In august of 2012 I was shooked to find out I was expecting seeing how I was on birth control.. the only explanation was the antibiotics I had been on the month before. The routine ultrasound to date the pregnancy felt like it took forever, in a rush to get out of there to pick my 4 year old up from school I jumped up as soon as she was done. Before I had a chance to leave she asked me to sit back sown for a minute so that we could share the ultrasound with my other half. I assured her it was not that big of a deal seeing how I was only 6 weeks along and we all know there not much to see, but she was very persistent on getting him out of the waiting room to show him the pictures. When they returned she asked him to have a seat  as she closed the door. The room was dark quiet and cold and the tech was standing in front of the ultrasound screen, at that point I had this strange feeling overcome me as she looked at us and said" I have some news to tell you both".  She moved slightly away from the screen and before she could even say what the news was I looked at the screen and seen not ONE but TWO dots! I screamed "TWO" she said that's right. I was speechless as my heart felt like it was going to pump right out of my chest while I was trying to catch a breath. My other half  being a man had no idea what those two dots meant or what I was screaming about, so the ultrasound tech went on to explain the news that we were expecting not ONE but TWO more additions to our family. I Think at that point he had his head between his legs with the news we just herd. How could this be? and Twins! were the only words we would exchange with each other for the next few days .. Needless to say were  ecstatic once the initial shock wore off.




Family and friends flattering us with congratulations I would say we were definitely the topic of everyone's conversation for quite some time.  Having a healthy pregnancy and preparing for the twins I was anticipating the date of my Baby shower being one week away. Now im not your jolly pregnant lady at all, my feet were swollen, my back was sore  and I was carrying an extra 25 lbs at this point  I was just over half way there but felt like I was going to be pregnant forever. It was January 21 2013 at 5 am in the morning when I woke up for  my usual drink, pee and back to bed to toss and turn till I have to pee again routine something wasn't right I mean I got up chugged a glass of water went to the bathroom but when I lied back down I had an excruciating pain in my belly, I told myself it was just gas and tried to go back to sleep. Tossing and turning in the bed this "gas pain" I was feeling was starting to have some consistency to it ,  no way it couldn't be I was only 28 weeks along I thought to myself . But sure enough they were coming every 3 minutes, this must be all in my head there is
absoluty no way this is what I am thinking it is I thought to myself again as I paced my hallways to try to pass some gas. The walking wasn't making it better in fact it was making it worse with a gush down my legs I started to cry. Immediately i called the hospital to let them know what was happening at that my contraction were 1 min apart , the nurse on the phone yelled at me to hang up and call 911, great now ive gone into hyper panic mode and my 4 year old has woken up from all the commotion, pull it together is all that was running through my head  as I made farm animal noises with every contraction so I wouldn't scare her. At last the ambulance my mom showed up at the same time and i was on my way to the hospital .. from here its a bit of a blur the paramedics did no better job comforting me as the guy was on a personal call screaming hes delivering babies. As I arrive to the hospital I am brought to the operating room, there had to be at least 12 medical professionals in the room as the nurse checked me I was 7 cm dilated, they did a bedside ultrasound and I was prepared for a vaginal birth but within minutes baby A had turned breech and I was being put to sleep for an emergency  C-section. At that point all I can remember is grabbing the nurses arm with all the strength I had looking her in the eyes and telling her to make sure they were ok.

Waking out of my sleep all I herd was congratulations, I looked around the room and saw my mom sitting beside me I was overwhelmed with feelings ranging from happy , sad , scared , worried you name it but all I wanted to do was see my babies I had so many questions like how are they, how big are they, what time were they born, where are they, do they look alike. Baby A Xavier Kash was 1226 grams born at 6:47am and Baby B Mariah Grace was 1191 grams born at 6:49am I was told. not being able to get up I demanded to be brought to them. Since Xavier was having a harder time breathing he was still in the OR awaiting an ambulance to be transferred to McMaster with a team of nicu staff from McMaster already with him . Mariah appeared to be not having as much trouble as him so she was sent upstairs to the level 2 nicu until the ambulance came back for her, and then me . By 1 pm we were all transferred out to a hospital with a level 3 Neonatal intensive care unit. I figured that seeing how they were alive all they would have to do is get bigger now, Little did I know of the never ending roller-coaster ride I was in line for.  Over the next few days I slammed with information from the doctors regarding of all the health issues these babies could potentially have. But so far they seemed to be doing ok other then needing assistance with there breathing and there size.  Within a few days I was discharged as a patient from the hospital to leave my children in the hands of someone else, I took it hard and cried for days all I wanted to do was to hold them and have them home but that was not possible.

 I would spend all day every day at the hospital by there incubators asking the nurses a million questions and everything seemed to be going good, Until one day the doctor had came by and told me he would like to have a family meeting. Now I know this cant be good they told me in the beginning that family meetings are  for updates or for some kind of news about the babies. seeing how they were having all kinds of tests done to them I knew this was no update. The day of the meeting there was many doctors and nurses who took us to a quiet place to talk, we sat down as they explained that because they were so preemie they both suffered a grade 4 bilateral brain bleed from the lack of oxygen they needed in the beginning . Grade 4 is the worst grade bleed and the chance for cerebral palsy (motor dysfunction) is very likely. to what extant the injury will have effect on them that we wont know until they are older. The good news about the bad news was that being so premature their brains were still developing and could possibly make new connections for the parts that have been damaged/injured.   Once again I cried for days I blaming myself for everything as my friends and family tried to comfort me with saying things like , it will be ok, and they're fine. Those were the last things I wanted to hear because everything was not fine and I was not ready to accept the fact that they both suffered brain damage. After a good week of balling my eyes out and thinking why them ? why me? I had accepted the fact that this is beyond my control and channeled my grief to research.

Just as I was starting to accept this life god has chosen for me to live, I was once again approached by the Doctor about having another family meeting. What now, what can be worse than this I said to my other half. He saw the fear in my eyes as I was holding back tears, he took the doctor aside and had a brief chat with him in regards to what the meeting the next day was involving. He waited until we got home and I had some time to relax to tell me they wanted to talk about a condition Mariah appears to have due to the bleed. The name he told me was hydrocephalus (water on the brain) but that's all he knew. Thank goodness for whoever invented Google as I ran to the computer to gather as much information as I could before the meeting. The next morning is a total blizzard we wake up get ready and head to the hospital .. Once again were in this quiet  room, the docs go on to explain her condition originated from the blood in her brain clotting up and obstructing the pathway for the fluid in her brain to drain on its own, however there is no cure for it but there is a treatment option. The treatment offered to us was a VP shunt, but due to my personal opinion on shunts I opted for no foreign objects to be used unless last resort, I asked for an ETV instead wich is a tiny hole they drill to allow another bypass for the fluid to drain. An MRI was done before the ETV confirming it was non-communicating.  Shortly following surgery another MRI was done and the ETV was shown to have a flow, so Mariah was send to a level 2 nicu at St. Joseph's with her head circumference  still increasing at about 2 cm or more a week. After 1 week she was transferred back to McMaster hospital where she went blue in the ambulance ride back and was very symptomatic with
hydrocephalus.  Upon returning to McMaster she went for emergency surgery for a VP shunt. Within 24 hours after surgery Mariah was showing signs of an infection, and was immediately started on antibiotics to treat what they thought was general infection. Myself being concerned of possible shunt infection the Neuro surgeon assured me that it was too soon. With Mariah's clinical state progressively worsening on day 4 the neuro team had decided check her cell count. The count came back at 29,000 She then underwent an emergency shunt removal and external drain to be put in. immediately after surgery her fontanel was extremely sunken in to the point I screamed. the surg had put a valve on it so was able to fill back out by the morning, but the shunt was not draining on its own. and they had to tap it to remove fluid.. Later that day Mariah took at turn for the worse  going into cardiac arrest twice with recitations and being put on life support then started continually seizing for nearly four hours while they gave her midazolam and fenabar t try and stop them .  .  . During this time the CSF bacteria grew a culture  infectious disease named as Bacillus Cereus and antibiotics were adjusted for that . I was told by a team of doctors what this infection in her brain meant and what this bug was capable destroying, I was also told based on an ultrasound  they believed there was abscesses all over her brain and that a decision had to be made with regards to her future and outcome in life .


That same day we met with the neurologist to explain what Mariahs future looked like. Based on all the tests they told us that basically they don't think she would ever walk, talk, that she would need a feeding tube, her ability to respond, think, learn, see and hear would all be affected. As well as at this point she was on life support that they didn't think she would be able to ever live without, not to mention her need for shunt her whole life. As the mother of her I didn't want to believe what they were saying, but they were very adamant on letting us kno that her outcome from the infection is not going to be good . We left the hospital for about an hour later that evening to gather our thoughts and just as we walked back into the hospital we received a phone call from the nurse telling us to get back to her room that Mariah was in need of chect compressions again . I went flying through the NICU doors to see at least 20 med staff standing in her room, I pushed my way threw and held her Hand as they were trying to revive her. After 1.5 min and a dose of adrenaline to get her heart going she came back. I couldn't bare the thought of losing her but at this time I had so many thoughts as towards are we keeping her here for our selfish needs? What quality of life is she going to have ...all of the things the drs had told us started racing through my mind. we had a room called a care by parent room in which we were able to stay in  the hospital because of her situation. Several hours after her compressions we decided it was best we go back to the room for a bit to try and get a bit of sleep. After talking with eachother and everything what had happened we felt as if the drs were right and maybe we were being selfish by keeping her here. The next morning we had a talk with the doctors on the decision to stop all treatment on her including her life support. A decision no parent should ever have to face and definitely not something I would wish on my worst enemy, I would have rather had a gun held to my head then go through this. The staff was very supportive of the decision we were making and kept reassuring how strong we are and how we were doing the right thing .

The day was good Friday of Easter weekend and the decision was made and the priest was called to come baptize her before they pulled the life support and family and friends came to say their goodbyes. This precious little girl had already touched so many lives in the little time she was here. An angel they called her, It made me sick to think about my sweet baby being an angel she was mine and I was not ready to give her up but I was doing what I thought was right. Later that evening the nurse came in and asked if we were ready?, Ready do I look like I'm ready I said who would be ready to let there child go. She then grabbed a few other nurses, as I held her in my arms they began to take the tape off of her face and extahbated the tube from her. Moments after the tube was out Mariah started seizing pretty bad they gave her something to stop it and as well something to sedate her to ease any discomfort she was in . we had a room full of people crying and praying for her but nobody was ready to say goodbye especially not me, the fact that she started seizing showed us that the Dr's had to be right. It was now dark outside and about an hour and a half later that Mariah was still breathing I asked the Dr's what was going on, I thought when you do this it happens right away its torture sitting in the room holding my baby while she passes I told them. They explained that it is not like the movies and sometimes takes several hours but they believed it wasn't going to be very much longer we had with her as they told us she would need support for breathing the rest of her life. The nurse convinced us to take her to the care by parent room to spend our last moments with her alone and when she appeared to be going to press the button and they will come.  That room I will never forget and the moment will haunt me forever, as I layed down with her in the bed something I had never gotten to do with her. I was becoming more attached with every passing minute to someone I had to say goodbye to, I held her close so she could hear my heartbeat and called out to god to just let me have her . prayer after prayer, tears after tears we fell asleep with her in-between us.

It was the middle of the night went I woke up to what I thought was Mariah breathing heavy , but to my surprise it wasn't her breathing heavy it was Mariah crying,  that tiny little cry you could barely hear because of being intubated for so long she had no voice. It appeared as if she was Hungary, what was I suppose to do she didn't have a feeding tube in to eat. I picked up the phone in the room and called her nurse I told her I thought she was Hungary and I wanted to give her a bottle just to see if she would take it. she told me Mariah was pretty heavily sedated so she didn't think she would eat but if I thought she was in discomfort they would come give her more meds. I asked her just to bring a bottle of formula for her in which she did. I picked her up and held her while I put the bottle to her mouth, and she started sucking away.She didn't take much only about 20 mls but I couldn't believe it! this was something the doctors said  she wouldn't do. Something in my heart was telling me that the Dr's may be off on what the future looks like for Mariah after all they are not fortune tellers they are doctors. I had said that if she was still with us physically when we woke up then this doesn't feel right. we fell back asleep eventually and before we knew it the sun was up an Mariah was still with us. I called the nurse to the room to come look at her, the nurse felt her and told us she was still warm and pink. I asked her for more formula as Mariah was eating a little more each time. It was at this time where the nurse told us about a program called now I lay me down to sleep. It was a program where volunteer photographers would come take pictures o our precious little one before she passed. At first we did not want any pictures at that moment all we wanted to do was to be left alone to grieve, but after talking with her about how special it would be to have these professional photos of her and of our family, we decided to give it a shot. The nurse contacted Tania who was able to come within a few hours. we had her twin brother present for them as well . I wont lie it was not easy having these pictures done as a family and thinking to myself she was no longer going to be with us. the pictures were absolutely beautiful and seeing the babies together broke my heart into pieces. After they were done t told us that she would give a call when the pictures were ready so that I wasn't alone when I received them in the mail. 

 

Just having those pictures done and thinking to myself something inside me was telling me this wasn't how it was suppose to be. I left the care by parent room and went for a walk outside to catch a thought. I was talking with a friend about everything that had happened and how I didn't feel I was strong enough to go through this , a lady who was standing near by had overheard my conversation and apologized for budding in but she had something to say to me . She had two children in a stroller, I could clearly see the older one looked as if he was delayed. She went on to tell me all of the horrible things they had told her about her sons outcome and that some of the things they were right about but they were so far off on others. I looked at that little boy and started to cry! he's beautiful I said to her as I ran upstairs back to my baby. I barged through the door and into the care by parent room where her dad was holding her I looked at him and said I cant do this! look at her, he looked at me and smiled as if I just read his mind . We immediately ran back through the NICU doors where a team of Dr's were having a meeting in her room. I couldn't hold back as I screamed hook her back up to everything I don't care what you guys say she is my baby. they went on to the explain her outcome, my defense was she is eating out of a bottle which you said she never has done and you said she would never do and she is breathing which you said she would never do, that is enough for me to say you are wrong! the nurses started getting all of the equipment together for her they hooked her up to the monitor to she what her saturation's were and it was amazing she was sating 100 % with her oxygen . Now Mariah didn't even sat 100% before her infection . how could this be , she went from and incubator, life support , feeding tubes being sedated and when we brought her back she no longer needed any assistance to breath, she was eating out of a bottle, they had put her in a crib because she was maintaining her body temperature on her own. This was nothing shy of a miracle, It has been one month that Mariah has continued to amaze us all with her bright personality she loves to watch her mobile and have her hair that she has left played with, she loves to be cuddled and talked to so she can definitely hear us. She is still awaiting her next shunt surgery as the infection markers are still decreasing but we are hoping to have her transferred to sick kids hospital soon.         

 

 

 

This is Mariah's Story, please keep her in your prayers and join us in this Journey..