Friday, November 12, 2004
I need to go to bed to rest, pump, etc, ….
But to make a VERY long story short:
John Camden (Johnny) has Down syndrome. We do not know much more about that condition than the name and well be learning a LOT about it in the near future and as he goes through each hurdle. I have a lot of jumbled information in my head, but I will try my best to be as clear and give as correct of information as I can remember.
Johnny was under the biliruben lights from 10am until 3pm yesterday in my room at the womens hospital because he developed high levels of jaundice (typical of babies who have Down syndrome). I was told I could go ahead and take him out to breastfeed every two hours and then put him back in because he NEEDED both the lights and the fluids to flush him out and poop out jaundice, etc.
Family and friends came by to visit and we took time with each one to explain that Johnny has Down syndrome and what little we understood about it at that point. Our family and friends were supportive and held him. Some cried with us, some congratulated us on our newborn son, others said they were sorry (though we told them right away there?s nothing to be sorry forwe love him.) But everyone reacted however they did and encouraged us however they could. We only knew about the developmental delays and had no idea that there could be so many medical problems and no doctor, nurse, or anyone explained to us what can happen or what to expect or look out for.
He had a few good meconium poops, which lucky Daddy got to change, but then they became less frequent and he was vomiting a lot. Soon all pee and poo diapers stopped and he remained dry. They could not tell at that point if he was vomiting like all newborns, getting out all the stuff from his lungs like normal, or if it was a complication. So we all played it safe. They checked his blood levels a few times and his bilirubin levels were rising. We all decided it was best to finger feed him pumped milk after he breastfed to help him flush out the jaundice since he was starting to have a hard time latching on. Sometimes babies with Down syndrome can have weak jaw muscles and most Down kids have low muscle tone. But he profusely vomited more and more, enough to project and splatter on the side of the issolette he was in. Every time he did that, he would gag and cough, but no one was there to see it except me.
I cried seeing my newborn son in such a position. I hit the panic button every time and nurses would rush in, but they did not seem alarmed and just cleaned up the vomit and changed the sheets of his ?bed?. My gut instinct said this was not right. I asked the nurses to take him to the nursery and monitor him overnight and they kept him under the lights, and brought him to me every two hours to nurse.
Once they witnessed him gagging and vomiting, they too worried and said he was a very sick baby. How could this be? I?d had a perfect pregnancy. A prefect birth. I?m a young, healthy, 20-something mum and take good care of my body and my family. How could I produce a sick baby?
I had a lot to learn that Down syndrome and the medical problems associated with it are in no way the mother or father?s fault. It is an extra chromosome that becomes a part of the developing baby at the very beginning stages of the pregnancy when the cells are forming and splitting. Nothing causes it and nothing prevents it. My chances of it happening to my baby are similar to chances of me being hit by lightning. No one told me this in the beginning. I had to read it in a book later at my son?s bedside at the children?s hospital. They brought Johnny to my room for only fifteen minutes total through the night, then they finger fed him my milk while he was back under the lights (his condition was WAY more than just sunlight could provide).
Thankfully, all except one time, he latched pretty fast (considering that hed been taking over fifteen minutes to latch on before that!! My milk supply started to pick up, so I started also expressing colostrum/milk an hour after he would feed, and send it to the nursery and they would finger feed him the breastmilk which he seemed to keep down better.
In the morning though, he would spit green bile on top of not peeing or pooing and our whole future has changed from there.
My husband John was out picking up some things I had asked for at the store, my parents had Myla for the night and I was at the hospital alone. They came in and told me that Johnny was to be rushed to the neonatal intensive care unit at the childrens hospital. I went to be with him in the nursery while he and I waited for the ambulance to arrive and transport him.
My first request was to ride with him and have my husband pick up my belongings from the womens hospital on his way to the children?s hospital, but I could not ride with him since I had not yet been released from care. He needed to be transferred immediately, and it?s a good thing they did it and I didn?t put up a fuss about it. Delaying his transportation until I was released might have been too late, because even the medical staff did not know how desperate his situation truly was.
I got a chance to hold him and the transport people had a Polaroid camera and took him out for me to hold while they took two pictures of us together. Hot tears fell on my newborn baby boy as I tried to smile at him and he was taken away. I sat alone in my room with no friends, no family, and no baby. Thankfully we live near a children?s hospital that is nationally known for its experts and he couldnt have been in a better place for care than there.
I called John on the cell phone and gave him the news as he stood in an isle at Walmart. I?m not sure how much he understood through my sobs, but he came rushing back. I was released from care and while being wheeled through the hospital down to the waiting car, I kept saying out loud, ?it?s not supposed to be happening like this. I?m supposed to be holding my baby on this ride.? I saw his little car seat waiting in the car. It was on the passenger side so I could have easy access to it. There was a little mobile hanging over it for him to look at on our car ride home.
We both cried on our way to meet him at the NICU. John pushed me in a wheelchair but I can?t remember much of that first ride. Only long winding hallways and dinging elevator rides. John told me he saw a little girl about three or four years old with Down syndrome get off of an elevator. She was holding hands with her mum and he says she locked eyes with him and smiled a sweet, shy grin. I never saw her through my tears.
When we arrived at our son?s bedside, he was still under bilirubin lights with those awful goggles on so he couldn?t see. Can you imagine being brand new to this world having just been in your mother?s safe womb and having all this happening around you? He had wires all over him, and a big I.V. with a couple of ports in his shaved head. There were surgeons and doctors crowded around the isollette where we were led. It felt like I was in a slow motion dream. Words were being said, things were happening, but I was feeling numb. It wasn?t real yet. It was just a dream. Another mum who was in the room later told me she had to leave because she was upset at what was happening. They also put screens up around the other families and babies in the same room so they weren?t watching or able to be too upset by all that was going on. They could still hear everything though.
He was rushed to surgery right after we got to see him and hold him. We held him not knowing if it was our last time to hold him alive. There was a dread and a pain that I can not describe. We also had the hospital Chaplin baptise him before his surgery and it was comforting to John and I to have someone pray over him and bless him.
After they did an ultrasound of his stomach area to check his intestinal tract, they found an alarming, life threatening problem. We were then told that we may need to prepare ourselves to have to make a decision about whether he would live or not with the next hour or two during his surgery or right after. For a couple reasons:
1. They havent had a chance to check his heart yet and 1 out of 3 babies with Down syndrome have heart problems. So no one knew if he would have a problem during surgery with his heart. But he needed surgery immediately and there would be no opportunity to check.
2. The surgery was partly an exploratory surgery, so they had no idea what they would find when they got in there. If his small intestines were twisted too badly, which they suspected, they would need to remove it and infants can not live without their small intestines.
This was the scenario that we were forewarned to make life or death decisions about ahead of time. It would be up to us to decide that he be taken off the respirator or not. Thank GOD he did not have the worst case scenario. The surgeon came out to tell us so before the surgery was over, but he still had about 3 more hours of surgery ahead. We left it in Gods hands and knew that His will would be done. We were celebrating that God would be making the choice whether or not he made it through the surgery, not us.
3. The problem that Johnny does have is in his intestines, and they were twisted and blocked, [Duo Denal Atresia & Malrotation of the gut] but in a less deadly way.
We got to see and touch him in the NICU recovery. Our church pastor had arrived just before we went into the recovery area and he was able to go in with us and pray for our son and for us. We are home right now and celebrating tonight that he is alive at this moment and we have plans to see him tomorrow unless we get any calls in the meantime.
Myla has spent last night and all day today, away from us at my parent?s house which is the best and most stable place for her to be right now, but its very hard on John and I. Shes as happy as can be and having a 100% blast. She feels right at home there being allowed to co-sleep with grandma and grandpa and my mum said she ?assumes the position? of nursing while cuddled up in bed. My dad got a cute picture of mum, Myla, and my seven year old sister all sleeping in bed in the morning. We are so glad that shes not sad and upset. And so glad that she has a place that is kid friendly and that they respect what we do with raising our family. As long as things continue to be stable with Johnny, we will get her tomorrow evening sometime and my husband John and I will take turns caring for her and being by Johnny Camden. If nothing else arises in the meantime with his health and he continues to be stable and improve, he will only have to be there (in the NICU, not sure where hell be after that) between 2 weeks to 1 month.
We are taking each moment that he is with us as one moment that we are blessed to have him in our lives. We prayed to conceive him. I prayed to feel another baby in my womb. It was a perfect pregnancy and a perfect delivery (no tears, no stitches ….even though it was fast). God has answered our prayers! He has blessed us with two pregnancies when we never knew if we could have any. We have two babies and Ive held those two babies to my breast and we thank God for Johnny and love him so much. We are so lucky to have the care available for him that he needs right now and the best pediatric doctors and neonatal care right in our city. We have not given up hope. Johnny is a fighter. He made it through a surgery that even the doctors were unsure about. He must have his mummy and daddys “SPARKY” combined.
Please keep us in your thoughts and prayers and that Gods will be done whatever that may be.