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Journal entry by Mallorie Ward

After his episode with pneumonia we got a good stretch at home. The girls were home on break which was great since I hadn’t seen them much while in the NICU but it was also exhausting. I think Addie is having a hard time adjusting to our new normal. We’ve had a lot of behavior issues at home and though I understand it, it does make things even harder. We knew it would be good for her to get back into school and a routine because she’s one that likes to be out and about and due to Bennett being immunocompromised we have pretty much stayed cocooned in our house. Nora on the other hand is a homebody and loved it. It was really nice though to be home together and I am so thankful for that time.

Unfortunately towards the end of break Addie got a runny nose. Any illness is a major concern for us so we took extra precautions to protect Bennett. We washed our hands and sanitized constantly. We kept Bennett in his room. I changed clothes when I was in Bennett’s room versus with the girls. Yet, Bennett started showing signs of a cold on Friday, January 4th. Early on Saturday morning I ended up calling the on-call physician at Iowa City. Based on what I described they wanted me to bring him in to the ER and we felt comfortable driving him so we made the hour and a half trip. I was a wreck. I did not want to be in the hospital again. I also wanted him to be safe. He wasn’t looking bad but just enough that he needed to be seen. They checked him out and believed he had a virus but the chest X-ray showed his lungs were good. They gave us the choice of being admitted for observation overnight or go home and return if needed. We decided to go home and over the next few days he definitely wasn’t at his best but he didn’t seem worse. He did develop a little cough though which was sad to listen to. On Monday we had a lung X-ray done in Geneseo to check it hadn’t developed into pneumonia and that came back clear too.

On Tuesday he had six appointments in Iowa City with various specialists. The first was the pediatric surgeon. Bennett has developed a hernia in his groin and has an umbilical hernia. Both will require surgery in the near future. We discussed that it makes sense to have a g tube for feeding placed at the same time so he doesn’t have to be put under multiple times. We also met with his cardiologist and had a heart echo. Overall his heart still looks pretty good. There are still a few things they are watching but the cardiologist is optimistic they will resolve on their own and he doesn’t need to see him until he’s six months old. Next he had another hearing test which he still didn’t pass so he has another more extensive one in about a month. We met with his dietician and discussed our concerns of reflux but also that his stuffiness may be related to the cold. Yet he has always kind of had some gunk in his nose and throat after feedings so I think this needs further looking into. We then met with his speech pathologist and discussed feedings and this concern of reflux and he’d like to see us again soon and watch him with a whole bottle to see the whole process. He’s done all of his swallow studies and believes he is capable of eating orally but is concerned that he may start struggling when he gets tired so we’d like him to see the full process. 

Throughout the week Bennett seemed to get better but you could tell the cold was lingering. We had more appointments on Friday in Iowa City so I was glad they would be checking him out. I had my six week obgyn check up and then it was time to meet with Dr. Dagle, Bennett’s neonatalogist. I’ve probably discussed him on here before but I really am a huge fan of him and I’m so glad he’s following Bennett’s case. He reaffirmed why we love him when he presented us with an adorable, soft quilt his wife had made for Bennett and he had signed from him. What an amazing gesture! 

While at this appointment Bennett was hooked up to our pulse oximeter and theirs and he had several episodes where he dropped his heart rate and oxygen level at once. We had noticed that some at home but his home nurse and cardiologist both thought it was misreading because he looked fine during it and didn’t change colors. We’ve come to find out that Bennett is really good at hiding when he’s struggling. His body compensates very well for something not functioning right until he gets too tired. We believe that’s what happened that day. Even though he’d been looking better, he was fighting the virus until his little body just couldn’t do it anymore. They said this is common in babies. They compensate until they can’t anymore and then fall quickly. Fortunately we were at the right place when it happened and we were admitted to the same floor we’d been on a few weeks ago.
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Journal entry by Mallorie Ward

On December 21st, Bennett started the morning looking off. He was very lethargic, his color was a little off, his soft spot was a little sunken in, and he had a slight temp. His home nurse came for a check up and I told her my concerns and as she looked at him we both agreed he needed to be seen. As his regular doctor was fine, we decided to do the emergency room in town. When we got there he was looking pretty bad. They did a swab go check for a virus, put in an iv, and contacted Dr. Dagle, his neonatalogist, about what he suggested. They decided to transfer him by ambulance to Iowa City’s ER. That was my first time in an ambulance and it was hard seeing my little guy still in his car seat strapped to the gurney. 

We we got here and they had to run more tests. Andy arrived a little after and we waited as they went through the process of admitting him. Due to his age they had to check for meningitis and had to do a spinal which we left the room for and paced the halls. Finally we were admitted and sent to the 10th floor of the Children’s Hospital. They began him on antibiotics as his chest x-rays showed pneumonia. 

Over the the next couple days, we waited to see if we could figure out what caused it but no bacteria or virus was ever confirmed so it was called community acquired pneumonia. We were suspicious it was caused by aspiration so they had a swallow test completed that he passed. We still thought possibly it was from reflux too but that would be hard to confirm. 

Bennett was working pretty hard at breathing and on Saturday night they moved us to another room and discussed putting him on high flow oxygen. I actually pushed to not jump to that because he hadn’t really changed from what he was previously doing and when he was in the NICU, the high flow kind of had the opposite effect and made it hard for him to get even breaths. They agreed to wait but it led to a sleepless night and a lot of doctors visits to the room which stressed Bennett and us. 

The next couple days involved a couple different iv antibiotics, some x-rays, and a plan for how to get us home. It was a really rough time as on the weekends not a lot gets done and with Christmas Eve on Monday, I really wanted to be home as a family. We did go home for Andy’s family’s Christmas on Sunday which was nice. I was a kind of a mess though. I wanted to be home for Christmas, especially with his condition statistically this could be our only Christmas with him. The doctors started switching us to antibiotics he could continue at home and made sure he still was improving but then gave the ok for us to go. It was scary leaving when he wasn’t 100% but we were ready to be home. We got home the afternoon of Christmas Eve. It was so nice spending Christmas Eve and Christmas as a family and I’m so glad we were able to.

Bennett did continue to get better and we started to settle into a good routine with him. It was fun but exhausting having the girls home for winter break. Adding a third baby to the mix would have made our life busy anyways but when that baby has several medical needs it is a whole different level but we did our best to spend time with each of them.

Journal entry by Mallorie Ward

Friday, December 14th was our first full day home. The girls went to daycare and school, Andy to work, and my mom cane over to help me for the day. We had to take Bennett to his first local doctors appointment which was pretty much the worst place for a first outing with a fragile infant during cold and flu season. My mom and I were so cautious while we were there and did everything we could to protect Bennett and ourselves from catching anything. He was weighed while there and was exactly 7 pounds. We also got our first visit from a home nurse who looked him over and gave us information about the program. I’m so glad we will have that support in place until we figure out more consistent nursing support. We have to wait on the state of Illinois for approval of several things before that happens. I do feel like I spend a couple hours on the phone most days talking with insurance, government programs, and all sorts of agencies and specialists I never knew existed. It makes my head spin most days but I’m starting to see how the pieces fit together. 

Since getting home we have been trying to figure out a good routine and balance. Our family has helped a ton and made the transition much easier. Addie and Nora have been really good and are taking the changes very well. We celebrated Nora’s birthday Saturday night with family at my parents’ house and Andy and I switched off staying at our house with Bennett. We spent the next day, her actual birthday, together at home and we started to get more of a routine in place.

This first week is really just going to be focused on that, specifically finding a routine that works for all of us, working on Bennett’s feedings, reconfiguring the space to best fit Bennett’s medical needs plus allow us more opportunities together as a family, and trying to give ourselves a little grace when it doesn’t go as planned. It has definitely been a up and down journey especially with finding time to sleep and working on his feedings but I think we are starting to get a routine or at least a more comfortable chaos. 

The thing that’s really blown me away this entire journey is the amazing support we have around us. From our family and friends to our church, community, workplace, and complete strangers. We are so overwhelmed by it and so grateful. The support has made a scary, lonely time feel more peaceful and bearable. We can’t thank you all enough. You have made us feel so loved and prayed over and we could never thank everyone enough.

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Journal entry by Mallorie Ward

Well Andy did feel better and we decided to do the trial night in Bennett’s room to get a feel for the routine, use his new pulse oximeter we’d be taking home, and see what questions came up. Everything went well but I still wasn’t feeling one hundred percent and got about 3 hours total of sleep so I started the next day feeling really drained. Yet, the adrenaline of knowing that we were now cleared to go home, kept me going. There was a little concern about his last lab work that had a bilirubin level of 3 but they said it wasn’t high enough to keep us there. I was definitely really anxious about leaving. We wouldn’t have the experts right there when questions arose. We would be solely responsible for his care and that was scary. I was so ready to be home as a family though.

Between packing and discharge items we didn’t get out of the hospital until after 1pm. The drive home was nerve-wracking as we had an hour and a half drive while on oxygen with several large tanks in the car that I just envisioned exploding if we were in a wreck. Andy did great though and we made it home in one piece. Not long after getting home my mom and sister brought the girls home. They thought they were just coming to get clothes for the night and had no idea we’d be there. They were excited to see us when we got there but still were confused and thought we were just visiting. Then we told them someone else was there with us and Addie right away said, “Bennett?!” and went to his room to find him. Both girls were so excited and it felt so good to be together again, read them a bedtime story, say our prayers, and tuck all my babies in for the night. That first night was definitely hard and we had a big learning curve as we tried to figure out what was going to work best in this transition but I was so glad to take on that challenge as it meant being home. We took Bennett’s one month picture to commemorate the day as it was exactly a month after he was born that we got to bring our sweet baby home.

Journal entry by Mallorie Ward

I finally felt better on the 11th as Andy went back to work for a day since our discharge plans were a little thrown off. I spent some time in Bennett’s room with a mask and gloves on because I still had enough symptoms that I wanted to take every precaution. I still didn’t hold him which was so hard to do but I felt I needed to give it more time. The only changes that day were to change the formula they are mixing in with the breast milk to give him more protein before heading home. He also reached a pound over his birth weight, now at 6 lbs 11 oz! Growing boy! He started developing some baby acne which is very common at this stage but surprised me when I hadn’t seen him for a day. He didn’t have a great day with bottle feeding and his nurse said he was pretty fussy so we are watching to see if it’s something with the new formula mixed in. Andy was able to get him to finish a whole bottle that night though so maybe it was just a rough start. 

The next day we arrived in the room for rounds and were greeted by a new doctor and nurse practitioner for the day. They are continuing what was in place before and upped his feeds to 60ml. We had our home oxygen equipment delivered to us here and got some training on that. The plan is for discharge tomorrow as long as our trial run goes well tonight and everyone is healthy. Unfortunately Addie now has a respiratory virus so we are hoping that runs its course quickly too and that this is the end of our sickness spell. Andy also had an upset stomach in the evening and we were praying the stomach flu wasn’t catching up with him but he’s doing better now. So here’s to our night trial run in our little hospital room. Pray it all goes well and we get to be on our way tomorrow!

Journal entry by Mallorie Ward

We spent some time at home Sunday morning finishing getting some things ready. It was hard to be away from Bennett for the night but really good to get things ready and be at home with our girls. Bennett had a good day at the hospital and we got in some snuggles before dinner. We walked to a nearby restaurant for dinner and when we returned I felt miserable. I told Andy I needed to go back to the room and I didn’t even make it all the way back before getting sick. I then spent the entire night with the worst stomach flu I’ve ever had. 

The next day wasn't much better. I wasn’t getting sick but I felt horrible and couldn’t eat anything. I stayed in bed all day. Unfortunately we were supposed to do our medical equipment training that day in preparation for going home but I couldn’t do it and I didn’t want to expose Bennett to any germs. They were able to reschedule it to Wednesday so I’m hoping I feel better and I pray no one else gets this bug. I’m pretty frustrated as this was the last thing we needed right now. I’m anxious about Andy, Bennett, or the girls getting it and I feel at a disadvantage now getting ready to go home as I’m completely wiped out. I hope after some more rest today, I will wake up ready to go tomorrow and that this is the extent of the illness. 

Through all this I am thankful Andy was here to spend some time with Bennett when I couldn’t. I’m thankful for good nurses and doctors who kept me up to date and switched around the plans as needed. I pray when I look back on this that I see those blessings and not the frustration I currently feel. 

Journal entry by Mallorie Ward

These last couple days have been very busy. On Thursday, Bennett had his second hearing screening and he did not pass it again so we will need follow up testing in the next month. He has also been increasing his bottle feedings and seems to be doing well with that. The big event today was his room air oxygen trial. They turned off the oxygen around 9:30 and if his oxygen level dropped under 85 at any point, he would qualify for home oxygen. He dropped to that point at 10:50. While it is not good that he needs that oxygen, I also feel like it is a huge relief that we will for sure have that support for him at home and hopefully as he gets stronger, he will need it less and less. 

My friend, Amber, visited today, along with my sister, Jessie, and my mom so that was really nice. It always helps to have support on days like that. Now that we know he is going home on oxygen, we can really start prepping for going home. That included me completing some training and watching his ng tube get changed. It wasn’t as bad as I thought it would be, but we will see how I feel about it when I do it myself.

On December 7th, I spent much of the day in a meeting with an enrollment agent from DCSS to get Bennett home nursing support. It was a lot of information, lots of paperwork, and lots of questions. At least the process is started, but it sounds like it will be a long process to really getting it going. The care coordinator here is going to try and setup interim nursing care but we won’t know more on that until Monday. On Monday we will also get training on the medical equipment we will go home with. With those things in place, plus me successfully putting his ng tube in, we are now looking at the possibility of being discharged early next week! It’s scary but exciting. I still have quite a bit of questions and concerns but we will get those addressed as best as we can before we go. Other news is he went up to 58ml on his bottle and he’s been doing really well on the ones he’s offered. 

On December 8th, we stayed for rounds and discussed discharge plans. We then drove home to spend the day and night with the girls, set up Bennett’s room, move the girls into a room together, and decorate for Christmas. Our friends, Amber and Brandon, and my parents came and helped move furniture, clean, and just be amazing help. We got so much done and after more work throughout the evening and next morning, I feel like we are more ready than I thought possible. It was like 3 months of nesting in 24 hours. I think the excitement gave me a ton more energy than I thought I’d have after recovering from a surgery.

Unfortunately, after lunch Addie looked pretty rundown. She’d had watery eyes that morning and laid around more but she hadn’t slept well the night before so we thought she was just tired. Then I touched her head and realized she was warm. She had a fever and had to miss a play she’d been planning on going to with Aunt Sarah. She actually ended up sleeping from 3pm until 6am the next morning without much interruption. The fever broke early evening and she woke up the next day and seems to be doing well. 

This sickness stuff is one of the scariest things about coming home. A cold for us can be deadly for Bennett or at least require hospitalization. As we are just starting cold and flu season, it’s a daunting task to prevent it. We’ve all got our flu shots and whooping cough vaccines and we will do everything we can to prevent it, but it’s still a really scary threat. We are also looking into a shot that helps provide some immunity to RSV for Bennett. We are praying insurance will approve it as it could be lifesaving for him as a respiratory illness would be horrible. 

So as we head back to see our little guy, we have quite a bit of training and some busy, hectic days and nights ahead of us, I can’t help but be so thankful we are at this point. We are looking at being together as a family again and bringing home our son when we didn’t even know if we’d meet him alive. Now we are looking at being home this week before Nora’s birthday and Christmas and I’m so grateful we are here.

Journal entry by Mallorie Ward

I made sure to get to Bennett’s room early today as I had some concerns I wanted to talk with his doctor about. I am concerned about leaving the hospital without oxygen support. They keep discussing wanting to wean him but his stats are already low on it so that concerns me. I also posted the question to a trisomy support group and they all said to not leave the hospital without oxygen as airway and breathing concerns can show up later. They also suggested having a pulse oximeter and apnea monitor. I wanted to bring all this up to him. Of course they started rounds in the children’s hospital for once so they didn’t come until late morning but the nurse practitioner did stop in as I was telling my friend my concerns and was a little emotional. I talked them over with the nurse practitioner and she believed they were valid concerns we should discuss with the doctor. She was also able to see Bennett upset and how that affected his oxygen negatively. 

During rounds, we discussed those things and I feel my concerns were heard but there is uncertainty what insurance will help with or what will be out of pocket since some of the equipment is precautionary. They also discussed changing his feeding plan from only one bottle during the day and at night to any time he shows cues. Anything he doesn’t eat will still go through his ng tube.

The ng tube is one of our next hurdles. It runs through his nose to his stomach and in order for him to go home on it, Andy and I need to learn how to replace it as needed. I’m so scared of this. The nurses and doctors say the procedure is not too difficult but is emotional to do to your own baby as they do not enjoy it. The other part that scares me is that if you do it incorrectly it can end up in his lungs. There are ways to check that but it still scares me. We will start training on a doll and then do it on Bennett before we go home. If we can’t handle it, the other option is a g tube. This requires a small surgery and then allows you to feed him directly into his stomach. Many kids with trisomy 18 have g tubes so that may be something we look at later but for now if we can handle the ng tube I’d like to avoid a surgery. 

The ear, nose, throat doctor finally came today too and did a bronchoscopy on Bennett which is a tiny camera that goes through their nose to their throat. We did get pretty good news from that as the doctor said he did not see any major obstructions and that his airways had pretty good muscles tone and on the mild end of having floppy airways. They will follow up in about a month and every three months after that until he’s 18 months which is when this issues usually resolves on its own. So for now, he’s cleared him to go home without surgery or more testing until later. 

I did find out in passing that Bennett failed his hearing screening. When I asked the doctor more about it he kind of brushed it off as we knew he probably would with his condition. That really got to me. A lot of times t18 kids have narrow ear canals but I thought Bennett had responded to sound and our voices so it hit me pretty hard that he may not be hearing us at all. I did talk with his nurse and the ent later and they both said that test is not very accurate and that after he has his next one we should get a better idea if that is really the case. 

Overall today was a lot of ups and downs. I was also reminded that while he has a good doctor and team, that I really have to filter some things they say that are insensitive and harsh, but also I have to be Bennett’s advocate. Confronting people or making a stand is definitely not a strong characteristic I have. I’m a people pleaser by nature so I second guess all my interactions and don’t want to bother others but this experience has really pushed me to grow in that area. Most days I don’t feel very strong but I know I have to push for what is best for Bennett and our family so I will keep trying my best.

Journal entry by Mallorie Ward

I started the day with a discussion with Dr. Dagle about a few questions I had and our plan moving forward. He was very easy to talk to and I feel like my concerns were well heard. He has already set up for the ear, nose, throat doctor to come assess his airways in the next couple days. The plan now is trying to wean off oxygen and work on bottle feeding. Bennett has done well on several bottles, finishing between 20-30ml so about half his bottle. He didn’t do great today though but I don’t really blame him after his circumcision but hopefully less infections later. He pretty much slept the rest of the day off and on. 

On Dec 4, they decided to try taking Bennett off the pump for his feedings and instead just let gravity drain the milk through his ng tube. He seemed to do fine for the first one but this afternoon he was really worked up. I couldn’t tell if it was pain from his procedure, gas, or from his feeding but it was hard to see him so worked up. His crying reinforced my concern over his airways but still no visit from the ent doctor. 

A couple friends visited today so that was really nice. Visitors really help break up the days. I thought I’d have a lot of extra time here but I feel like the days go quick. Between visitors, staff visits from various departments, pumping, feedings, and a variety of other things, the time usually goes quickly. 

A highlight today was after posting a question on a trisomy support group on Facebook, a lady reached out to me and said her son also has trisomy 18 and Klinefelter syndrome. We started messaging back and forth and I found out her son is 9 years old and doing really well. He has some medical things going on and some different delays but his smile and personality shine through. She said I’m the first person she’s found in the US that has a son with both conditions. It’s such a rare thing that there isn’t a lot of information on it. Her words and pictures of her sweet boy were so encouraging! Now I just need to deal with my anxiety over him catching a virus or infection and try to just enjoy the moments. Anytime a nurse, staff member, or anyone coughs or sniffles I get anxious. A cold or virus can be deadly for Bennett so I have reason to be cautious but the fear can be overwhelming at times. This will be a real struggle for me when we go home too so I need to find a good balance between caution and fear.

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Journal entry by Mallorie Ward

We enjoyed a sleepover with the girls and they loved getting breakfast in the cafeteria before heading up to Bennett’s room. The child life specialist had put together little activity bags for the girls and they kept them very busy and happy. As we sat up in Bennett’s room with them, Andy and I were so thankful for the new space. This was the first time we’d had the girls in the room with Bennett for more than a few minutes. The highlight of the morning was Addie holding Bennett. She couldn’t wait to do it and didn’t want to stop holding him once she got him. It was such a beautiful first. 

We met Andy’s parents for lunch and Mema Denise got some holding time in. The girls went home with them so Andy could stay another night. It’s so hard seeing them go each time. I can barely keep it together but the girls always handle it really well. A couple from church then stopped by to visit with us and we had some good conversations as we sat with Bennett. Bennett finished the night with drink 33 ml of his 55ml bottle, his best yet. He did 30 ml during the night with his nurse too so he was on a roll. 

The next day I was able to make it over right after rounds but the doctor came over to talk to me after he finished the other rooms. His new doctor is Dr. Dagle. He was the doctor that was at our perinatal care conference who left a huge positive impression on us. He had stated that statistics are often wrong and that we will treat Bennett as he needs to be treated. He gave us so much hope that day. We had been praying he would be Bennett’s doctor and meeting with him this morning reinforced why we thought so highly of him. I had expressed my concern to the nurse practitioner about wanting an ENT to check his airways before we left the hospital. I had been somewhat dismissed by his previous doctor because he didn’t see a need for it. Dr. Dagle already has the appointment set for tomorrow and said that if a parent is concerned then he will help do what he can to address that. He also said that he expects perfect care for him, not just adequate. I told him how glad I was to see him as our doctor and what a positive impression he left on us. It was really just a great interaction and I look forward to having him care for Bennett. 

Sarah, Kristian, and little Oliver drove up to see us and Sarah was able to watch Andy and I give him a bath, the first bath for Andy, and hold him for her first time. Andy and I spent the rest of the day together and with Bennett until he had to head home for the new school week. Another hard moment, but much better outlook than the previous week. I’m spending the rest of the day relaxing with Bennett in his new room and feeling grateful for how far we’ve come. Oh and Bennett reached the six pound mark! Grow, buddy, grow!

Journal entry by Mallorie Ward

On Monday, November 12th, Andy and I made our drive to Iowa City with the hopes that we would meet Bennett that day. I was being induced even though I had c-sections with the girls because of the Obgyn’s recommendation for future possible pregnancies and his small size. We agreed to try and after being checked in at 7am, my contractions were already a few minutes apart. They started pitocin soon after and it was kept pretty low at a 1 or 2 out of 30 (highest level was 7) but my contractions were consistent so it was just a waiting game. They did a couple things to try and speed labor along which were pretty painful but they didn’t want to push too fast due to fear of rupture of my scar and too much stress on Bennett. The contractions and pain became very intense as the day went on and around 8 that evening I had an epidural to help with the pain and hopefully get some rest as I was only at about 6 cm around so quite awhile to go. I was able to rest a little bit and it was actually very peaceful for a little bit as they turned down the lights, my pain diminished quite a bit, and the only sound was Bennett’s heartbeat on the monitor.

About midnight they checked again and no progress. Bennett was also showing some mild distress. Over the next couple hours, it was clear the contractions were affecting Bennett more than before and his heart rate was a little erratic. After discussing with the doctors, our concern was that if he was struggling now with so much still left to go in the labor process that he might not do well. Also, he was sitting really high and there was a concern that if my water broke, the umbilical cord would come out first causing an emergency situation for Bennett. We decided it was time to go for a c-section. I felt disappointed that it didn’t happen naturally but also relief that he was going to be here soon.

As they switched gears to prepare for a c-section, things moved pretty quickly. As they moved me into the operating room, Bennett’s heart rate started becoming very erratic so the doctor told me we were going to have to do this quick. They started getting things in place so quickly, I was worried Andy wasn’t going to be brought in before they began but finally he was there. The time after that was one of the most agonizing times in my life. When they got him out, it was silent. He wasn’t crying. We couldn’t see anything. He was whisked off with the NICU doctors to the corner of the room. We had no idea if he was alive or not. The tears started streaming as I begged to know what was happening. Andy couldn’t tell so we both felt helpless. Finally they let Andy come over but I still laid there waiting to here. The neonatalogist finally brought him over in a NICU bed and lifted him up to show me. He said he was stunned when he came out but was breathing with some help and his heart was beating. I felt some relief as I glimpsed his face but soon he was wheeled out to the NICU and Andy kissed me goodbye as he went with.

I laid there in and out of it while they finished the procedure. I just wanted to know about my baby. After they finally finished, they said the surgery went well despite having to rush and lots of extra amniotic fluid. I was taken to a room for recovery where I asked the nurse for my phone to try and find out something. Of course, my phone was misplaced when they moved our stuff to the recovery room so it was another ten to fifteen minutes before I found that. I couldn’t get ahold of Andy so I asked someone from our family to come back. My mom, dad, two sisters, and mother-in-law had been in the waiting room since Monday morning waiting for his arrival and providing support to us. My mom and sister came back and I broke down. I just wanted to know Bennett was alive and I wanted to see him.

Finally, Andy returned with a few pictures on his phone and with a report that he was stable but on oxygen and some ivs. From the beginning it was clear, Bennett did have some issues that pointed towards a chromosomal disorder but he was already showing he was a fighter. We found out he was born at 3:33 am on November 13th, weighing 5 lbs 11 oz and 17 inches long. He was born at 39 weeks, 3 days. I was told if the anesthesia had worn off enough for me to stand on my feet in 2 hours that I could be wheeled in to see him. I started wiggling my feet and toes as soon as I could as I was determined to see him. My family and Andy switched in and out to see me and help distract me and support me. I was shaking so much probably due to the medicine but also adrenaline from all of the craziness that had just happened.

After two hours, they finally took me to see him in the NICU and the feeling of relief and love that I felt at seeing him were overwhelming. The future was very uncertain but he was here and I at least got to meet him. Bennett was just beginning to show us what a strong boy he was!
Bennett’s Story

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