Morgan's Journey

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Precious Life

The nurses told me I would one day forget how small she was, they said I would never be able to imagine again that she was that little. But I have not forgotten. I remember how tiny and delicate she was the day she was born. At 2 pounds 5 ounces she was actually big for her gestational age. The palm of her hand was the size of the tip of my pinky. Her wrist was smaller than the width of my finger. Her toes, I can't even describe how tiny they were. How could a toe even exist that small? Her ears were flapped over like an elephant because the cartilage was not strong enough to hold them open. She had beautiful little lips. Her eyes were so big and bulging like they did not fit into her head yet. I could cup her whole body in my one hand. She was the exact size of a beanie baby. Each human's heart is roughly the size of their first, that meant her heart was about the size of a cheerio. But it was beating, and she was strong.

She flailed those little arms around like she was trying to win a wrestling match. The nurses would try to fold her legs up for good posture but she would stretch them out as long as she could as if to show the world how big she really was. She would grip my finger tightly telling me that she would fight. She was amazing, a true miracle from God. It was so humbling to watch her breath and truly know that every breath she was able to take was a gift. The nurses told me I would one day forget how small she was, but I will never forget. I will always remember the living miracle that is my daughter. I will always remember the day God showed me how precious life is. 

Flamingo Fundraiser

Flamingo Flocking Fundraiser!

My family is currently raising money for the March of Dimes walk. March of Dimes is an organization that helps prevent preterm births by research and education. They also provide help to families who have premature babies.

To raise money we are doing Flamingo Flocking! Flocks of Flamingos are being placed at various people's house over the next month and we are asking for a donation to have them removed! It should be very fun!

Here are the stats so far:

Flock One- 

GINGER's House---a very short fly with a landing at AMBER's house---the flamingos took a night's rest and went on their way to KATIE's house

Flock Two-

CATHY's House---this flamingo flock travels far and have landed at ROBIN's house

Total Fund-raised so far: $125 (goal $300)

Fun Flamingo Fast Fact- Adult flamingos are 4.6 feet tall with a wingspan of 5 feet

Check back daily for up to date Flamingo Tracking!!

My Breastfeeding Journey

When I was pregnant I was on the fence about breastfeeding. I knew it was important and the best thing for my baby. But, I also felt awkward and unsure about it. I planned on taking a breastfeeding class to learn about it and make my decision from there. Well, it turned out there wasn't time to take a class and the decision to breastfeed was made the instant I found out I was having a preemie. I wanted my daughter to have the best chance of survival and that meant a diet of liquid gold.

Since my baby was born so early and was unable to eat, I had to pump the breastmilk for her. I started pumping about 3 hours after she was born. The nurse handed me the pump and told me to start as soon as possible for my best chance at a large milk production. I had no clue how to use the pump! It was so big and intimidating. I was so embarrassed to use it and I felt like a massive cow. The first time I pumped I got just a little colostrum. The nurse showed me how to suck it up in a little syringe so that I wouldn't waste any. She instructed me that "every drop is important."

As my baby lay in her incubator hooked up to IVs and monitors pumping became my main concern. I couldn't take care of my daughter and I had never felt so helpless. Pumping and providing nutrition for her was the only that I could do to help her and I was going to do it full force. I pumped every two hours, even setting alarms at night so I wouldn't miss a pump. Pumping kept me grounded. Because I was feeding my baby, I had to feed myself. Pumping forced me to take care of myself during a time that I was falling apart.

My daughter first started eating when she was about a week old. She at through a tube in her nose that went into her belly. The tube connected to a little syringe that was filled with my breastmilk. She used to get 1 cc of breastmilk every 2 hours. The breastmilk coated her stomach and digestive tract with immunity and prepared her body to learn how to eat.

A few times a day I was allowed to hold my baby. I would hold her skin to skin and as I did this she began to wiggle her head down towards my breast, looking for food. Over a few weeks time she got strong enough to lick and would lick my skin during kangaroo care.

As she got stronger she got ready to try to eat. She had a lot of trouble latching on and after many attempts the lactation consultant asked me to try a nipple shield. The first time I used it was the first time she actually breastfed. It was amazing. She latched on and became so relaxed in my arms as she filled her belly. It was a moment I will never forget.

Because of her prematurity, my daughter was diagnosed with chronic lung disease. She was on high flow oxygen in the NICU and came home on low flow oxygen. This means she had to learn to breastfeed with a nasal cannula in her nose. This was described to me by one of the nurses as trying to breath through your nose, drink through a straw and swallow all at the same time.

As she got better at breastfeeding, she was able to eat on demand and I was summoned to the NICU at all hours to feed her. Some nights I slept on a little cot by her crib so I could feed her at night. The times I wasn't there the staff would bottle feed her. To my surprise I was so upset about this! My son was bottle fed so I have no problem with bottle feeding, but after all the work I had done pumping and teaching my daughter to breastfed now she was going to get a bottle?

Two weeks before her actual due date, my daughter came home from the hospital.She was discharged only breastfeeding, something that only happens with 30% of premature babies. I was so proud of her and all the work she did!

Breastfeeding became our way of making up for lost time. This was my time with my baby, a time that no one else could provide but me. It gave us a chance to bond in ways we couldn't in a hospital setting.

It was so exciting at each doctor appointment to see that she was gaining weight and thriving on the milk that I provided! She gained weight at each appointment without a problem until recently. This past appointment it was noted that she only gained 2 ounces in a month's time. She also started having trouble swallowing and choking while she is eating.

The doctor recommend that I give her thickened liquids to help her swallow and to add calories so she would gain weight. This was hard to hear. It meant pumping and then bottle feeding- double the work. I was unsure if I should even bother. My goal was to breastfeed until she is 12 months corrected (15 months old). But is it worth doing it if I have to only pump?

Looking back at all we have been through and the major accomplishment that it is for her to even be able to breastfeed I decided not to give up. I am currently pumping every two hours and then feeding her on the in between hour. I am lucky I have time to write this post as most of my time is spent with my old friend- Mr. Pumpy!

A swallow study will be scheduled in the near future to see why my baby is choking so much. Depending on the results I will make a decision to how long I will breastfeed for. For now, my goal has been shortened to getting her through the winter. As a preemie, she has almost no immune system and she needs the breastmilk to help her stay healthy during flu season. If we can get through the winter (10 weeks away!) I will then reevaluate and see where I want to go from there.

Overall I feel blessed that I have been able to breastfeed and to provide my baby with the best diet possible. Breastmilk has helped her grow and has given her the immunity to stay healthy and stay out of the hospital. Whatever I need to do for my baby I will do, after all that is what mommies are for.

David's House

What David's House Means to Me

When my daughter was in the hospital we stayed at an amazing place called David's House. This is a house where families can stay while their children are in CHAD. I was so relieved that we got a room at David's House. Leaving my baby every night was the hardest thing I have ever had to do. Being at David's House made it a little bit easier. It took only five minutes to get from David's House back to the hospital.

Imagine your child being in the hospital and you have no place to eat, no place to sleep and no place to shower. David's House provided all of these things. 15 rooms are available for families to stay in. There is a large kitchen where food is provided and most nights volunteers would cook a hot meal for the families.

David's House brought together the families of the children in the hospital. It became a support system so that I didn't have to go through this experience alone. I met many other mom's and dad's who had babies in the ICN and it was a gift to be able to talk and vent to them and to support each other. Many of the families I still keep close contact with.

I remember one night, a group of volunteers came in and made tacos. My son and I sat with other families and enjoyed a family style supper together. I don't remember the conversation that night, but I remember everyone talking and laughing. I was a nice break from the stress at the hospital.


What I will be most thankful for about David's House is being able to have my son stay with me. My daughter was in the hospital for 11 weeks and that whole time he was able to be with me. I didn't have to choose between which child to be with. I was able to have my family together. And, my son was able to connect and bond with his new sister. It was hard enough to leave my baby, I didn't have the strength the leave my son too.

My son's favorite part about David's House was the playground! They have a great, big playground in their front yard. Most nights we would eat supper and then sit outside so he could play and be a kid. Everyone at David's House loved him and was so nice to him. He was very spoiled there! Always being given cookies or little treats from the staff.


There was always a feeling of hope at David's House. There was a peaceful, relaxing feeling whenever you were there. David's House was not just a place to stay, it became our family while my daughter was sick and it will now always be our family. I will always be thankful for David's House.

Play this video to hear the story and love of David's House.

Radio

My son and I will be doing a radio interview this week. He was telling my grandma about it and he said, "Just think, first the radio, then the TV and then theaters!". I am glad he has high hopes for himself!

Kid Love

My son on love: There are two beautiful girls at my school and I can't choose. I don't know their names, my legs get shaky when I try to ask them

Dreams

I have been thinking about my son a lot lately. He is really pushing the limits since we started with a behavioral therapist. She says we just have to stay strong, that things will get worse before they get better. I am just tired of seeing him suffer, I want just one thing to come easy for him.

He is amazing. He is so so funny and has the greatest little spirit. Every parent worries about their child's future. I hope my son takes the right path. I hope that he can control his impulses and use his energy in positive ways instead of negative. He could make huge changes in this world if he put his mind to it. My wish for him is that he always stays true to himself. I wish that he will make all his dreams come true and never give up on himself. I hope that he will push himself to be the person I know he can become. When I look into his eyes, I see the wonder and amazement. I hope he never loses his childhood curiosity.  I love my baby!

That's My Boy!

Energetic to say the least! This boy never stops moving! His energy can be overwhelming at times, but its also amazing. One day he will use it to do great things. I love this boy with all my heart. He's a pretty cool kid and I must say very handsome! He may get himself into a lot of trouble, but he has a really big heart. He tries to do the right thing even if he doesn't always know how. Be careful, he knows how to get exactly what he want with just a turn of his head and a cute little smile!

My son's story

Tuesday, January 18, 2011

My son's story

My son is the light of my life. Looking into his eyes I see the world, I see everything good that God has created. He is smart and curious; always trying to figure out how the world works. He is energetic to say the least. Every time I look at him my heart melts. When he was born, he has some trouble eating. He would drink the bottle and then we would sit him up to burp him and he would projectile vomit the entire bottle. A reason was never figured out as to why he did this. The problem didn't stop until he was two and a half and then he seemed to outgrow the issue (thank goodness!). At five years old, he has never slept through the night. He has night terrors-screaming, kicking, punching and wanting to be held all at the same time. When he wakes up, he never remembers them happening. He seems to think he slept all night. He doesn't like people to touch him and he doesn't like a lot of noise. When we go to parties or grocery shopping, he gets upset easily because he is overwhelmed by his surroundings. He NEVER stops moving. Anything that can be climbed is climbed, and things one would never think about climbing are tackled with ease. I can't take my eyes off him for a second. He is very physical; He loves to skate board and ride his bike, always trying to learn new tricks. A day inside consits of jumping from the couch to the trampoline over and over. He gets upset very easily. Just asking him to put his shirt on can cause a battle. When he gets mad, he hits his own face, screams, stamps his feet or bangs his head on the wall. It's hard for him to play with other children because he is so impulsive. He can't control himself if he gets angry and will often push, hit or bite other children. Transitions are very hard for him. He needs to know in advance everything that is happening. He will ask me over thirty times a day "What time is it?". That is his way of knowing when he will need to move on to another activity. He also had a decreased sense of touch. Once he put his hand on the iron burning his entire palm and didn't even cry. He crashes into walls and pushes his body into things so that he can feel the input. When he was two his doctor referred him to an occupational therapist to start therapy with the diagnosis of Sensory Processing Disorder, also knows as Sensory Integration Disorder. The definition of this disorder is: "A neurological disorder characterized by disruption in the processing and organization of sensory information by the central nervous system, characterized by impaired sensitivity to sensory input, motor control problems, unusually high or low activity levels, and emotional instability." Basically, the world around him is very overwhelming. All his senses are on high alert. His shirt feels like a rough, rug against his body, people seem to always be yelling, all lights are blinding, all the colors are very bright. Its hard for him to focus his attention because everything seems so important. He is trying to complete a task, but his clothes are bothering him, the bird outside is loud, the room is hot and his muscles are twitching. In therapy, he is learning how to desensitise his body. He plays on balls, swings on swings and jumps in a ball pit. He listens to loud music while trying to play a board game. All these things help his body feel right with the world. At 18 months, he started daycare while I was in nursing school. Everyday was a battle for him. He would run around the table while it was snack or art time. He never wanted the teachers to touch him. One day he was crying and a teacher picked him up, and he became upset and head butted her giving her a bloody nose. This daycare was not set up for children with this disorder. It was very noisy, had bright lights and little outdoor time. Now, he goes to preschool at a private school that works to fit his needs. He goes only 2 hours a day so he doesn't get overwhelmed. The school has a great set up for him. He is outside 75% of the day no matter what the weather. He is able to climb, jump and explore to get the energy out of his body. Even with this set up, he is experiencing problems with his peers. He comes home crying saying he has no friends and no body will talk to him. He says the kids laugh at him and make fun of him. When talking to the teachers, they say he is the class clown and always making jokes. But, he cries and becomes angry when the kids laugh at the jokes. He was potty trained at night and because of the stress at school, he began wetting his pants. I took him to his pediatrician and he recommended he see and pediatric developmental specialist. I called to setup an appt. for him and was told it would be a 7 month wait! However, we got lucky that there was a cancellation and we were seen within a month. He was recently seen at the beginning of January. The specialist diagnosed him with severe ADHD. According to her it is "to the extent that is effects every aspect of his life." I was surprised by the diagnosis because I always thought ADHD was a learning disablitly and only affected schooling. After researching it, I found that it is a much bigger problem then that. The doctor felt strongly that my son could not control himself and is extremely unsafe. I had told her a story of this summer when he climbed onto a bridge and was right on the ledge, this was the scariest moment of my life! This doctor recommended starting him on Ritalin to control his impulses. She stated that she doesn't ususally start this medication until age 7, but feels very strongly that he will get hurt because of his saftey issues if he doesn't start the meds. So this is where we are now. In the processing of deciding what do with all this information. Do we start meds? Do we try alternative therapies? What will this mean for his future? I love my son more than the world and the heavans and the stars. I will do anything so that he will succeed in life and be happy. I will fight for him to get everything he needs. And I will never, ever give up on him. This is just the beginning of my son's story. One day, he will use this energy to change the world.

The most precious gift

52 hours of labor. The worst 52 hours of my entire life. Labor is suppose to be exciting and a wonderful moment. This labor was terrifying. I spent those 52 hours with my heartbreaking, wondering if you were going to make it out alive or not. Every second I thought, will she cry? Will she breath? When they started the pitocion I was a little excited. I was glad to get things moving and happy this scary time would be over soon. Then, when the doctor checked me and I was 1 centimeter, I burst into tears. It was really happening. There was no stopping it, you were coming to matter what.

The doctor who broke my water was hard to read. When she broke it there was a weird look on her face and she wasn't answering my questions. Moments later my room was filled with people. I heard someone say, "the heart rate has been down for 3 minutes" but no one was talking to me. I was rushed down the hallway to the operating room. There I was told if your heart rate didn't come up we would have you by c-section. I was also told that if I couldn't be numbed quickly enough I would just be put out for the procedure. I asked how long I would be out for and when I could see you, again, no answer.

I was numbed up to neck. It was so strange. I could not feel myself breathing. I kept asking "am I breathing?" but of course I was if I was talking! I was shaking so much which I was told was from the medicine. And then we waited. The doctor was staring at the monitor waiting for you heart rate to come back up. I wanted them to stop waiting and to just do the c-section, I didn't want to take any chances. But the doctor was patient and a few minutes later you were stable.

We waited longer for the contractions to start again and when they did I was told to push. This made no sense to me. I was numb from then neck down, how could I push? The doctor told me to try so I did. And you started to come. "Look down at your baby!" the doctor yelled and I tried but you were so little that I couldn't see you over my pregnant belly.

I was afraid of how you would look. Would a baby this early look normal? Then you came, and it was the most beautiful site I have ever seen. I was not allowed to hold you but the doctor held you up for me to see. Your little face was perfect and you had beautiful brown hair. You were little, but you looked so strong. I was in love the instant I saw you. Looking at you I knew you were a fighter. It was going to be a long road, but at that moment I knew you would be ok. There you were, 13 weeks premature and the most beautiful, most amazing gift this world has ever seen.