This is the final chapter in our birth story of three parts. You can read part 1 here and part 2 here. This one will be a long one, fair warning. We left off on the day we went in for our routine 38 week ultrasound, to be told that we were being sent to the hospital to have our son that day. Surprise! Also, the OB who had been with us since the very beginning, with my first pregnancy, wouldn’t be delivering our son. It works like that of course, in a practice you’re either on call at the hospital that day, or one of your partners is.
I was in it now. There would be no turning back. My heart rate quickened at all the news coming our way, biggest of all being that this was it. We were going to have a baby outside in the world, no longer tucked inside. I would have a stranger walking us through the next part but c’est la vie. Let’s do this.
We robotically went to our car and started driving to the hospital. If you were to look at either of us, you’d see the deer-in-headlights look. We began texting our parents to let them know today (or early tomorrow) would be the day.
We found our parking spot, took out all our bags (thank goodness we’d packed them and brought them) and headed to the elevator. We kind of stared at each other and had our moment of “our lives are changing forever”. We kissed intentionally, deep in love. We were going to enter this new adventure together. Deep breaths, doors opened, here we go.
Oddly enough, I began the induction around 9am that morning and I spent hours not really feeling much at all. I wasn’t in pain. Contractions weren’t too strong. I wanted to stay as mobile as possible because I do better with pain when I can move around rather than be in one place immobile. So I asked for no other medication at the time.
My “plan”, which any Mom can tell you becomes fluid no matter how resolute you intend it to be, was to try a natural birth. I wanted to stay off any pain meds for as long as possible, while still knowing that if it came down to it, an epidural could be an option. Though again, I wanted to try to go at it without. I had made the firm choice for no narcotics no matter what. I did keep the localized block on the “yes” list for when the time came for pushing.
Hours passed with no real progress. They had a schedule of when they would increase the levels of Pitocin. Since I wasn’t progressing at a certain pace, they then broke my water for me. This is when things truly started to get going. I believe they broke my water around 3pm, so we are 6 hours in. At the 7th to 8th hour, the contractions started more forcefully. I was in bed at that point and it was starting with a vengeance. (Not sure why I wasn’t walking around as much. I was on the monitor for baby’s heart beat so my roaming was limited.) After two more hours of increased pain, I began to think of an epidural. I was in shame and guilt and internal conflict. You leave space for others to do what they need and hold them in supportive respect no matter what, but when it’s yourself (maybe it’s just me, but I doubt it), you aren’t as flexible with the acceptance.
I murmured during contractions that we can schedule the epidural after all. Once the words left my mouth I burst into tears of guilt mixed with pain. James was right beside me on my left side. Holding my hand and whispering in my ear that I had no reason to be regretful or guilty. He affirmed love and strength and capability and support throughout the entire day. He let me process my emotions and was there through it all.
It was close to an hour later or more that the anesthesiologist arrived. During that time, my second-guessing was lessening as the pain only increased stronger with each contraction. The whole needle in the back thing was not at the top of my want-to-experience list, but I tried to distract myself. It was over somewhat quickly with not as much pain as I anticipated – though don’t get me wrong, it didn’t feel great.
I don’t remember exactly how long it took for it to take effect. I want to say 15 minutes or so. My left side was the first to go and to be honest, the last to come back. My left leg was completely useless for the rest of the time. No feeling or controlling it. We laughed more than once about it.
As the epidural took over, I stopped feeling guilty. As in, I felt no more pain and it was tremendous. I learned quickly that it was the best decision for me. Maybe that means I’m not as strong as those who have done it without drugs. Maybe that’s true. Maybe those who can and have are better in some ways. I have to be okay with that because I made a choice and it really did help me get through the over 14 hours of labor that it took to bring my son into the world. Maybe that’s all we can ever really do – make the best choices for us, so that we can do the best for those in our care.
As it can do, the epidural did slow the process a bit. I still wasn’t dilating much. As the hours passed, I still hadn’t progressed past a 5 after the epidural. I was watching the clock because I knew that after 24 hours, we would be moving to surgery. It would be 8 more hours before the main event.
I should go back and share a little about the Doctor we met who would deliver Jaxon. Her name is Dr. Sampson and she is a practicing partner of my OB’s office. I had never met her before. When we were settling in, the nurses reaffirmed who would be delivering our baby. I shared that I’d not met her before and was a little sad my OB wasn’t on call today. They all emphatically sang her praises that she was one of the very best. They all were genuine and when you see appreciation in the people surrounding someone in their profession, it makes a difference. I was set more at ease in a big way after their affirmation. It wasn’t long before she came to introduce herself. She was bright, personable, genuine and on top of things. She earned my confidence in those first minutes and I will forever be grateful that she gave us such a great experience during a daunting time. I felt supported in every way that day and even in the coming weeks after (more on that later).
The remainder of the labor and delivery went as best as it could possibly go. I quite literally couldn’t feel any pain whatsoever. It was an enormous relief and gave me my energy for the rest of the process. I know our bodies are made for this and the strength comes from somewhere supernatural, but I couldn’t imagine the 14 hours of pain and difficulty, only to then have to have the strength and stamina for the final pushes. Having the pain taken away permitted me to be fully present and aware, and supplied me the endurance for every part.
Dr. Sampson arrived again for my check and let us know – the time had come. Everyone moved quickly getting set up while she got on her full gown. It was like an orchestra preparing for a show. I observed everyone move fluidly and with purpose. Each knew their role and what needed to be done. I remember watching those final minutes of prep and while I was nervous at the role that only I could play, I knew that I was perfectly safe and in the hands of greatness (both by the people in the room and the One who led us all here in the first place).
One of the most surprising things for us, was how quickly that final stage passed. I pushed for maybe 10 minutes and a handful of times and our son arrived. My husband remembered the humor of Dr. Sampson’s surprise that Jaxon basically shot out. No head, then shoulders, then waist, etc. No my son decided there was no reason for delay. His entire body came at once and the Doctor laughed in wonder. “I wasn’t expecting that!”
The moments blur together after that and I wish I could separate them out and have them drag out, memorizing everything. What I do remember is bewilderment, warmth of his body on my chest, seeing those dark eyes surveying this insanely bright new world. He cried, but not for long. He was observant and interested and of course – worn out. They gave him to me right away and let me hold him and James had the best view, right there staring into his beautiful face. His Apgar levels were near perfect. I really don’t remember too much after that. By God’s grace, the rest of the process went well and there were no health scares for me. Later, James and I both admitted we were worried about hemorrhaging for me after. We hear such scary stories and you just don’t know what will happen.
Jaxon was born at 11:16pm. It was a long day to wait for him, and completely worth it.
Thankfully, our hospital was allowing 1 visitor per day. So the next day, Saturday, my Mom was able to come up. We anticipated being there until Sunday, though not sure when we would check out. So Saturday was planned for my mom and Sunday for my mother-in-law. My mom arrived Saturday mid morning. She graciously brought me my first caffeinated coffee in MONTHS and my favorite breakfast sandwich. The night was full of regular check ins, figuring out nursing, and some sleeping. As you can imagine, everyone in that room was exhausted.
At our hospital, they have a delivery ward wing and another recovery wing. If there are no delivery complications, you move to the recovery wing fairly immediately (otherwise, you stay on the delivery wing). We moved after midnight to the other wing and settled in, hoping for some decent rest.
Saturday we met one of the pediatricians from the office we chose (he was not the one we had chosen for Jax, but was the one on call and a senior partner). He said things looked good and they were still going to check a few things. That he breathes quickly and they had some more standard checks to make.
All the nurses on each wing were terrific. We were constantly in great hands. On Saturday afternoon/evening, we met our night shift nurse. As random as it is, it turns out she is a far cousin of my father-in-law. Crazy small world. She was the one to take care of me and Jax that night. She gave us the option to have Jax go to the nursery until a feed was needed. We agreed since we’d had him the first night and since we’d have him for every night thereafter, hoping to get some rest. He would be returned to me around 4am for another nursing.
I’m not certain of the time, but I believe it was around 3am or so, our nurse comes back in. I think it’s 4 and time to nurse, but she states that we need to be transferred back to the wing where we gave birth. She said that Jaxon needed a Children’s Mercy consult. Some of his levels were too low while others were high. The way she phrased it, we couldn’t get the consult without going back to the other wing. So I just saw it as a formality because the PICU was on that wing and all Children’s Mercy consults took place there (so she explained). James will say that he immediately knew something wasn’t right and had this fear. I honestly didn’t go there and just thought she was saying this was a formality to be checked for good measure. Keep in mind we were also woken from a deep, desperate sleep so we were a bit discombobulated anyway.
Three nurses came into our room then and packed us up. I should have seen their hurry as a sign as well, but again – I’m just a bit sleepy and thought they were merely being helpful. They loaded us up and wheeled me and our things back over to the delivery section where the PICU was located. They had already taken Jaxon there for the consolation and we went to a room much like the one where I delivered.
I tried to reassure James as I could see he was quiet and internally concerned. I’m not sure how much time passed, but someone came into the room and began to explain more. Jaxon was jaundiced and his platelet level was very low. They had been monitoring it and it kept lowering each test, which is one of the reasons they began to move quickly. It wasn’t rising. There were other factors as well but I am paraphrasing as there was a lot of information kind of thrown our way and it was very early in the morning. She said there is something that it could be, and that is what the consultation was going to help uncover. There is a Doctor who partners with Children’s Mercy and she makes the call on if a child needs to be transferred for more intensive care. She was assessing him while we were getting the initial rundown. They needed to do their exam on Jaxon, and once they did, they would take us to the PICU to see him and to talk with the consulting Physician.
The Doctor who was prepping us in our room spoke about platelets and how they should be at a certain level for healthiness and that Jaxon’s were too low for their comfort. [Brief explanation: platelets are small cells in the body that are responsible for stopping bleeding in our bodies.] I asked what that meant and she explained that one of the possibilities could be that it has to do with the fact that I have the Rh negative blood type, while James has a positive blood type. During pregnancy if you are a mom that is RH-, they give you a Rhogam shot and another after delivering, as part of the prevention of possible complications due to differing blood types between mother and baby (this is if the Dad is not a negative blood type). [For more on Rhogam and mothers who have a negative blood type that could differ from their baby, click the link above.] If that is the case, what’s happening is that my blood was kind of attacking his system and preventing the control of internal bleeding. Hence the low levels and various other issues. She explained that Jaxon would be transferred to Children’s Mercy and said that I would need a second Rhogam shot and that my Doctor would come see me once more. If all was well, I could be discharged so I could go with Jax to Children’s Mercy rather than have to be apart. She said the Doctor isn’t usually in this early, but would be in very soon and they would have her come to me first to expedite my discharge paperwork and process. I finally start to grasp that this could be something more serious.
We were finally able to head into the NICU with our masks and see our son. They prepared us that he’d be hooked up to some monitors and under the light for the jaundice. We head into our little corner and see him. They wrap him in a blanket and I ask if I can hold him. They have two chairs for us and we’re just looking at our son and both start to cry a little, wondering what’s going on.
The consulting Physician – a very gentle, kind woman – comes to answer our questions and provide her assessment. She says she does believe it to be NAIT. NAIT, she explains, stands for Neonatal Alloimmune Thrombocytopenia. It’s a blood related disease that can effect expectant moms and babies. NAIT is caused when the mother’s and baby’s platelets become incompatible, a condition known as platelet alloimmunization. This would mean that my body forms antibodies (a protein substance that reacts to unrecognized proteins in the body) in reaction to antigens that are different from my own (so mine would react to the baby’s, since his are different). Since it can pass from mother to baby, when baby has risks from this, that’s when NAIT comes into play. She says that Children’s Mercy will need to confirm diagnosis as it takes a few tests. Jaxon would need to go right away and they had already called the transport team who would come to get him in a special ambulance. The team actually shows up as we’re still speaking. I start to get dread in my heart and I ask her if it is NAIT, what does that mean and how can it be treated. She explained that it takes transfusions of blood to regulate his body and to get his platelet levels back up. She said it could take a few rounds, but that if it is NAIT, then after that there is no more treatment necessary. It would be fully resolved and he would be well. Hearing that, we all start praying it is NAIT after all and not anything else. If something else instead were the cause, it would mean many more tests and possibly a longer time to discover what is wrong.
The team arrives and I start to cry. We pray over him for God’s safety and protection. I wanted to have our picture taken because I didn’t know what would happen next and I wanted a family photo. I can’t explain it but I needed it to happen. We were wearing masks and he was listless and groggy but the photo exists and I’m grateful. That photo is private, just for us, but I will share the one of him in our arms before he was taken. The team took him from my arms (James was able to hold him before he left) and put him in the transport infant bed. Seeing him in the incubator bed was so incredibly hard but Jaxon was calm and they knew what they were doing. They were very kind and I knew he would be in good hands, even though mine weren’t the ones holding him for now.
We get back to our room and James starts to grieve and process what is happening. I am there for him and go into manage mode. We are a great match for one another. He processes major things right away while in a crisis I go into focus mode and am calm and organized and do the tangible things to get from point A to point B. I fall apart later, when things calm down a bit and the danger isn’t as eminent. So we are able to be there for each other when it is our individual turn to fall apart a little.
Liberty Hospital was amazing. Everyone moved at record speed to get us the paperwork, Jax’s temporary birth certificate, the Doctor comes to examine me and I get my second Rhogam shot and she signs off on my discharge. We are maybe an hour behind Jax or less and that is a testament to the amazing team at the hospital doing everything they could to get me out of there. It’s sunrise and we head to Children’s Mercy in downtown Kansas City. It’s about 30 min away from where we are, though the absence of traffic makes it seem faster.
I could go into much more detail, but I’ll need to save that for another post. There is just so much involved but to fast forward quite a bit, Jaxon did end up having NAIT. The antibodies I described earlier that my body was producing, caused Jaxon’s platelets to disappear from his blood stream, resulting in a low platelet count (aka, thrombocytopenia). He needed a couple of transfusions to get his levels up. He would be on light therapy for the jaundice and have tubes in many places delivering the meds and treatment he needed, including a port in the head which was the hardest for us to see.
One of the greatest risks of NAIT is internal bleeding, but more dangerously, bleeding on the brain. To give you more insight into the possible dangers, in about one fourth of cases, the baby can experience spontaneous bleeding into the brain; in about one third of these cases, this leads to fetal death. To be honest, we were never told that there was risk of death with NAIT. We knew the risk of the bleeding on the brain and I’m sure had the condition worsened, they would have explained that to us, but not knowing that at the time…ignorance was better, I’ll just say that. The number one factor they needed to assess immediately was if Jax did have bleeding on the brain. That is where our heart stopped. From the time they told us that risk to the time they told us that thank goodness Jax didn’t have any brain bleeding, was the longest wait. That may be the first time I exhaled fully, when they gave us those miraculous results.
All in all, we would spend 4 days in the NICU at Children’s Mercy.
We were enormously lucky. When you’re a parent in the NICU, you see so many other parents. Some whose journey there has already been months. The star baby of our floor (who was just behind where Jax was stationed) had been there his whole life, and he was 6 months. (I say he was the star because you could tell he was a nurse favorite. He was so full of smiles and loved to play. He caused James and I to smile on more than one occasion with his sweet demeanor.) We fully understand how fortunate we were. A kinship forms immediately when you see other parents in the elevator with the orange bracelets. It is a scary place but with amazing nurses and doctors who tend to your child around the clock. We loved our nurses. They took such wonderful care of Jax and would comment on his beautiful eyes when he was able to have them open.
We are eternally grateful that what was wrong with Jaxon was manageable and that the treatment plans were successful. Each day was long and difficult and took so much out of us but again, we were only there for 4 days. It felt like so much longer but in no way does it compare to the parents and families who have much longer stays. I feel inadequate to have our blessing of a short stay and wish no one had to be there long. It is a lot of complex emotions that I still unpack, even months later.
We were able to hold Jax each day. We would go in the morning and leave at night when it was time to sleep. We each had skin to skin time and I fed him while they supplemented with formula to make sure he had enough (and to supply during the night when we went home). We made that square space our home for those long days and our team of diagnosticians and doctors and hematologists were so terrific. They would round each day and give us all the information they had while going over the treatment plans and tests. He received donor platelet transfusions at first since immediate action was needed, but the other plan would be to use my platelets for a more direct transfusion. I know it seems counterintuitive since my blood is what was attacking him in the first place, but it would also be the solution to correct the internal fight that was happening (Jaxon has his Dad’s blood type, not mine, which is why my negative RH was causing an issue for his positive blood).
To give you a slight understanding, platelets are regarded in the per hundred-thousand range. So if someone’s platelets are 150, they are actually 150,000. A healthy platelet count can range between 150 to 400 (again, that’s symbolizing the hundred-thousands, they just use the first three numerals to give the level). Jaxon’s platelet count was 15 when he was transferred to Children’s Mercy. That provides some insight into the seriousness. Fifteen. Dangerously low.
Each day, they would test (after transfusion) and they would test usually twice a day if possible. It would raise a little (to 25 and then 30), but then fall back down (to 10). Jax couldn’t have successful treatment if his levels wouldn’t rise much higher and more importantly, stay there. The day we were discharged he was gloriously at 130 (the minimum they would allow it to be to consider discharging us) and it had been for 24 hours. It was a great day when we were told of his risen numbers. They were finally on track and holding.
We would continue to have him tested even after we took him home. If the levels fell again, we would do more transfusions. It would be possible that he would need more, but they would resolve just like they had before.
There was a day after we had taken him home where we saw the warning signs again that the levels could be low (markings on the skin), and our pediatrician wanted us to have him tested right away (this was at his initial check-up visit). So that was a scary day, but they rushed the results and he was still showing great levels. We would be instructed to test again next month for precaution, but if all was well, we’d never have to go back.
By God’s grace, we never have to go back. We’ve fully moved from any danger related to NAIT and he is thriving. It took him a while to gain weight and he was under the 1 percentile for the first 3 months of his life. Yesterday was his 4 month check up and he is finally out of the 1%! He is in the 3% but that is honestly great progress and we are all very happy with how he is growing.
It is a TON of information and my brain is pretty tired from recounting it all. I may have been able to make the post more cohesive but this is real and raw and I hope it helps convey a little of our story.
Two good resources to learn more about NAIT (what helped us during that time) is the website NAITbabies.org and the Cancer Therapy Advisor (no, it is not Cancer, but they actually had great information on NAIT). If you google NAIT diagnosis, you also can find out more.
We will forever be indebted to the amazing Doctors, Nurses, and Specialists at both Liberty Hospital and Children’s Mercy. Children’s Mercy saved the life of my nephew (more than once) and they saved the life of my husband when he was a baby (he had his own very scary start to life but thank God he got to stick around on this Earth). They mean more to us and our families than we can ever fully describe. They saved our Jax. They gave us our family and our future. As did Liberty Hospital. They caught it and acted swiftly. We can never thank either hospital enough.
Feel free to ask me questions. I have no problem talking about it now and what little I learned in our process, I’m happy to share. I may do a more in depth post about NAIT and Jaxon’s recovery, but for now, this is sufficient I hope.
We had so many people praying all over the world and we are indebted to the body of Christ for their hero work in intercession. Prayer matters. I’ve seen time and time again the honest miracles of prayer. I believe it is so powerful.
We love every day we have as a family. Jax is our miracle.