I wanted to share our journey with my fiber friends and family! I hope that everyone will be praying for him over the next several weeks, really for our whole family as we are preparing to embark on the next Chapter in our Journey.
On Feb. 18, 2008 we had our Son Mark via C-Section. We expected another bouncing baby boy, a few days in the hospital and then home to begin life with a family of 5. You always listen for that first cry the one that says "Mommy I'm here". I was so thrilled to hear that cry! Relief flooded over me, and I didn't even realize that they never bundled him and brought him over to me for a quick peek before taking him to the nursery as had been done with the other two, until later. I had a nice nap thanks to the Wonderful Anesthesiologist, I remembered waking up and asking the anesthesiologist if the baby was ok, and she said yes everything was fine and that they were almost finished with my surgery.
The next thing that I remember is being back in my room. A family friend was there sitting with me and we just talked I couldn't tell you what about. My husband kept popping in and out to check on me as he was staying in the nursery with the baby because he was having some trouble keeping his oxygen levels up. My husband said they thought he had some amniotic fluid in his lungs and that it would take him a bit to work it out!
As I reflect back on the events of that morning I just love my husband more than ever! While they were finishing my surgery one of the nurses in the nursery who was taking care of my son noticed a line on the palms of his hands that caused her some concern and she sent another nurse into the OR to ask my OB to come and take a look at him when he was finished with me. So my husband was standing by the incubator that our Precious Baby was laying in with 100% oxygen being provided in a hood that was over his head when my Dr came out to look at him and said "This baby is fine who said he has Down Syndrome?!" My heart breaks for my husband who managed to HOLD it Together, and throughout the whole morning he never said a word to me about it. I honestly think he didn't know how to tell me!
So at this point I think both Dr's were getting on the internet from what my husband told me and researching to see if in fact our son had Down Syndrome! Needless to say at some point I couldn't even begin to tell you when our friend left and my husband and our Dr (Family physician), came into my room and My husband sat in a chair quitely while the Dr stood at the end of my bed and said the had a few things he needed to discuss with us!
"We believe that Your Son Has Down Syndrome! And we think that he may have a heart defect!" All of the air left me in a couple of Sobs, and then as Fast as I Prayed the prayer with my heart "Oh Dear God I need You!", a peace came over me and I was able to ask how bad the heart defect was and what could be done for it. I can only tell you one of the options that he stated because I couldn't not and still cannot believe that it came from his lips "Do Nothing" I was floored and looked at my Husband who was still looking at the floor and told him flat out " I think our son needs to be at Children's Mercy NOW!!!!!!" I looked at the dr and let him know that we would definately not do NOTHING!! The next statement that emenated from his lips too will forever be ingrained in my memory. "Well now that I know where you stand we will be more Re-Active and Pro-Active in his care!" I'm sure I don't have to tell you that he is not Our Dr anymore!
Getting to see my Beautiful Baby Boy!
As soon as that man left my room I buzzed my nurses and asked for two things. A box of Kleenex and a wheelchair! I made one quick phone call to My BEST friend whom I knew would ask no questions and just do as I asked! Through tears I just said PLEASE PRAY, just Pray!
I was wheeled down to the nursery where I got to see that sweet face, tiny hands, beautiful little feet, and just drink in that first picture with my heart. And I knew the instant that I saw him that Yes he did have Down Syndrome, but that was nothing and my only concern was his heart and how can we get it fixed, what exactly is wrong with it! All of those questions were answered within the next two days. The roller coaster ride of our life was about to begin.
This was the first time I got to hold my Sweet Bundle! I can't describe how wonderful that felt!
3 Dr's Standing at the Foot of Your Bed
Mark was on an IV and couldn't not be taken out of his hood because even with a canula in his nose he could not maintain oxygen levels. I pumped every two hours and took it down to the nurses. Then I would sit beside his incubator and dream of the moment when I would get to hold him in my arms. Kiss his sweet little cheeks. I can't tell you how hard it was not to be able to hold him in my arms, not to be able to nurse him! I took great joy in being able to change his diaper :o)
After one of my little Milk Runs and visits with Mark I believe I left his bed around 2:30 in the morning and went to lay down for a bit before the next run. It was about 3:30 in the morning when I was awakened by the sound of someone saying "Dad! Dad wake up" I think my husband and I both set Bolt upright in our beds at the exact same instant! And then Dr. D started to tell us that there had been an Episode! Sheer Terror was all that I could feel and I couldn't breathe all I could think was that My Baby was Gone! My husband was the one to find his voice and instantly interrupted the Dr to ask the question "Is My Son Gone!" The sound in my husbands voice as the question came out ripped my heart wide open and I can honestly say that I never want to feel that pain again in my life! "No we have him stabilized now!" The relief that came with those words tore sobs from my soul with relief that God had not called his Child Home, but left him in our care, I never knew that relief could be so overwhelming as it was at that moment! We sat and listened to Dr. D as he explained what he thought had happened and then went straight to our son's bedside with the Dr's as we ALL prepared for the next leg of our Journey. Dr D was trying to arrange transport for our son to Children's Mercy. The blinds in the nursery had been drawn and all babies except for our son had been taken out of the nursery. The loving and attentive care of the nurses still touches my heart deeply, Dr D in all of the Chaos had felt the need to apologize for his appearance! And when he did so I glanced at his appearance for the first time, for I never would have noticed. I can't even imagine the feeling those dr's get when they get those calls in the middle of the night and in the wee hours of the morning. His hair was going every different direction, shirt all askew, no socks, belt hanging in the loops of his pants. He was a Glorious sight as he and the ER Dr and the nurses had SAVED the Life of Our Son! As transport was OK'd and while we waited for the Team from Children's mercy to arrive, my OB was called, and promptly arrived to dismiss me early so I could go with my Son. This wonderful Dr also stayed there with us and watched and waited as the other dr's and nurses cared for our son. My husband and I watched as they continued to work over Mark. I looked at where he had been in his incubator and saw the evidence of the efforts of the Nursery staff and Dr's. As I looked terror went through me also realizing the full effects of what had happened. We watched as the Lab tech's tried to draw arterial blood for tests. You could see the strain on their face and my heart went out to them for the care that they were taking to be as gentle as possible while undertaking the task with parents watching. They were preparing to put Mark on a respirator but the thing kept alarming when they turned it on! It was working but I have to say that when they are preparing to hook your child to a respirator that is going to breathe for him and you hear alarms it's not very comforting. As we watched Dr D attempt to intubate Mark it was just terribly hard. On the second attempt he got the tube in and I was able to breathe a sigh of relief. It was a mad dash to get dressed and get the few items that I had ready to go at this point so that we would be ready to leave for Children's Mercy which was a few hours drive for us. Mark would be flying on a fixed wing aircraft with a special Neonatal Crew! We were able to speak with and meet the wonderful crew that would be caring for our son. My husband and one of the crew exchanged phone numbers so that he could call us and let us know when they had safely landed in Kansas City with our baby!
Our Children's Mercy Stay
Children's mercy is an Amazing Hospital with amazing Nurses and Dr's. We were told about Marks condition and what to expect. And things didn't seem as scary! There were answers for questions, explanations about his condition.
Mark has a VSD Ventrical Septal Defect or simply put a hole between the ventricals which allows his oxygenated blood to mix with the un oxegynated blood, causing his heart to have to work twice as hard to pump enough oxygenated blood to his body. And with all the education came the sense that everything was going to be OK! They wanted to let him get stronger and bigger before doing surgery to repair the defect, and in some instances it has been known to close on it's own.
I have had to learn to do things that I would have never imagined having to do! Before we could leave I had to learn to insert a NG feeding tube through his nose! Ok that was very intimidating! A nurse took me to an Education room and gave me a couple of lessons using a special doll that they have. Even though it was a doll your hands still shake a bit! So I did it and that part got signed off on. One more step closer to going home :o) Back by my sons bedside the nurse gave glowing reports of my lesson, and told the nurse caring for my son that I still had to perform a drop on Mark before going home! "Well I'm getting ready to replace it right now she says so why don't we just have Mom do it!" I learned that when it's your child you can do things that you never imagined possible. I DID IT! And I did it on the first Attempt! Another step closer! Our next step was to move to a room where I cared for my son alone, with minimal help from the nurses. Rooming in with the baby! It was all falling into place and it was looking like I wasn't going to just get to see my Boys that weekend I might actually be going HOME with all 3 of them! One problem was that my husband was supposed to bring the car seat as Mark had to pass a test where he had to spend I think it was 8 hours in his car seat and be able to maintain his oxygen levels. Well my husband made a call to an ex co worker of his who went out and purchased a car seat and dropped it off at the NICU desk for us! He passed his test, I passed my test, I learned how to operate the feeding pump that we would use for his supplemental feeding since he didn't have the strength to take complete oral feeds. Had to learn how to draw up med's in the syringes propperly and other things that I'm sure I've forgotten. But we got through it all and got to go home!
Ronald McDonald House In Children's Mercy
I want to tell you all that the Ronald McDonald house that is right there inside Children's Mercy was my home while I was there. I had a room to sleep in at night, Shower facilities. Personal care items provided from wonderful people donating things. The use of Washer and Dryer and laundry soap and dryer sheets. You don't know how important something so simple can be until you are placed in a situation where you don't have it! I was taken care of by the wonderful Volunteer Staff and if you happen to be one of them THANK YOU!!!!!!
We have had a wonderful 16 months now! There have been ups and down's. A few hospital stays for having a Mic-Key button placed for tube feedings! Below is Mark During his stay for the PH test to see if he had acid reflux which was required before the Mic-key button placement surgery. He was a real trooper!
I was a mess during his Mic-key placement stay! There are no pic's. But again he was a little trooper.
We have the surgery to repair the hole in his heart coming up the Middle of July! He will be undergoing Open Heart Surgery! For the Dr's it's routine and they do it every day! For this mom and dad it's Terrifying but at the same time we know that it is very necessary. He is not gaining weight at this point which tells the Dr's that his heart is having to work so hard that it is taking every calorie we can get into him and then some. We have known that this was probably going to be necessary but always held on to the hope that Mark's case would be one of the ones that closed on it's own.
July 14th will be his surgery day! Please mark your calendars and Pray for the Surgeons working on him, and for his strength and quick recovery! We are ready to have this behind us and to be able to Really move forward with our Three Amazing Sons.
Thank you for letting me share our Journey with you!