Handle with Care

It's amazing how there are seasons of life where it feels like everything is crashing down around you all at once.  I have to say, I am in one of those seasons.  I feel piled up with all my own heavy stuff, and the heavy of those around me.  I am choosing to be thankful... for my home, my marriage, my mind blowingly precious kids, and for the life that I have, which is so fragile and easy to lose.

As much as I want to spill all of my guts, I am just going to share a quick update about Jaylen's health because I know that so many of you are hounding me for an update praying for him so faithfully. :)

Our insurance will not cover the center where we were hoping to have him thoroughly evaluated.  If we choose to take him there, it would be self-pay and we would have to move into a refrigerator box.  Instead, we are opting to go to one specialist after another in order to come up with some diagnosis.  If/when special needs are established, Jaylen will qualify for medicaid, and then that center will be covered.

At this point, we have only gotten in to one specialist.  I don't know why it takes 1,000 years to get a baby's heart and hearing and vision checked... but, it does.  His first appointment yesterday was with a pediatric dermatologist to rule out a genetic condition that presents with cafe au lait spots and hearing loss.  I feel like I know in my bones that he had meningitis and that that is what caused his hearing loss, because it wasn't handled properly by the hospital, so it was not surprising when she said that we were not dealing with that genetic condition.  She did say that one of his birthmarks was harmless, and the other wasn't a birthmark at all (despite what I was told at the hospital) and would have to be removed for it's risk of melanoma.

So, while I was hoping to check one specialist off the list, I actually have to add a pediatric plastic surgeon to the list... and we are still no closer to clear answers.

I feel like I am beginning a very long road that I am not equipped to handle.  I also feel like I love Jaylen more than I could possibly express, and I am thankful that I get to be the one who tries to have what it takes to handle this.

God is teaching me some ridiculously hard life lessons right now, and the biggest one is that I have underestimated the fragility of my life.  It is very scary being aware of how breakable everything is.  It is terrifying to know that my heart, my marriage, my kids' health, my relationships, everything... is breakable.  It is scary, but it is also a good reminder that I have to work hard to be a good steward of what God has entrusted me with, and it helps me long for heaven... where things can no longer break.

Jaylen's World Premiere

As I shared before, we decided not to share a picture of our new baby boy, Jaylen, because there was still a small chance that his first mom could revoke her consent for us to parent him.  We wanted to be cautious and respectful.  During our last visit, I had a conversation with Miss N. (Jaylen's birthmommy), where she looked at me like I was crazy for not posting pictures!  This girl amazes me time and again... she wants people to see his picture, to celebrate his arrival, and to see his gorgeous face!  She asked that I send pictures and videos of his homecoming, because she wants to see him welcomed home.  I don't know if I have the stuff it would take to see strangers welcome my child into their lives, while I watched from a distance.  I admire her selfless love, and her genuine joy in his being placed in our home.  I want to be like her when I grow up.

Our conversation about the photos got me thinking about the fear I am still holding.  I have said over and over that I want to live fearlessly, letting go of self-protection in favor of grace and recklessly abandoned faith.  These things are true, but I am also still scared she will change her mind.  She has given us no reason to believe that will happen, but it is still a very vulnerable position to be in - for both her and us!

Still, she gave us permission to share pictures with the world... and I am delighted to do just that!

So, here is the debut of our special guy, Mr. Jaylen Jonathan Khalil Capuano

Defying the Odds

Just like everything else so far in our adoption journey, bringing baby Jaylen home has been bittersweet. Saying goodbye to N. was very hard to do. I have come to love her and admire her in a way that I have never experienced before. How do you describe the love you have for the woman who gave you a remarkable gift you didn't deserve... Purely out of love? Christlike is the closest possible descriptive I can imagine.

On the other hand, I was ready to be home. Two of us were still in the city, three were home, and two others in Michigan. Having my family spread around the country was unsettling and I was very eager to put my huge family puzzle back together.

We arrived home on Wednesday night, and it was nice for some friends and family to meet Jaylen for the first time. Things were not completely normal since Harper and London weren't there, but home still felt nice.

Thursday morning was a whirlwind - Tom left at 5:00am to travel for work, I got the kids off to school, then brought Jaylen to their classes for a drive by show-n-tell and then took him to his first check up since being discharged from the NICU.

I expected to take a decent amount of time reviewing all the medical craziness of the past two weeks... I did not anticipate getting a new list of medical craziness to look forward to. Below is an overview of the big ticket concerns that had either been overlooked, or mistreated during our stay in the Bronx, that we are now concerned about:

- Jaylen has a severe heart murmur that was noticed, but was treated as a sign of the infection and never mentioned again. Our doctor was shocked that he had not been given and echocardiogram and insisted that we have one done sooner than later since the antibiotics cleared up the infection, but did not erase the significant heart murmur.
- Jaylen, again, failed the hearing test. While he was startling to very loud noises in the NICU, we have discovered that he no longer responds to sound at all. We went to a 10 school drum line competition today, and he didn't so much as blink when the drumming started. Our doctor looked at me after the hearing tests and plainly said "yeah, he can't hear anything." I knew he was not responding to sound, but I was still somehow shocked when those words came out of her mouth. She suggested we start looking at early sign language books.
- There is some concern with possible visual impairment, as he struggles to keep his eyes straight and focused for any length of time. Not sure if this is a muscle control issue, or a visual issue, but either are very concerning.
- We need to consult a general surgeon for an umbilical hernia, and to possibly have his circumcision redone.
- His grasping reflex is inconsistent at best, which was another indicator of muscle control issues, and concern for the doctor.
- He has gained about two pounds since birth, which we thought was really good... but we now understand that it's an unusually large amount of weight to gain in such a short period of time. We don't know what this means... But it was one more thing the doctor was a little baffled by.

So, from here... We are trying to get a pre-approval from our insurance to visit the Kirch Center, where specialists will evaluate Jaylen at a sort of "super appointment" then come around a table at the end of the day to discuss a diagnoses and care plan for him. It takes two months to get an appointment, so in the mean time, our doc is scheduling appointments with a cardiologist, an audiologist, an opthamalogist, a general surgeon and a pediatric dermatologist. (The dermatology concern is regarding some spots that we were told were birth marks, but may in fact be cafe au lait spots that sometimes present with hearing loss and indicate a possible genetic condition.

While I know that it is tempting to share every story of misdiagnosis and medical success, I ask that you please refrain. We KNOW that these things could all amount to nothing, and that there can be a complete healing. We KNOW that there are plenty of stories where a child was told he couldn't do x, y or z... but he defied the odds and did those things and more. We share these things not because we are worrying or doubting and need some encouragement, we share these things for the sole purpose that we DO believe in prayer, and are asking for these things to be lifted up to the God who heals, and sees, and knows... because He is the same God who creates.

Jaylen is a racial minority, born in the Bronx, which is the abortion capitol of the world... The fact that he is even here on this planet is already a miracle. I will unabashedly ask for you to join me in begging God for miracle after miracle to be performed in this boy's life, because I know that He created Jaylen with purpose. I simply cannot wait to see what He does in response to our collective prayer. More than anything though, I can't wait to see what He does in and through our son, this beautiful miracle who has already defied the odds.

in the NAME of love.

After going back and forth about the risks vs. benefits of sharing baby boy's name and picture before the 30 day window closes, I have decided to share his name. I will not be posting a photograph until the 30 days pass, out of respect for his biological family, but his name is the same whether she changes her mind or not, as we have decided to keep the name Miss N. gave him at birth. So, wether she ultimately chooses to parent, or we continue to... his name will remain the same.

I know his face will also remain the same no matter who has the privilege of parenting him, but the difference is that it would no longer be our right to share his photograph publicly.

Throughout our two and a half year adoption process, we have been planning on using the name Judah, should we have a baby boy. We wanted to remain open to any given names though, and were pleased to hear that Miss N. chose such a sweet and lovable name for him, one that was very meaningful to her. Knowing this, and loving the name, we decided to keep it, but to add in a little meaning of our own.

So, we are pleased to announce that on January 28, 2013 at 6:02pm our sweet Jaylen Jonathan Khalil Capuano was born in Bronx, NY... Weighing in at 7 pounds 13 ounces.

Khalil is to honor N's beloved uncle, and Jonathan is to honor one of Tom's brothers... Jaylen's beloved uncle Jonny, who has played a very large role in helping us raise some funding for adoption fees. Jonathan spent countless hours designing beautiful and unique t-shirts and dresses that he screen-prints by hand, out of the goodness of his heart. His work has helped take the edge off of the huge financial burden of paying for a second adoption.

Jaylen's name means "calm" and "tranquil" which is a perfect description of his demeanor so far, as well as his birthmama's. Something else that was kind of special to us was discovering that the alternatively spelled Jalon was a descendant of Judah - our intended first name for him.

So, there you have it... Little Jaylen, the name of a very special boy, who we pray will live a life that brings glory and fame to the name of Christ, no matter who ends up being his mommy and daddy. The bottom line is that while we see no reasonable indication that our parental status would be revoked, we simply cannot go another day without acknowledging and naming such a miraculous gift we have been given... even if it were only for a time.

NICU to Nemo

Yesterday was a big day for our little guy. First, he met Aunt Onnie (my sister BethAnn) and then he was discharged from the hospital after eleven days in the NICU!! It was a huge relief to walk out of the hospital with my precious baby boy after such a long wait.

When we stepped through the hospital doors, relief quickly gave way to shock and facial freezer burn as Nor'easter Nemo blizzard-slapped our faces. It was quite a first day out in the real world for this guy. We walked a mile and took two different trains in a blizzard, myself, carrying him in a sling, and Aunt Onnie lugging a huge Adidas duffel bag with a smile on her face the whole time. (*note: if you know BethAnn, this is where you throw your head back and laugh like a mad scientist, and if you don't know her... suffice it to say she was less than pleased to be carrying anything under such unreasonable conditions.)

Nonetheless, we survived the assault on all our exposed skin, and we made it back to the apartment a friend has so graciously allowed us to use. Once we arrived we realized that we were in a kind of survival situation where we were stranded with no food. To the rescue came our friend Melissa who swooped in with some of NYC's finest groceries and takeout.

As I mentioned in my last post, I have been enduring taste torture, so this was a welcome flavor revival. BethAnn is a recovering blandaholic, so she was very thrilled to experience "the middle eastern." She was so pleased with her relationship to one particular dish she shouted to the heavens between bites, "I mean, how awesome am I!?"

Melissa Waheibi was, in fact, the awesome one for facilitating such a noteworthy self-esteem transformation.

All food aside, it was wonderful to visit with Melissa and Onnie and just relax with the baby who was no longer tethered to any medical equipment. It has been so much fun to walk across the room with him.

He has quite a bad diaper rash due to the antibiotics causing explosive diarrhea. I have never felt so bad for a set of tiny brown buns in my whole life. Additionally, his umbilical nubbin is holding on for dear life and is starting to look a touch infected. After ten solid days on IV antibiotics, it is very frustrating to see any possible sign of infection, especially since the NICU doc said to bring him right to the ER if there is any sign of infection.

I feel like I have handled the big, scary stuff pretty well. I can hold it together for all of these adoption ups and downs, and I can even handle the really scary medical stuff... but, I gotta confess the these two little things just about pushed me over the edge. Fortunately Onnie was there to talk me off the ledge and encouraged me to call the doctor.

She said to keep an eye on it.

Crisis averted. So, we are here now just waiting for another of my wonderful friends to come to the rescue... My friend Julie, who is allowing us to hitch a ride back to Rochester with her on Tuesday or Wednesday.

I really do not know how we would have survived the time if not for the kindness and generosity of some amazing friends, family and even people I have only met once. Friends at home bringing meals to Tom "can't cook" Capuano, and my friend Melissa who brought life-changing meals to us here... My sister, Kristin, who is watching the two little ones in Michigan, and my sister here consoling my exhausted self when I need it most. Apart from my brief diaper rash depression, I have truly felt so lifted up and sustained by all of the encouraging words, the prayers and the help.

I know that God calls us to live in community for this very reason. Because without this awesome community of support, I would be famished, in a blizzard, carrying my own Adidas bag, and just sobbing into a dirty diaper.

Thank you Jesus for sisters, the ones I grew up with, and the ones I have inherited along the way.