48 hours. If a murder isn’t solved in the first 48 hours it likely won’t ever be. The first 48 hours is the difference between catching a killer or not. 48 hours.
A lot can change in just 48 hours. This is how the first 48 hours of welcoming our son into the world took place.
11:07 (0 hours): Jay enters the world. Followed by 2 hours of skin to skin, a few minutes of nursing, packing up from Labor and Delivery to go to the post-partum unit. I labored for 20 hours and pushed for 2. So to say I was relieved to be in a room with just the three of us and enjoying baby snuggles is a huge understatement. I took a few pictures of him to send to family- we had a no visitor for 2 week rule so we at least wanted to face time the grandparents. We continued working on nursing and he latched well, it was every bit of painful as others had warned me but it was at least going well. That is, until he spit up. And it seemed like A LOT.
19:00 (8 hours): He continued spit up so much of the colostrum, I wasn't sure he had anything left in him. The nursery nurse assured me it was normal. She checked his temperature and it was a little low, but she just wrapped him in two warm blankets and we all went to sleep. He got up a few times in the night but overall we had an uneventful night.
7:00 (20 hours): The pediatrician came to examine Jay and noted a heart murmur. This is very common in newborns, nothing to be concerned with. We went over the papers for circumcision and discussed the paperwork that we needed to do for his insurance, birth certificate, etc. Jay was a little tired and not overly interested in eating but we kept trying. Again, newborns are normally tired so nothing to be concerned about.
11:30: (24 hours)I had been doing skin to skin with Jay most of the morning since he was still a little on the cold side. We nursed for a few minutes here and there and I got him dressed for the day in a long sleeve onesie that said “new to the crew” that we used in maternity photos. My husband noticed he was a little blue around the mouth and his feet. Again, not uncommon in newborns and I brushed it off completely. I wanted to nurse him again but he was still sleepy so I handed him over to Kyle and got up to get cleaned up and have lunch in hopes to beat him to eating.
12:30 (25 hours) His nurse popped in and said she was handling a situation and was going to be in shortly to test his oxygen saturation and reminded us we needed to bring his car seat up to be checked. Kyle went to go get his car seat and get me some real coffee (not the crap that they sent up on the tray).
-Oxygen saturation tests are done on all newborns as close to 24 hours of age to detect Congenital Heart Defects.
13:00 (26 hours): I was just about to nurse Jay when his nurse came in. She hooked him up to the machine and his oxygen saturation was reading 68%. TERRIBLE. He was not gasping for air, no retractions, no cough, nothing. They had been having issues with that specific machine all day. But I know when those machines take a long time to read, it is usually because the reading is not good. She told me she was going to take him to the nursery to try another machine.
14:00 (27 hours): We were informed Jay needed to be intubated. They attempted to give him oxygen through a mask first but his saturation didn't budge. They were running tests on him and the neonatologist would be in to speak with us shortly. As a new, exhausted, hormonal mom- that is absolutely the last thing you want to hear. I hated being pregnant and was miserable, I was so excited to no longer be pregnant and to finally be able to hold my baby. Those feelings of relief and happiness came to a quick halt. I knew based on how long they were gone taking that his oxygen levels couldn't be good but my newborn baby getting intubated was not what I was expecting.
14:30: The neonatologist came in to introduce himself and to tell us that Baby Jay's chest xray was clear (some good news!), and that they were working on getting him an umbilical line to get blood cultures but since there was no obvious cause of low oxygenation, a pediatric cardiologist was on their way to do an ECHO to check for a congenital heart defect. In my mind, I knew certain CHDs were worse than others. I don't have an extensive amount of knowledge in CHDs - just the basics taught in nursing school and what I know from my niece also having a CHD.
My husband, Kyle, was panicked when the doctor left. He just asked what that meant. I started to explain to him what I knew about CHDs. I very specifically remember telling him, "I hope he's just a switch". I was already hoping for the best case of this worst case scenario. The nurse brought me in a pump since I was not able to nurse. It felt so uncomfortable to pump and so foreign. She showed me how to hook it all up and told me to pump every 2-3 hours for 15-20 minutes. I couldn't wait to get those 20 minutes over so I could get cleaned up and ready to go to NICU. It felt like so much time had passed where I had been unable to see my son. They were trying to stabilize him so we could see him.
15:50 (almost 29 hours) : Finally, we were allowed to be with him. We had to be let in since it's a locked unit, given all sorts of information on rules of the NICU, and finally taken back to see him. His nurse was AMAZING. She updated us on everything, and she knew I was a nurse so she gave me his lab values, what meds he was on, and how much of a vent he was currently needing.
16:30: The cardiologist arrived and did an ECHO and said "I'm gonna go find the neonatologist but what I can tell you is your kid is going to live a long and healthy life" talk about a huge relief!
In a conference room, the neonatologist and cardiologist told us Jay had Transposition of the Great Arteries with a Ventricular Septal Defect. The cardiologist was amazing, he drew a picture of the heart and went through normal blood flow, and then showed us what was happening in Jay's heart and how they were going to fix it. He said this should be a one and done situation. We should be able to get his Aortic Switch Surgery and he shouldn't need anything else in the foreseeable future. He told us he would have a normal childhood, he could play sports, even contact sports, he just couldn't be a powerlifter. He said these kids typically have ADHD or learning disabilities and to just keep a close watch on him as he gets older. We were lucky, that is all extremely manageable. In Kansas City we have a Children's Hospital that they were going to airlift Jay to and they were already starting that process.
17:30 (30 hours): The helicopter was there within an hour of telling us his diagnosis. From his nurse checking his O2 to loading him into the helicopter took 5 hours flat. It took quite a while for his nurse and the cardiologist to give report to the NICU, us to sign papers, and the critical care transport team to load him into their isolate to transfer him. I went back to our room once he was loaded up to sign my discharge papers- I was emergently discharged by the OB on call, I pumped one more time, inhaled food, and packed up all our stuff to leave.
18:50 (31 hours): The hospitals were only 10 minutes apart and my best friend works there and luckily it was close to the end of her shift. They were repeating Jay's ECHO to take him to the catheterization lab to put an additional hole between the top two chambers of his heart to keep oxygenated blood mixing until he could have his surgery. When we got the news I left mom mode and went straight to nurse mode. One nice thing of COVID was we weren't able to have visitors. I wanted that bonding time for the three of us anyway, but going through all of this would have been so much more stressful and emotional if family was there with us. While we were standing in the NICU and my best friend came in, I went back in to mom mode and started crying for the first time since we got the news. At that point I was glad to have someone with me who understood everything that was going on the same way I did. Unfortunately and fortunately, I didn't have time to be emotional. I had to stay rational to go over consents with the cath lab team and go over family medical histories so they could take him to cath lab.
20:30 (34 hours): Jay’s repeat ECHO was done, the Cath lab team had everything they needed from me, and they showed us a great app they have that allows the team to text parents during the procedure. I got that downloaded and they wheeled him off. His actual procedure didn’t start until around 21:30. Kyle and I went to the parking garage and switched out a ton of stuff for him to take home and for us to keep there. We were still in so much shock. I just looked at Kyle and said “I don’t even know what to tell you I need from home”. I’ve spent 7 years in the nursing field, I know general things you want to have from home staying in the hospital but I had essentially been awake for 5 days, only having had super small naps. You get on Pinterest and see all these “Hospital Checklists” but no one tells you how to prep for a NICU stay.
23:00 (36 hours): I went back up and got more pump parts and shown where the milk bank was and hooked back up to the dreaded machines. I read so much on breastfeeding, and I researched what pump I wanted, but I was not prepared at all to actually pump. It was so uncomfortable. It had been SO long since I pumped before we left the hospital, I still wasn’t sure I was hooked up correctly, and I had to hold both bottles by hand because I wasn’t prepared with a pumping bra. Kyle got back right around the time I got us burgers from the cafeteria and we inhaled them so quickly. You can’t eat in NICU and we wanted to be done when he got up so we could go see him.
0:00 (37 hours) Jay finally got back up to the NICU around midnight. The NICU was not parent friendly. We didn't have a room, it was a large open unit with isolettes and cribs lining the hallways. We had two recliners next to his isolette sitting next to his nurse and monitors that we were allowed to sleep in overnight. Kyle slept through so much that night- there were so many babies crying, so many monitors alarming, it was awful. I couldn't sleep because of that plus I was up to pump. We couldn’t hold him because he was intubated and sedated to recover from surgery. He had to lay flat for a minimum of 4 hours.
6:00 (43 hours): Jay was on a medication called Prostoglandins that help keep the hole in his heart open to keep the oxygenated blood moving. According to the doctors, it makes babies cranky. Once Jay’s sedation wore off from surgery he was pretty uncomfortable. He still had some sedatives and pain medication going because he was still intubated but he was still "awake". I was of course, up to pump, and wanted to clean up and get coffee and something to eat before shift change and rounds. The lactation consultant was going to come see me to make sure I had everything I needed (not that I had the slightest clue what that was). We met so many doctors that morning and it was very overwhelming. The hospital we were at was a teaching hospital so there are residents and fellows that accompany every attending.
11:00 (48 hours): I left close to that 48 hour mark of him being alive to go home and shower and take a nap. I was so sad I couldn't hold him, when I would touch hold his hand in the isolette it would upset him, which in turn upset me. His nurses gave me some small fleece squares to sleep with and take home to smell like me to leave on him when I was away, which made me feel a little better to know he at least had those.Volunteers also crocheted an octopus and the tentacles were curled to resemble the umbilical cord to keep him comfortable. I was running on pure adrenaline at that point. I was so surprised I didn't feel worse than I did for just having had a baby 2 days ago and not having any sleep for almost 7 days. The plan for Jay was for him to remain intubated in the NICU on meds and Kyle and I decided since there was no bed in the NICU we would take turns spending time at the hospital and being home with the dogs. We are so incredibly lucky to live 15 minutes away from the hospital. This was just the start of our incredibly exhausting journey.
