I am an energetic, positive and very happy mom of two perfect boys. My boyfriend Greg (I just call him husband) and I have known each other for over half of our lives. As a family we love to swim, bake, learn, play outside and use our imagination.
Matthew is 4 years old and has the biggest heart along with a smile that could light up a room. The patience and love he has for everyone, especially his little brother is out of this world. He loves anything that challenges him and always says the funniest things. Mason is 13 months old and was born with many health problems. Some of his diagnoses include Congenital Heart Defect(CHD), congestive heart failure, microcephaly, Optic Nerve Hypoplasia Bilateral, Auditory Neuropathy, genetic disorder, developmental delay, aspiration pneumonia, olfactory tract hypoplasia, epilepsy and the list still continues to grow. He has underwent one open heart surgery, Gtube placement surgery, Laser eye treatment on both eyes, and numerous hospitalizations that included MRIs, CT Scans, EEGs, swallow study, ENT workups and so much more. Mason is the true meaning of strength, he fights through anything thrown his way with the biggest smile on his face. I couldn’t be anymore proud of both my boys.
My biggest strength as a mom I think is my patience, positivity and being intuitive. I rely on these three things every single day. I do not get any me time away from the kids quite yet. Matthew loves to go to grandmas house to play and Mason is a little too complex to leave. We are currently waiting on a suction machine and pulse oximeter machine and once those come in I will feel a lot more comfortable with letting Mason stay with someone else….so I think. When that time comes I will most likely spend that time working on “Mason’s Gift” or catch up on cleaning, both of which will include blasting music.
Can you give us some background behind your pregnancy and right after your son was born?
My pregnancy with Mason was really tough. From the day I found out I was pregnant and all throughout the pregnancy I had pregnancy induced hypertension which is high blood pressure. I was put on blood pressure medication but that did not control it. I was sick multiple times a day EVERY DAY, I just could not catch a break. I was admitted to the hospital numerous times for dehydration from being so sick. Halfway into the pregnancy I developed gallstones that were so painful. The last two weeks of my pregnancy I was so exhausted and was having trouble with my blood pressure so the Dr. was willing to schedule me to be induced, well on the day of my induction I went into labor on my own. We were so excited, this time around I had decided to try breastfeeding so I was looking forward to the initial skin to skin and really just meeting my new baby boy. My labor was incredibly fast, so fast that there wasn’t any time for an epidural, my goodness I still do not know how I did that. All I can really quite remember once Mason was born was that he wasn’t crying and the glimpse I was able to catch of him he was very blue. I remember our room instantly flooded with Dr’s and nurses working on Mason in the corner and just feeling so helpless. After working on Mason for a while he was rolled out of the room, I still had not heard a word about what was wrong with him. After they were done with me, Greg went to go see if he could find out anything about our Mason. All he could tell me was there was something wrong with his right hand and they had to intubate him because he was not breathing to his full capacity. After hours, the Neonatologist and his nurse came in and told us that they were very concerned about Mason. He was missing his right middle finger and he had many “dysmorphic features” that were most likely related to a genetic condition. When we were finally able to see him I just broke down. I just could not understand what was happening and seeing your baby hooked up to all these machines is just unreal.
They wanted to keep him in the NICU until they better understood Mason and so they could run all of the necessary tests. One of the hardest things ever was having to leave the hospital on discharge day without my baby and having to explain to his big brother why Mason was not coming home just yet.
Could anything have prepared you for the cardiology diagnoses(es)?
Oh boy, I still remember the day of his cardiology diagnoses so vividly. On his second day of life we were transferring hospitals to a bigger NICU unit and the receiving nurse heard a heart murmur. An echocardiogram was done that same day and we were told we would get the results the next day. We were at the NICU pretty much all day the next day waiting for results but didn’t hear anything. On our way home I got a call from the neonatologist saying he got the results from his echo, he went on to say that Mason has been diagnosed with congestive heart failure and has very large holes in his heart. He also went on to say that his MRI came back and showed a bleed in his brain along with three cysts. BAM BAM BAM! I was trying to keep it as together as best I could in the car because I didn’t want to scare Matthew but I LOST IT! In that moment, I seriously thought my son was dying! All I really heard in that phone call was heart failure. I have never cried or been so afraid in my life. Seriously, that was probably the worst day I have ever had. Not one thing anyone could say could comfort me, I just wanted to be with Mason. The next day in the NICU I met our NICU NP Sarah, she was a GODSEND. She sat me down and really explained to me what congestive heart failure is and what they can do for him. She was my saving grace because my mind was instantly at peace after speaking with her. Everyday while Mason was in the NICU she came by where Mase was to make sure that I understood every single thing that was happening. I honestly do not know what could have prepared us for his cardiology diagnoses, I always like to think it would have prepared me better for delivery day but really, I don’t think anyone could have prepared me for this.
What were you thankful for when your son was first hospitalized?
My sons first extended hospitalization was when he had his open heart surgery. We had a date already planned for his surgery but his little heart could not wait until then. He had been admitted to our local hospital a couple of times before this but it was very close to home so I was able to run home and grab what I needed. This hospital stay was unexpected so I am so very thankful to my family for really helping with EVERYTHING and making it possible for me to stay by Masons side throughout the entirety of his stay. They would bring me food and clean clothes almost daily. I was surrounded by nothing but positivity and love and I really couldn’t think of anything I needed more than just that. I am also very thankful for our friends and family that put Mason on every single prayer list they knew, I have people from South Africa and Canada still to this day messaging me to check on Mason. I am most thankful for all of the Drs, nurses, and specialist that helped in mending my sons broken heart.
What is Mason’s Gift?
Mason’s Gift is a charitable organization(soon to be non-profit, as soon as we receive our 501c3 status) that supplies heart families with the necessities they need in order to stay overnight with their loved ones and not have to leave their side. Mason’s Gift: spreads awareness, honors strength and keeps our loved ones close.
How did you get your non-profit started with a baby? Who do you have helping you?
Well our first extended hospitalization besides his NICU days was when he was 8 weeks old, admitted for heart failure. We were told we needed to get him to CHLA, ASAP without making any stops, so we went with just the clothes on our back. The first three days were so busy with different tests being ran, feeding difficulties, blood transfusions, different specialists and Drs coming in and out, the possibility of surgery and me just trying to process and understand everything that was happening. We were three days in and I still had not showered or did anything to help myself because I was not prepared to even come to the hospital. There was so much going on and I couldn’t even think about leaving Mason’s side to run to the store(which I had no idea where anything was or where to even go) or even take a chance on missing a Dr. come in or test results to come back. I was lucky that I was pumping and received the one free meal daily or I probably would not have eaten until my family was able to come. We ended up staying a total of 15 days which included his open heart surgery. It was constantly on my mind after being discharged about how unprepared we were and how much money I had to spend on necessities in order to stay with my son during the scariest time of our lives. Looking back on everything the majority of my stress and anxiety was spent trying to figure out how I am going to be able to stay another day without having to leave my son. I never wanted another family to feel unprepared and waste any of their time worrying about how they are going to be able stay with their child. It is already expensive enough staying away from home so we just want to take away as much stress as we can so families can just focus on their loved ones.
It definitely is a challenge starting a foundation with a baby and a 4 year old. I try to save all of my work for either early in the morning when nobody is awake, late at night when everyone is sleeping or in the middle of the night when it is just Mason and I awake. I am still working with the hospital to figure out how to make our “gifts” a part of their routine so for now I try to drive to CHLA and deliver our “gifts” whenever I can. I try to reach out and stay active on the different support groups so that I know when they are being admitted and if we can be of any help. I am so thankful to all of my family that I have helping me. Greg always making sure I am staying motivated and coming up with ways to expand on more than “gifts” for our families. My brother P.J. is a graphic designer and engineer so he is helping me develop my website and come up with almost everything design wise for my foundation. He is a genius! My whole family already making donations and coming up with great ideas to do for our village of heart families. This is not just my foundation, this is our heart families foundation. I would love to involve and hear anyone and everyone’s ideas. I am also part of one of the most amazing support groups and the moms on there have been beyond helpful and supportive.
What events do you do to raise funds/awareness?
Currently Mason’s Gift is spreading awareness through our different social media sites, we make bags full of heart goodies and CHD facts and take them around to different businesses, and by word of mouth. We are waiting for our 501c3 status to be able to throw fundraisers and have special events so any gift will be tax deductible. We are very lucky and thankful for the generous people that still want to donate even though it is not yet tax deductible. We are working very hard towards that and will not stop. We have so many great things planned for Mason’s Gift and all of our heart families.
How can we support Mason’s Gift?
Please join our social medias, spread and share our awareness posts and just keep any and all heart families in your prayers.
masonsgift.org will be up within the next couple of weeks and there will be many ideas on how to help.
Kaitlin~ your family is beautiful and strong and open and raw and truly showcase the pure love that family can have. We are thrilled to be connected with you and Mason’s Gift, and are always sending love your way!