February 28, 2013

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.

February 19, 2013

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

February 16, 2013

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.

February 11, 2013

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.

February 9, 2013

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.

February 7, 2013

The Good, the Bad, the Inedible

We have some very exciting news regarding our brave little guy!! He is improving so much that it looks like the NICU doc is comfortable just doing the ten day antibiotic treatment!!! He is ten days old today, but did not start antibiotics until late at night on his second day.... But still, that means that tomorrow, I can walk out of this hospital with a baby boy who is NOT ATTACHED to a single tube, wire, machine nor any other beeping thing belonging to a man. (See what I did there? Shakespeare don't mind.)

I really cannot believe this. It feels like I have been here for months. I have so many ups and downs along the way, as many of you have probably noticed, but this time in the hospital has been the happiest and crappiest of all. In review:

Happy- they let me ride along in the ambulance as they transferred his incubator to a different hospital.

Crappy- my baby was in an incubator.

Happy- they allow one person to stay with him at all times, that got to be me!

Crappy- I did not know this was going to happen so I had absolutely nothing with me... Not a purse, clothes, toiletries, nothing. I have been here for a week relying on my husband to bring me clothes and toiletries. While I appreciate it so very much, I just gotta say, boyfriend don't know a mineral powder from a liquid foundation to save his life. I feel like I am at a junior high lock-in without my overnight bag. And then the leaders were all like "Yeah, change of plans... we're locking you in here forever, and instead of your belonging we will provide you with a sick newborn, and inexplicable amounts of beeping at all hours, and we'll wait 'til you are all finally asleep, and then we will yell in a Jamaican accent and put a thermometer in your baby's butt. Hope you brought a bag for that!"

Happy- I have been bonding with my son. I have gotten to know him and care for him and he has gotten to know me. We take turns telling each other our secret hopes and dreams and let me tell you, this kid is going places. We are really very fond of each other.

Crappy- seeing miss N. struggle over the decision to pick him up or not, knowing that if she does she will have to put him back down.

Happy- seeing N. laugh and joke and relax into herself with us. I could only have dreamed that we would develop a relationship like this, playful and close, and sisterly. I am as wild about her as I him.

Crappy- this has, hands down, been the worst food experience of my life... And I grew up eating Spam on camping trips. I would kill for a can of Spam right now. Spoiler alert: The picture below is NOT furniture stuffing, but is a stack of rock hard, petrified waffles.

Happy- we will be leaving tomorrow with no major health concerns. After all this, he is in perfect condition! Okay, he may have one bum ear... but even that isn't decided. We have to retest his hearing when we return home.

Crappy- even though he is discharged, he is still just a little pumpkin baby and the doctors recommend we not fly with him until he is a little older. Two weeks would be the absolute minimum... So we are looking at early next week, or later.

Happy- he has a clean bill of health. So i can't complain!

Crappy- but if I were to complain I would say that I have been finding myself feeling very sad about the way some of this transpired, mostly as it relates to the kids. I had no idea we would be adopting a baby in February... so I thought nothing of taking a trip to Portland in January. Looking back, I realize that I missed the last days of normalcy with my family as I know it. I am overjoyed to have my family now complete, but I am sad that the last days with my family of six were spent separately, first because I had traveled, then because I ended up at the hospital lock-in. Not the end of the world, but it's a little crappy.

Happy: I have felt so lifted up by all the prayers and support. Baby boy is making a remarkable recovery and I am so pleased to say that he is joining our family.

Crappy: there is still this 30 day window of time left where N. can revoke her consent if she should choose to. I do not foresee this as a big likelihood, but crazier things have happened to better people than us. It makes it very challenging... Do we post pictures? Send birth announcements? The reality is that I can't keep calling him baby boy for 30 days, but adoption etiquette suggests you hold off on the big announcements until it is official.

So, there you have it. A few of my highs and lows to date. But as I lay here snuggled up with this babe of my heart, finally able to call him my own... I can't feel anything other than supremely blessed by a God who loves adoption, and led by example when He chose to adopt you and I into His own forever family.

February 6, 2013

Surrender & Soul Food

When a child is placed for adoption, his biological parents must sign a series of documents giving consent for another couple to parent their child. The documents basically confirm that they are choosing to transfer or relinquish their parental rights. The papers, in the adoption community, are typically known as "surrenders."

Yesterday, was a day of surrender for us all. Miss N. had to sort through a lot of grief and emotion in order to process this decision. Ultimately, she chose to surrender. We have had to sort through a lot of fear and worry, and have been holding our breath and waiting for a definitive yes or no, and finally, we were able to surrender all that and fell into the bittersweet relief of placement day.

We met in Harlem, Tom, the kids, my mom and his parents all came together, and I met them there because I was coming from the hospital in the Bronx. We signed all the paperwork and went into a conference room where Miss N. and her boyfriend met our whole family for the first time.

After such an emotional morning for N. we were surprised to find that while he was pretty quiet, the mood was relatively light. She enjoyed seeing the kids, and really got a kick out of London.

Perhaps this was because she was the only one who did not heed my pep talk beforehand about being sensitive to how Aunt N. might be feeling. That speech went in one ear and out the other for London, and she was just as bossy and insensitive as ever. I couldn't help but cringe when she shout-asked N. across the table "Wayuh's yoy baby!?" Only by the grace of God himself did N. seem to find her endearing in the moment.

After the placement ceremony we all went out to eat at Sylvia's in Harlem. It was so special to go through this whole experience together - the beautiful, the gritty, the painful... and then walk away and eat together as a family, Aunt N. included. A lot of people can say that they have eaten soul food with their baby mama, but very few people mean it the way I do. I felt completely blessed in that moment, it was food for the soul indeed.

February 4, 2013

Stuck on the Details

These past six days have delivered blow after blow, and I am afraid that this little guy has gotten the worst of it. We got the disappointing news yesterday that he will need switch to the 14 day antibiotic treatment. What started as seven days became ten, and now, we are up to fourteen days.

The emotional ups and down have kept me pretty preoccupied from the logistics of what is going on. Tom, on the other hand has stayed very much focused on the logistics. (My thinking: Nothing is more important at this time than being here to focus on the adoption. Tom's thinking: There WON'T be an adoption if he has no job, and therefore, no house.)

Details, details...

Until now. Now, we are at a point where I can no longer ignore the logistics. The reality of the "details" is that Tom only has one more vacation day off of work (we used a lot of his time off in October when we traveled out for the other possible adoption.) The girls have missed more than enough school and they are all having a hard time understanding why kids under ten are not allowed to visit the NICU.

They met the baby yesterday for the first time, very briefly, after an emotional appeal to the day nurse. It was a shock to see how many "five kids" really looks like. But, it was such a relief to have all my babies in one place for the first time.

This poor baby boy just continues to have new medical issues arise daily. It is very hard because on top of the legal and emotional piece with the actual adoption, and the logistical issues with Tom's vacation time being up and the kids getting back to school... We have this thick, underlying layer of the baby's health. Even if all the other layers are peeled back, we still need to be here another ten days at the minimum.

They are now concerned with his kidney function. His hearing seems fine to me, so I think that concern can be checked off. They are still treating the infection and the main focus is his eyes and kidneys now.

We just received news that the we got the required signature to take care of the legal matter of the birthfather. Tomorrow, N. is scheduled to meet with a legal team to sign surrenders and at that point we will do a special placement ceremony where she will finally meet all of our kids. Marlie in particular has most wanted to meet miss N. or Aunt N---- as they will call her.

Tom picked up N. and is on his way to the hospital now. This will be the first time she has seen the baby since she was discharged, as she felt that having less contact with him would be best for her to start processing it all. We will have a brief reunion together and then the social worker will me to discuss all the plans.

I expect these next few days to be beyond emotional. Between tests and test results, signing papers, meeting our family, the placement ceremony, then sending my family home without me so I can stay at the NICU.... I expect to cry and swell up to the point that I am unrecognizable. (This has happened before and, trust me, it's terribly unattractive.)

If all goes according to plan, Tom, Annalee and Marlie are going home on Tuesday to return to regular schedule of work and school. My mom will take the Harper and London to Michigan, where my sister (Kristin) will watch them and they can get back to their regular schedule of bossing each other and peeing the bed. My other sister (BethAnn) is flying to NYC on Thursday to be with me here, so I can have occasional breaks from the NICU.

I know this post is not deep or flowery, but logistics never are. I want to thank so many of you who have offered support, encouragement and prayers. I wish I had time to update people individually... But there is simply no time. Reception is spotty and texts am pictures seem to only go through to iPhones.

Regarding the name and pictures so many have requested, we are just waiting until thing are a little more official, just to be respectful. I promise, nobody wants to pump you with pictures of his sweet face more than me!

Thanks again to all of you who have lifted our family in your prayers. Please keep them coming. Having faith the the Lord's will will be done here is really all we have going for us here.

February 2, 2013

Feeling For Him

Day 4:

I am lying on a cot with a baby on my chest.

I feel like I have been in labor for four days straight, and I have finally given birth. I am tired and sore and drained emotionally... And I think I am finally holding my son.

Today was day four. We got to the hospital and spent time with N. and visited the baby in the NICU. We met another family member, which was very intimidating because he was a totally bad mamma jamma and is notoriously protective of miss N. I think we ended up winning him over though, because by the end he was insisting that Tom come to his house to watch the Super Bowl with him and his friends. This might be a word for word description of Tom's worst anxiety nightmare, but I think that is the seal of approval we were all hoping for.

The hospital had baby boy transferred to a different NICU because of over crowding. It felt nerve wracking to see them transport his incubator by ambulance... but I was able to go with him, and they were transporting lower risk babies, so I felt really reassured that he was able to travel.

Before he was transferred one of the NICU nurses was asking me about adoption and my family. A few minutes in to the conversation we made the connection that she was working at the same hospital in New Jersey where Harper was after he was born. There is no way of knowing whether or not she ever cared for him, but it was really neat that these two brothers may have had the same nurse.

The ambulance took us to the new hospital and N. arrived shortly after. We both knew that this was going to be a really hard night, her first night apart from him. It felt so unfair that the baby got sent to the NICU and she was sort of robbed of the time that she should have had with him in her room.

The new hospital was loud, chaotic and in pretty rough shape, but the good part was that the babe had his own private room and one of his mommies is allowed to stay over night with him while he is here.

N. graciously insisted that I be the one to stay overnight, which was the first mom thing I have been able to do. It was very bittersweet knowing that I would be stepping in as mama, probably for the rest of his life.

Passing the torch, so to speak, was another one of those beautiful, sweet, heart wrenching moments that I will never forget, I will always be thankful for, and never want to experience again.

I keep trying to imagine watching another woman hold the baby I built from scratch and carried for the better part of a year, knowing she will get to experience all of the snuggles, and the kisses and the triumphs in my child's life. I try to imagine how I would feel as I sit and watch this just days after my belly had been sliced open, my skin stretched beyond repair, my body forever marred.

I can imagine all the things I might feel: envy, bitterness, sorrow, grief, relief, regret, worry... I don't know if I could smile through my tears and also have the courage and grace to show genuine joy as well as sorrow. I don't know if I could muster it. But, she did. Miss N. This girl who I have come to love as my own rubbed her nose against his and gave him to me.

Day 5:

I spent my first night as an almost-mother of five with this sweet little guy snuggled up to my side. He is such a little fighter.

The pediatrician said that he has to be here at least five more days. We still have no idea what has caused the infection, but he is also not passing his hearing test in one side, and is having some complication with his eyes. I really believe that all of these things are going to be perfectly fine, but I will be very relieved when they just ARE fine.

We have spent the last 24 hours just getting acquainted; our smells, our voices, our touch are all unfamiliar to this baby who will eventually come to know those smells, feelings and sounds as the most familiar things in the world.

There is a strange span of time from when a baby that might be yours is born until the moment somebody officially says he is yours. I am in that span of time now, and I keep catching myself closing my eyes and feeling for him. Not with my hands, but with my heart. I don't even mean to, but it's like my deep subconscious knows I am starting to feel maternal love for something my biology isn't registering as my offspring.

I keep catching myself touching base with my heart, as if I am asking it "do you feel like his mama yet?" I think that in some way I am trying to reassure myself that once I feel like his, than he will really be mine and I can finally breath.

Just saying that feels so selfish in the midst if everything N. has gone through. Because as hard as it is to exist in this in between time where anything could happen, my biggest problem is whether or not I feel enough like a mommy for this baby that I will likely get to keep.

That, my friends, is nothing compared to the one who is closing her eyes and feels nothing BUT him.

And so, my prayer for us all is that when we close our eyes, on purpose or just as a reflex... And we touch base with our hearts, I pray that we find them open and full. And I would pray that when this baby's moms are wondering if they did right or are doing enough, that we can feel him, our son, and he can feel us. But I long for the day when miss N and I touch base with our hearts and, more than anything else, we can feel Him, our God, and are sustained by the grace and peace His promises bring.