Quinn's Story

I had a very normal pregnancy. I took prenatal, birthing and parenting classes. I wanted Quinn to be as healthy as she could possibly be and so I went to the doctor for normal check ups, took all my prenatal vitamins, got my teeth fixed and made sure I was prepared as I could be for being a brand new mommy. I don't think I could have been more prepared for Quinn other than the fact that I was pretty certain she was going to be the daughter of a young single mom.

Everything went so smoothly (except morning sickness that lasted well into the second trimester). I was induced to give birth when I was 39 weeks pregnant (only because my doctor was due to have her baby too and I wanted her to deliver Quinn). My whole family was present! Quinn was the first grandchild born to my parents and they were so thrilled. My family is so supportive. I love them! Quinn came out at 9:48pm. She weighed a healthy 7lb 0oz. and was 18 1/4 inches long. Though she didn't cry very well, she was breathing fine. When I first saw her, I told the nurses that something was wrong and that something was on her! And they were telling me that she was just fine. Turns out she had two extra pinkis! There was no bone, just a little bit of skin letting the flesh hang off so they had to be removed. After 45 minutes of observation, Quinn was wrapped up and handed to me. It was so precious. Everyone was right! I loved her unconditionally immediately. I would give up my life for this child, I would fight for her and I would protect her.

Unfortunately, I had a terrible experience with the epidural and got a spinal headache! It was horrendous! I couldn't sit up, It hurt SO BAD! I thought there had to be something wrong. I endured almost 3 weeks of this! I even went back to the hospital to get a back patch that was suppose to help, but it didn't work. I drank so much soda because the doc said that if i did that, it would go away faster. It hurt so bad that I had to crawl to the bathroom to go pee, i was literally bed-ridden for the first few weeks of Quinn's life and i HATED IT!!! Here I am, thinking that I'm going to be the best mommy and I can't even take care of my newborn daughter because I'm stuck in bed with a spinal headache. After this, i vowed to NEVER let anyone give me an epidural. I felt like that part of my life was stolen from me.

Through this spinal headache, thank God for my family, I was trying so hard to breastfeed Quinn. But she wasn't latching on right. I knew that my breastmilk was the best thing for her and I felt that if i couldn't give this to her, i was failing her! Quinn just had a really hard time latching on appropriately, she was cutting my nipples and it started to become very very painful to feed her. I literally cried from the pain everytime I tried to breast feed her. I was willing to endure it as long as Quinn was able to feed, but I had to start pumping after about a week an a half. So long as she was getting my booby milk through the bottle, that would have to do. I felt defeated. Breastfeeding was suppose to be a bonding time with mother and child. I read so much about how peaceful it is, but it most definitely wasn't for me! My milk started to dry up pretty quickly and by the time Quinn was 2.5 weeks old, She was almost completely formula fed. During these problems with breastfeeding and through the fog of my spinal headache, I started to feel like something wasn't right with Quinn. She was projectile vomiting and she seemed to want nothing but to eat, even when she did eat, she just kinda sucked on the bottle a little bit. She was restless. She literally COULD NOT cry. No sound would come out of her mouth. But she would go through the facial expressions, but she would turn so many shades of purple and grey when she did this. She slept all night. She never woke up to feed. I could sleep for 8 hours and though I felt fortunate that she gave me a little time to rest, I felt like this wasn't normal for a very new baby to not wake up to feed. I also felt like she stopped breathing during her sleep... i just had a feeling that she wasn't ok in her sleep.  I took her to the pediatrician to get her weighed and stuff and though she lost weight, they said it was ok. I told them about how she couldnt' cry and they said that it's ok. i told them about how her face turned colors when she did and they said that it as fine and that she was a very normal baby and that i was just a new mom and not to worry. And he told me that all new babies have some sort of apnea.

And so I took her home. Slowly my spinal headache started to go away and I was enjoying more time with Quinn. She was a puker. She soaked rags hourly. But she seemed happy and that was enough for me. But, Quinn wasn't well...

When Quinn was 3.5 weeks old, I was laying on the couch with her watching Bambi 2 with my mom and sister. Quinn was sleeping on my belly when all of a sudden, Quinn jerked awake, of course she didn't cry, but she went through the facial expressions of trying to cry. She was very uncomfortable. I went to change her diaper and she was pooping so i figured that's why she was uncomfortable. But something was wrong. She wasn't stopping. Her face was turning blue and she seemed to be gasping for air. I yelled for my mom and my two sisters and they came running into the room. I removed all her clothes and laid her on the bed. And she really was gasping for air. I told my sister to call 911 and I turned her into the recovery position. Thank GOD I took infant cpr classes!!! I knew that unless she fully stopped breathing, there was nothing I could do for her. So the ambulance came and suddenly, Quinn started to pink back up. Though she was tired, she was ok. The ambulance gave her some oxygen and we took her to the ER. At the ER, they did a chest xray and told me that she had pneumonia! So we were transported down the hill to another hospital's pediatric ward. She spent days there on IV fluids and antibiotics. I thought she was too healthy to be there. I just wanted take her home, but the dietician said that she was underweight. And then after a couple days, a doctor came in and told me that Quinn had a heart murmur. They did an echo that day and the cardiologist told me that she had two small heart defects called ASD's. he said that they would be ok and to just follow up with him in 6 months. And then the nurse noticed that Quinn was projectile vomitting. she asked me if she did this all the time and said that it was a really good amount of formula. I told her that she puked all the time. She had a UGI and they said she just had reflux. the doc said to keep her at an angle when putting her to sleep and keep her upward 30 minutes after feeding. We were heading down the right path to discharge. After about a week, the admitting pediatrician told me that her pneumonia was clearing up and that they would take another chest xray the next day and if it was clear, we could go home. So, I started gearing up for discharge. But that day didn't come.

The nurse was coming in to change her IV because it had blown and Quinn was getting agitated. She couldn't cry, obviously, but she was going through the facial expressions and then Quinn's face started turning blue and she was gasping for air again. The nurse started freaking out! She grabbed the oxygen mask, placed it over her face and ran out of the room to grab a doctor. The doctor came and listened to her and said that she was fine and breahting normally and told the nurse to grab him again if she started doing it again. So, the nurse started to change her IV again and Quinn started to get agitated and turned purple, blue, gray and the nurse was like "Oh my God!" she told me to hold the mask over her face and she ran out there real quick. Then, a doctor came in and she was still gasping for air and turning those colors, next thing i knew, the privacy curtain was pulled back and Quinn had a parade of nurses and doctors clustered around her crib. This is when I started freaking out. And then, a nurse sat me down and said that they were taking her to another room to have a better look at her. I didn't know what to do! I wanted to be next to her, but I seriously was shocked! I heared the nurse yell out in the hallway "doctor, come quick i dont' like  the color of this baby!" and I KNEW she was talking about MY baby. I peeked my head out of the room and there were so many parents standing in their doorways holding their children. probably wondering what all the commotion was about. I could tell what they were thinking, because it was the same thing i was thinking when I felt like Quinn was the the healthiest kid on the pediatric ward. "I'm so glad that's not my baby". Quinn turned from a healthy baby about to be discharged to the sickest on the pediatric floor.

It felt like forever and had to be at least an hour before the doctor came in to talk to me. He seemed upset. He told me that something was wrong with Quinn, but he didnt' know what. He said that her heart rate was very very high and that she was turning colors when she cried. He felt that she needed further care that this hospital couldn't provide for her, so he said that she was going to be transported to the children's hospital's Neonatal Intensive Care Unit. He said her heart rate was climbing as high as 260 beats per minute. This is when the fog sifted in and everything sounded like echoes. I was so scared for Quinn and I couldn't believe how fast this was happening. We waited forever for the transport team to arrive. Quinn and I were finally reunited and she was attached to a heart machine and she had oxygen. That alarm went off for high heart rate every time she moved a muscle.

It was heartbreaking to see the team and all their gear... hook her up to all those monitors and place her in the litttle plastic incubator. Though the team was very reassuring and sweet, I was pissed at them that they wouldn't let me ride in the ambulance with her! So we started off to the hospital, an hour away.

When we got there, we waiting for a long time and the neonatologist finally came out to tell me that she was stable and that they were not as concerned with her heart as they were about her breathing episodes. she called them ALTE. She said that Quinn was going to undergo a lot of tests and said that the NICU journey can be up and down but she seemed certain that we would figure out what is going on. Thankfully, we only spent a week there. Quinn was eating and gaining weight. she had some tests and they said that she had sinus tachycardia, reflux, severe sleep apnea, and the heart defects. They gave her some medication to help with stomach motility and she was dishcarged on an apnea monitor to alarm me if she stopped breathing. They guarunteed me that Quinn was going to be fine and said that she would outgrow all her problems by the time she was a year old. They couldn't have been more wrong.

By the time Quinn had her first birthday, she was diagnosed with failure to thrive, she had another bout of pneumonia, she wasn't eating properly and was put into feeding thereapy, she was diagnosed with hypotonia and a developmental delay and she was still puking like crazy. she cried all the time! I couldn't find the right formula/med combo to make her feel better. Under guidance of the pedi, there was nothing else we could do for her. She had a high lactic acid level.

She was admitted back into the hospital when she was 13 months old for PH probe study and a failure to thive work up. she weighed only 18 pounds. She had constant chronic diarrhea. It was deemed that she wasn't eating enough calories, but she was slowly gaining weight while she was in there. she was being supplemented with high calorie formula. and her reflux was VERY SEVERE. The doc sent us home on a new medication regimen and new formula. But Quinn kept getting sick. she was having high fevers, dairrhea and kept puking. we spent a lot of time in the ER trying to control the fevers and the chronic diarrhea, dehydration and malnutrition. It was decided to put Quinn on a g-tube when she was 15-16 months old. That helped, a little, but she was still in and out of the hospital for the same things. And so when Quinn was 22 months old. she had a surgery to correct the reflux. She spent 4 days in the hospital getting her feeding right. The recovery was long, but after a little bit, it looked like this was THE BEST thing for her. Seh was so much happier!

She was low tone and still wasn't talking at two years old and so she was put into physical, occupational and speech therapy. she saw a neurologist  and it was found that Quinn suffered from seizures and she was ataxic and globally delayed. She spent a little bit more time in the hospital after she turned 2 years old, but the hospitalizations were mild and she seemed to be doing ok. She was put on oxygen while sleeping a little before she turned 3. And after that, she thrived in therapy and by the time she was three, she was discharged from all therapies.

After Quinn turned three, she seemed to do VERY WELL! She was on supplemental g-tube feedings, she was still taking her 9 medications, but she was very stable. she didn't spend any time in the ER. I really thought that maybe the docs were right and that she was outgrowing things. Though things about her looked off. she was still really clumsy and sometimes we just had to wonder what was going on with her, she was doing great! She was put in dance classes and in August 2009, Quinn started preschool. Things were going well. she was doing great at preschool the teachers were aware of her issues and are just awesome!!! They gave her oxygen when needed in school, but she wasn't really needing it! they called me if anything was out of the ordinary. We started to wean Quinn of her g-tube in December 2009 and that's when things just started to go downhill again...

Quinn's oxygen saturations started to get worse and she was requiring more oxygen. She wasn't really comfortable. Her stomach started to look distended. She started to look more tired, but she was doing ok. I figured that maybe she just had to get used to not having the supplemental nutrition at night. She seemed ok. then in January 2010, Quinn started to suffer from grand-mal seizures. She had one at school. then she had one at home the next day and then teh day after that, she had another seizure, but this was was really bad. she wasn't breathing very well and she was almost completely unconsious for about 10 minutes. We had to call 911. Quinn was taken to the ER... seems like repeat... she was diagnosed with pneumonia again. she then had 3 more seizures in the hospital and she was started on IV atavan. She was also diagnosed with an Ileus, and a bladder infection. This illness took a huge toll on her body. She was unable to sit up, unable to feed herself, unable to walk, she was like a floppy doll. I felt like maybe we might finally find out what's wrong with Quinn. She spent 3 days in the hospital with a critical care nurse by her side and she started to get better. though she couldn't walk, she was recovering. I talked to the neurologist on duty and I told her that I felt liek Quinn had Mitochondrial Myopathy, i had been doing research and felt that this is what she had even as young as 2 years old. The doctor practically laughed and told me that quinn was too healthy to have that. She was a rude doctor, in my opinion.

So, we took Quinn home again. Though Quinn did finally start walking again, she developed a new baseline and she continued to spiral downhill. Quinn's stomach was so distended after she ate. She was still having sieuzresand she was having a really difficult time with her clumsiness. Teachers at school were noticing a significant change. She just didn't look well. We took Quinn back to the doctor and it was finally confirmed, Quinn is not getting better. She is only getting worse. Since January 2010, we have had follow ups with most of her physicians and each of them has seen the definite change in how she was last year. Quinn is much more tired, low tone and sicker looking.

Quinn's stomach is not working very well. She no longer can digest table food. And she has to be fed through a 24-hour continuous feeding through her g-tube. She continues to have seizures. Her seizure medications have been increased and a new one added. She is now on oxygen 24/7. And we are working on getting her back into therapies. Things with her health  continue to decline. We still have no solid diagnosis. All her doctors are now talking about how she definitely seems like she has mitochondrial myopathy and she now has a clinical diagnosis of this disease, but nothing is confirmed. They are all talking about doing a muscle and or liver biopsy to try and accurately diagnose her. All these years of me telling these doctors that this is what i think she has, and now they are finally listening. It took Quinn getting worse.