Hi all! This is Brooke’s birthday week, and I would like to do something a little different. I would like to tell you Brooke’s story. Of course, this will have to be the shortened version because I could type and type and type and never be totally done telling her story. I will warn you that I am posting pictures of Brooke from the beginning. You will see tubes, wires and equipment. You will also see how far this little girl has come. Please do not be scared. Do not be sad. Do not feel pity. I could tell you not to cry, but I have cried almost the entire time I’ve been working on this. It’s almost been therapeutic for me to write about it. I remember much of this like it was yesterday. It certainly doesn’t feel like it’s been two whole years. This is a part of her, and I want to share it with you. Another warning: Although I am giving you the shortened version, it’s still pretty lengthy. You might have to reserve a block of time to read this one.
Brooke Abigail Tweryon made her grand entrance into the world on Monday, March 24, 2008. She was born at 3:58 p.m. She weighed 4 lbs. 9 oz and was 19 ¼ inches long.
Rewind…
We found out we were pregnant with Brooke on Thursday, September 6, 2007. This was one month before Hadley’s first birthday so naturally we were a little shocked, but excited. They originally thought I had miscarried, but a week later a blood test confirmed that I was indeed pregnant. The first half of my pregnancy was pretty normal. I seemed to be getting bigger than I did with Hadley, but I chalked that up to it being my second pregnancy. In December we found out we were having another girl; Brooke would be her name. Like I said, I felt bigger with Brooke, and people would often be surprised when I told them my due date.
On Monday, February 18, I had a routine doctor’s appointment. Dr. Bradley asked if I felt big, and, of course, my answer was yes. Instead of measuring 28 weeks, I was measuring 37 weeks. I looked like I could deliver now, and I wasn’t due until May 11. He sent me to ultrasound to check things out. During the ultrasound, they noticed I had too much amniotic fluid, polyhydramnios. An average number for fluid would be anywhere between 15-20 and mine was 33. Wow! I can’t even describe how I felt at this moment. The very thought that something might be wrong with my baby was terrifying. They sent me to a specialist at St. John’s where they looked at EVERYTHING! They explained that extra fluid could be due to diabetes, baby not swallowing enough, baby not peeing, or it could be nothing. Like I said, they looked at everything and assured us that the baby looked fine. We watched her swallow, saw fluid in her belly, and everything else checked out as well. But I still had too much fluid. I started seeing my doctor every week and he sent me back to the specialist when my levels continued to rise. Again, things looked fine. I, however, was miserable. I was HUGE! My uterus had stretched as big as a mother’s that was carrying triplets, and this was tricking my body into thinking I was ready to deliver.
The morning of Monday the 24th I woke up not feeling well. After having Hadley, I kind of knew what to expect. I told Brian I just didn’t feel right; but we had a regular appointment with my doctor anyway, so I just waited. Brian called in so he could go with me. After an examination, my doctor told me I needed to go to the hospital. He also told me I needed to go to St. John’s not Memorial, where I had delivered Hadley. This was extremely scary. I knew he was sending me to St. John’s because they are equipped to deal with high risk pregnancies and they have a NICU, where Memorial does not. We had no idea what to expect. I remember calling my mom crying on our way to the hospital.
We arrived at the hospital where they admitted me to a birthing room. The specialist came in and explained our options. They gave me a steroid to help Brooke’s lungs and magnesium to try to stop my contractions. We were also going to drain my fluid. This procedure was similar to an amnio where they stick that really long needle into your belly. They actually had to give me some medicine to relax me because I was so upset, nervous, anxious, scared etc… The doctors originally thought they would drain my fluid; this would stop the contractions, and I would go home until my due date. Well, they drained my fluid (3 liters) and sent me back to the room. During the procedure we watched Brooke suck her thumb, swallow, move, all the things she was supposed to be doing. I even remember laughing because they were all talking about how much hair she had.
A little while later we were back in the room with my mom and dad, and Brian’s mom. They were all sitting with me, and I started having some serious contractions. I absolutely knew this baby was coming now. However, one of my nurses kept telling me that because they had taken so much fluid it was sending my body mixed signals and that the magnesium would start working and would stop the contractions soon. I wanted to strangle her. Everything from this point on is kind of blurry, but my mom and Patti can tell you that I was not happy. I was in a lot of pain and I needed someone to listen to me. A doctor finally came in and what do you know, Brooke was coming, and fast. Ten minutes and a few pushes later, she was born. This was by far the scariest thing I have ever gone through. NICU doctors and nurses rushed into the room, our parents were rushed out. I couldn’t have any drugs for the pain; my baby was 7 weeks early and I had no idea what was going on.
At 3:58 she was born, and she was beautiful, but she didn’t really cry. They were examining her, and I was able to hold her for a few seconds until they told me she needed some oxygen. At this point, they told us they were taking her to the NICU which we assumed was because she was early. They wheeled her out and even let our parents see her on the way. They didn’t seem rushed, so we assumed everything was fine.
We were able to see her a few hours later. I honestly can’t remember what they told me when we got there. I was in a daze. She was on a CPAP machine to help her breathe, and she had wires and machines everywhere. Obviously, I couldn’t hold her so I touched her a little, cried a lot and left her there. I might say that this was one of the worst moments of my life as a mommy, and at the time it was, but unfortunately there were worse days to come. Later that evening, one of the NICU doctors came to my room and explained that Brooke was hypotonic. What? What is hypotonic? My mom and Patti were in there with me and we had no idea what he was talking about. He continued to explain that she had low muscle tone and seemed “floppy.” I remember thinking, “she is 7 weeks early. She’s not supposed to be here yet.” The next couple days are a total blur. I can’t remember exactly what doctors told us, but we knew something was wrong. Brooke could not breathe on her own. She even struggled with the help of the CPAP so they needed to put her on the ventilator. In the beginning, I just remember thinking it was all because she was premature.
During the next few weeks we met neurologists, pulmonologists, surgeons and geneticists. We learned the meaning of oxygen saturation, blood gases, and low minute volume, among many other things. I was asked questions like “Is there any possibility you and your husband are related? Has your husband ever hit you?” We watched our baby struggle for every breath she took, and we couldn’t do anything to help her. The doctor’s tested for about a million things, and everything came back normal. We went from thinking Brooke had a high diaphragm which could be pinned down to thinking she suffered a stroke while she was in my stomach. They mentioned Down syndrome, Toxoplasmosis, and Prater Willy syndrome, but they couldn’t pin point anything. At one point they told us we might never know what’s wrong. Throughout her stay in the St. John’s NICU, we tried many times to wean her from her ventilator support. She would do ok for a few weeks on the CPAP, but would need the vent again. Why did she continue to fail when we would remove her from the ventilator?
I would sit with Brooke everyday. I would read to her, sing to her and hold her when she was having good days. Our families would meet in the waiting room each night and we would all take turns visiting with her. I watched many babies come into the NICU and happily go home with their families. I knew Brooke had always been in God’s hands. I knew I was supposed to trust Him and have faith that things would all work out, but I remember being extremely angry, too. Why us? Why Brooke? What had we done wrong? Why couldn’t we take our baby home? I watched a lot of not good parents walk out of the hospital with happy healthy babies and here I sat, spending most of my waking hours with my sick child. Sometime during April, Brooke Abigail Tweryon became Brooke Abigail Faith Tweryon. I added the middle name Faith, because I knew I needed to stop being angry and have FAITH in God and also FAITH in my little girl. Don’t get me wrong, I still had many more days where I was angry at God. I think it’s difficult to completely let go of anger, disappointment and resentment.
When Brooke’s due date came, we still had no new answers, so Brian and I along with our parents sat down with the head doctor of the NICU. We simply asked, “If this were your child, what would you do?” He advised us that he would take her to St. Louis Children’s Hospital. The decision was made. Brooke would be transferred to Children’s. If I had it to do over again, I would have transferred her there immediately. It took about a week to get everything in order with insurance and transportation, and we were told that she would be airlifted on Monday, May 19th. I remember feeling a sense of relief that maybe we would finally have some answers. We arrived at St. John’s on the morning of the 19th and waited for the call. The flight crew was going to call us when they were on their way. They called, but it was to tell us that they weren’t coming because of some bad weather in the area. I remember feeling disappointed, but it didn’t last long because they called back a couple hours later and said they were coming after all. They arrived around 6:00 p.m. and began to prepare her for her flight. We were able to sneak Hadley into the NICU so she could see her sister and say good-bye. We took our first family picture. Watching your baby being wheeled to a waiting helicopter is not easy. What if they crash? What if something happens to her on the way? After it took off, I watched until I could see it no more, got in the car with Brian’s mom and started driving to St. Louis.
Brooke arrived in St. Louis about an hour and a half before we did. Brian had called and they informed him that she had pulled her breathing tube out and was breathing with the use of the CPAP machine. Wow! Look at that! She just got there and already they are doing great things. I honestly thought we would get an answer, fix the problem and be home in a few weeks. Wrong! While we did ABSOLUTELY love Children’s, they didn’t know what was going on either. We met many new doctors and many more tests were run. Again, all of the tests came back normal. I am going to condense the next couple months a little for time’s sake. We got a room at the Ronald McDonald house, met some wonderful nurses and doctors, and began doing some of Brooke’s care. We even tried feeding Brooke a bottle, and she did better than we anticipated. We again tried to wean her from the breathing machines, but eventually she would fail and need to go back on the ventilator. We tried a “magic drug” that didn’t work, and finally they said the word I had been dreading – tracheotomy. I can honestly say I didn’t really know what a tracheotomy tube was, but I knew I didn’t want my daughter having one. I tried every option, but after one pretty rough day, I knew it was the right thing to do. I was tired of seeing my little girl with a tube down her throat. The doctors assured me she would be much more comfortable and would start to be able to do more developmentally appropriate things. We actually had to give her morphine to calm her down so she wouldn’t rip the tube out of her throat. June 11th was the first time I went home in almost two months. I had been staying at the Ronald McDonald house and Brian and Hadley would come down on the weekends. I was beginning to tire both emotionally and physically and I knew it was time to go home. I called Brian and he drove down and picked me up, while Patti stayed with Brooke. From that day on, we made a decision as a family that Brooke would never be left alone. Someone would always be with her. We all took turns. I would be down there mostly during the week, and both sets of grandparents would rotate weekends. It was good for me to go home.
After making sure Brooke was infection free, we scheduled the surgery for June 18th. We decided to have a feeding tube inserted directly into her stomach and a muscle biopsy taken while they were doing the tracheotomy. The surgeon from Springfield didn’t recommend the biopsy because he didn’t think she had a mitochondrial disease. But, we figured we might as well do it because she would already be in surgery. Surgery day was extremely tough for me, but Brooke came through like the fighter she is. When she came back to her room, she was wide awake and for the first time, I was able to see her beautiful face without any tubes or wires. She was beautiful, but she wouldn’t go to sleep! We finally had to leave her alone so she could rest. Throughout the next month, I learned how to change a trach, clean her feeding tube site and feed her through a tube. Tough, Tough, Tough.
Like I said earlier, if we had it to do over again, we would have transferred Brooke immediately. St. Louis Children’s Hospital is amazing. Even walking through the front door, we knew we would like it. Don't get me wrong, St. John's was good, too. But, Brooke was in a room with 7 other babies, and it could get pretty chaotic. In St. Louis, Brooke had her own room, with a door, and a comfy chair. The nurse to baby ratio was one nurse to two babies. Brooke was so blessed to have such great nurses. They truly cared for her like she was their own. I can honestly say that we have formed some life long friendships with some of the nurses Brooke had while in St. Louis. We also loved the doctors we met. In Springfield, Brooke got a new doctor every two weeks. In St. Louis, the doctors stayed on rotation for one month. The compassion and understanding we received from both the nurses and doctors will never be forgotten.
Fast forward to July… One Friday morning, Brooke’s doctor at the time came to her room during rounds and asked if I was going to be around for a while. Yes, I said, but I would be leaving to go home for the weekend. He explained that they had some results from the muscle biopsy, but he would come back later to talk to me. WHAT?!? Are you kidding me? You have results and you are going to make me wait to hear them? Talk about nerve racking! He did come back and began to tell me that from the biopsy they could tell that Brooke’s mitochondria were slightly larger than they were supposed to be, but that was all he could tell me. This was the first time a test had NOT come back normal. I had read a little about mitochondrial diseases, and the most important thing I had learned was that they are inherited from the mother. I had done this to my baby. Me! Only me. I had given my child something bad, and she was suffering because of me. Obviously I had not knowingly given my daughter something, but at the same time it was extremely difficult for me not to feel guilty. And what about Hadley, what about future pregnancies? Were they going to be sick, too?
The next week we met with a team of doctor’s who explained Brooke’s diagnosis a little more. She had an unknown mitochondrial disease, and there really aren’t any medicines that can help. They gave us a list of vitamins we would try and explained her prognosis. “IF” she makes it through her first year, it will be very rough. You will be in and out of the hospital. She probably won’t walk, and we hope she is able to eventually breathe on her own. They told us it was very rare, but in some cases the vitamins do work and children go on to lead somewhat normal lives, but again it was very rare. Those were just a few of the things they told Brian and me on this unforgettable Friday afternoon.
During the next couple months, we prepared Brooke and ourselves for going home. We had to figure out the best ventilator settings for her, figure out what supplies she would need on a daily basis, select our home health care company and nursing agency. All things I never imagined doing. All the while, Brooke seemed to be getting stronger. She was reaching her hands above her head, holding her head up, and smiling, to name a few. You could tell the doctors were pleased with her progress.
I don’t think anyone is actually prepared for taking a ventilator dependent child home. I was petrified. Brian was petrified. What would this mean for our lives? What if we are unable to take care of her? After many training sessions, we had the date! Monday, September 22nd, almost Brooke’s six month birthday. On the day Brooke was born as I was walking to see her in the NICU I saw a little girl with a sign that said “Happy Six Month Birthday!” by her bed. I can’t imagine being in the hospital for six months, I remember thinking. Well, we knew what it was like, but we were heading home! Brian and I had to take care of Brooke by ourselves for a night before they would discharge her. We actually asked to have her for two nights to make sure we were extra comfortable with her alone. Our parents came down for the weekend to help clean out the room at “Ron’s House.”
Needless, to say Monday morning was filled with many emotions, anxiety being one of them. I WANTED TO GO HOME! I wanted to get my family back together. I wanted to try to have some normalcy. We left St. Louis around 10:30 a.m. (the earliest they had ever discharged a vented baby before) and headed to Rochester. Brian was driving so fast, my mom couldn’t keep up. We were checking her machines constantly to make sure everything was working correctly. Our respiratory therapist wasn’t far behind, so we knew we didn’t have to panic too much. Brooke seemed to be enjoying the fresh air and sunshine. Remember, she had never been outside before. When we arrived in Rochester, we were greeted with a police escort and the entire student body from Rochester High School standing alongside Route 29. Students and faculty were waving, clapping and holding signs – welcoming our little girl home. The community of Rochester had been wonderful to our family during these past six months. We feel honored to call Rochester home, and I’m proud to raise my children here.
Life slowly became “normal.” We got used to our routine. Although we really didn’t go a lot during the first few months, we had fun. We brought the fun to Brooke. And, by November/December we were feeling much more comfortable taking Brooke out. We went to our parents on a weekly basis, went out to dinner a few times and otherwise had a normal winter. By Spring, with only one stay in the hospital back in October, we were ready to get out of our house! We spent much of our time sitting outside in the front yard, walking around the block, and going to the park. Slowly, Brooke was becoming more stable. She didn’t require oxygen, her vent settings were being lowered and she was starting to do things they said she wouldn’t. It was becoming easier to go places. From our discharge date in September to the present, we have made about six trips down to St. Louis for check-ups. Perhaps the most exciting was the appointment in December of 2009. We learned that we would be able to start weaning Brookie from her vent. We started slow and let Brooke be our guide. I really didn’t think she would go as quickly as she did. Currently, she is off the vent during her waking hours, and the next step will be to look at weaning her from her vent during sleeping hours.
During the last two years, I have learned many things. If someone asked me to share the most important thing I’ve learned, my easy answer would be the importance of family. Our family is definitely stronger because of Brooke. We’ve laughed together, cried together and learned together. I was once told by a father in the NICU that he would cut off his left leg to have the family support that Brian and I have. Our parents gave up a lot while Brooke was in the hospital. They spent their weekends with Brooke so I could be with Brian and Hadley. They supported us in ways I can’t begin to put into words. They gave selflessly, sacrificed greatly, and I consider my daughters very lucky to have such wonderful grandparents in their lives. Clark and Luanne Blade (Nana and Papa) and Bill and Patti Tweryon (Grandma and Grandpa), THANK YOU! THANK YOU! THANK YOU!
As I’ve said before, the events of the last two years have forced us to live our lives differently. I quit my job as a teacher to stay home with our children. While I could have easily remained teaching, Brian and I made the decision that I was the best person to care for Brooke. We knew we were making the right decision for our family. Of course, we knew that sacrifices would have to be made. No, we don’t eat out much and we don’t go shopping every weekend, and yes, there were some weeks that the only time we left our house was to go to Wal-Mart, but that doesn’t mean we love our children any less. Although we don’t have the money we used to, we are doing alright. Our girls do not care what kind of car we drive, how big our house is or how much we spend on them at holidays. We’ve learned that life is not about material things. Life is not about how much you have. We have a sign by our front door that says, “It’s not what you have in life, but who you have that counts.” Brian and I often joke that our house is getting smaller and smaller, but it’s only because our love just gets bigger and bigger. Who knows, maybe they won’t even remember this little house on Oak Street.
Brooke will be two on Wednesday, and I want to say that I knew she would get here, but there were also times when I wasn’t so sure. Throughout Brooke’s hospital stay, Brian was my rock. He always believed in Brooke. He always said she would be fine. He said he saw something in her eyes that told him she was going to be ok. I would often get angry because he didn’t have to see her struggle day in and day out. However, he continued to believe in her. Two years later, we all believe in her. Currently, the doctors have no explanation, other than "something's working". They do not recommend further testing right now. They want to watch Brooke and take her lead. For the girl that wasn’t supposed to walk, she sure is hard to keep up with!
I can’t begin to understand why God gave us Brooke. But, I can honestly say, I’m glad He did. Where would she be if she had been given to another family? There’s that whole “everything happens for a reason” thing again. While I don’t have an answer, I do think about all the other children who are born to families that don’t care, families that let children like Brooke lay around, families that don’t challenge them. As for our family, we made a decision that this little girl would have a normal life, and we are all doing everything in our power to make sure that happens. We have watched Brooke thrive. We have watched Brooke succeed. We have watched Brooke’s strength improve tremendously. I consider Brooke one lucky girl, and I consider us one lucky family.
She is now and always will be my miracle. I have no idea what God has in store for Brooke’s life, (I certainly didn't think she would be a big sister by the time she was two!!!) but I know that we are going to help give her the best life we can. Thanks for listening. Say a special prayer for the special people in your lives. Have a great week. I know we will!
Here are a couple videos of Brooke talking. I wish I had more, but sometimes she isn't in the mood to talk and tells me "no" when I ask her to say her words. About the second one... I thought I turned the camera off when I put it on the floor. Sorry :)
We are going to close the blog this week with pictures of our Brooke -- one picture for each month of her life. Happy Birthday, Brooke! We love you!
March 2008
Sitting in the covered wagon outside Cracker Barrel
Brooke is thinking about where Hadley might be hiding. That's her thinking face.
There's Hadley!
Brooke "salting" her soup
Some of the other teachers that also teach this unit came with their families. Here are Hadley, Brooke, Jake and Olivia trying to win something from the crane game. They never did win anything, but had fun putting their cozy dogs in the door and pulling them out like they had won. See Brooke below... pulling out her prize :)
