Monday, May 30, 2016

The Aftermath (long post)

The day C was born was magical; beyond compare. I was floating above the clouds; the sun pierced my every pore and I exuded joy and happiness.

We came home that same night, five hours after he arrived. Life was simple and fantastic, surrounded by family and takeout and hearts full of gratitude for this tiny new person. T and C and I slept together in our bed, curled belly to belly and heart to heart. The next morning, a nurse from the birth center came for C's checkup. His weight looked good - he had only lost a couple ounces off his birth weight and the nurse said he was doing well. 

At the birth center, blood was taken from his umbilical cord for routine testing. One test result came back very quickly, while we still were there. Our nurse came in and explained that his blood was something called "Coombs positive", and also that his blood type is A, but his Rh factor was not determined due to the Coombs. She was as puzzled about this mysterious result as the rest of us, but T and I had never heard of a Coombs test and weren't familiar with what it really meant. The nurse explained that it would put C at a higher risk of jaundice. We still didn't understand exactly what the Coombs was, but jaundice is fairly common and no big deal in newborns, right? Little did we know. 

So the nurse at his 24 hour visit drew a bilirubin test and sent it to the lab. That evening, one of the midwives called to say that his bili level was elevated, and that we needed to follow up with his pediatrician ASAP. We already had an appointment scheduled the following morning, so we figured we could get it rechecked then. 

Friday morning, my parents drove back into town and to the rescue. They stayed with E while we drove across the city to our new pediatrician's office. You see, this was our first experience with the new ped, since we were moving imminently and wanted the new doctor's office close to our new house. We just hadn't actually moved yet. 

The ped's waiting room was swamped. Our carefully researched and chosen doctor was on vacation, so we were scheduled to see his nurse practitioner. We waited an hour to be taken into the exam room, and another twenty before she actually came in to see us. They clearly were understaffed and had a lot of sick work-ins from over the weekend, as our state was number 1 for flu that month. Let's not beat around the bush, here: this first visit was an absolute shitshow. I was ready to find a new pediatrician's office after it.

The front office staff had none of our information on file, despite T having given it to them TWICE over the phone. The NP was extremely unprofessional and immature - unable to navigate the office's software system, and then she slid in a self-deprecating joke about having Down syndrome. They couldn't find C's bilirubin result from the day before, despite the birth center having faxed it over. They wouldn't allow us to simply leave and get another level drawn, despite the fact that the NP told us we were going to need another draw no matter what the previous bili level was. We tried calling the birth center to have them re-fax, but they were on lunch for another twenty minutes. We ended up waiting that twenty minutes for the office staff to flounder around and still not find the result, then we called the birth center again right when they reopened after lunch and they faxed it immediately. 

The NP said the level was extremely high and acted as if C was in imminent danger at that very moment. This was in direct contradiction to the "moderately elevated" result we heard from the midwife who had called the previous day. I had zero working relationship with this NP or with this office at all, so I was very suspicious. We went to the hospital for a STAT bilirubin test and the NP promised to call with results.

By this point we were very late for a final walkthrough on the house we were purchasing (Big House), and the agent and my parents had already been there for some time. I was feeling frazzled and blindsided. I hadn't realized that this bilirubin thing might actually land us in the hospital. I was so upset by the poor handling of things from the pediatrician's office that it was difficult for me to believe that there really could be a problem - I wanted only to believe that the ped's office staff were being overly alarmist. 

We finally made it back to our house. This whole week, E had a low grade fever and was complaining her ears hurt. Typically, we let ear infections run their course naturally, but she still wasn't kicking the infection, so T took the opportunity to take her to the Walgreens Minit Clinic for antibiotics. While they were at Walgreens, not only was our 3.5 year old daughter diagnosed with bilateral ear infections, but T got the call from the NP that we were being admitted to the hospital for the baby's hyperbilirubinemia, and we needed to get there immediately. She texted me the room number and instructions for being directly admitted. 

I was in a daze. I'd given birth two days previously. Our house was halfway in boxes, my parents were only visiting for the day, and I needed to throw things together for C, T, and I to go to the hospital. We didn't even know how long to expect we'd be there. We didn't know what to do with E while we were there. My parents graciously packed up things to take E for the weekend, then my mom got in the car with me and we drove to the hospital. T was at Walgreens still, waiting for the prescription to be filled and sobbing that our tiny new baby and I were at the hospital while she was stuck at the pharmacy. Finally they got her the meds, and she hurried home and packed E away with my parents for the weekend. Definitely not the strong, confident goodbye you want to wish your toddler while she's not feeling well and she's just become a big sister. 

I carried the baby in his car seat into the hospital by myself while my mom parked the truck. I carefully set him on the floor of the hospital room we'd been assigned as nurses bustled in and out, getting things situated. I was introduced to three or four nurses, as we were arriving close to shift change. We were in the Pediatric unit, and only one nurse there was familiar with "bili babies", so there was much confusion as to how his vitals should be taken and what things could be stuck to the baby while he was under the phototherapy lights. He was undressed and examined first by a nurse, and then by the pediatrician on call. A different phototherapy bed was wheeled in after the first was deemed non-functioning. My mom and I took turns holding him tightly to our chests - if we could just hold him close enough, we would surely awake and this all would have been a nightmare.

I looked down at his sweet sleeping face and felt his warm weight in my arms and I just cried and cried. What was wrong with my beautiful baby? The thought of having to blindfold him and place his tiny and nearly naked little body in the phototherapy bed was more than I could bear. He should be with his mothers, not cold and scared and alone in a hospital bed. Surely all this was overkill. Doesn't jaundice often resolve itself with plenty of breastfeeding and sunlight? 

My mom wrapped her arms around my body as I was racked with silent sobs and her tears and mine mixed on our cheeks. We had just managed to calm ourselves when T came in. I looked at her and lost it again. We sat together, crying and holding our newborn son as the on-call doctor came in and asked, "Is this a good time?" 

I couldn't help but give a choked laugh. "It's as good as it's likely to get." I croaked. To his credit, he must be accustomed to hormonal and emotional mothers, because he came in and was the very model of quiet confidence. He told us the plan for the next six or so hours, gave a short explanation about our blood types being incompatible, and left us with a nurse who was going to do the blood draws to get the whole thing going. 

Somewhere in there, my mother found the inner fortitude to leave us and the baby in the care of the hospital. After all, she had her granddaughter to care for and they had a 2 hour drive in front of them. I don't know how she did it, but in hindsight I admire her for being able to hug us tight and tell us she loved us and then leave. Thank you, Mom, for being what we needed, especially when I know it had to tear your heart from your chest. It's tearing mine out right now just thinking about how you must've been feeling.

After a traumatizing 30 minutes in the treatment room with 2 nurses trying to draw C's blood, we finally ended up back in his room, ready to settle in for the evening. It was already getting late; the baby needed the phototherapy.

I hated every single second that he lay in that phototherapy bed. I despised every moment he had to wear the blindfold to protect his eyes from the bili lights. My body ached for him. My heart broke open each time he cried and flailed around, looking for one of his mothers.

But somehow, we made it. In the early hours of the morning, a nurse came to do another bilirubin heel stick. Poor C had to have so many heel sticks, his little feet looked like hamburger. Around 5am, the test result came back that his bili levels had gone down enough that he could come out from under the bili lights. I cried tears of relief and happiness and wept as I watched T curl the baby up on her chest and sit, reclined, to hold him so I could catch some sleep. The hospital will not allow bedsharing, so she sat up and held him rather than lay him in his bed. Of course, this meant that T didn't get to sleep, but I think we were both so filled with gladness that in the moment, we didn't care. The next morning, she realized the price she paid for the lack of sleep-- she had caught E's cold.

We got released from the hospital in the afternoon, and went back to our little house across the street. Realization that life hadn't stopped while we were gone hit us as we walked through the door to a huge jumble of boxes and packing material, laundry and dishes and paperwork from both the birth center and hospital scattered around like leaves during the autumn. I'm not sure where T drew the inner fortitude from, but she took a deep breath and dove right back into packing. We'd lost 2 days of the time we had devoted to getting moved.

My parents arrived back with E later that afternoon, and she was out of sorts. She was nervous and unsure of things - our family was in emotional upheaval as well as preparing to leave the only home she'd ever known. I'm so impressed with that little girl, who came home without knowing what she was coming into. We had dinner together and did her normal nighttime routine and she settled right in.

The whole time feels like a jumble in my brain. Some of the timing of things is really difficult for me to remember. But I do know that we absolutely could not have pulled it off without the exceptional support network we have holding us up. T's parents spent a whole day packing up our kitchen while we were in the hospital and moving boxes into storage. My dad helped pack and move boxes as well. When it came time for the last day in our Little House, I readied an overnight bag for E - she was going to stay the night with T's parents, since our houses didn't close on the same day. Little House was set to close the 23rd of February, and the Big House was to close the 24th, so we had one night where we had to get a hotel room, and E slept at her grandparents' place. We packed a bag for ourselves to go to the hotel. I was nursing C as T's crew of coworkers arrived to help get all the furniture packed into the box truck. I finished feeding the baby, bundled us into my car and left all the work of moving in the hands of T and her crew.

I got us unloaded into the hotel room and tucked into bed, but sleep was elusive as I thought about T and how much work was left for them to do. I woke at 4:00 am, when T slipped silently into the suite and curled up behind me, one hand on our son who lay at my breast. She whispered the story of  her night quietly into my ear. My heart sank when she admitted that there still was a lot of work left to finish. The crew had gotten the box truck packed, floor to ceiling, and yet there were still more boxes to move, plus all the assorted leftover things like yard implements left at the Little House. She rested for a short time, then got up again and exchanged our SUV for her parents' pickup truck at 5:00 am to make a few more trips to the storage facility.

At 7:35 am, she came and picked me and C up from the hotel. We had to sign all the loan documents at the title company at 8:00 am. We did have one piece of luck - C slept through signing documents on both houses and the complications that came with it. That was as much luck as we would get that day.

While signing the Little House docs, our realtor got a phone call from the buyer's realtor.
"You guys are all moved out, right?" she asks us.
"Almost... there are a few things I just couldn't fit." T admits.
"Okay, but you are going back for them, right?"
"Yes, we're going back there as soon as we're done here." T affirms.

It turns out, before the loan even closed or recorded, the buyer's realtor was checking up on us.

Another complication arose when the loan officer informed us that we owed $19.00 on the house we were selling. No, they couldn't accept a credit card, only a check. Which we didn't have, since we were in the in-laws' truck instead of one of our own vehicles. T had to go to a grocery store for a freaking money order. The silver lining for her was that she could finally get cold meds since another night without sleep had left her in even worse shape.

Lastly and most horribly, while we were signing the purchase contract on Big House, I noted that ours were the first signatures. I asked the realtor how the purchase worked when the sellers didn't live in the continental U.S. She replied that they'd email the contract, the sellers would have to sign with a notary and overnight the contract back. I asked if that would delay the closing of Big House, and the title agent nonchalantly shrugged her shoulders and said, "Yes."

I think T just about lost it. "When were you going to tell us? We have a UHaul rented for only one night! We're staying in a hotel WITH A NEWBORN and we only reserved ONE NIGHT!"

We were dumbfounded that all the professionals involved in this transaction somehow missed that the sellers should be signing first, since they live in Hawaii and could sign the contract anytime.

Our closing was delayed by one day. T called and reserved a second night in the hotel room while I called UHaul and crossed my fingers that the truck that housed most of our possessions wasn't reserved for the following day. Fortunately, it wasn't and we were able to extend the rental.

We were angry and disappointed with the way this all went down, especially since we ended up having to spend quite a bit more money in the process than intended.

We told ourselves, "At least this is over with, and now we'll get a whole day to relax and do nothing until we can move in." Little did we know.

After signing the contracts, we had to go and have another bilirubin level drawn from C. Then we went back to the hotel and T slept awhile. She had gotten up and we were sitting together on the little couch, watching TV, when my phone rang. It was the pediatrician. This was actually the first time we'd spoken to our chosen pediatrician, and it was not the news we wanted. Not even a little bit.

"I know you don't know me, but I want to tell you that I'm typically pretty laid back about test results. Unfortunately, C's numbers came back pretty elevated, and I want him admitted back into the hospital."

I don't even have words to describe how I felt in that moment. Different levels of comprehension kept crashing over me, pulling me under the waves. He told me that not only was his bili level elevated, but it was higher than it had been before the first hospitalization. It was the highest value he'd gotten yet. Last time, I was annoyed about the pediatrician's office being overly cautious and resentful about being separated from my son.

But this time... this time I'd done some more reading and research and I knew that this time, it was serious. Terror gripped my heart as I looked down at my sweetly sleeping little baby and I allowed myself to consider for the first time what it might be like if we lost him. Due to the blood type incompatibility, he was getting worse. Bilirubin was building up to near-toxic levels in his body, and if those levels reached a certain penetration into his brain, it could cause permanent damage.

Between 2 hospital stays, 2 midwives, 3 pediatricians, and countless nurses, the exact cause and type of our blood incompatibility is still somewhat a mystery. The broadest base of understanding states this: somehow, my blood came into contact with his blood and recognized his blood as a foreign invader. My blood manufactured antibodies to kill the invader off, which meant that my antibodies were in his bloodstream, lysing his red blood cells and causing anemia and jaundice.

My blood type is O and my Rh factor is negative. His blood type is A and his Rh factor was unable to be determined. Incompatibility can be between actual types or between Rh factors. Say for instance his blood type is A positive (which is statistically most likely), my blood could have reacted to either the A or the positive Rh. Since I do have a negative Rh factor, I received 2 Rhogam injections to prevent future issues with positive Rh babies. I still don't know if there is a way to test which kind of incompatibility we ended up with, but everyone insists that it couldn't be an Rh factor incompatibility due to my Rhogam injections. No one was able to offer an explanation as to how our blood would become sensitized, either, since in order for the mother's blood to mix with the baby's blood, a traumatic event is supposed to happen during the pregnancy - which one did not. 

So, from our hotel suite, we packed yet another hospital bag. Wryly, T remarked how fantastic it was to pay for another hospital stay AND another night in our hotel room where we would not be sleeping. Feeling scared but having at least some baseline expectations about this hospitalization, we brought C back to the Pediatric unit.

We quickly learned that expecting a 7 day old baby to lie in the phototherapy bed for hours on end is much more challenging than asking a 2 day old baby to. We had to witness 3 different nurses attempt to set an IV on our tiny baby, the final success being set into his scalp after I personally had to restrain him so a NICU nurse could set the line. This time, phototherapy lights alone were not going to be sufficient. Luckily, we ended up with the same on-call pediatrician who had us before, so he knew our situation. He moved immediately to an IV antibody transfusion, which would combat the antibodies killing C's red blood cells. Because of all the procedural crap we had to get through first, the IV transfusion took place in the middle of the night. The treatment can occasionally cause a severe anaphylactic reaction, so C had to be very closely monitored during the transfusion. The liquid itself becomes cold as it passes through all the IV tubing, and when it entered his blood stream through his scalp it must have been really chilly for poor C, who was wearing only a diaper and expected to lie still in his phototherapy bed while cold fluid gets pumped into his veins. He was so upset; he screamed the whole time. T sat with him and stroked his arms and legs, she spoke softly to him and held his hand, but we both knew nothing could fix it other than the end of the treatment.

The night nurse we'd gotten this time around was terrible. She made the experience exponentially worse. She was uncertain of several protocols and procedures. She told me C was spoiled, had a temper, was such an angry baby! When I was trying to nurse him during his transfusion (amid forty thousand cords and tubes, blood pressure cuff and pulse oximeter) he was so upset he couldn't calm himself down enough to nurse. The nurse wanted to know if I wanted her to hold him so he would calm down. I was so taken aback by this woman who routinely made my newborn sound like he was throwing a tantrum. All my patience and understanding for the night was shot; gone.

Coldly, I snapped at her. "Why do you think being held by an absolute stranger would calm my traumatized newborn? Of course you aren't going to hold him."

Finally, after 2 hours, the transfusion was finished. As soon as the nurse took the IV antibody bag away, I ripped off his blood pressure cuff and pulse oximeter and all the leads adhered to his body and held him close to me. I felt his body calm down; felt the tremors and hiccups leave him as I rubbed his back and whispered my love into his ears. T and I cradled him close and bathed him in our tears and our kisses.

This hospital stay was torture. We ended up staying two days and two nights, waiting for his body to respond to the IV treatment. I detested laying him in the phototherapy bed, hour after hour. He was infinitely harder to calm down, harder to get to sleep beneath the lights, harder to keep his blindfold on. He became harder to nurse. Our breastfeeding struggles began during this hospital stay.

On that first evening, I got a text message from my brother, Hayden. He knew our closing had gotten delayed, and he also knew that our realtor hadn't yet managed to procure early possession of Big House for us. The delay meant that the people who helped T load up Little House weren't going to be able to help move into Big House as planned, so I'd put out a call for help via Facebook. At this point, T was looking at trying to move everything herself and we were panicking on several fronts. Beyond that, we weren't even sure when we would be able to get keys, because the title company was waiting on the contract to show up and then the loan would have to record before Big House was officially ours.

Back to Hayden's text: He told me he planned to pick up our dad early the following morning and drive straight to the realtor's office to get us early possession of Big House, and then they were going to help get all our things moved in while C and I were in the hospital. I called him back to talk to him; thank him. His voice was gruff and thick with emotion. I could tell he was very upset about C's being in the hospital, and he was irate that our realtor had let us down. He couldn't make C better, but he could get our move taken care of. Hayden told me that he and Dad were going to get us possession come hell or high water, and the realtor was going to regret not doing a better job helping us.

Knowing that T would at least have help the next day made me feel some relief. Then we found out that a couple of people from T's crew at work would also be able to help, lessening the burden further.

Sure enough, the next morning my dad and Hayden drove into town. While on the road, the realtor's office opened and my dad proceeded to start calling her. He told her who he was, and that he was going to be in her office within the next hour unless she could find a way to get them keys to Big House. After all, the documents were all present, loan already complete, just waiting on the recording. There was nothing at that point that could stop the house from becoming ours officially. He hammered her about why she didn't press the seller for early possession, why they didn't insist the sellers sign the contract early and prevent the delay in closing. At the end of the call, she simply gave my father the code to the keybox still attached to the front door. Dad called T and told her to meet them at Big House with the UHaul. Dad, Hayden, T, and several of T's crew spent the day moving in.

In the meantime, I tried to keep myself distracted. T had enlisted the help of our lovely friend Katy, who showed up at the hospital with ice cream in hand. She spent the whole afternoon with me while C screamed and I cried as he tried and failed to latch and nurse. She even fed me ice cream while I held the baby. My mom left her job that afternoon and also drove the 2 hours into town to help keep me company. When she arrived, Katy left.

I'll always be so grateful to everyone who helped my family that day. I badly needed the company, as I was so disheartened with C's newfound struggles with breastfeeding and still having to be under the phototherapy lights.

T and everyone finished up getting our things into the house, and brought dinner to the hospital room. That evening, we sat together and I got to hear the stories from moving. I smiled and laughed and ate and began feeling a bit better. We had our new house. C's numbers were falling, and the doctor planned to release us the next day.

The following afternoon, T went and picked up E from preschool, then came to pick us up from the hospital. Discharge papers in hand, I loaded C into the car and we began the 30 minute drive to our new home. Both kids fell asleep. As we pulled into our new garage, I saw our things were already put away inside. This was OUR garage now. I carried C inside as T carried E  inside, still asleep, and we sat down on our sofas inside our new house together, the first time as a family of four.

It was the most surreal thing. I was sitting on my own sofa, in my new house that already had all the furniture moved in and placed per my wife's directions. It was my home... my things... but I had no idea where anything was.

Never before had I had literally zero involvement in moving. Even as a kid, I would at least help pack my own room. But when we began packing, I was feverishly finishing my online program, and when T finished packing, I was giving birth or in the hospital. I was not permitted to move boxes or furniture in my extremely pregnant or immediately postpartum condition.

Overall, the whole thing was the most strange and enlightening experience I've ever lived through. From the high of C's birth, to the low of his hospitalization and all the insanity between, it was the most emotional week of my life.











We're home. C is healthy and growing. We're happy here, together. And we're learning our new home and our new family. 

2 comments:

  1. This story made me want to sob. I remember the events but had no idea the hell you were going through. I feel so badly that we weren't there for you. You are two incredibly strong women.

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  2. You are an amazing woman who I am proud to call my friend! You have a beautiful family and will continue to thrive in your life with love and respect for each other and raising your amazing happy children.

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