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Brooklyn's Story

Brooklyn, our Miracle ~ Chronicles part 1

The following story is a chronological account of an incredible miracle written from an aunt’s perspective. 

May 2, 2008 – Tiny Brooklyn Marie was born on this beautiful spring day, which was only fitting as spring is the season of new beginnings. My brother Matt, sister-in-law Kristy and 4-year-old nephew Steven were overwhelmed with happiness as they welcomed this dear little girl into the family. We were all extremely ecstatic with joy; I only wish I could have been there to personally welcome her into the world.

May 26 - I flew home to Minnesota over Memorial Day weekend to meet Brooklyn for the first time and to be her Baptismal godmother. I remember holding her and thinking she was so perfect in every way - tiny and cute like all babies – but even more so, because after all, she was my niece. It was wonderful to be able to spend time getting to know her and to reunite with my family. This was my first visit back to Minnesota since moving to Connecticut two months earlier to work for the Disney-owned ESPN, and I felt great when I flew back to my new home.

August 3 – It had been a long time since I had been able to visit with my brother’s family and to see my niece and nephew. The technological marvel of Skype had provided me with a way to chat with them and actually see how much the kids had grown, especially our little Brooklyn. I had no way of knowing, but this was the last time that I would see Brooklyn before her new journey would begin.

August 5 – I called my brother to let him know I was coming home for a visit. The call was pleasantly accompanied by the sound of Brooklyn making noises in the background. I told him how much I was looking forward to seeing them on August 16. They were all planning to pick me up at the airport and we were to also visit my 90-year-old great uncle who lived nearby. On one of the days during my visit, we also planned, and had already purchased tickets, to see the featured Star Wars exhibit at the Science Museum of Minnesota. Most of all, I was really looking forward to holding Brooklyn again.

August 7 - God works in mysterious and incomprehensible ways; and, He sometimes provides us with some unpredictable death defying challenges in our lives. I had just finished talking on the phone about my upcoming visit with my great uncle at 6:30 p.m. when another call came in. It was my dad. He was on his way to a Rochester Mayo hospital with my mom, brother and one of my brother’s close friends. My dad told me that Brooklyn was found gasping for air during her afternoon nap and she was having difficulty breathing as she was being airlifted to the hospital. It seemed like an eternity before he called me back at 10:00 p.m. to let me know that Kristy and her family were now in Rochester as well, but there were no conclusive answers from the emergency room yet; only more questions. Dad called me back again at midnight and said that the doctors had Brooklyn on a respirator because she had stopped breathing again and they were still trying to stabilize her. I was deeply concerned and helpless, but knew everything possible was being done in the best medical facility in the world. But the long-distance waiting was killing me; all I could do was pray for a fast diagnosis and quick recovery.

August 8 - I talked to my dad early in the morning and he didn’t have any new updates other than that Brooklyn was now in the pediatric intensive care unit being closely monitored by a team of highly skilled doctors and nurses. He went on to tell me that a nurse was in the room with her at all times and only 2 people at a time could be in the room with her. Even though I was still feeling upset and helpless, I decided to go to work to help pass the time while waiting for the call to come that would finally put me at ease. It never came. Instead of receiving the kind of call that I had prayed for, I received a call at noon from my brother explaining that Brooklyn was experiencing two different types of seizures – the visible kind that you can see and another type which was causing pressure on her brain. The only glimmer of good news I got from Matt was that the doctors had indicated that because she was so young she still had her ‘soft spot’ so any swelling of the brain that might occur would not be a problem. The doctors and specialists tried various dosages of several types of medications on her and sedated her for MRIs, CAT scans and other neurological tests. Later that night, they put Brooklyn into a medically induced coma in order to give her seizure stressed brain a rest and in an attempt to stop the continuous seizures she was still having. I had no idea of how to comprehend all of this; I could only feel numb with disbelief.

August 9 - My aunt Ann called me early in the morning, as she does every Saturday so we can catch up on the latest family news. Ann knew that Brooklyn was in the hospital, but she didn’t have any other information regarding her condition. We kept our conversation short - conversation was hard for me at this point. Since I was up and needed to keep myself distracted, I decided to go out shopping to pick up some things for my upcoming trip home in a week, while praying everything was going to be fine with Brooklyn when I got there. While checking out at the store, my phone rang. It was my mom. She said my dad was changing my flights and I needed to come home immediately to be with Brooklyn and the family. My flight was booked for the following day. I raced to my apartment and started to throw stuff in my suitcase. I had not even stopped to think about what was really going on back home. Then it hit me. I broke down in tears thinking, “This can’t be happening.” There was no other information from mom, but I knew there was an important reason I needed to be with the family. Once I settled down and composed myself, I called my supervisor to fill her in. I went to my office at work to finish up a few things as I didn’t know how long I was going to be gone.

August 10 - I woke up at 5 a.m. to get ready to go to the airport. At this point I was trying to distract myself in order to keep my composure. The Hartford airport is an easy one to maneuver through so I decided to time the airport check-in process. It took me 5 minutes to get my ticket, check luggage and go through security. I became agitated as the line for coffee took longer than getting into the gate area. The flight was very smooth and uneventful, but still seemed to take too long as I was anxious to land and meet my family. I had tried to get some sleep on the plane, but all I could think about was Brooklyn and wondered why there was such urgency for me to get home – I could only think the worst.

August 10 - My mom was waiting for me at baggage claim. I came up behind her and gave her a big hug. We drove straight from the airport to St. Mary’s Hospital in Rochester stopping for only enough time for me to get a glow bear gift for Brooklyn. My brother had called earlier to tell my parents to prepare me for my first visit with Brooklyn and about how she would look when I arrived so that I would not panic. I remember riding up the elevator up to her floor and how tense I felt. The waiting room area was filled with family members, including my aunts and uncles. I passed them quickly as I was only focused on my brother from across the room. I went over to him and gave him a big hug. He told me a few things about what was happening and told me not to be scared. We walked very close to each other on the way back to her room filled with machines and medical equipment. I remember Matt quietly sliding the door open and seeing Brooklyn laying there so still hooked up to so many machines. This was not the same Brooklyn I remembered when I saw her last. I felt so hopeless standing in her room looking over her while wondering if she was going to be with us tomorrow. I couldn’t do anything but pray, pray for a miracle to happen. And so, Brooklyn’s miracle story began. 

Brooklyn, our Miracle ~ Chronicles part 2

The first chronicles of Brooklyn’s story from my perspective as her aunt 1500 miles separated, was titled Brooklyn, Our Miracle. It accounted the first week of a traumatic event in our family. The story began with her rush to the hospital and is a daily account of my experience during that first week. As this story unfolds, the timespan between events will grow further apart and there will be less detail. Nonetheless, the story of our miracle will be told.

August 12, 2008 – A vacation back to my home in Minnesota took place unexpectedly early due to my niece Brooklyn’s medical emergency which left her in a medically induced coma. I came home to be with my family as we tirelessly awaited the outcome. While home, I stayed with my parents; I was able to spend some quality time with my 3-year-old nephew Steven, who was also staying with my parents. I knew he would be staying with various family members during the upcoming days, so I cherished this time with him while I could be home. Steven and I played during the day but my mind often drifted off thinking about Brooklyn lying in the hospital bed holding on to life with her parents at her side. After mom and dad got off work, we would make the hour and a half drive to Rochester to visit. As we entered the hospital parking garage, Steven said “Oh, the spooky tunnel.” He is quite the animated kid and he commented about the twists and turns in the parking garage that he would be visiting far too often in the coming weeks. Steven has been taking all of this very well. He knew that his baby sister was sick but was too young to comprehend what this would mean to his family’s future. My brother Matt and sister-in-law Kristy took him back to see Brooklyn. Steven came back out to us and said, “She’s still sleeping,” while holding his head down in either a display of sadness or of confusion. Likely, it was a combination of both. It must be tough not to completely understand what was going on as he could sense the mood of sadness surrounding him. It was comforting for me to see the strength a 3 year old could display by showing his love for his sister and by providing some comic relief to the rest of the family.

August 12 p.m. - It was a lot quieter tonight as most of the family that had been there during the day had gone home. Brooklyn remained in the coma. The doctors and specialists continued to change the dosages of medications to stabilize the seizures and reduce the swelling on her brain. A full time nurse remained in her ICU room. One of her tasks was to periodically turn Brooklyn carefully as the countless wires monitoring her brain respirator and vital statistics could not be removed. I was fortunate to be in the room when the nurses switched her position and had the opportunity to touch her even though it was just her toes. I was able to give her a little kiss on the cheek. The gift of touch is a wonderful thing – something I could not experience with her from 1500 miles away.

Tonight I am able to sleep on the cot in her room, which gave Matt and Kristy some time together alone in a room right outside of the ICU. Someone from the family was in the room with Brooklyn at all times. For the past few days, Matt and Kristy had been taking shifts – and the number of ICU visitors is limited.

August 13 – It was a better day for Brooklyn. The doctors had started to slowly reduce the medication used to keep her in a coma in order for her brain to relax. During the night, she responded to her foot and hand being touched. It was not a big sign, but it provided some hope that her recovery was still a possibility. Tonight I will be staying at the Ronald McDonald House. This is a wonderful place for families of those requiring extended stays at the hospital. It was a short walk from the hospital and provided a place to eat, sleep and think outside of the hospital environment. The house is somewhat like a hotel where each family has their own room and private bathroom. On each floor there is a huge kitchen, lounge areas and a play area for the kids. My brother and nephew also will spend the night here with me. There are a number of activities at the house for Steven to enjoy. I still had this uneasiness as we were all still in a cloud as to what was going on with Brooklyn. The doctors and nurses provide care, but few answers as to why or what had happened, other than a temporary loss of oxygen for Brooklyn that resulted in this chain of events. It sounded much like a SIDs-like trauma, only miraculously, she had survived.

August 14 - Yesterday was a busy day for Brooklyn. In the morning Matt and Kristy went home to do a few things and to get clothing and the things that they would need in the upcoming weeks. This allowed me to spend some personal time with Brooklyn. She was doing really well in the morning and was wiggling a little bit more each time the nurses moved her. Just before Matt and Kristy’s return, Brooklyn peeked her eyes open just enough for me to see how blue they were. I remember thinking how I thought they were telling me that everything was going to be fine. Unknowingly to any of us, this was an ironic sign of the results from the trauma that she had been through. Later on in the afternoon, the specialists took many more tests: an MRI on her neck to make sure that swallowing would not be an issue when she would begin eating again and a CT scan of her head to gauge the impact of oxygen loss on her brain. These tests provided some positive results. They disconnected one of the machines used to monitor brain waves as she had not had seizure-related activity in the past 24 hours. A sense of relief on my part as this was another sign that things might be getting better. I went home with my parents feeling a bit rejuvenated.

August 15 – I no longer felt at ease when my phone rang, as that is how I received the alarming news that Brooklyn was being rushed to the hospital. Good news usually came when I was visiting the hospital. Part of me wanted to stay with her every minute, but the positive signs during the prior day allowed me to relax enough to go ahead with some of the original plans of my earlier anticipated vacation.

I am not with Brooklyn today, but I am with her in spirit. I decided it would be nice to help my parents with a few of their household chores while they were at work because their nights were always spent at the hospital. This also allowed me some time to go through some boxes of mine that I did not take with me when I moved. My parents are planning a driving trip out to see me in the fall and they will bring along some of these items. Mom and dad appreciated my help as they had very little time to take care of things at home while trying to work their full-time jobs and spending their evening hours driving back and forth to the hospital. This evening, I plan to go visit with some of my college friends in Mankato, and to see some of the girls I had worked with at the local TV station. We had decided to meet at my favorite coffee shop, Dunn Brothers.

Oh, back to the phone calls. My brother called with an update on Brooklyn. She was back on the monitor as there were some physical signs of possible seizures. It took my breath away for a while and made for a long day – my mind was drifting even as I visited with some of my close friends.

August 17 - I was back at the hospital again, and there were once again some positive signs of improvement in Brooklyn’s condition. She is wiggling around more and opened her eyes for a little bit. Mom, Dad, Matt, Steven, my friend Danielle and I went to the Science museum to see the Star Wars exhibit as we had originally planned. My sister-in law insisted that we go and she would stay with Brooklyn. Kristy did not spend much time away from her daughter’s side during Brooklyn’s hospital confinement. It was nice to be out of the hospital setting and enjoying the day with my family even though thoughts of Brooklyn were on everyone’s minds.

We returned to the hospital in the evening. She was really wiggly and couldn’t get comfortable. They found out she was having more seizures. This was not the news we were hoping for. The doctors indicated the seizures were not as bad as before but as a precaution, put her back into a medically induced coma. More changes were made to her anti-seizure medications and the doctors continued with the close monitoring of her. She is so tiny and doesn’t need to be going through this. I felt confused as I thought she was gaining some ground and now a setback. I am supposed to fly home this coming Wednesday. As a new employee at ESPN, I had taken extra time off due to this circumstance which they totally understood. I knew though that my return was needed - more importantly I needed to know Brooklyn was going to be better before I left. What an emotional roller coaster for all of us.

August 18 – More good signs! After a short time in the induced coma, she was brought back out of it and the new medications were showing positive results. The medications provided relief and she had very small controllable seizures. They felt confident this was going to be the last time for this extreme method of controlling the issues.

During the day, I was able to visit my Grandma’s house and I was met there with several of my cousins. I, of course, did not have time on this visit home to see many of the other relatives. This was a special time for our family as this week marked the anniversary of my grandpa’s passing away. This date was memorialized by my cousins each year as our grandpa played a big role for all of us and we missed him greatly. With eight aunts and uncles, the group of cousins is quite large. Grandma really enjoyed seeing all of us and having the company as she did not get out much. She was very interested in Brooklyn’s condition and wanted to hear about it firsthand. Before I left, I was able to talk the cousins into having a group photo taken. I think all but 5 were there, which was quite amazing.

August 20 –Twelve days have passed and it was time to go back to Connecticut. Things appear to be going well for Brooklyn and everyone assured me of that, and that we would keep in constant touch. I was still a bit numb, but knew that I had to get back and move forward while hoping and praying for the best. My strong family ties made the return very difficult, but I knew it was necessary.

August 23 – The past few days have passed with some ups and downs in Brooklyn’s condition. The doctors believe that they have finally found the right medication to control her seizures as she has now gone for more than 24 hours without having any. On the day I left, they moved her from ICU down to the pediatrics floor while still being closely monitored. Also, on the day I left, everyone got the great news that they could finally hold her again! I just missed it! Oh well, I will get my chance in December when I return for the holidays. It seems like it is an eternity away. But, I am so thankful to know that she is out of immediate danger and is making some steps toward recovery. The road ahead is rough as I am so far away. Fortunately, I have wonderful co-workers, friends and my strong faith. I know that prayer is a powerful thing, especially when so far away.

Up to this point I knew little of the impacts of these events, and how it was to change my family’s lives forever. 

The Chronicles of the Brooklyn Miracle ~ part 3

This third posting continues to outline daily accounts of Brooklyn’s miracle from my 1500 mile viewpoint.

August 27, 2008 - I received some really good news today - my brother Matt called and said that they had gotten a short-term pass to take Brooklyn out of the hospital for a change of pace and some fresh air. They took her out for a ride and stopped to pick up some of the prescription medications and medical equipment she would need at home once she was released; which sounded like would be soon if she continued to improve. This was great news for our family!

August 30 - Brooklyn was released from the hospital after her nervous, but excited, parents had received their final instructions and training on how to care for her at home. She was home – finally! Steven was also excited about having his whole family together at home again. He was such a good little trooper though the endless hours he had spent in the waiting room and cramped hospital room. He had no normal continuity in his life as he had been shuffled around to stay with many family members during the past month. I am so excited because tomorrow they are going over to my parents for dinner and I will get to see Brooklyn on the web cam.

September 11- Brooklyn returned to the hospital in Rochester to undergo some further testing and evaluation. She had been very fussy, seemed uncomfortable and was having difficulty adjusting to being at home during the past few days. Her blood test results indicated that everything was going well, but they stayed the night to monitor her just to make sure. It will still take some more time to get her medications adjusted at the right levels; this continues to be an ongoing issue for her doctors and those caring for her.

I learned today that Brooklyn is legally blind. While hearing this news, a huge hole opened in my heart as I wondered what the future would hold for her. It was devastating to learn that those big beautiful blue eyes would not be able to see those who love her and the wonderful world around her. How frustrating and frightening this must be for her as her eyesight was normal at birth and now it was suddenly gone. News such as this was definitely not something that the family wanted to hear on top of the prior realization that Brooklyn was already physically and mentally impaired. Even though she is not paralyzed and can move her head, limbs and body, she cannot lift her head on her own or sit up or roll over. She will always be developmentally challenged due to her extensive non-reversible trauma caused by swelling of the brain caused by the temporary loss of oxygen. Her blindness is due to the non-reversible trauma to the area of the brain located in the back of her head, which was confirmed through the CT scans and MRIs performed by the neurologists. About 70 percentage of her brain was affected due to her unexplained lack of oxygen and it is unknown how much she will be able to comprehend as she grows older. One thing is clear though, her hearing appears to be unaffected and she responds very well to voices and the sounds around her. We are comforted to know that she has that going for her. As I try to think back at all the medical terms and issues thrown at our family, it sometimes is just noise and all I can think about is how unfair this is to Brooklyn. I know my family has been careful about giving me details and they try to pick the right time to tell me these things. I am thankful for their support and cannot even imagine how difficult this is for my brother and sister-in-law.

October 20 - A large fundraising benefit was held for Brooklyn and her family. I was able to take a few days off work and fly home for the wonderful event. It was great to see all of the support that family, friends, neighbors, church members and co-workers have given our family. It was nice to spend time with everyone and to see Brooklyn doing so much better. I remember how relieved I felt when my family picked me up at the airport. When we stopped to eat, I actually got to hold Brooklyn and it felt great! This was the first time I had held her since I had been home for her baptism in May. It was a warm and comforting feeling to hold her against me, which reassured me that everything was going to be alright.

December 6 - Brooklyn began having seizures again. She was taken back to Rochester so the doctors could once again re-evaluate her medications. It was explained that because she has multiple types of seizures it was difficult to find the right combination and dosage of anti-seizure meds to quiet all of them. It was kind of a trial and error situation.

 
December 17 - I was able to be home for a few days before Christmas. It was a very humbling and special time for our family, as just a few months earlier, we didn’t know if Brooklyn would live to her first Christmas. Brooklyn was our family’s best gift of all – having her with us was the only thing that really mattered. Steven really enjoyed opening her gifts and putting all of the bows on Brooklyn. At the end of our gift opening, she looked like a big gift – Brooklyn is a Gift from God and a confirmation of our faith that His wondrous miracles do happen.

 

Brooklyn, our Miracle ~ Chronicles part 4

January 20, 2009 - Brooklyn was taken by ambulance from the emergency room in Mankato (about 10 miles from where she lives) to St. Mary’s Hospital in Rochester. She was not eating and getting dehydrated, and because she needs specialized care, she was taken to the Rochester hospital where her doctors could work with her. She has been diagnosed with a viral infection and is being treated and re-hydrated through an IV. The nurses also continue to administer her anti-seizure meds through the IV line feed.

January 28 - During the times when Brooklyn is hospitalized, I have a difficult time keeping a positive attitude and become quite depressed as I feel that there is so little I can do. I cannot be there to hold her hand; however, I know that she is in good hands and is being cared for by the world’s best doctors and nurses. Brooklyn continues to be a strong-willed little fighter, perhaps a lot stronger than I feel.

May 1 - I flew home to surprise Brooklyn and her family on her first birthday. My parents were sworn to secrecy and were the only ones who knew I was coming. They had gotten Steven for the night and they all came to pick me up from the airport. Steven was really happy to see me. The best part of my reunion with him was when he said “You’re really here, Auntie Sarah!” “You’re not in the computer!” Skype is a wonderful thing, but not as wonderful as being able to hold and hug those you love and miss when you live 1500 miles away.

May 2 - Brooklyn’s very first birthday! What a joy to be here to celebrate

August 7 - Today marks the one year anniversary of the beginning of Brooklyn’s miracle journey. I took the day off from work and got up early to go to church. Then, I went with a friend to a nearby lake and sat on the beach to spend some time reflecting. It was a nice drive and the perfect time to think about all of the good things in life that God has given us.

January 18, 2010 - Brooklyn has been doing well and has made much progress over the past few months. Therapists come and go from her home as they continue to work with improving Brooklyn’s physical developmental skills. She also continues to have regularly scheduled follow-ups with her doctors. The decision has been made to have her future care provided through the Gillette’s Children’s Hospital in St. Paul, MN, where they specialize in pediatric neurological care. This children’s hospital is world-renown for its long-standing pediatric care facility and specialized team of doctors and nurses. Note: My grandpa was hospitalized at this same hospital for two years in the early 1930s with polio when he was 13 years old. Through the excellent care given by the doctors, nurses and nuns who worked there, he was able to live a fulfilling life as a hardworking farmer until he passed away at the age of 65. Many miracles through the years have taken place at this special hospital.

April 2 - Brooklyn has been busy during the past couple of months since the last update. She has gotten some new equipment to help keep her progress moving forward, including a “stander” to help her stand upright so she doesn’t have to be held or sit in her chair continuously. After six weeks of home remodeling, an elevator has been installed allowing Matt and Kristy to have the ability to bring Brooklyn and her wheelchair from the garage to the upper level of the house. Brooklyn will be having hip surgery on both hips this next week. Due to the fact that she has never walked, the normal development and placement of her hips has not happened. Both of her hips are out of proper placement and this surgery to insert plates along her hip and leg bones will help give her a chance to possibly have the opportunity to walk someday.

April 4 - Brooklyn is doing well. We have not received any of her latest test results yet, but she got through the surgery ok. The doctors had no problems with her vital signs and the medications didn’t seem to cause any seizures. She did, however, need a blood transfusion. She is resting in her room and is showing some signs of pain and discomfort. Brooklyn is now in a body cast from her chest down to toes. She will need to be in this purple (yes, I said purple!) cast for at least 6-8 weeks! I am sure that it will be quite the process to change her diaper as the opening to do so is very small and limited. I hope the doctors know what they are doing with this situation!

April 7 - I was able to see Brooklyn in person at the hospital tonight as I am in Mpls/St. Paul with two of my co-workers on a three-day baseball road trip. We came to see the Twins play the Red Sox at the new Target Field. It was good to see Brooklyn – holding her atop a bunch of pillows with her bright purple cast was a sight to behold for anyone passing by her room!

May 18 - Brooklyn’s bright purple cast finally came off much to the relief of her parents. The cast was extremely heavy and cumbersome when her parents and caregivers needed to do even the simple tasks. Brooklyn was definitely not comfortable being in it and neither were the parents in their efforts to care for her.

June 5 - Brooklyn had minor surgery to insert a feeding tube known as a G-tube into her stomach allowing her to have supplemental fluids and medications. Brooklyn has been experiencing some digestive system issues, including acid reflux, and the doctors believe that this is the best solution. This G-tube will most likely be temporary.

June 18 - I was able to fly home and spend a few days with my family on a fishing trip to a resort in northwestern Minnesota. Brooklyn was doing great following the G-tube procedure and we were able to line her wagon with blankets and give her rides around the cabin and resort. It was really nice to spend some quality time with my family and enjoy Brooklyn.

 

Brooklyn, our Miracle ~ Chronicles part 5

February 19, 2011 - I was in the middle of a Skype conversation with my dad when he suddenly said that something came up and he would call me back later. This was not like my dad to hang up so quickly. I had a gut feeling something “not so good” was happening.

I finished my chores to keep busy and my mind off the unknown that was happening at home. I laid down to rest and tried to nap, but I was not able to relax. What was going on at home and why didn’t I get a call back? It’s not very often that I get a call from my mom’s phone so I wasn’t sure what to expect when I saw that the call was from her. I could tell from the background noise that my parents were on the road. She asked me about my day and what I was doing - I could tell she was distracting me and prolonging the news she was about to give me.

Earlier in the week, Brooklyn had had a seizure - one that lasted longer than some of her usual ones. Dad had seen her this morning and said that she was coughing a lot with a cold she had. She had another seizure around noon and was having difficulty breathing so my sister-in-law called 911 and the local rescue squad was called. After a short evaluation, they contacted the hospital and a decision was made to transport her immediately to the Gillette’s Children’s Hospital in St. Paul. The Mayo One helicopter arrived about 15 minutes later and landed at a pre-set emergency landing site which was less than two blocks from where my brother’s family lives. It is reassuring to have this kind of medical help so close by and readily available for Brooklyn. My sister-in-law went with Brooklyn in the helicopter and was able to update and answer the questions that the paramedics were asking during their flight to St. Paul. My mom and dad had stopped to pick up my brother (who came home from work early) and they were all on their way to the hospital. Steven, who had done an outstanding job in letting the rescue squad in and an awesome job helping out, was dropped off at one of his aunts who lived along the way to the hospital.

Just sitting and waiting for the next call always makes me feel so helpless. This is always tough as I think to myself why her, this little girl, why not me? I know God will watch over her and that she is in good hands - I am praying for the best.

February 20 - The doctors kept Brooklyn on oxygen throughout the night in order to get her levels back to normal and they now have her stabilized. She continues to be a strong-willed little fighter and is getting the medications and care that she needs.

February 21 - It was diagnosed as a case of bronchitis, which started triggering the seizures. With the proper medications, Brooklyn should be well enough to go home in a few days. I was able to Skype with her in the hospital tonight, so I read her the 101 Dalmatians from my Disney storybook. She seemed to listen very intently and at times smiled. It is during times like this that make me realize how precious and special she is to me and her family, and that we should never take her for granted or forget just how fragile she can be.

March 16 - Brooklyn started preschool today! She will be going just a couple of mornings each week and will be accompanied by her Grandma Schnoor. (As previously mentioned, Kristy’s mom is trained to care for Brooklyn’s needs when her parents are not there.) I just can’t believe she is going off to school already. It will be great for her to be out in another setting and to be around other kids. They will also enjoy meeting her! While at school, Brooklyn will receive some of the therapy that she had been receiving at home and her teachers will be pushing her to new limits.

And so Brooklyn’s story continues on. . . 

Brooklyn, our Miracle ~ Chronicles part 6

July 28, 2011 - Mom sent me an email today to let me know that Brooklyn was back in the Gillette’s Children’s Hospital. She has not been feeling the greatest and is having stomach issues. She has had similar issues before and I am hoping that this will be a short stay for her and the doctors are able to figure things out quickly.

July 29 - Looks like my wish for Brooklyn to be in the hospital for a short time is not going to happen after all. She has an inflamed pancreas (pancreatitis) and a possible urinary tract infection. The doctors are continuing to monitor her closely and she is getting morphine for the pain and antibiotics to fight the infection.

July 31 - Living so far away has many disadvantages, especially at times like this, but thanks to the technology of Skype, I am able to visit Brooklyn in the hospital from time to time. My brother works the weekend shift so my parents brought him back up to the hospital tonight to be with Brooklyn during the week. I had a great visit with my Mom, Dad, brother, sister-in-law, Steven and Brooklyn. I had not seen Brooklyn via Skype since her 3^rd birthday in May.

August 5 - The last couple of days have been very trying for Brooklyn. She is not tolerating her feedings like we had hoped and she continues to be in pain. The doctors were originally supposed to do a special scope test on her at the University of Minnesota Children’s Hospital, but due to the pancreas still being inflamed, they were unable to do it. The good news is that Brooklyn has been moved to another floor and she is the first patient to stay in a newly remodeled room. The room is quite spacious and a special lighting design includes an area around the ceiling that has color changing mood lights.

It is close to the 3 year anniversary of the events leading to Brooklyn’s on-going struggles. I continue to wonder why this is all happening to our precious Brooklyn. We can only have patience and hope to see what the future will bring for her. She is our miracle and has filled a hole in all of our hearts through her courage and strength.

August 7, 2011 - Three years ago today our family began a never-ending journey of challenges. This journey has been filled with Hope, Faith and Love. And, as the bible teaches us, the greatest is Love.

Today, Brooklyn is still fighting her daily battles. No matter what day it is, she shows how resilient she is with her remarkable smile and her little giggles. Brooklyn means everything to our family and has helped us grow stronger in our faith. Through Brooklyn, we find strength when we are at our lowest point. Through Brooklyn, we have the courage to know that God saved Brooklyn and gave us a miracle for a reason. These are memories that we will treasure forever.

The support that Brooklyn’s family has given her is indescribable. It starts with her parents - my brother and sister-in-law, Matt and Kristy - who have sacrificed so much of their lives to make sure that Brooklyn is properly taken care of and shown unconditional love each and every day. They administer her medications and feedings day and night. Not once have they ever complained about having to take her to the doctors, sit for hours during tests or lose patience when she is in the hospital. Her grandparents have been there every step of the way. They have made several trips to the hospitals to see Brooklyn even after working all day at their full-time jobs. Many family members stay with Matt and Kristy to lend support while Brooklyn is in the hospital – Kristy rarely leaves Brooklyn’s side when she is in the hospital. Family members trade off to make sure brother Steven and their dog Buster is taken care of. Steven provides much needed comic relief for everyone and is quick to show his love for his sister.

Brooklyn, our Miracle ~ Chronicles part 7

September 7, 2011 – I can’t believe that it has been a month since my last post. It seems like it was just yesterday when Brooklyn was admitted to the hospital, even though the reality is that she has been hospitalized for the past six weeks. She has had a few really good days, some just “ok” days and those days that are simply frustrating – while her family is hoping and praying that her pancreatitis and the persistent inflammation will subside to alleviate her pain. The highly trained, very determined pancreatic specialists have attempted on three separate occasions to insert stents into her main pancreas duct via a very delicate scope procedure. All three stents have failed. Even though all of this, Brooklyn continues to be a strong little fighter and shows us her smiles when she can - that is what gives everyone renewed hope. Brooklyn continues to be on pain medications including morphine to help control her pain and Ativan to help calm her when she shows signs of discomfort and becomes agitated - this combination of drugs seems to work ok, but makes her very tired and somewhat nonresponsive at times. The doctors are planning a care conference with my brother, sister-in-law and Brooklyn’s grandparents to take place soon to discuss the long term options for Brooklyn. 

Brooklyn’s current situation and hospital stay has resulted in a rollercoaster of emotional battles for me. Each time a new stent was placed and Brooklyn started to feel much better for a day or two, I felt elated with an emotional high; then about the third day, she would start to feel very ill again and it would be discovered that the stent didn’t work, and I felt awful. Each time, I also wondered why God does not show her some unconditional love with a positive solution to this difficult situation. Even though I cannot be there to hold her hand, I am able to Skype with her and see her beautiful little smiles and hear her try to giggle. These are the times that I treasure most.

Big brother Steven starts kindergarten today and it breaks my heart to know that his parents are not able to give him a great momentous send off to school in person like every other new classmate’s parents are doing – instead, Grandpa Denn (who Steven adores and considers a genius) is dropping him off and taking pictures to share with everyone. It amazes me how much strength there is in our family who tirelessly support each other to see that everyone’s needs are met and help keep Brooklyn’s family strong for those days that are not going so well. Prayers through faith, love hope are what keep us together, and that is what I have been doing one day at a time. 

Brooklyn, our Miracle ~ Chronicles part 8

September 20, 2011~ Brooklyn’s doctors from Gillette’s Children along with the University of Minnesota gathered with my brother, sister-in-law and grandparents a few days ago to go over what the next plans for Brooklyn are. The decision was made to manage Brooklyn’s pain through medication since she is still quite young. This was good news as it has been a long road for us. It will continue to be challenging. My brother and sister-in-law went through some training on how to care for Brooklyn as she will be leaving the hospital soon and be cared for at home, another piece of good news.

September 23 ~ Brooklyn has been released and moved to into the Ronald McDonald House with her family. This will be good as they will be close enough to the hospital until they are comfortable managing her medications.

September 24 ~ Well today we had another set back. Part of her IV port was not properly changed and so she was not getting her medications in the right place. I am not sure how long she will be in the hospital again. All I can do is pray that it will be a short visit and not as long as she was just in there for. Hearing about set backs is not that easy being far away. There is so much that I wish I can do for her and the family, but know that I have to keep praying and continue on my own path of life.

September 29 ~ A lot can happen in a few days. Brooklyn was once again released from the hospital and then brought back in for a blood transfusion as she has low hemoglobin levels. They were going to remove her plates in her hips this next week, but have decided to wait until her pancreas heals more. She continues to be in good spirits.

October 7 ~ Brooklyn was finally released from the hospital and then was doing well enough at the Ronald McDonald house that they came home yesterday! Steven was very excited to have his whole family back together again, including the family dog Buster. It will continue to be a long road ahead as Brooky needs lots of medications and more importantly love and support, which she is getting a lot of. I wish I could have been there to welcome her home! It was a big brick lifted off my heart when I heard that she was going home. God is good.