if we had any religious beliefs such as babtism or dedication we should get that done as soon as possible. After that conversation I looked at my dad and asked him "if the worst scenario happens will you please take care of all arrangements?" It wasn't something I wanted to ask him but I knew I would not be able to handle any of that myself. Looking back it probably is something a father/ grandfather would never want to be asked but my dad was there to have my back and help in any way he could.
Owen was started on antibiotics, blood pressure medication, antifungals (also had yeast in his spinal fluid), a drain was placed in his abdomen to release any fluid from the NEC. He started having seizures as well which he was started on medication for that. Elijah was responding well to his antibiotic's so they were trying to wean him from his respirtory support. He had a small hole in his heart (which is usually open up until a full term baby is born) they tried closing it with medication but that only made it close slightly. Elijah was battling his lungs and Owen was battling his belly to get better at this point.
We were now rotating between the NICU as St. E's, Children's hospital NICU in Milwaukee and home. Looking back I have no clue how we got through that first week. I was exhausted beyond all measures and I was limited in what I could do since I was still recovering from surgery.
Owen was taken off any oral feeding due to his abdomen. He got slightly better with the antibiotics and drain but his abdomen was still distended and something just wasn't right. I finally got to hold Owen right before Valentine's day. He was a whopping 2ish lbs or so and it was one of the scariest moments in my life but also an amazing feeling to finally have him in my arms and on my chest. He snuggled in nicely and the nurse even said his vitals where the best she had seen all day. Elijah was still fighting the ventilator and the hole in his heart was still open. The doctors at St. E's decided it was time to transfer Elijah down to Milwaukee to see if maybe surgical closure was an option for his heart. I also think they were helping my family to get the boys back together and ease our struggles a little. Elijah was 2 rooms away from Owen when he arrived. It wasn't as close as they used to be but alot better than how far apart they were over the last month.
On February 22nd Owen underwent an exploratory surgery to find out what was going on in his belly. He had been off food and on I.V nutrition which you still should have bowel movements with but we had yet to see one since his first week of life. That morning we had the surgeon, anesthesiologist, operating room nurses come and chat with us. I dont really remember all of what they said to be honest but I knew Owen was in good hands. I cried as he left the room not knowing what the outcome was going to be. Would my baby make it through the surgery? Would I see him alive again? Is his intestines too sick to fix? These are all the things that were going through my head at that time. I can't remember how long the surgery was but it felt like a lifetime. He ended up having 15cm of his intestine removed due to perforations and scarring. He now had an ostomy bag and would need another surgery later after he gained more weight to have his intestines reconnected.
Elijah was making small improvements with his ventilator. He had lots of fluctuations everyday on where his oxygen needs were at but he was holding on well and gaining weight good. He was started on a round of steroids to help his lungs as well which it seemed to help a bit. I finally got to hold Elijah on March 13th and do some kangaroo skin to skin time with him. For being so tiny he sure could move his head which had me so nervous because of his breathing tube. The feeling to finally have the chance to hold both my boys was heartbreaking and joyful. I so wished I could of held both of them right after delivery on my chest like I had done with Harper.
Owen was slowly gaining weight and Elijah was back and forth with his ventilator settings and oxygen needs. At this point our goals were to get Owen bigger for his reconnection surgery in April and to get Elijah's oxygen needs down. We had been told that Elijah's lungs were very sick and he most likley would be coming home with a thracheotomy(incision made into the trachea to be able to ventilate his lungs) and a gtube to feed him. Our hearts where broken hearing this news but we would do anything to make it possible to have him home. It was a waiting game at this point to see how his lungs would respond with the steriods and changing around the settings on his ventilator.
It was the Thrusday before Easter that Owen and Elijah's doctor came in to chat with us about the boys. She was happy with the progress Owen was making and we were just getting him set and ready for surgery in 2 weeks. Her biggest concern was for Elijah, his lungs were so sick and one of the worst she had seen. She showed us his x-ray's and what I compared it to was a chest x-ray of a dog or cat with cancer in the lungs. (For anyone reading this who doesn't know me that well I am a Certified Veterinary Technician. At times it really sucked having that bit of medical background when talking with doctors.) She also spoke to us about the hole in his heart and how the blood flow was not flowing in the heart how it was supposed to. We talked about surgery to close the hole in his heart and she told us "this is a choice that you as parents have to make, this surgery could kill him" but we also had nothing else we could do for him except see if his lungs start to heal.
We went home that night to discuss what Jake and I thought was best for Elijah. We did not want to lose him but we also felt we had to fight for what was best and do something that could help improve his blood flow in his heart and hopefully help his lungs.
I woke up the next morning to a phone call from the doctor telling me that Elijah has gone into an acute respiratory crisis. He was maxed out on his ventilator and she had spent her morning by his bed not sure what was going to happen. I immeditely called my dad who came with Jake and I along with my brother to the NICU and we sat down with the doctor to discuss what our next steps where. Surgery was now off the table as that would definitely kill him. It was a waiting game to see if he would respond to all they were doing.
He stayed stable over the weekend but was still maxed out with his support. He had moments where his stats would drop and had to be bagged manually to get his heart rate and oxygen saturation back up. I cant even tell you what he was all on for medication since they were doing everything possibly to help him stay alive.
April 2nd we went down with my mom and brother to the NICU. Owen was still doing well and where they wanted him to be at this point. Elijah was having more episodes of needing to be bagged and it was getting to the point where they may need to start CPR on him if he doesn't respond with the manual ventilation. The doctor came in to speak with us about everything going on. She told us she didn't think Elijah had alot of time left and she feared if we were to leave he would die without us with him. She went over how all this support would affect him in the future. We were told he would be vent dependent till possible over 2 maybe longer and most likely have severe neurological deficits. We were asked if he were to code if we wanted them to do CPR and how the outcome of that could lead to broken ribs with how little and fragile he was. We did not want them to perfomr CPR if his heart stopped. There was hours of conversation and so much more in our conversation with the doctor.
We called all family members who we thought would want to say goodbye and be with Elijah. My dad brought Harper down with him and I remember walking out of the NICU to get some water and I saw them coming down the hall. Harper bolted to me when she saw me and I fell to the floor and held her and just cried. It was exactly what I needed in that moment was to see her big smile and have her tiny arms wrap around me.
I was able to hold both my boys finally together in my arms. It definitely was not how I imagined or wanted it to be but they were finally back together near me even if it was only for a short time. We sat with both the boys for awhile and then with just Elijah. Jake and I both got to hold him and love him a little bit, our parents were able to give him kisses and love on him as well. Elijah passed away in my arms after we decided to stop his life support. It was literally seconds and you could tell his body was ready. We stayed for quite awhile everyone saying thier goodbyes and holding and crying with each other.
We didn't get home till after midnight that night and Harper was such a champ. She lived off snacks that night and lots of love and attention from the nurses which I am so grateful for all the love they showed us.
My parents fed us lunch the next day and my dad had almost everything planned and figured out for us. We had to go into the funeral home the next day to pick a day and write the obituary, along with the task of picking out an urn. I still was hoping this was all just a dream. I can't even explain how I felt being shown urn's and being asked if I wanted anything special or a picture in the obituary. Like really, it all was happening so fast I dont even think I could process all that was happening. I felt so numb and empty. How was I suppose to go on and make it through all this? I didn't want to, I wanted to be with my baby boy but I also had a family that needed me too. So much happened in the next several days it was all a blur.
Elijah's funeral was April 7th and I was blown away by the amount of people that came. Family, friends, nurses and even people that didn't even know me but knew someone in my family. The room was filled to the point many people had to stand. I sat up there numb the entire time. Was this really happening? Am I standing up at a funeral for my own son? Why? This was so incredibly not fair. I'm not sure why but I had this strong feeling of needing to speak at his funeral, as if it was at least one thing I could do for him and show how much I love him. I'm not sure everyone understood me through the tears that streamed down my face as I spoke but letting it all out felt oddly good.
I will never be the same person I was before all the heartache and tragedy happened. I have a huge hole in my heart and there was a big part of me that died the day I had to say goodbye to Elijah. I think about him every second of everyday. I think about the what if's and if I could of done something differently. I have lots of guilt thinking this is all my fault and I know its not but I will forever carry that burden because it was my body that failed and put both of them through pure hell. I also think that maybe Elijah went into this respiratory crisis to save us from making the decision to put him through surgery. Maybe he was letting us know he wasn't strong enough to make it through that and save us from making that decision of sending him into a surgery that he wouldn't survive. I guess I will never know why it all happended how it did.
On April 12th, Owen had surgery to reconnect his intestines. The surgery was not as long as the first and he recovered well from it. From here out was getting him to gain weight and weaning him down on his oxygen so we could start oral feedings with him. Once his oxygen requirement came down we were able to start bottle feeding and doing non-nutritive breastfeeding. It took him a bit to catch on to feeding but he was proving to be so strong.
In May he ended up needing surgery for two hernias near his groin along with surgery on his eyes to fix his ROP(basically the vessels were growing too big and pulling on his retina which could cause it to detatch). He made it through the surgery but had a bit of a setback with his oxygen as he had swelling in his airway and had to be intubated a bit longer.
We were getting closer to the finish line of going home. He had his carseat test which he passed and then he was tested without oxygen to see if he would be able to come home without it and he rocked that too.
On May 31st we finally were able to take him home. I honestly didn't believe it even when we were in the car driving home. Like was this really happening? My family was about to all be under one roof!!! We had lots of appointments those first few weeks along with getting a nurse to come to our house to check in on Owen. It was a big transition trying to find a new schedule for us but it was the best feeling to be able to cuddle his sweetness here at home.
I know this is very long and to all who have read through the whole journey you are awesome. There is so much more that I could put in here because it was a long almost 6 months of being in the NICU. Also there is so much more to Owen's story as well after the NICU. Just because he is no longer there doesn't mean our lives would go back to normal. There is so much more that goes into the care after having a premature baby, especially one who has had many ups and downs.
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