Thursday, January 31, 2013

Beating the Odds: Emma's First Year


            Who would have thought that a rollercoaster of a pregnancy would have only been the beginning? With our first daughter Maddison (current age 4), my pregnancy was absolutely miserable. Between the constant puking and minimal weight gain, I finally started gaining weight around seven and a half months. I was induced with my first pregnancy at 42 weeks. Maddison arrived eight pounds ten ounces and twenty three inches long. She was as healthy as could be. Four years have passed she is extremely advanced in every way possible. Most importantly, she has never been sick enough to have any hospitalizations. With such an amazing experience as parents, we knew after just three short years with Maddison our family definitely was ready for a new addition. After months of trying, we announced in early July 2011 that our family would be welcoming a new addition around the beginning of March 2012.

            Little did we know, my first pregnancy would be considered a walk in the park compared to what I was about to endure. As early as five weeks, I would begin suffering from Hyperemesis Gravidarum. (In pregnant women, nausea and vomiting (morning sickness) are common, affecting up to 80% of pregnancies. Hyperemesis, or extreme nausea and excessive vomiting, occur in about 1% of pregnancies. This condition causes uncontrollable vomiting, severe dehydration, and weight loss for the mother. However, hyperemesis gravidarum rarely causes problems for the unborn baby.) After several hospitalizations, we were given the speech of how the odds of our baby surviving the pregnancy were very slim. We were still ready to give our unborn baby a fighting chance, if she was going to fight to survive- I was ready to fight as hard as I possibly could to keep up with her. Losing six to eight pounds at every check-up when they were only three weeks apart became very concerning. My OB started expressing concern that it was now not only life threatening for my unborn child but we were going to need to address the fact that my body still had a minimum of five more months to go through this and things were not looking very promising. At that time, Maternal/Fetal Medicine Specialists became involved and we discovered on top of everything else that was going on we were dealing with a two-vessel cord. Two-vessel cords are not uncommon and in some cases the pregnancy can still be normal. However, the combination of hyperemesis gravidarum and the two-vessel cord, our unborn child was not getting the proper nutrients she was needing and was not growing according to schedule. We watched weekly as specialists monitored several different things with myself and our unborn baby. At 32 weeks, they decided that it would be in the baby’s best interest to be given just a few more weeks and if there is not an appropriate amount of weight gain we would induce and deliver early. Monitoring growth twice a week, the ultrasounds were only calculating our unborn baby to be approximately three pounds and thirteen ounces. After two weeks of no growth, our Maternal/Fetal medicine specialist decided our baby would be better off with medical treatment in the NICU setting if needed so an induction date was ready to be discussed. I told him that if he was really that great of a man he would make my birthday wish come true and send me straight downstairs to be admitted. He said, “If you are ready, head on down. Happy Birthday, my gift to you will be Pitocin.”

            As we sat there pondering all the possibilities, fear sets in. Would I survive delivery? Would Kory be raising two girls on his own? Would we be burying our daughter? How will we explain to Maddie if we don’t bring home a baby and she doesn’t get to be the “Best Big Sissy Ever” like she has been preparing for, for months now? Little did we realize, the doctors had no intentions of a long labor and delivery. They would let Pitocin go overnight and by mid-morning they were guaranteeing that there would be a birth. Around 9 a.m. on Valentine’s Day, our nurse walked in and said, “are you ready to have this baby?” …. Part of me wanted to scream “No!” Only because at that very moment we both were stable and our vitals were great. Once we started the process things would quickly change as all the specialists had assured us. The nurse informed us that things were working a little quicker than planned with scheduling- due to how complex and how things could quickly escalate into a complicated situation they wanted to make sure there were plenty of hands around to treat both myself and the baby. In one corner there was a surgical team on standby, NICU staff in the other corner of the room, and Kory &  I as prepared as we could be. We started to push and again I was informed by my OB that the longer the baby was in the birth canal they less likely she would come out without breathing problems or any kind of abnormalities caused from delivery. So, she needed me to get the baby out as quickly as possible. I was asked to push and with two pushes our beautiful, very fragile looking baby girl was in the doctors arms. Quickly being handed off to the NICU staff to observe her and be ready for any complications… A few seconds passed and I didn’t hear her cry. …. …… …… But then there it was, a loud healthy cry from this tiny four pound seven ounce baby! She was great! Everyone in the room was in complete shock.. She was breathing on her own and not showing any signs of distress. Another St. John’s Miracle baby is born. Right as the nurses are getting ready to give her, her first bath—Big Sister Arrives! The nurses even let Maddie help bathe Emma for the first time. So, there you have it …. All this preparation for the worst possible outcome and a miracle from God  blessed us on the 14th of February, Miss Emma Lee McGovern was alive and seemed to be a healthy baby girl—just a wee-bit on the tiny side.
            It’s the 15th of February and we are taking our beautiful baby girl home ! We couldn’t be more excited and are so blessed to have our little miracle baby. Although, we were extremely nervous because she is so fragile and tiny. The first few days home we were all terrified to sleep. She was so different from Maddie and we felt like brand new parents. As the days passed, things started to get easier. At our first visit with her pediatrician, she noticed what she called some “abnormalities” and was concerned enough that she ordered that we get a genetic blood test done. (a karyotype) Since she was very little, my motherly instinct told me we needed to wait until she was a little bigger to take that much blood from her little body. After just two short weeks she was finally up to six pounds and I felt like if I waited any longer to find out if she really was unique because of these abnormalities I was going to lose my mind… At 4.5 weeks old, we spent nearly two hours getting 5mL’s of blood out of her femoral artery. It was absolutely miserable for her. I couldn’t hardly take it! Before we knew it they finally had enough blood and we would have the results in two weeks. Emma’s pediatrician would call us with any results she would get in approximately two weeks. Let the waiting game begin…

            Little did we know, our results would not come in the form of a paper to our doctor’s fax machine but in a way that would change several lives forever. Time was flying by, it was already time for my six week check-up and my Grandma was along for the ride. I couldn’t hardly wait (now that I was not puking up everything I put in my mouth) to reward myself with a trip to my favorite restaurant, the Olive Garden! My appointment was at 10:30a.m. and we were out of there by 10:45 a.m. and headed to the Olive Garden.  I was so excited, I even told my Grandma I felt like I had been waiting 9 months to stuff my face with Chicken Alfredo and Olive Garden breadsticks.  I had no idea that the first few minutes in the Olive Garden would be the first few minutes of the rest of my life.

            As our waiter seated us, Emma started to wake up from her morning nap because she was due to eat at 11am. I took her out of her car seat and asked my Grandma to hand me the bottle I had just made up in the car that was in the diaper bag next to her. She reached for the bottle and as I looked down at Emma I noticed her eyes were doing something really scary. They only way I can describe it is that they were bulging out of her head and they were stuck open, it was as if she couldn’t close them. I screamed at my Grandma and told her something was wrong, I practically through her into my Grandma’s arms. That is when she looked at me with this fearful look and said call 9-1-1 she’s not breathing and began giving Emma rescue breathes.  I turned to the waiter, I remembered seeing him already with the phone to his ear calling 9-1-1. I remember screaming and collapsing out of fear. A St. John’s NICU nurse rushed to my Grandma and took Emma she said I am a NICU nurse and I can help. There were also 12+ off duty medical staff in the Olive Garden eating lunch. All of them rallied around to help Emma. Each of them offering all the help possible to take care of Emma, as well as her panicking mother who had collapsed in the corner.  There my beautiful baby girl was… blue.. stiff… unresponsive.. GONE.

            The paramedics arrived and I remember a lady that I had met prior to that day coming over. She was having lunch and she came over to help calm me down. She is a nurse and was giving me updates as best as she could. The paramedics arrived and I heard her cry.. it was weak and very faint.. but I knew enough that if she was crying … there was hope. There was also a lady that had worked with my Grandma prior to that day and she is a nurse as well. She offered to take us to the hospital because she said we were in no shape to drive. Of course we agreed and let her drive us to the hospital. That drive was the longest ride of my life and we were just going across town. My mind was racing! Was she going to make it to the hospital? Would I ever see my Emma alive again? My husband Kory was at work and didn’t have good cell phone reception where he was working. The word spread quickly and all our family members were calling Kory’s phone trying to get him to answer. Could you imagine? Put yourself in his shoes for just a minute.. a normal day at work and you look down to your phone with 15+ missed calls and text messages stating that Emma had quit breathing and he needed to get to St John’s Hospital right away!

            All I wanted was to curl up in his arms and be scared together, instead we were an hour and a half apart and terrified that our baby girl was gone. When we arrived at the hospital, I told them who I was and where I needed to be… the lady walking us back to the E.R. Room where Emma was receiving treatment could barely hold back the tears. I remember walking down the hallway and there are a lot of beeps, yells, cries, screams, and all that you hear in an E.R. I don’t remember hearing anything but a very wet, LOUD cry! Immediately I began to run in the direction of the cry and cried myself. What a shock it was to see her fighting with at least eight nurses/doctors hovered around her! But something held me back, there I was, at the door and I wanted so badly to run up and kiss her but something held me at the frame of the door… fear. Why did this happen? What did I do wrong? Did my pregnancy cause some horrible medical problem for my baby? We had already fought so hard throughout the pregnancy this just didn’t seem fair! I had been so super careful with her! Where did I go wrong?.... I also remember I bet I asked a million times, ‘WHERE IS KORY? WHAT IS TAKING HIM SO LONG? I WANT HIM!!!’   

            I finally build up the courage to get a little closer and one of the nurses said, “she’s ok mom, you can touch her.” Then she asked if I wanted to hold her? She was hooked up to all these monitors with all these cords coming off her… I wasn’t sure I knew how. (Something I would very soon become a professional at doing. ) I told her I definitely wanted to hold her but I wasn’t sure I knew how to with all those cords and I didn’t want to hurt her. Keep in mind the last time I held her she was unresponsive, blue, stiff, and looking up at me with these bulging eyes that will haunt me for the rest of my life. So I had to take time to calm myself… the nurse actually had to hold pressure on my arms because I was shaking so much she was afraid I would drop her. The nurse knew it was a step that needed to be taken and it needed to be done quickly in case something happened and I wasn’t able to hold her ever again. As I sat there with Emma in my arms she appeared to be so weak and fragile. All I could do was look at her and cry. All along I kept saying, “You’re going to be ok baby, Mommy just knows it.” After nearly ten minutes of saying nothing but that… I realize I was trying to convince myself that the worst was over and in walks this tall, Indian man. He said, “Are you Mom?” I remembered thinking.. just go away, my baby is fine and we are going home. (Pretending that now that she was in my arms and ok we would go home like none of it ever happened… not very logical but I was definitely not in a normal state of mind.) However, this man grew attached to Miss Emma very, very quickly. This man would be none other than Dr. Gurpreet Mander. All of the sudden there was that “WHERE IS KORY!!!!!!!!!!!!!!!!!!!!!!!!!” rage again. This doctor informed us that he was a critical care specialist and that he would be transferring Emma up to his Pediatric Intensive Care Unit and running several tests for several days and monitoring her very closely because he needed to find out what caused this event to take place and fix it, if possible. If possible? Oh no, the panic sets in again. What does he mean “if possible”? He is going to make this all go away, right?  Seconds later, Kory finally arrived. Wrapped up in each other’s arms he looks over my shoulder to see his daughter just lying there … connected to all these machines. No answers for why this had all happened and if it was going to happen again.

By this time, both waiting rooms on the Pediatric floor were filled with family and friends who were there to support us although they were all in shock and crying just as bad as we were. Dr. Mander continued to update us with any new information he had on Emma’s medical status. Unfortunately, there were little to no answers. One answer we did have was that something was seriously wrong with Emma and we would have to find out the hard way if it was going to happen again.

            After being stable for nearly an hour, Emma was taken up to Pediatric Intensive Care Unit (PICU) Room #5 for very close monitoring. I thought I was overwhelmed in the Emergency Room…. When we were settled into the PICU, the madness really began. Several doctors, nurses, lab tests, chest x-rays, constant vitals, etc. Reality really sank in… my baby is really sick and this is not going away anytime soon.  

            After awhile in the PICU, I was sitting by Emma’s bedside and Dr. Mander came in and said he thought maybe an infection was the source of her problems or at least some of them. With that being said he needed to do a spinal tap to test the fluid in her spine for infection. He said the procedure would take approximately 40 minutes from start to finish and that he could come to the parent lounge and get us when he was finished. Kory and I told him we were going to walk down the hallway but would just be right outside the doorway where several family and friends awaited to see our fearful faces in hopes that we would bring some kind of news. As we sit there visiting and letting them know what had been said so far,….. There was a “Rapid Response Consult to Pedi ICU” … we had no idea what this meant at the time but as we were sitting in the hallway… all the doctors and residents were RUNNING down the hallway towards the PICU doors. I looked up at Kory and burst into tears. I said, “I know it is her!” He tried to convince me that there were eight rooms and it could be any one of the rooms. I knew in his heart,… he knew it was her just as much as I did. Trying to hold me back worked for a few minutes and I busted out of his arms and ran down the hallway to the PICU… That feeling, that happened in the E.R. (the one that held me right at the door but didn’t let me approach her just yet..) It happened again. I stopped right at the edge- by the charge nurse room…. I couldn’t see around the corner to see if they were all in Emma’s room even though I wanted nothing more but to know if it was her. I took one big step to the side and every single one of the doctors, nurse, and residents that had ran past us were all standing pilled outside Emma’s door because the room was so full of PICU doctors, nurses, and residents. Kory was right behind me to catch me as I crumbled into his arms and cried so hard it hurt. It was in that very moment that all hope was gone for me. It happened again and they still don’t know what is causing it. This is going to kill her before we even know what is wrong. The doctors and nurses were trying so hard to figure out what could possibly be going on. When the nurse sat Emma up to prepare her for the spinal tap she had another episode where she quit breathing.. this time being hooked up to monitors they were able to tell us that her heart did not stop beating she just quit breathing for a short period of time and they were able to get her breathing on her own.

            After everything calmed down, Dr. Mander let us know that doing a spinal tap was clearly out of the question at this time until we figure out why she is having these episodes. He also informed us that if he had to make an educated guess by what he knows at this time, he would say we are looking at some kind of genetic abnormalities being the source of this problem and it was at this time that he mentioned a possibility of DiGeorge Syndrome. He said there were some things came back on her lab results that concerned him and he wanted to call a few other doctors that would come and look at Emma to see if they could help us figure out what was going on with her. One of them was Dr. Rebecca Green who is an Endocrinologist and she informed us that Emma had an extremely low calcium level of 0.56. (normal calcium range is 9.0 to 11.0) leading her to believe that she may have Hypopararthyroid induced Hypocalcemia. She said she would have to run the appropriate lab test but she was going to almost guarantee that was the problem. She assured us that if that was what was going on, there was treatment but it was not anything she would be able to “cure”. The other specialist that Dr. Mander had called to take a look at Miss Emma was Dr. Mark Johnson who is a Pediatric Pulmonologist. Without running several tests, Dr. Johnson said he couldn’t for sure tell us what was going on but there were a few lab test that can rule out the bigger problems. His main concern with the way Emma was acting was leading him to think that she may be Hyperventilating and could possibly have something called Central Nervous System Apnea, where her brain forgets to tell her to breathe. This was very terrifying news. The brain, really? He informed us that if this were the case she would definitely need a tracheostomy tube. He ordered the lab work and since it was genetic testing, it was a send out as well. After speaking with both of them, Dr. Mander returned to tell us that the test that Dr. Johnson had ordered were being sent to the place where his tests were sent and we could treat her as best as we could until we receive those results to hopefully provide us with some kind of an answer as to where we go from here. He said unfortunately this is going to take a lot longer than I would like but the important thing is that she is in great hands and although it is slowly- we are finding out why she is doing some of these things. The genetic results will let us know if this is temporary or if we have a long road ahead and possibly more situations like this one.

            At last, March 27th 2012 was drawing to an end. As exhausted as we were, there was no way we were going to sleep. All throughout the evening, I had these horrible mental pictures that would not go away. It was like living your worst nightmare and you cannot wake up to make it all disappear. The thought of my beautiful Emma in a casket would not stop haunting me. Every time I would close my eyes, that’s all I could see. I was not ready to go to sleep and let my brain process this horrible day! My best friend Sami stayed by our sides to help us through the next few days. Having a family of her own at home this was a very loving yet complicated thing to do. However, she didn’t think twice. Sami and her family have helped us through so much and have sacrificed so much for us. Sami sat up watching Emma breathe forcing us to get some rest because each new day was going to bring more and more challenges. We knew there would be no way to process any new information if we didn’t get some rest. The staff was so amazing right from the second we walked through the doors. I know for a fact that, if Emma wouldn’t have been at the Olive Garden and been immediately taken to the St. John’s PICU- She would not be alive today. God’s plan and my rumbling tummy put us at the Olive Garden that day for a reason. As well as crossed our path with multiple off duty medical staff at the same exact time… call it what you will ladies and gentlemen but that, that is God ! There is no denying it.

            The first week went by very slow. Not much information which we expected because Dr. Mander told us that the results would take two weeks to come back. Six days had passed and it was the 2nd of April, Emma was doing much better and since they knew we would be staying for several more weeks we were moved down to a general pediatric room out of the Intensive Care Unit. This was such an exciting day for our family. Emma was doing so amazing. At that time, Emma was feeding through an NG tube (inserted into her nose and down into her stomach) and was not requiring oxygen. The NG tube was used when Emma was very bad the first few days but they even had her eating 2.5 ounces within 30 minutes every three hours. This was all great news! The following morning Emma would be getting an MRI of her brain at 11:00 a.m. The plan was to do a sleeping MRI, I would feed her and then they would lay her down and do the MRI. If that did not work they would have to sedate her and complete the MRI in order to get the information they needed. Our nurse Jennifer, Kory, myself, my mother and of course Miss Emma all headed down to the first floor to get this MRI over with. Once we were down there, the anesthesiologist was present and he let us know what they were going to do and that they would feed her and try to get her to sleep. They took us to a waiting room a few steps from the room they would be in with Emma. Kory went outside to get some fresh air since it would take 45 minutes at least. He had a few phone calls to return and couldn’t call out from the basement so he headed outside. My mom and I went into the waiting room. Mom started explaining how great she was doing and the MRI machine was making different noises. Of course with Miss Emma, nothing goes smoothly with a consequence soon to follow. My mom has had several MRI’s so she was telling me what the test was like that Emma was having. After a while of her explaining I realized,… the machine had stopped. A few seconds later I noticed a “blue wave” pass in front of the window. People were rushing around like crazy. Immediately I expected the worst and I opened the door and asked very calmly what was going on. Without turning around a nurse thought I was the voice of a fellow co-worker and replied “that little baby in there has coded.” Immediately I collapsed and my heart sank… we have been doing so great and now we are back to square one. Seconds later, Brooke (a PICU nurse who I developed a very close relationship with) along with Dr. Mander and Dr. Basnet (another Critical Care Specialist) were rushing to get into the door. After seeing Dr. Basnet, there was immediate relief that she was there to take care of Emma. While attempting intubation for the sedation Emma coded (quit breathing/possible cardiac arrest) and had to be resuscitated by the anesthesiologist. Once Emma was stabilized, Dr. Basnet came out and told me that was fine but they were definitely taking her back to the PICU. Then the anesthesiologist came out and let us know what had happened. He said for whatever reason when he tried to intubate Emma he was unable to be successful. He also wanted to inform us that because the intubation was an unsuccessful intubation there may have been some damage caused to her airway because when she went unresponsive he had to pull the tube out before actually having it properly placed because he needed to immediately resuscitate her.  After the trauma from the unsuccessful intubation, Emma developed an oxygen requirement of 1.0 liter. The oxygen requirement was something the doctors were relating to trauma suffered from the unsuccessful intubation and they figured she would recover and no longer need the oxygen. This rollercoaster didn’t seem like it was going to be over anytime soon. The next day, April 3rd was a very rough day for Miss Emma. By mid-morning, she was on 6.0 liters of Oxygen. Kory and I really struggled to keep our heads up during this time. We were doing so good and looking at all we had overcome in just a week and then we were back on this unknown path.

            It was in the next few days that we would have an answer we definitely didn’t want to hear but it was an answer that would help us prepare for Emma’s future. Emma’s pediatrician called with the results of karyotype, which was the first genetic test that we had ordered before any of this happened. She said “Emma has a few genetic abnormalities.”  The results of the karyotype showed that Emma had a terminal deletion at the beginning of the thirteenth band in the small part of her tenth chromosome and she also had a duplication of the thirteenth band in the small part of her twentieth chromosome. As well as the duplication and deletion, Emma also had an unbalanced translocation of chromosome ten and chromosome twenty. (which meant that her chromosome 20 duplication is sitting on top of her chromosome 10.) What does all that mean? I had no idea! All I knew is that something was wrong and since it is genetic, I was pretty sure that meant there was absolutely no way of correcting the ‘problem’.

            Who better to talk to when you have no clue about what any of these results meant? Thankfully our amazing children’s hospital has a few genetic counselors just for families like ours! Our nurse made a call to the hospital genetic counselor and she said to give her some time to gather some information for us and she would be right up to help talk us through the results. On Tuesday April 10th, we met our genetic counselor, Heather, who would provide us with the foundation of knowledge that we would build from in the many weeks to come. She explained things in a term that were much easier to understand and laugh if you will, but when we didn’t understand something she would draw pictures to help us understand. In return, this helped a lot because we were able to draw similar pictures when explaining Emma’s genetics to others. We were starting to get answers and putting together all these random pieces of a puzzle. There were several times that we all said figuring out Emma’s medical condition was kind of like having cardboard puzzle pieces with no picture on them and they weren’t all in the same box. We had to search for them and then see how it fit with the rest of the other pieces, our very own medical mystery.

            With being this far into the story, I am sure you can almost guess that since things are going so well, it won’t be long before things take a turn for the worst. On the 12th of April that is exactly what happened. Emma had several episodes of apnea and by early afternoon. She had in increase in oxygen requirement and went up to 3.0 liters from her regular 1.0 liters. Within 24 hours Dr. Mander wanted to do a CT Scan to check out her lungs. By evening, blood cultures were showing she had an infection in her bloodstream. On a positive note, Emma has made it to two months old. Yes, that’s right…. All this had happened in the first two months of her life.

            After all that had happened, things finally started looking up! Two very uneventful weeks passed and Emma had proven herself to her nurses and doctors that she just may be ready to try the home life as the “new” Emma. Home? I am supposed to do all the things that all these highly trained medical professionals do on a daily basis. . . Are you kidding me? There is that overwhelming feeling again… fear. What if I mess up and it cost her, her life. I don’t know if I am ready for all this. The nurses and doctors assured us that they wouldn’t send us home without training us in every aspect of Emma’s care and we would have to prove to them for a few days that we could do it and were ready to handle it. Emma was still NG tube dependent, oxygen dependent, and on several medications every few hours. At this point, overwhelmed  was by far, an understatement.

            After 35 days in the St. John’s Pediatric Intensive Care Unit we finally heard the words we were so excited to hear but yet it brought so much fear. “We are going to start preparing for discharge.” This meant that they needed to contact these companies to send us all our medical supplies and come show us how to work our monitors. Dr. Basnet stopped in to see us, she was not working but was at the hospital for meetings and heard we would possibly be discharged the next morning. However, things never go as planned. In this case, I can’t thank Dr. Basnet enough for making the decision of a last minute surgery to place a gastrostomy tube that would a more beneficial and a more comfortable option. Kory and I absolutely agreed. However, this meant that we would still be in the hospital for a few more days—possibly another week depending on when they could squeeze her into the surgery schedule. By the grace of God, there was an opening the next morning which was the 1st of May. Was it really May already… Her surgery went so amazing and there were no complications what so ever. She recovered rather quickly and the next day they felt she was ready for discharge. May 2nd would be the last night in the Pediatric Intensive Care Unit after a very long thirty eight day stay.

            So this was it, they were really sending us home. We were completely trained just as they had promised. Would we even know how to function at home? We had lived in a hospital for a month and a half straight.. It would definitely be an adjustment for the entire family but after being a very close family who was separated during the scariest time of all our lives, we were very ready to be back together. Emma would have lab work twice a week for about six weeks. They wanted to make sure all her levels were maintaining the normal level with all her supplements. Especially watching her calcium levels very closely. Dr. Johnson, her pulmonologist also wanted to watch her blood gases to make sure everything was staying normal. Emma would soon start outpatient therapy services which would consist of Occupational Therapy and Speech Therapy at St. John’s Pediatric Rehabilitation Center.

            Just as everyone said, the fear of all this medical responsibility subsided and this was our new normal. Several family and friends put together a “Family Fun Day” benefit for Emma and our family just a few weeks after being discharged on the 19th of May at our church. The benefit was a huge success and helped our family through such a hard time. I am forever thankful to those amazing people who put together such an amazing family day! That following week we would follow up with our pulmonologist to see how things were going at home. Another month had come and gone. It was June and this month would bring a very special day for our family. The 14th of June is our daughter Maddison’s birthday, she would turn four years old and Emma would turn four months old. This was the “best birthday ever” for Maddie because she could wait for “her and sissy to both be turning four!”  Throughout June we would follow up with Emma’s endocrinologist, pulmonologist, nephrologist, pediatrician, Gastro-Intestinal Specialist, Audiologist, Dietician, and her surgical nurse to check out her G-tube. We spent a lot of time traveling making sure we were keeping everything in check.

            July would bring new members to TEAM EMMA, another diagnosis, more check-ups, and unfortunately another surgery. The second week of July was pretty intense, I think we lived in our car for three straight days. On the 9th which was a Monday we had to travel to Mattoon to meet with our geneticist, Dr. Schneider who might I add is so extremely intelligent and such an amazing addition to TEAM EMMA. The following day, we had to be in Saint Louis to see an ophthalmologist by the name of Dr. Andrew Blatt who would confirm what Dr. Schneider has suggested that Emma in fact did have bilateral cataracts that need to be removed immediately. However, due to the complexity of Emma’s medical conditions he needed a different ophthalmologist to see her. This meant that we would drive 3 hours home just to turn around and be back in Saint Louis by 9 a.m. the next day to meet with a Dr. Tyschen. Who then gave us a prescription for eye glasses and set surgery dates for July 31st and August 2nd at Saint Louis Children’s Hospital. This crazy week was drawing to a close and we were ready for the weekend so we could finally rest. However, that is not what Emma’s medical rollercoaster had planned for us.

            On July 14th around 12:30 a.m. I woke up to the sound of Emma’s monitor alarming. I jumped up thinking she must have taken her oxygen out of her nose which she does from time to time when she itches her nose in her sleep. However, this was not the case. Emma’s oxygen saturations were 100% her heart rate was the problem. Emma’s heart rate was staying around 200 bpm while sleeping and when I woke her up to see how she would act and to see what was wrong they were at 220 bpm. Freaking out we took her straight to the local E.R. where she was transported to St. John’s PICU. Remember, our home away from home. This is when I learned that an elevated heart rate is one of the first signs of infection. It was also around this time that we had the pleasure of adding Dr. Giovanna Caprirolo to TEAM EMMA.
She is an amazing person as well as a fantastic physician and we are blessed to have three amazing critical care specialist as advocates for our daughter. It didn’t take long for the urine cultures to come back positive for infection. It seemed as though Emma had a Urinary Tract Infection which had progressed into a possible Kidney Infection as well. An ultrasound of her kidneys showed that Emma has some calcium deposits on her kidneys. Dr. Seifert who is Emma’s nephrologist wanted to check into her kidneys a little more but said that it was not necessary at this time to jump right into it. We spent seven days in the hospital and were finally discharged on the eighth day.

            On July 30th we prepared for our first overnight stay in a hotel with Emma. She had to be at the hospital signed in for surgery at 7 a.m. on July 31st to have her first of two eye surgeries. Two car loads full and we were headed to Saint Louis. We were feeling really good about these surgeries. They assured us that it was a very simple procedure and wouldn’t take much at all to recover from.
However, Saint Louis Children’s Hospital was a horrible hospital and this was by far the worst place for Emma to be. After her second eye surgery on August 2nd, things took a turn for the worst. The doctors refused to listen to anything we said and after nearly 48 hours of fighting for our daughters life we finally were able to get her transferred home, to St. John’s PICU where all her specialists were and they knew how to take care of her. At the time when she arrived back home to St. John’s, she was ventilator dependent and in the worst shape of her life. Her calcium level was 5.4 and dropping. She had not been fed at all for four days because of Saint Louis Children’s Hospital. After 16 days of fighting, she recovered from her horrible set back St Louis caused her and she was ready for discharge. Before we were discharged her nephrologist wanted to have a test don’t on Emma (VCUG) that would tell us whether or not Emma’s urine was refluxing into the kidneys and causing her to be more susceptible to Urinary tract infections as well as kidney infections. The test did indeed confirm Dr. Seifert’s suspicions, Emma was diagnosed with grade 4 kidney reflux and would be put on medication that would attempt to help prevent future infections. We were still being discharged and would just follow up with our nephrologist in a few weeks.
 St. Louis Children's Hospital nearly killed her.

            Remember the medical rollercoaster I keep referring too, it pulled a fast one on us. We were not home 24 hours and we were back at the hospital with another very elevated heart rate which lead us to investigate and find another urinary tract infection was brewing. We would go on to spend another five days in the Pediatric Intensive Care Unit at St. John’s Children’s Hospital. The next week would be filled with more appointments, one of which would be a post-op eye surgery appointment.

            September is here! This is it, this will be the month we will be home. Right? Spoke too soon… We were home to celebrate Daddy’s birthday on the second and the following day Emma would test our medical training skills. It was labor day and I had just put Emma to bed when I went into the bathroom and her monitor went off. I asked Kory to go check on her and I didn’t hear him say anything. A few minutes later I walked into Emma’s room to find Kory placing Emma on the floor, removing her nasal cannula so that he could use the ambo bag to resuscitate her. Her saturations we in the sixties and she looked gray and limp. I ran to grab my phone and call 9-1-1. Emma was taken by helicopter to St. John’s. This would make her second ride in a helicopter in less than 30 days. Once we arrived to St. John’s, she was acting as if nothing was wrong and she just wanted to see her St. John’s family and make mommy and daddy look like they were overreacting. We settled in and once she was asleep we joined her. We had not been asleep for hour and Marian (resident) woke us up to tell us that Dr. Capirillo was coming in and Emma was having some more difficulty breathing and they were going to put her on the C-Pap which would support her airway more for her so she didn’t have to work as hard. This was something we were very familiar with. Emma has been on the C-Pap several times to assist her with breathing. Chest X-rays revealed that Emma had a collapse of her right upper lobe. We always ran into a big problem with Emma right away. She was absolutely impossible to get good IV access and maintain an IV long enough to get her medications. With this particular hospitalization, we had reached a point where after trying for over 24 hours to get IV access the decision had to be made to take her down to the O.R. to have a central line placed so that we could get antibiotics into her system to fight this infection. After several times of this same problem, Dr. Mander told us that it was time to place an infus-a-port. This would be very beneficial for Emma so in case of an emergency we will be able to have immediate access. Also, for her sake it will be one stick and that is all. For Emma, this meant another surgery to pull through. Her most recent surgery was a horrible experience so we were very worried things may not go so smoothly. However, once again our amazing little miracle pulls through and is discharged four days later. It was at this time that we switched our pediatrician to someone who could handle a chronic child like Emma.

            This time we really thought things were going well and we could rest assured that she would be home for at least a few weeks. It was at this time that we decided instead of predicting weeks we should cut back to predicting how many hours we will be home. This time we were home a whopping forty-eight hours and ending up spending another 13 days in the Pediatric Intensive Care Unit at St. John’s for another urinary tract infection due to this kidney reflux as well as an infection in her port. However, thanks to this amazing infus-a-port we were able to do IV antibiotics at home, which shortens our stays a little bit. It was already October and it was time to follow up with doctors and meet another new face. This time it would be an immunologist by the name of Dr. Dareen Siri, what an intelligent woman! She of course wasn’t here to tell us how healthy Emma was, in fact, it was the exact opposite. Dr. Siri ordered some lab work to investigate into why Emma was so sick all the time with all these different infections. She wanted to make sure there was not an undiagnosed immune-deficiency. Her test results showed that Emma had another diagnosis to add to her list. This time it would be hypogammaglobulinenemia and treatment would be injections of immunoglobulin (IvIg) every three weeks. We would soon refer to this as “Emma’s Super Juice”. It was around this time that we also welcomed a new addition into our home, our sweet Miss Tonie. She is our home health care nurse but more importantly she has grown to be a family member that we miss dearly the two days she isn’t here. I can promise you there is not a single nurse out there that could compare to our Miss Tonie. She takes the absolute best care of our Emma and I know that our entire family benefits from having her here. She takes care of Emma while Kory, Maddie, and I sleep from 10 p.m. to 6 a.m. The only time I can really sleep is when she is here. I could not do it without her. I don’t know how I survived from May to October without her. She is one of the greatest blessing in our entire journey. We are so blessed to have her as a part of our family. Emma knows when Miss Tonie is here without even seeing her. She definitely has a very special bond with Tonie that no one can compare too, not even Mommy or Daddy. For this we are very thankful!

            Winter has arrived and this means it is time to prepare for all bacterial, fungal, and even those pesky viral infections. Should we just pack our bags now? We would prepare as much as we could. No unnecessary appointments, monthly synagis injections, flu shots, and IvIg every three weeks to boost her immune system. We would go on to spend the rest of October at home. Limiting everything was proving to be very successful! However, November 1st Emma had an unexplainable elevated heart rate so as a precaution we went in for a 24 hour observation and come home on IV antibiotics until cultures came back with no growth and we stopped her antibiotics. Through November, Emma would have Vision Therapy twice and have a check-up with the ophthalmologist. She participated in her first Children’s Miracle Network event on the 15th of November. Her story along with many others were heard over the radio while people called in and made donation to make miracle stories like Emma’s so successful. It was an amazing event and we were honored to be a part of such an amazing group of people who have done so much for our family, especially Emma. By the 20th, we were back to our home away from home, the PICU. We would go on to spend Thanksgiving in the hospital. With her infus-a-port and my willingness to learn how to do IV medications at home, our stays were short and sweet. We were only in the hospital for four days this time and then went home on IV medications. This port is such a blessing and makes things much better for Emma.

            This crazy year was drawing to an end. December was here and the only appointments that were planned were the 7th with the Audiologist for a hearing aid meeting and the 21st for Emma’s IvIg infusion. By the grace of God, Emma stuck to our schedule and our Christmas wish came true. We were all able to wake up Christmas morning as a family. Speaking of Christmas, our family throughout the year went through a lot of financial difficulties and Christmas is not something we had the funds for this year. There are so many amazing people out there. Emma’s St. John’s Family and our Olive Garden Family adopted our family and bought gifts for Christmas for our girls. Christmas 2012 will never be forgotten. Emma and Maddie had a total of 117 presents, mostly from complete strangers. God’s work is a beautiful thing. We knew that we have inspired people and that we had a great support system but we were in complete and total shock at the amount of people who supported our family. It is such a blessing to have all of these amazing people in our life.

            With the new year comes a new attitude. We are more than ready to see what Emma has in store for TEAM EMMA this year. In January, we welcomed three new therapists into our home on a weekly basis along with the three that we already had. This is something I have been wanting for months and it finally worked out! Emma is receiving Occupational therapy, Physical therapy, Speech therapy, Developmental therapy, hearing therapy and vision therapy. The milestone she is reaches in just the last few weeks is making me so excited to think of where she will be in a few months! She never seizes to shock us all with her abilities.

            February brings Emma’s first birthday which doctors had initially told us more than likely would not be something we would be celebrating because some of them didn’t think Emma would survive that long. Due to her immune system she is unable to have a “birthday party” where family and friends come to celebrate but we are trying to think of something that will be as unique as her. We may do a “card party” where everyone who wishes to can send Emma a card and we will keep all of them in a binder for her. When she gets old enough I know she will enjoy looking through and seeing everyone who supported her on this unknown journey. Emma will continue with all her therapies on a weekly basis. I definitely see her sitting by the end of February. For us, that is a huge accomplishment.

            Emma’s future will always be unknown, this is something we cannot change. Just because we cannot change it does not mean we let it limit the things we let her experience nor does it change the way we feel about her. If anything we are thankful that Emma’s rare condition has made our lives better in numerous ways. We live life for that very minute, in return it makes every minute worth living. She has inspired so many people to make numerous positive changes in their lives. She has inspired others on their own medical journey to “fight as hard as baby Emma”. All of this makes it worth it. Do I wish I could shake a magic wand and heal her completely? Absolutely, what mother wouldn’t? However, I feel blessed to have such a unique child who has inspired so many people to live better lives.

            Most importantly, we could not be where we are today without the love and support of TEAM EMMA. From our St. John’s family to our Olive Garden family we continue to beat the odds as a family! The biggest part of our journey has been our faith and the strength we have gained through our situation and our experiences over the last year. We have grown so much in our Christianity. There were several days when our preacher continued to assure us that God will not give you more than you can handle. With the help and support of our wonderful preacher through this last year, we never gave up hope when it mattered most. Emma is a true blessing from God and she continues to beat the odds every day of her life. I honestly believe that without God we wouldn’t have made it through the first few days let alone the whole year. I hope many people who are unsure hear our story and know there is no other explanation for Emma’s journey then to know God held her through it all. 

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