Wednesday, September 13, 2017
Sunday, September 3, 2017
NS is named for Jacqueline Noonan, a pediatric cardiologist who connected the dots between several similar characteristics in 1962. Reports of several symptoms date back to the 1800's, but no one had tied all the information together until then.
NS patients can be effected by a wide variety of symptoms and characteristics. The more common ones tend to be craniofacial characteristics such as short neck, eyelids that appear to be "droopy", and an overall large head. Heart defects are common, blood disorders are common, short stature is common. I'm not trying to write a medical research paper here, so I won't bore you with lots of details. However, if you are curious there are links at the end of this post that includes in depth information.
Oh, but one last thing before I move on...NS is NOT the "boy version of Turner Syndrome". ARRGGG! Such outdated statement to make! There is also more on that in the links at the bottom.
John has the common craniofacial characteristics, he has the "droopy" eyelids and I am often asked by strangers if it is his nap time. He has a somewhat large head, the short neck and he had the webbed skin on his neck at birth. He grew into the extra skin in time and still is growing into it to some extent. Despite his appearance, he is still outrageously adorable! Perhaps I am biased though?
He also deals with Failure to Thrive, this resulted in his receiving a G-tube which was later turned into a GJ-tube and provides all his nutrition. Poor eating is ties into his poor muscle tone, sucking a bottle or breast takes a lot of effort and energy for someone with low or poor muscle tone. He just could not sustain himself to a healthy threshold. I can't even count how many questions the tube hanging out of his clothes has brought! What is THAT? What is wrong with him? Will that always be there? Why does he need it? My answers have become calloused over time. I used to try to explain it in the very beginning, but now my answers are more like "it's complicated", "it's a long story", and then promptly ignoring the person.
John had open heart surgery when he was five months old to correct his Pulmonary Valve Stenosis. That was a very scary experience but he came out like a warrior!
Today, John is well and medically stable. We are working on all his skills to close as much developmental delay gap as possible. I believe he will do great things in life and NS will not define him!
Noonan Syndrome - A rare disease
Noonan Syndrome History
Sunday, July 16, 2017
They knocked on my door that morning and we proceeded to talk about the situation at hand with Jones condition and uncertain future medical status. We jumped right in with the message delivered the night before from the coordinator about them praying and thinking hard if they were going to back out or not. Tears began to roll down Her cheeks as she said they were not ready to walk away yet, his little face was just so precious, BUT they needed more answers.
Their proposed plan was to get results from sonograms performed the day before, head to toe on Jones to evaluate all his major organs. If something was wrong, we would burn that bridge when we got there. If all was well, once he was discharged from the NICU they wanted him placed in transition care, where they planned to request genetic tests to determine what his condition was and what possibly his future held. Depending on what was predictable, they would evaluate if they still wanted to proceed with the adoption or not. Oh by the way, as long as he was in transition care, all his medical care would be covered under medicaid.
I had made up my mind I was vehemently against transition care. It had been brought up prior to birth as a precaution due to baby daddy issues. We knew it was strongly encouraged by the adoption agency to prevent anyone from getting too attached in case the birth father decided to contest the adoption. This however...this..was a beast of a totally different color! They exited my room after a few more minutes of conversation and crying. I had a lot to chew on and think about.
I decided to finally announce to the world that I had had a baby a few days ago. Very few people knew about my pregnancy, so the post gained a lot of attention and shock. I said not a word about the adoption plan yet, the news of a new baby almost no one knew anything about was enough shock. I was not ready for the backlash I was sure some would come at me with. I just knew I was bursting at the seams holding everything in, and having only these few people with their own agenda to talk to. I had to slowly start talking to the world.
While still mostly strangers in an online group, the only other people who knew most of what was going on, was my adoption support group on Facebook. Those ladies had a huge role in saving me and my baby...but more about that later.
Later that afternoon, we had the results from Jones's tests from the day before. Everything looked good! Then I was confronted about my "brothers" announcement. I was asked if I did it because I was considering parenting instead, if so I needed to tell them now. There would be no hard feelings, but I needed to say so now before they got more invested. I gave the honest answer at that time, which was no. I had no more means of supporting another child today than I did four months ago, my same fears had not changed. Regardless of that, but..they ARE brothers I said. Calvin does have a brother, and he has another brother too (referring to their bio son).
We talked further about arrangements, all the sonograms had looked good; but they still seemed hell bent on transition care, to which He blurted out "it's there to protect us". We discussed briefly what each other had read from Google about Noonan Syndrome. She stated they had no issue with and could handle learning disabilities or development delays, but felt better that all his major organs looked well. Again, there was a blurt out by Him, this time is was "just so long as he doesn't need ten heart surgeries in a year"
I was still hell bent against it. We did agree it did look like he would be in the NICU for some time, so maybe we could push the hospital for the genetic tests for their "more answers" and the window for the adoption to be contested would be either closed for very close to closing. If all the what if's played out they would be willing to take him straight home. This made me feel better and gave me peace...for a minute.
That comment about "just so long as he doesn't need ten heart surgeries in a year" was really beginning to sting. Something began to feel off. Something began to feel wrong. I didn't know what other choice I really had though.
They popped in for the last time that day to let me know that they were leaving, but She would be returning the next day. We bid our goodbyes and they left, and I began to pack to go home. Since my milk had really came in strong this time around, I decided to request an electric pump so I could deliver milk every few days until they took him home. I also was going home with my anti-depression medicine that I had to stop cold turkey during early pregnancy.
Leaving the hospital with no baby was not the "my life can resume" cake walk the brochure said it would be, it was such an empty feeling. It was even worse that Jones was laying in the NICU with no one around him, and Calvin was asking where our baby was. This wasn't how any of this was supposed to happen.
I laid on my couch for the next three days crying and pumping. Wondering how could I have let myself end up in this place, how could everything have gone so wrong. I had judged so many people in my life for wearing the same shoes I was wearing now. Maybe I deserved this somehow, maybe this is what I get for being judgmental all those years. God must really hate me to put me through all of this. Saturday in the late afternoon I finally got myself dressed and got us to the hospital to deliver the milk. As I rounded the corner, we ran smack into Them. We chatted a few minutes about how Jones was doing, and how I was healing. I continued around the corner to the NICU door, rang the bell and then handed the bags of milk through to the unit secretary and walked away. I kinda wished I could go in, but I wanted to push away the emotions, I also did not have a sitter for Calvin.
That night I kept thinking about how I walked away from the door, and how They were likely there holding him instead. She had been texting me fairly regularly with updates and photos, with every text I tried to pretend I didn't know the baby in the photos. I cried most of that night and I laid awake until wee hours Googling Noonan Syndrome, thinking and crying. How did I ever get to the place I was in???
The next day which was Sunday, my nephew and his girlfriend watched Calvin at the hospital. I worried about running into Them, I just wanted some along time with my baby. I was relieved when They were absent from the nursery. A nurse was feeding him, and she was hesitant to hand him to me as he seemed to be struggling. Jones then suddenly stopped breathing and began to turn blue, it was like he just forgot he was supposed to breath. A respiratory episode earned him at least five more days in the hospital.
Jones had been moved to a step down unit the day before, which was a very good sign and a step closer to being discharged. Time was inching closer that everyone would be looking at me to sign the TPR. A Monday discharge was being talked about (although that had just changed), I had decided I would take him home and be his "transition care" until more information and answers that They so badly needed were obtained. I had mentioned the idea to my adoption coordinator, as she was still trying very desperately to convince me otherwise.
I had told Them in text that I had been there and missed them, and nothing else. I wasn't really in the mood to be friendly with Her or either of Them. I felt like there was a dog and pony show going on for me, They were trying to go above and beyond to convince me there were committed when they were talking about backing out just four or five days before. Well, just so long as Jones "didn't need ten heart surgeries in a year". They must have sensed my distance, I wasn't even home yet when I received a text from the coordinator asking to call her.
I spoke to the coordinator that night, and she was very much against me taking him home because I "might accidentally parent" according to her and in all her years of experience, no birth mom that took her baby home had then relinquished. I still didn't have the means of keeping him I told her, but he would NOT be bounced around. Period. I'll borrow some things to get by for a few weeks. The coordinator then turned the pressure up by trying to talk me into an alternative plan, still involving transition care. I flat out AGAIN said no, and that I needed time to think. I was worried They might regret adopting Jones later, if he were to have a major medical issue later. There was no telling with Noonan's.
I do not think it had even been twenty minutes when my phone rang and it was Her. This was the pressure I had been warned about....I do not clearly remember everything She said as I was rather broadsided with the call. I do remember the mention of just talking to the coordinator, and I was considering parenting instead,; also that They would love him all the same and just as much as Their bio son. I was rambling and frantic to find the right words and so broadsided. I had never said I was parenting in my conversation with the coordinator. She said They were going home to give me space, and She had wished They had known otherwise before They bonded with him, that They were just in shock for a moment, and were only trying to be transparent and honest with me. I thanked Her very much for that honesty, it told me what I needed to know. The adoption wasn't off the table for me, but I needed time to be sure. I needed those answers too! She said goodbye, and that was the last I ever heard from her.
I stayed in touch with the coordinator over the next week about Jones's condition. I finally laid everything out that had transpired to the adoption support group. None of the opinions or answers in favor of the Couple. I wasn't alone in my thoughts that this whole situation was wrong. Some suggested if I still feel I want to place him for adoption to choose another family who would be better prepared emotionally. Of course there were the cheers to take this as a sign to keep my baby, it had happened for a reason!
On October 3, 2016, I sent my last text message to the coordinator, and I was as gentle as I could have been....
Saturday, April 29, 2017
I sat in my bed and began to wonder what I would do with this baby? Would I just take him home? I was not prepared, and had nothing for a baby. I had the two gift bags of a few things I had bought, and free samples I brought for Them. Was transition care my only logical choice? Could I just make do for a week until I went through profiles of other families? I stayed awake most of night worrying and stressing. How could this be happening?
***Side note: transition care is basically a private foster home. Regardless of how many pretty bows put on it by agencies, it is a private foster home employed by the agency to hold babies until either legal issues are resolved or they are matched with a family.
I finally just took a breath and decided to rest until we could all talk the next day.
To Be Continued.....
Tuesday, February 28, 2017
Thursday, February 23, 2017
My pregnancy was rough, physically and mentally taxing. I had been having semi regular contractions for several weeks. I was chronically constipated and severely anemic. Time couldn't move fast enough to get this over with. Even more so than when pregnant with Calvin, I didn't know problems until this pregnancy.
I was placed on modified bed rest moving into July. My paycheck was suffering horribly, and I was hardly employable at any other company. At least Calvin was on his summer visit with his dad, which meant I could keep my feet up and take warm baths to soothe the contractions.
The only light at the end of this tunnel was the potential adopting couple. They would be there to take over so I could get on with my life. Continue with my life the way I had planned it, or as close to my plans as possible. My plan for an only child, I was going to start college, get a better job. This pregnancy was standing in the way of what I wanted.
I was Facebook friends with the couple and communicated regularly, the wife and I texted at least weekly. They were slowly becoming my only support due to this big secret I was carrying. Literally carrying. Family either didn't know, didn't support the decision or were indifferent and left me to my devices.
As if I didn't have enough stress on my plate, I had to pick my son up from summer visit early...three hours from home...at a CPS office. For his privacy I will not speak of any details of his ordeal.
Affording private child care was challenging to say the least. Taking him to work with me was definitely not working out. I lost my job before it was all over with. I already felt hopeless, this was digging a hole to hell.
The weeks ticked on and D-day was approaching. First was Calvin's birthday, the whole week centered around him as the following week I would be in the hospital. My perfect plan would take place with my new lifelong friends.
This is where I will pause...
Friday, February 17, 2017
I began to Google adoption agencies. It seemed the easiest route, they have bountiful families to choose from and handle all the legal mumble jumble.
I really couldn't stand the typical "being selfless and brave" bit that's so common in the adoption industry. I wasn't doing this out of bravery, but to fix a big screw up and allow this baby boy to have better. It's desperation, not bravery and a horrid feeling to feel.
I found one that seemed less religious and straight forward. A big nation agency called Gladney, I called and would be getting the intake packet in a few days. It came in the middle of the week, and I had planned to fill it out over the weekend. It must've been three inches thick!
As the weekend approached, I decided to run the agency by a local mom group on Facebook to see if anyone knew anything. Good or bad, I wanted to know before I got knee deep with them. Instead, I got a private message from a friend of a friend, who has a friend that had just announced they were looking and ready to adopt. I looked at their summarized profile and decided I wanted to see their whole profile and talk to them. She put us in touch.
We chatted some through Facebook, then the next day we spent over an hour talking on the phone. We had similar backgrounds, had boys the same age, similar parenting styles and likes and interests. I told them of the suspected problems with the pregnancy but all tests came back clear, and they were ok with it. I wanted to meet them in person.
A few weeks later we met over lunch with my godmother and Calvin in tow, our boys hit it off beautiful. My godmother liked them and so did I. We talked about an open adoption, I convinced myself that Calvin was not losing a brother but gaining another. It sounds so cute when said that way.
I was given a book by the agency called Sam's Sister to help Calvin understand adoption. I could not get through that book without crying. Never! I had my godmother read it to him instead, and I still had to leave the room. I despised this pregnancy so much, I couldn't figure out why I cried.
This is where I will pause for now..