Robert Isaiah

So, I want to start blogging again, but feel like I can't just start from the middle, and I need to share the happenings of the past months. Many of you know a bit about Robbie and his journey, but I wanted to give you an opportunity, to read about his short, miraculous life thus far. During his struggles I tried to write a journal, I tried to record how I felt and what was happening, but in the middle of my first entry, I struggled to determine which tense to use when talking about him. I realized I couldn't write it down, not then. So now that the proverbial storm seems to be passing, I tried to recount, and record everything I could think of so the story was complete. I am missing bits here and there, but did my best. Its very personal, but I felt like I needed to share it because of the love and support from so, so, many people. It feels like everyone I know, people I don't know, people who are friends of friends, came together and kept Rob and I above water through this whole thing. So it is because of that, I am sharing this.

To start, this is a text I sent to my family on July 11, 2012 at 1215am:
"Before I left tonight-in a matter of an hour I felt as though the prayers, blessings and love directed towards sweet Robert Isaiah were transformed into a tangible strength that seemed to fill up his whole body. His eyes opened, his cheeks were full, his face was pink and he looks like he has been brought back to us. He is so strong. I know he has angles at his bedside."

-I found out I was pregnant while Rob was out of town. He was out in Utah  jeeping with family. By the time I found out I thought he would be a long way up the mountain with no service by the time I called. I called everyone in the family and finally got a hold of him. I said “Don’t react...I’m totally pregnant.” *Silence* I said, “are you okay” and he responded with, “yeah, just nervous.”

-I found out it was a boy when I was at work. I couldnt wait any longer and I didn’t think Rob would care. I brought him a balloon home that said “ITS A BOY!” He bent his knees and looked to the sky and with a few powerful fistpumps exclaimed, “ITS AN HEIR!!!!”

-At my 20 week ultrasound they were 4 hours late with my appointment so Rob had to leave to go back to work. I went back and the tech was very careful to try and show no reaction to what she was seeing but I knew something was wrong. She told me to wait and the doctor would come in to talk to me. After studying the screen he began to explain to me that the boy had an enlarged right kidney as well as an enlarged bladder. He explained it could be due to an obstruction but it was unknown as to where the obstruction was. He said this condition could result in permanent kidney damage.

-The OB that I was seeing reassured me that he had seen many cases similar to mine and that he did not foresee this being an issue. He told me that it may in fact, “resolve on its own.” All the same he referred me to a neonatologist, Dr Reiter, to do a follow-up ultrasound. Dr Reiter performed a level three ultrasound and explained to me that we would have to watch this very closely. The amniotic fluid, which is comprised of the baby’s urinary output, was in danger of decreasing depending on the severity of the obstruction. Thus began an extraordinarily long process of “watching and waiting.” I had multiple appointments a week and there was discussion of surgery in utero, early delivery, etc. Eventually my OB that I had been seeing told me that he didn’t think this was a big deal and that it was no longer necessary to see Dr. Reiter. On my next appointment I saw the OB’s partner because he was out of town and after looking at the ultrasound thought it best to send me back to Dr Reiter.

-Dr Reiter assured me that this would not be resolved on its own, surgical intervention would be necessary and that there was no way to know how severe it could be.

-Throughout all of this Rob and I prayed and prayed. Rob gave our little boy a blessing saying that, “He would come out to his momma safely,” and that “your mom will know how to take care of you.”

-People used to tell me to talk to the baby when he was still in utero. I always thought this was a silly idea but would do my best late at night when Rob was still at work. The words and thoughts that always came to my mind were that he would be such a good boy; that he would always love God. It wasn’t a revelation, just part of my stream of consciousness as I talked to him and told him about life. I didn’t know how much those thoughts would yet mean to me.

-My amniotic fluid levels remained stable the entire pregnancy. The assumption being that the obstruction could not have been so complete as to not let any urine pass. Part of me hoped that would mean that he would come out healthy with no problems at all. That maybe my OB was right and the issues would be resolved.

-Dr Reiter told me I needed to have a consultation with the Urologist, Dr Jones. Rob and I went to see him and he told us that he thought both of the kidneys seemed to still have their kidney-shape (which was a promising sign) but that surgery was probable. He made the arrangements for me to deliver at the Pavillion which is connected to Texas Children’s Hospital, where he would do the surgery (also one of the top children’s hosptials in the nation). Rob and I then decided that we wanted Dr Reiter to be the one to deliver me since he seemed so much more proactive the entire time.

-At 35 weeks Dr Reiter gave me Celestone, a steroid shot given to help boost lung maturation, as he expected my amniotic fluid levels to decrease leaving delivery as the only option.

-At 37 weeks Dr Reiter determined it was time to induce and the delivery was scheduled for June 13.

-The delivery was perfect. They broke my water fairly early and started me on pitocin. The neonatologist came to the room and introduced himself and explained that the baby would be taken over to Children’s fairly soon after delivery. Robbie was born at 1647 after only a few pushes.

-The doctors immediately took him from me without getting to see him. Rob was still standing by my side still looking shocked by both the delivery and by cutting the cord (which I think he might have closed his eyes while he did it). I told him to go see him and tell me if he was beautiful.

-I’ve never seen the look Rob had on his face before. He stared downward and had one hand on his mouth. It was love at first sight.

-One of the nurses yelled out, “he peed!.” I immediately thought that maybe all of the precautions we had taken were for naught. I thought that maybe he would be fine after all, that rushing him to the NICU would probably just be a precaution and probably overkill since he would be fine.

-When they handed me Robbie I let out a few sobs/laughs. He had existed inside of me and I had loved him since I knew he was there, but after I saw his face and held his tiny body I didn’t realize I could love him as much as I already did. The same second I saw him, I loved him.

-He was all wrapped up still and I had only had about 15 minutes to see him when they told me they needed to take him over to Children’s and begin the tests. They told me I could come see him when the epidural wore off. I remember thinking that I didn’t even know what his body looked like, just his tiny face. Rob went over with the neo team and Robbie and I willed myself to recover as soon as possible.
-2 hours later Rob came to the postpartum unit and wheeled me over to see the boy. When we got there they told us that we couldnt come in because they were working on a procedure. I was immediately worried and we ended up waiting 45 minutes before they let us back. When we got back they told us they had placed a catheter, and had a very difficult time doing so, because he wasn’t voiding at all on his own. I was comforted a bit by this because a catheter isnt such a big deal, it seemed manageable.

-We were in our own private room all the way in the back and there was one chair to the left of his crib that we could sit in without disrupting all of the monitor cords and catheter.

-I held him most of the night and had a hard time going back to the room. He had so much hair, he looked like a little gentlemen.

-I had no pain from the delivery. I was strong and feeling so good

-The next morning we went back over and waited for the doctors to come talk to us.

-His creatinine was 1.7. Normal is .2-.4 for newborns. They explained to us that this meant impaired renal function. They did not know to what extent and they said it was too early to predict anything. I think this was when I started to feel like falling apart. I didn’t know that i would have to keep it together for a lot longer than I had expected.

-Dr Jones, the urologist came by to discuss with us what he had seen on the ultrasound. He told us that the right kidney was barely shaped and did not resemble a kidney at all, he would be surprised if there were any function at all there. The left kidney was shaped better but not great. He added that the creatinine, being what it was, was also not promising. His words were “I’m not going to sugarcoat it, its not great.” He told us surgery would need to happen soon to begin decompressing the kidneys as it was the posturethral valve that was completely blocked. He told us that the following Monday is when we would shoot for.

-I think I held it together the whole time he was in the room and when he left I cried. I began to realize that this was so much worse than we imagined. Our sweet boy was sick, and not a little sick, but a permanent life-threatening sick.

-That night we went back to my postpartum room. I knelt in bed and I prayed. I felt a warm sensation over my entire body and a small prompting that “it would all be okay.” I woke Rob up to tell him.

-The next day was the worst day of my life. His creatinine shot up to 2.3, his potassium levels were very high (so high that at any moment he could have had a lethal cardiac arrhythmia, and he was having high blood pressures-all indicators that his kidney’s were failing). The doctors came in and spoke with us about the continued monitoring and how we wouldnt know anything for a few days, once everything settled. They discussed with us peritoneal dialysis as well as transplants. They said that the child had to be at least 10kg and “long enough to fit an adult kidney.” I cried. I cried because I let the idea that he might die creep into my mind. Then his blood pressure went sky high. The nurse told us that maybe we should leave to see if it would come down.
-Rob and I walked outside of Texas Childrens and I felt like I hadn’t seen the sunlight in forever, and I didn’t want to. I sobbed, I felt completely dead inside. I kept thinking that I was trapped in a nightmare and I couldn’t wake up. Rob insisted I try to eat and we walked to Chipotle. I sat at the table outside and watched people walk by. I couldn’t make an expression, I could barely speak. I didn’t eat and I barely ate for the next 2 weeks. I thought that I would never want to live in a world where my baby didnt live. I even asked myself in desperation if I would kill myself if God took him away from me. How could I stay on the earth without him? I had never known what it meant to really plead with God until then.

-We went back to the room and they had told us the potassium had come back down and his blood pressures had stabilized.

-I called my parents and Rob called his, they all flew out the next day. Rob kept saying that he needed his parents to see him just in case Robbie left this world. To him, he felt like if nobody ever met Robbie it wouldn’t have felt real. Somehow, he felt that Robbie had a chance if only his grandparents could know him.

-Throughout my entire experience at the hospital I knew that it was God who always made it possible, to have something positive happen before I left at night. Otherwise I would have never been able to leave. Whether it was an improved lab, weight gain, eating a whole bottle etc. Even days from hell would bring something promising by the end.

-My dad flew out with my mom and they showed up the next day. Robbie wasn’t in great shape and the prognosis was still grimm. I was so happy to have my parents there and I was grateful to Rob that he had pushed for them to come. (In my mind it seemed better to not have anyone around because I wasn’t coping, and somehow adding more people to the scenario made me feel even more stressed and overwhelmed.) Of course they loved him as soon as they saw him, discussing what a handsome baby he was. We hung out in the room for the day while my dad listened in on rounds with me and we discussed his situation and all of the different outcomes.

-That night I asked my dad to give Robbie a blessing. Mike, Rob’s brother had come and given him a blessing with Rob the day before. But since he was going in for surgery and I was nervous, my dad agreed to give him another blessing. We were in a private room fortunately and we were able to be discrete while performing the blessing. I held Robbie and Rob and my dad knelt down around us and put their fingers on his head. The blessing went as follows (as best as I can recall)-

-Robert Isaiah Anderson, I lay my hands on your tiny head to give you a blessing. You have already received an anointing through the same priesthood power-and have already benefited from these priesthood blessings in the short time that you have been here and you will receive many priesthood blessing throughout your life. Through that you will know the love of your heavenly father for you-and your parents will know it.
The doctors have been tutored and He has tutored them. Whatever is important for you-they will know what to do. Since you have been born you have been blessed by the knowledge of the nurses and doctors.
You will look back in your life and re-read the journal entries of your parents and know the love of christ.
You will be healed.
It was no accident that your mother has received the training to be able to take care of you. Both your mother and father will have an affinity to know what you need to care for you.

-Rob and I slept that night

-Our bishop came the next night to visit with us. It was just my mom, Kjer and I in the room, Rob was at work. We told him what was going on with Robbie and he listened patiently offering comfort where appropriate. Before he left he asked if he could say a prayer. We agreed and he began. As soon as he started I knew the spirit of God was in the room. He said a beautiful prayer, mimicking the words that my dad had said the night before. Sometimes, even using exact phrases. In his prayer, he did add that Robbie’s “kidney’s would be fully functioning,” and that he would be “an asset to the kingdom.” He also added a blessing on the room, that it would “have the spirit of comfort and all those who passed through would feel that spirit.” A few weeks later at church I told him about the similarities between his prayer and my dad’s blessing and he began to cry. He was crying so hard he had to catch his breath. He told me that the “words just began to flow...I was using phrases I’ve never used before.”

-Another night of rest for Rob and I.

-Robbie went in for Surgery on June 18th. He was scheduled for an afternoon surgery but we were called in the morning and told that if we could be there in 30 minutes they could fit us in. We were grateful for this because Robbie was NPO after midnight and would surely be sad and hungry all day. When we got there he was crying and we gathered around him to say a prayer.
We had the time-out with the doctor and anesthesiologist and he was prepped to move to the OR. We walked with him all the way to the doors of the OR. Rob was very stoic, while tears rolled down my face. Rob kept saying, “He’s going to be okay, remember? You’re dad said he would be okay.” I found comfort in this, but couldnt help but look down at his tiny body and wonder how it would survive all of this. Right before they wheeled him into the room he looked right up at my face. His eyes were wide and he was totally calm, not crying, just watching. When I looked back at him it was as though he was saying to us, “What? I’ll be back...I just have to go do this one thing, then I’ll be back...”
We sat in the waiting room for a few moments and then I decided I should read my scriptures instead of letting my mind wander with the possibilities of what could happen. I opened my LDS app on my phone and clicked through to a random scripture. The scripture was D&C, chapter 2. The verses discussed the priesthood being brought to the earth through Elijah. I began to cry, because I knew, yet again, this was the Lord reminding me that the priesthood is real, the priesthood blessed my son and brought so much comfort thus far...”so don’t forget it!” My mom and Kjer showed up shortly thereafter. I went out into the hallway to talk to them and tell them about the scripture. Soon after Susanne and Lyle walked around the corner. As soon as they did there was something very real about the situation. They were here, they had flown all this way because there was a chance that our baby was not going to make it. We were the people from the stories you hear about-we were the ones with the sick child. I brought them to Rob and as soon as I saw him hug his dad I knew that Rob was 100% more confident in everything that was happening. I told Susanne and Lyle about my dad’s blessing, I told them all about my feelings about Robbie and why the priesthood would always be important to him, and then I told them that I had opened to a scripture that I thought was amazing. I let Susanne read it and then I handed the phone to Lyle, and I knew that he knew exactly what scripture it was by looking at the chapter and he said, “oh wow.” I felt more and more confident that the scripture was given to me to read to provide me with a little reminder of comfort, which I needed on a daily basis.
The surgery took about 3 hours and finally they called us into a private room. The time elapsed in the room waiting for the doctor was probably no more than 10 minutes but felt like a lifetime. I felt all of my confidence slipping away and I began to let fear of the worst case scenario creep into my mind. I just kept thinking of Robbie’s big eyes watching me, assuring me that he would come back.

It had gone great, as well as he could have planned and Robbie had already been extubated and was in recovery. He discussed with us a few other matters that would have to be corrected eventually, but everything that could be done had been taken care of. Robbie’s creatinine could go up after the surgery because of the temporary swelling but hopefully would come down afterwards. He told us he would follow up in a few days after they removed the catheter.

We walked out of the room smiling and gave our family the news. A cloud was lifted and we were feeling light and free. I was anxious to see him and we had to wait another 30 minutes before going back to recovery. I went back and there he was, like nothing had happened. The recovery bay was white and open with cribs lined along the walls. It was very much like a warehouse and looking up and down the room you could see parents who were either grieving, or rejoicing. Many of the babies were still intubated and connected to ventilators which makes everything seem scarier. We knew that we had so many more challenges to come but at least this first hurdle was over.

-The next day his creatinine came down. Not dramatically, but enough to make us feel like we were headed in the right direction. Over the next 6 days his creatinine continued to come down, and he made small advances gaining a little weight here and there. Finally we were moved to the level 2 stepdown unit where we were to wait and see where his creatinine would plateau and determine whether or not he would become symptomatic at all.

-He made great strides in that last week, gaining weight and eating better. After “negotiating” with the neonatologist I convinced them that I was responsible and intelligent enough to take him home and continue to monitor him etc, etc. The day I took him home I called Rob, who was at the office and told him to meet me at home in 30. They walked Robbie and I down to the car (which was my friend Michelle’s Range Rover that she let us borrow) and putting him in that carseat was the best feeling ever. I said a prayer before leaving the hospital that we would get home safely. Rob met me at home after running into him at the stoplight near our house. We celebrated, and hugged and cried. Rob finally took his “I’m the dad” hospital bracelet off, sticking to his word that he wouldn’t take it off until “his boy came home.” It was a sweet, amazing day. There was a time I thought he would never see his home. I had told Rob if Robbie didn’t come home, we had to move, I couldn’t stay there without him.

-My mom arrived a few days later and of course she was thrilled to see him. I was breastfeeding and trying to figure out how to be a full-time mom and it was such a relief to have her there with me. We watched hours and hours of BBC films and oogled over Robbie. About a week after he was home I told my mom and Rob that I thought he looked pale. They both expressed that they didn’t notice it and that maybe I was being a little paranoid. I kept telling my mom that the one thing that was always a consolation was that he looked so healthy, but at that moment, he finally looked like a sick kid. I could tell she was worried, but didn’t know what to say. I took him to the pediatrician and he had only gained 2 oz in a week (where 1 oz/day was normal). The pediatrician didn’t seem overly concerned and so we went and got labwork and went on our way. Later we had an appointment with the nephrologist and Rob had come with me. His labs indicated that he was in fact dehydrated and she expressed that from the physical examination she could also tell he was dehydrated. I asked if she thought he needed to stay to get IV fluids but she told me she thought I just needed to stop breastfeeding, that I needed to give him a bottle so we knew exactly how much he was getting.

-When we got home Rob left for work and my mom and I settled in to watch a movie. We made Robbie his bottle, fed him and put him to sleep. The past couple of days he would sleep and sleep until I woke him up and so when I went upstairs to get him to eat I wasn’t surprised that he was still sleeping. I brought him downstairs and put him on my lap. He was obviously lethargic and listless. I looked up at my mom and said, “he’s not doing anything.” Mom looked at me, remarked that he “certainly was not,” and came to get him off my lap. She picked him up and began rocking him to try and arouse him. His eyes rolled in the back of his head. She said maybe I should call the doctor. I looked at Robbie and told her we needed to call 911. I made the call, and then frantically tried to get a hold of Rob. I finally text him saying, “Need you now.” He called shortly thereafter and I explained what was happening. My mom told me she needed to go upstairs to change before the ambulance came. I remember saying, “this baby can’t die, dear God, this baby can’t die.” She said, “no he can’t, he’s warm, he’s warm.” I took Robbie from her and pleaded, “don’t leave me.” She told me I would be okay and ran upstairs. I looked down at Robbie, at his listless body, limp in my arms. I tried to stimulate him with sternal rubs, and loud noises but nothing would work. I held him longways in my left arm preparing for CPR. I wondered several times if I needed to give him breaths. I frantically rocked him saying, “Shh, shh, shh, its okay, its okay Robbie, please its okay.” He made no noise but I continued to “shh, shh.”

I heard the ambulance from a distance and began screaming for my mom to come. She ran downstairs and out the door to wave them down, worried they would not know which house to come to. I walked outside and the firefighters told me to go back in. I sat down at the kitchen table with Robbie in my lap and began to explain what was happening. Since he had labs that day I was able to break down each lab that was pertinent to the current situation and as I talked they gave him blowby oxygen. I will never forget the sound of Rob’s feet running across the gravel and bracing the doorway as I sat there with his whole world in my arms. I didn’t look up.

Another firefighter came in and said the ambulance had arrived. We walked outside and were greeted by a man standing next to a “ER MD” vehicle. He told me he was an ER doctor. Immediately I felt a sense of relief. I explained to him what was going on, Robbie’s history, labs, vitals, etc. He examined Robbie and said to the crew, “lets bring him inside to the living room, we may need to initiate some more serious interventions.” I’m a nurse, and ER nurse and I know ER language. I knew what he saw was a baby who was on his way out. “Serious interventions” is the least offensive way to tell the crew that this scenario would probably end poorly. We moved quickly into the living room and they continued to administer oxygen. After about 10 minutes of the O2, Robbie perked up. Not by much, but enough that the doctor held off on putting in an IO (Intraosseous catheter, or an IV that is drilled into the shin bone). They hooked him up to an EKG and though he was tachycardic, he was still in sinus rhythm.

The ambulance arrived and Robbie and I got on the stretcher. In the ambulance they told me that the doctor was the on-call ER doc and just happened to be driving by, saw the lights, and stopped to see what was going on. Robbie’s oxygen started to decrease during the ride and he began to drift back into his former state. I could tell that the EMS were nervous. As we pulled into the hospital bay I saw my mom and Rob turning in behind us. Inside the ER I was greeted by the charge nurse. Before any explanation from me he looked at Robbie. A 5 second once over and he said, “Okay, this baby is mottled, lethargic and looks like shit, let’s get it started.” In that moment I felt the calmest I had felt all night. I was in my element. There were a hundred things happening at once and I knew the what and why of each and every one. I spoke to several doctors explaining every detail of Robbie’s history and condition. They told me they wanted to do a spinal tap, I requested that we wait for the results of the CBC to determine if his white blood cell count was elevated first. They agreed and continued to try to get a line in him. He was so dehydrated they stuck him 14 times before calling the Vascular Access Team to come in and find a vein via ultrasound. The moments up until we got a line were so tense, because as all of those nurses were aware, if things go south, having direct access is vital.

Robbies WBC’s were in fact elevated and the doctor insisted on the spinal tap. I agreed and signed consent. During this time my mom and Rob were sitting at the opposite end of the room. Occasionally I would go and talk to them and explain what was happening and make sure they were okay. It was like, for those moments, Robbie was a patient, not my baby. He couldn’t be, or I wouldn’t have been able to keep it together. Everything that was happening was like a poison filling up my body and it sat in the top of my throat and the only thing keeping it down was my ability, at that time, to compartmentalize what was happening. I would think, there will be a time to fall apart, but this is not it. I walked over to Rob at his white face, horrified by the events unraveling in front of us. He asked me if I “was in nurse-mode?” I replied that I had to be.

I stayed in the room and helped hold for the spinal tap, I couldn’t bare the thought of leaving him. Rob and my mom left the room. My mom told me she didn’t want to remember him like that. The labs showed that he had a urinary tract infection and they were very concerned that he was septic. Finally, he was stabilized and we were getting ready to transfer to the NICU. They began IV fluids and antibiotics and we left the ER. Once we got to the NICU we fed him, as he hadn’t eaten in hours and hours and then after he was settled, we all decided we needed to go home. Not that we would sleep, and as much as I hated to leave him, I was weak and knew there was a long road ahead. We got home, I laid down, and cried. The poison that had bubbled up inside of me felt like it was released like a gunshot. I just gave in, and completely lost it.

-Robbie remained in the NICU for 2 weeks, as 14 days of antibiotic treatment was required. It was a long two weeks. My mom was there for the first week and a half which saved me from an almost certain mental breakdown. We would go in around 9am, feed Robbie, eat lunch at Chick-fil-a (which got really gross, really quick...blasphem, I know), head back and sit and talk until around 7 and we would go home. Some days we would get good news, some days we would get bad news, and many days we would get both. But similar to my experience during his first NICU stay, something positive would always happen right before we left. The Lord knew I couldn’t leave my sweet son without something positive to hold on to.

-His creatinine slowly came down and it seemed as though the prognosis was looking up. I let myself believe that maybe he had endured the worst and we would finally be able to sigh that deep sigh of relief.

-We continued to pray and pray constantly, having sweet moments of reassurance very often. And finally, he was able to come home.

-Since his discharge we have had one episode of gastroenteritis, discovered he is lactose intolerant, has some pretty intense reflux, and we had one more ER visit after an elevated temp, but all in all things have been dramatically better than we anticipated. And as a side note, Robbie has the SWEETEST disposition of any baby I’ve ever seen. He sits with me and smiles, and rarely cries, and he without a doubt, knows his mom and dad. Robbie has doctor visits each week, frequent lab work and will be on antibiotics for the next few years but he is stable. It is still difficult for the doctors to determine what his prognosis will be. The real test is to look at his lab work at age 1 and that will give us a much more accurate suggestion of how things will go. If Robbie does eventually need a transplant, we have had an outpouring of volunteers, and really, a transplant at age 10 is so much more palatable than the idea of a transplant at 10 days. Again, this is one of those “wait and watch” situations that I am trying to learn how to manage.

-On Sept 22 we are taking Robbie to Rob’s home town of Monticello, Utah to bless him. I am so comfortable using the phrase, “miracle,” when I think about him being able to travel to those sweet mountains that mean so much to his dad. There, he will be the littlest of four Robert Andersons still on the earth with us, and will also be watched from on high by the late Robert Andersons. Both of our families get to come together and be so, so grateful for his life, and his influence on all of us.