God places the lonely in families...: Aliyah's Story

Adopting Aliyah - Part 1

I am sorry that I have been silent for so long. I must admit that Thursday, June 24th was not the exciting, joyous occasion that we expected but rather one fraught with shock, confusion, fear, sorrow, anger, and a plethora of other emotions. First, let me start by telling you a few more details about the things we learned during the week leading up to that day. As you know, we were supposed to have our final meeting in order to be an official “waiting family” with the head of the agency, Doris, on June 22nd. I had been keeping an eye on our agency’s blog and on Monday, June 14th, I noticed a posting about two babies who potentially had special needs. Our agency was seeking adoptive families for them. Well, just to let you know, I have wanted “a little black baby” for a very long time (since the mission trip I went on in Jamaica during college). When I saw that one of the girls was African American, my heart gave a little jump. The post said that she likely had Cerebral Palsy but to call for more information. I figured that it wouldn’t hurt to call and ask questions, so I first paged Randy at work and then called and spoke with Gretchen, Doris’ right-hand person who works very closely with the birthparents who are interested in placing their children for adoption (usually immediately after birth). Gretchen told me that she had worked with this birthmother when she was still pregnant and that the birthmother was interested in pursuing adoption for her unborn child at that time. Due to family support/pressure, she chose to parent her child. The birthmother made contact with the agency again about 3 weeks prior to June 14th seeking to place her daughter for adoption. I was told that she was in the military and might be sent out in the next several months. She just really felt that the best thing for her daughter was to place her in a stable, loving two-parent family. I was told that this 5-month old could smile, laugh, roll over, reach for toys, had good head control, liked laying in a bouncer seat, liked to lay under a play gym on the floor, was a little bit small for her age, slept in a crib, hated baths, and couldn’t sit up yet since her tummy muscles were stronger than her back muscles. I was also told that she had a G-tube but that it wasn’t used. She was completely bottle fed and received a muscle relaxing medication in her bottle once a day. Also, Duke University Hospital was the hospital that was guiding her medical care. Randy and I are both aware that there is a wide spectrum of severity when it comes to CP. On one side of the spectrum, there are those who are wheel chair bound whose faces are frozen in a grimace due to muscle spasticity or those who have such low tone that their chins rest on their chests and handkerchiefs help soak up the drool that comes from their mouths. On the other end of the CP spectrum, you might not even know an individual has CP if someone didn’t tell you. Then, you may notice a slight inward turning of their knee or perhaps a slight limp. And then, there are those who are somewhere in between that may have to walk using crutches or a walker or maybe they don’t need any external assistance at all but they have to heave half their body forward in a very jolting way at every step, their speech may be difficult to understand, their hands may be so stiff that they can’t hold a pencil well enough to write their name. Well, based on the information we were given about this little girl, we thought her cerebral palsy sounded very mild. In fact, it sounded like she was right on track developmentally…after all, my kids couldn’t sit reliably until they were nearly 8 months old…and rolling over…my kids could only roll over one way by 5 or 6months. So Randy and I talked about it and prayed about it that evening and felt like we should move forward and see how God would lead. At that time, we also thought there was another family who had expressed interest in this little girl, but it ended up that they were just a possibility that the agency had thought of. In the meantime, we overnighted our photo/profile book to the agency so they could show it to the birthmom. During those long days of waiting, only 5 to be exact, I experienced a painful sinus infection and varying emotions. The sinus infection was actually a blessing in disguise because it kept me in bed a fair amount of time which gave me much time to ponder the situation and talk to God. What started out as excitement and confidence one day turned into agitation and impatience on the next which turned into fear and anxiety on the next. That was the most difficult day by far. Do you know how easy it is to make decisions based on fear? It was during this time that I started second guessing my motives. Was I tricking myself into believing that this baby had no disability just because I wanted to have an African baby in my family? Was I rushing into this and jumping at the opportunity because I was unwilling to wait for God’s best for our family? At this same time, both Randy’s parents and my parents were also expressing much concern about all the “what ifs” that may or may not happen. Naturally, as our parents, they want to spare us from experiencing difficulty and trials in our lives. From their perspective, we were running into it with arms wide open. Neither of our parents wanted this for us. All of this was clouding my mind and causing me to doubt. My prayer changed from “God, I am willing to be used by You in this way if it is Your will.” to “God, I don’t want this baby for our family unless that is Your best plan for us. Please, please don’t place her in our family unless You want her with us. I don’t want this unless You do.” I asked Randy, “Honey, could you love a teenage girl who can’t speak well and who has to heave half her body forwards every time she takes a step?” He said, “Of course! She’d be mine!” Randy also told me that we needed to be able to understand and accept that she may end up being wheelchair bound and significantly disabled. I wasn’t particularly comfortable hearing that and was not ready to “sign up” for such a thing. Under the circumstances, it seemed extremely unlikely anyway. But would I accept a child like that? Was it even wise to expose ourselves, our family to such a high risk situation? But there are no guarantees. Not for us, not for our biological children, not for our adopted children. We can seemingly make all the right choices and do all the right things…I am thinking of our son, Nathan, right now. I was very careful about what I ate and drank, I had the perfect birthplan, and all these ideals. We ended up with years of health and dietary challenges. It was a frustrating, overwhelming, excruciating trial in our lives. We held on to God’s promises during the bleak times and clung to the knowledge that He is faithful and that He will carry us through the trial and bring us safely out of it in His time…but all this to say that ultimately God gets to call the shots. Our well laid plans mean nothing. Are we willing to submit to His plans for us? As I was thinking through this situation, I realized that if it weren’t for my relationship with God, I would run in the opposite direction as fast as I could. But my relationship with God changes EVERYTHING. I tried to imagine myself in the presence of God at the end of my life trying to explain why I chose not to move forward and let God work as He willed. I realized that everything I would have to tell Him would be based on fear and not on trust. Is my faith real? Am I willing to make myself vulnerable to my Lord? Am I willing to be available to whatever He calls me to for the glory of His name? Do I believe ALL of His promises including the ones that say we will experience persecution, trials, and difficulties in our lives if we are truly living our lives for Christ? Do I trust Him to make the right choice for our family? So with many prayers and tears, I chose to rest in Him, trust Him, let Him lead, and follow obediently. The next day, I felt very calm and peaceful. My mom actually called me that morning and told me that she understood that I was approaching this ministry of adoption as a way of growing my faith. She committed to praying for God’s Will to be clear in this situation. On the following day, Sunday, I awoke with a strong desire to sing praises and worship our good God. On Monday, I called the agency to make sure that we still needed to meet for that “final meeting” on Tuesday. Gretchen wasn’t available, so I spoke with Doris. Apparently, she and Gretchen were planning to be in F. on Tuesday morning to get the birthfather to sign the papers relinquishing his parental rights. She was wondering if we would be willing to meet her in F. for the final meeting. Instead of discussing the typical things during the meeting, we would be discussing the specific case of the little girl. Oh, and by the way would we be willing to meet the birth mother on that day too, if that can be arranged? “Uhhh…sure…yeah…that would be great.” Suddenly, things seemed to be moving very fast! After that phone conversation, I had that same feeling that I got when my water broke with my first child...that feeling that things are moving forward in a way that is somewhat out of my control, that this is all happening very quickly, and that life as I know it is about to change drastically. It was 9:00PM when we received Doris' phone call. We had by noon the following day to come up with two lists of questions…one for our meeting with Doris and one for the potential meeting with the birthmother. Oh, and don’t forget, we also had to board the dog, take the children down to the grandparents’ house, and drive down to F. Hmm…yeah…a little crazy!

Adopting Aliyah - Part 2

One thing I forgot to mention is that Randy was leaving for a 10-day mission’s trip to Moldova on Friday, June 25th. (Moldova lies between Romania and the Ukraine.) This was to be a first-time mission’s experience for Randy. We learned about this opportunity for Randy to be involved in a martial arts camp ministry within days of our decision to pursue adoption and get going on the paperwork. At the time, I felt a little frustrated that this trip was distracting Randy and would possibly take time and money away from the adoption. I thought it was a great opportunity for him, but wasn’t very pleased about the timing of it. As our story progresses, you will see how God used this trip for Aliyah’s adoption. It became an integral part of our story.

We arrived in F. at noon on Tuesday with our lists of questions in hand. First, we met with Doris. Gretchen joined us briefly to provide more information about the case. She had recently received Aliyah’s medical records from Duke (500 pages) and proceeded to read to us bits and pieces of the first documents detailing Aliyah’s birth experience and some of her stay in the NICU. We could not review the documents on our own because this was to be a closed adoption. All of the last names of the birth family on all 500 pages would have to be marked out. There had been no time for this to be done. What we learned was that Aliyah experienced Hypoxic Ischemic Encephalopathy during her birth: Damage to cells in the central nervous system (the brain and spinal cord) from inadequate oxygen. This was the reason that she likely had CP. We also learned that she was in the NICU for a month before going home with her birthmother. The reason for her NICU stay was somewhat unclear, but seemed related to difficulty with sucking and feeding issues. There were statements made that alluded to a situation where the birthmother was somewhat distant and not very involved in Aliyah’s care. Gretchen had seen Aliyah perhaps 3 or 4 weeks prior to this and had noticed that there didn’t seem to be an emotional connection between her and her mother…a lack of bonding and attachment. Under the circumstances, it seemed like the sooner Aliyah was placed into a nurturing, stimulating environment the better. While Randy and I continued our conversation with Doris, Gretchen went to meet the birthmother at a coffee shop to show her our profile book. Doris expressed earlier that she wanted to approach this case carefully due to the special needs of the baby. She wanted to make sure that the baby's medical situation was fully understood before an adoptive family made that "Yes" decision. We learned that there had been no prenatal exposure to drugs, alcohol, or tobacco while in the womb. We talked about issues related to having a trans-racial family. We talked about the feelings of our extended family and our church family in regards to accepting an African-American and special needs child. We also talked about our level of preparedness for a special needs child. In regards to receiving detailed information about Aliyah, the general consensus was that we would find out whatever we needed/wanted to know directly from the birthmother herself. I asked about seeing Aliyah, but was discouraged from ruining that surprising and exciting moment of meeting our daughter for the first time…if she was to be our daughter.

Aliyah’s birthmother wanted to meet us after seeing our profile album, so she and Gretchen joined Doris, Randy, and me at the hotel. The meeting was definitely awkward, but surprisingly pleasant under the circumstances. Doris and Gretchen did a great job at keeping the conversation going and inserting comic relief at the appropriate times. Randy and I were definitely nervous, but I think the birthmother was about 10 times more nervous than we were. She was a cute, young girl. I liked her! I was very happy to meet her. I wanted to get to know her a little bit, get a feel for her interests and talents…whatever information I could gather to share with Aliyah when she was older. I knew it would be important to her some day. The birthmother’s name was Val. I liked that because that is what I call my sister. I found out later that Val has a sister that is 3 years older than her, as is mine, whose middle name is Lynette. My guess is that when she saw my name on our profile album, maybe she felt good about the family name connection, too. We were told that the things that appealed to her from our profile album were our interest in hiking, outdoor fun, acreage for the kids to play on, and our enjoyment of playing card games as a family. Based on our questions for the birthmother, this is what we learned about Aliyah. Her birth name was Aniyah. (Notice that it is only one letter different from the name that we had chosen for our future adopted daughter a few months prior. Aniyah is a Hebrew name meaning “God answered”. Aliyah is also a Hebrew word that means “to ascend or go up”. The Jewish people use it to refer to the act of Jewish people relocating and returning “home” to Israel. We believe that God heard our daughter’s cries and answered them by bringing her home to us.) Back to what we learned about Aliyah from the birthmother…She likes to cuddle and be held. She eats Enfamil A.R. due to reflux and requires a slow flow nipple. She uses any kind of bottle and has no special blanket. She weighs 14 pounds. Her birthdate is January 1, 2010. She was the first baby born in North Carolina in 2010 and received quite a bit of fanfare. (Randy and I committed to the ministry of adoption by mailing in our Preliminary Application on Dec. 31st, 2009. It arrived at the agency on Jan.2nd, 2010. Aliyah was born at 12:05am on January 1st, 2010.) She smiles, laughs, rolls over, reaches for toys, and has good head control. She does not have any eating difficulties or digestive issues. Her G-tube is supposed to be switched out to a Mic-Key button on June 29th up at Duke. She takes a bottle very well. She likes to be held in a cradle hold for sleeping and tummy-to-tummy in the daytime. She likes the swing, but hates baths and physical therapy exercises. She startles very easily and will cry in a panic, but is easily soothed by picking up and holding. She does not have colic. She likes bright colors, movement, and classical music. She travels well in the car. She doesn’t have sleeping difficulties. Her temperament is pretty mild and easygoing. As long as she is being held, she is happy. She gets a muscle relaxant medication in her bottle once a day. Oh, and she is very stiff. We asked the birthmother about herself, her interests and plans for the future. We also talked a little bit about the birthmother and birthfather’s medical history and learned that there are no allergies or asthma in Aliyah’s family background. Good news! :-) At the end of our meeting, I gave Val a hug and Gretchen walked her out to her car. When Gretchen returned, she said that Val approved of us and it was now time for us to make a decision. We talked together about how the meeting with Val went and whether there were any “red flags” for Randy and me. We felt really good about everything we heard. The only comment that bothered me a little bit was the one about Aliyah being “very stiff”. We all felt like this was probably an exaggeration on the girl’s part because it didn’t fit with all the developmental milestones that Aliyah had mastered. We left the hotel with Doris knowing that we would be calling her with our answer. I was feeling somewhat nervous and hesitant inside…perhaps still a little afraid to make a decision that could change my life and my family in ways I didn’t even know. Randy, on the other hand, felt very confident in saying “Yes”. It was very odd to me that we were switching roles. Randy tends to be more cautious, nervous, and anxious about new experiences. What was going on here? Following Randy’s lead, I picked up the cell phone and called Doris. I told her our answer was “Yes”. She replied, “O.K. When?” I said, “Ideally, before Randy leaves on his mission’s trip.” (This was late Tuesday afternoon.) She asked what time he had to be at the airport on Friday. “Noon at the RDU airport.” She said that Gretchen would talk to the birthmother and see what they could arrange. The birthfather still had not signed the relinquishment papers and that was critical to move things along.

On the following morning, Wednesday, June 23rd, I took the kids to swimming lessons for the first time this summer. I saw a Caucasian lady who had an African boy in a stroller and an Asian girl by her side. Clearly, she was an adoptive mom. She sat next to an African-American lady with a preschool girl with her that had a super-cute hair-do. I just felt strongly that I needed to go talk to them and ask for help…not knowing anything about caring for African hair/skin etc. Both ladies were very kind and helpful. Oh, and guess what…the African-American lady was involved in administration at the Stepping Stones Children’s Developmental Center in our town which is run by the United Cerebral Palsy Foundation. She told me step by step who to contact and in what order to get appropriate developmental screening and services for Aliyah. She also gave me some good information about our insurance company and what we would need to do to get the services that she’ll need. Is this not God just dropping helpful people and information in my lap, affirming our decision, and letting me know that He will take care of the details…that “Yes”, I can trust Him. “Lynette, this is my plan for your family and I will be with you helping you every step of the way. This may be a surprise to you, but it is not a surprise to Me.”

We heard from Doris that day; we would be going back to F. to get our nearly 6-month-old baby girl on the following day, Thursday afternoon. We had to get an infant car seat fast! The agency recommended getting a very supportive car seat that holds babies rear-facing until they’re 30 or 35 pounds because of Aliyah’s muscular condition. A friend recommended that I look on craigslist.com so I wouldn’t have to pay $180 for a new one. On Wednesday morning, I found the car seat we needed with two bases for only $50. I corresponded with the owner several times trying to arrange how I could pick it up that day. I needed to pick up Randy at work at 5:15pm and was hoping to pick the car seat up in the town nearby prior to that. When I told the man the location I would be meeting my husband, he said he was planning to drop off stuff at a recycle center just a few minutes up the road from there that very afternoon and would be happy to meet me there. It may sound like a mere coincidence, but I believe God was being kind to us. Time to get ready was not one of the things we had a lot of and God was so kind to make things quick and easy for us. If I would have had to pick it up at the man’s house, it would have taken an hour and a half of our time instead of 3 minutes. Keep in mind that Randy was preparing to pack and leave for his trip, as well. We returned home that evening after finishing up cornhole boards for the Moldova trip and a home-made Moby Wrap for Aliyah. It was time to pack the diaper bag for Aliyah’s homecoming the following day, June 24th. I was getting excited!

Adopting Aliyah - Part 3

With the car seat and diaper bag in the car, we met Doris at a hotel in F. at 1:00pm on Thursday to fill out paperwork. Gretchen was with the birthmom in another location waiting for the birthfather to come and sign away his rights. They waited for 4 hours for him to show up! Randy and I had finished signing the adoption paperwork and were just sitting and chatting with Doris for over an hour and a half…waiting…not really sure if the adoption was going through after all. The birthfather had to sign or they wouldn’t let it happen. We learned a little bit more about the birthfather during this time. We found out that both of his parents were Jamaican which meant our little baby girl was half Jamaican/half African-American. I couldn’t believe it! I thought that was wonderful! I have a fair amount of Jamaican décor/souvenirs from my mission trip there 15 years ago. So cool! We were told that he finally showed up to sign the documents. Apparently, he had been getting his hair done…dreadlocks or something like that. :-) Gretchen took a picture of him for us, but we haven’t seen it yet.

Gretchen and Diane, who was filling the position of notary, joined Doris, Randy, and me at the hotel and we waited in great anticipation for the birthmom to arrive. I couldn’t wait to see our baby! What would she look like? Would she already have a lot of curly black hair for me to play with? Would it take her long to bond with me? I couldn’t wait to hold her, cuddle with her, and see her smile. When the birthmom arrived, she had her mother and sister with her. I was very happy they had come. I was especially hoping to meet her mother, because we gathered that she had been highly involved in Aliyah’s care. I wanted to have the opportunity to thank her for helping care for our girl over the past 5 months. I knew that it was likely that she was the main person that Aliyah bonded with. If my grandbaby was being placed for adoption, I would definitely want to see the family who was adopting her. The four of them entered the hotel lobby quite a distance from where we were sitting. Val, the birthmom, was holding Aliyah in her arms in a fleece blanket. She wasn’t wrapped up, but I couldn’t see her. As I approached them to get a first peak at my daughter, I noticed that Val’s mom and sister were holding tissues in their hands and looked a bit teary eyed. I smiled and greeted Val as I approached her. When I looked down at my daughter for the first time, I was shocked and scared by what I saw. There was no joy in that moment for me, and that still makes me very sad. She was no bigger than a newborn baby. Her eyes looked huge and disproportionate to the size of her face. I later learned that they were bulging because of dehydration. Her face was ashen, very thin and drawn, not the little chubby cheeks you would expect on a 6-month old. She was wearing a short sleeved shirt and footed knit pants. Val handed her over to me. Aliyah’s whole body was as stiff as a board… and that is no exaggeration. Her legs were like two little toothpicks sticking straight out, immovable. Her hips did not flex and her back was rigid. I couldn’t even pull her in to my body to cuddle with her because she was so stiff. Her eyes were wide open and looking around, though they seemed kind of glazed over and didn’t track very well. The rest of her tiny body was frozen. Only her eyes moved. As I walked towards Randy to show her to him, I felt like I was in a daze. I was smiling on the outside because that is what newly adoptive parents are supposed to do, but on the inside I felt a cross between numbness and panic. Somewhere in the blur of my mind, I was thinking that she can’t possibly weigh 14 pounds. All that we had been told and the little person that I was holding in my arms did not add up. I knew that something was desperately wrong, but I couldn’t wrap my mind around it. As I sat next to Randy, everyone else pulled up a seat into a circle. I was holding Aliyah on my lap with her head cradled in my two hands so Randy and I could get a good look at her. I knew I was expected to say something. I just stared at her thinking, “I’ve got to find something about her to compliment…something…look hard Lynette…look!” The first thing I noticed was her eyelashes. They were long and curled up beautifully. So, I mentioned that out loud. “She has pretty, curly eyelashes.” I knew that Aliyah’s family was waiting to hear reassurances that we would accept this little girl, especially since she was somewhat of an embarrassment to their own family. I looked again. Oh, her hair. I felt it. It was soft and kinky curly. She had quite a lot of it. “I like her hair. This is going to be fun to play with.” I said to myself, “What else, Lynette, what else?” Her lips. “She has the cutest little lips.” During this agonizing process, Randy noticed that her eyes had locked onto his face and she completely captured his heart from that moment. He asked to hold her, so I transferred her to his arms. As Gretchen and the others were talking together, Doris came up behind me and quietly asked me if Aliyah was what I expected. I said, “No.” Then she asked if it was worse than I expected. In all honesty, I said, “Yes.”

The birthmother left briefly and came back with a tote filled with items that would go home with Aliyah. She pulled out plastic baggies filled with various medicines. She also pulled out a couple of large jars of medicine. She mentioned that one was the muscle relaxant (Baclofen). I asked to see it and commented on how large the bottle was. She mentioned that it was really expensive and not easy to get a hold of. The instructions on the front of the bottle were very complicated, but I gathered enough to realize that Aliyah needed it 3 times a day…not just once a day…I remember that thought being a little overwhelming at the moment. The true situation was slowly unfolding. I asked when she had received her last dosage and was told it was at 2:00pm. The birthmother then showed me a notebook of information from the NICU at Duke Hospital, some information about an early intervention program that was just about to start physical therapy with Aliyah on a weekly basis, and a pamphlet of exercises to do with Aliyah at every other diaper change. While Randy was holding Aliyah, the birthmother and her family commented on how calm Aliyah was. Apparently, regular fussing was quite typical. They also showed surprise at how relaxed her arms seemed to be. Her arms were bent at the elbows with her hands fisted. There was a slight gap between her upper arms and torso which they found to be pretty remarkable. The birthmother mentioned that she would put a washcloth under Aliyah’s arm and thread the end of it through the handle on Aliyah’s pacifier to keep it in her mouth so she would sleep longer. She held her upper arms so tightly to her side that the washcloth would easily stay in place. The family also laughingly mentioned that the birthmother would scold them if they didn’t tiptoe around the house or even if they needed to sneeze in an effort to keep Aliyah from waking up. They said that she slept most of the time, also mentioning that she loved to eat and was very greedy. After the chitchat, it was picture time. Pictures were taken of Randy and me with the birthmother and also with the birthmother’s mom and sister. There was a lot of smiling for the camera. It was time for the birth family to leave. As they were getting up and heading toward the door, I approached them while holding Aliyah. The grandma and aunt were starting to tear up again and I noticed that Val was starting to tear up as well. This was the first time I had seen tears from her. I felt myself choking up a little at this moment…feeling their struggle. I asked her if she would like to hold Aliyah before she left and she kind of half turned away from me with somewhat of a grimace and shook her head. I said, “Well, we’ll both give you a hug then.” And I gave her a squeeze with Aliyah in my arms. I think she said, “Thank you.” It was all kind of a blur. I gave hugs, with Aliyah, to the grandma and aunt, as well. I specifically told the grandma that I was thankful for her help in caring for Aliyah during those 5 months. She quietly expressed her gratitude and confidence in our willingness and ability to care for her. After they exited the building, Randy left to pull the van up the sidewalk. Gretchen had to verify that we had a car seat and that it was installed accurately. While we were waiting outside, Doris mentioned that Diane, the notary, was also a nurse and we could call her with any questions that we might have. Gretchen and Diane were very smiley and optimistic, but Doris looked quite concerned and said to call her the next day. Randy told me later that she had pulled him aside at the hotel and said, “Call me tomorrow and we will talk.” Well, Randy did an awesome job at putting that car seat in and cranking it down, so we just needed to get the baby in it and we could go pick up the kids from Nana’s house and head towards home. Putting Aliyah in the car seat proved to be quite difficult. Her tiny body was so stiff; she could hardly be bent at the hips. I was struggling with it, not wanting to hurt Aliyah, so Gretchen took over and managed to get her in. Her bottom didn’t even come close to nestling in the seat because of her rigidity. There was quite a gap, but she was buckled in. We thanked the three ladies from the agency for their help and I took my place in the middle seat next to Aliyah for the drive home. As Randy started driving, the first thing I did was ask Randy for the cell phone. He asked who I was calling. I said that I had to call Kristin. She is a dear friend from church. She and her husband had been walking through this whole adoption process both Randy and me. We went to the adoption information meeting together back in December, chose the same agency, and had been going through every step of the process together. Kristin has been a constant encouragement to me during this time. When doubt or worry or fears threaten to distract me from the journey God has laid out for me, she is always there to remind me of the truths of God’s Word. What is God’s character like, what are His promises, what is the Truth, and will I believe it…will I hold on to those truths and continue following Him in obedience to what He has called me to do? We had actually seen Kristin and Davin at the hotel that very afternoon, only three hours prior. They were just leaving from a meeting with Doris that would make them an official waiting adoptive couple. We said a quick Hi-Bye to them in the parking lot with an excited hug and went in to meet with Doris ourselves…now I was calling three hours later with the news…As I started sharing with her about our new daughter, as I started verbalizing my thoughts and feelings, the shock began to turn into panic. The tears started to flow, sobs overcame me in waves, and it would not stop.

Adopting Aliyah - Part 4

It is kind of odd what the mind chooses to focus on as an area of major concern when something traumatic happens. My main thought was, “What are we going to do? We can’t show her to our parents…they are going to freak out if they see her. Maybe if we just keep her in her car seat with the blanket pulled up to her neck…then they might not really notice yet. What are we going to do? What are we going to do???” Randy was concerned about what we were going to tell the kids when we picked them up because I couldn’t stop crying. We decided to tell them that I was very sad because the baby had not been fed very well. When we arrived at Randy’s parents’ house to pick them up, I stayed out in the van with Aliyah while Randy went in the house to talk to his parents and get the kids. As our three kids came bounding out of the house to meet their new sister, I was able to smile and enjoy the moment. Randy’s parents wouldn’t come out and see her because of the adoption agencies rule that only immediate family could be around her for the first 10 days. This is the time frame in which a birthmother can change her mind about placing her child for adoption in North Carolina.

"Mommy, she's so pretty!"

I took a picture of Aliyah in her car seat with Hannah beaming next to her and took the camera in the house to show Randy’s parents. With all 6 of us in the van for the first time, we headed home where we would have one evening together as a family before Randy left for his mission’s trip on the following day.

The first thing I did when we got home was to make up a bottle for Aliyah and sit on the rocking chair to feed her. I was very pleasantly surprised to see how vigorous an eater she was. She was so intent on getting that milk in her stomach that she was gulping a lot of air with the milk for the first ounce and a half of her feeding. She downed the 4 ounce bottle quickly. It was difficult to burp her because she couldn’t bend; in fact, she would arch her whole hold body in protest because she was so desperate to have the milk flowing in her mouth. Her g-tube also made it rather awkward, but I finally managed it.

Proud brother and sister oblivious to her condition

So it was time to change her diaper for the first time. When I took off her footed pants, I was horrified by what I saw. Her legs were so thin, there were deep folds of skin on her legs above her knees. The deepest of the folds were dirty and lined with dry skin. She looked to me like one of those starved children from a third world country. When I took off her size 1 diaper, which was much too large for her, it was even worse. What should have been a filled out bottom was just folds of skin. It was difficult to figure out which fold was the crack of her bottom. Her bottom and upper thighs were very red and raw with skin deterioration from a diaper rash. There was a lot of old diaper cream stuck to her skin that had to be soaked off. She was just an emaciated, rigid little thing with a very distended belly. My alarm continued to grow. The birthmother had mentioned something about doing physical therapy exercises with Aliyah during every other diaper change. So I pulled out the pamphlet of exercises that Duke had recommended. I couldn’t even begin to do any of them. Her legs would not bend at the knees at all, not even a millimeter. I couldn’t believe it. Then I tried to pry open her fingers. It was very difficult and I couldn’t open her index fingers at all. There was a lot of lint and old skin between and under her fingers and one of her finger nails on each hand was partially growing into the skin on her palms. It was clear that she had not been receiving her physical therapy for quite some time. I gave up because I was afraid to hurt her. Next, I decided to get an estimate of her weight by using our home scale. It indicated that she was no more than 8 pounds. This was a far cry from the 14 pounds we had been told.

Aliyah's NICU pic from January

Hannah was busy looking through the tote to see what cute baby stuff came with Aliyah. She found what appeared to be a ziplock baggie of keepsake items from Aliyah’s birth and NICU stay at Duke. In it were two face shots taken during her one month stay in the NICU. She looked very healthy with some nice baby fat on her. This scared me even more. The picture was becoming clearer, and I could not bear the truth of it…neglect…starvation…it was too much to wrap my mind around. My mom called, eager to hear about our new baby. As I held Aliyah, her head arched way back with her back almost in a u-shape and her legs hyper-extended, I told my mom about her with anguish and desperation in my voice. She wondered if we had an “out”. I did not know but said that Doris seemed upset about the situation and wanted to talk with us the following day. I had no idea what she would say. Then, I had to call my friend, Lea, to call off her visit to our house on the following day. I sobbed my way through that conversation. Randy was very calm and supportive and he just held onto me tightly and let me cry my heart out. He had brought some yummy take-out home, but I was too sick with grief to eat it.

Me feeling perplexed by the meds

We were given many different kinds of medicines for her but really had no idea what she needed and when. However, we did know that she needed the Baclofen (muscle relaxant). The notary/nurse had told us that Baclofen has to be slowly ramped up; you can’t suddenly start or stop it. We had been told initially that she was given the medicine once a day, but the directions on the bottle said three times a day. We had no idea how much the birthmother had truly been giving her, so Randy called the Duke pharmacy where the prescription had been filled and ended up being transferred to the NICU. He spoke with a nurse who had cared for her when she was in the NICU back in January. The nurse expressed concern and recommended that we NOT give her any Baclofen that evening and that we take her to a pediatrician the following day for a check-up and direction on dosing.

Getting to know each other skin to skin

I was so distraught about the situation, that I called Doris, the head of our adoption agency, at 10:00 that night. As I cried, I told her about how much Aliyah really weighed and what I noticed about her condition. I told her that I didn’t understand how this could have happened. I told her that I was scared for Aliyah and that I was scared for our family. I told her that I didn’t know what to do. She was very calm and sympathetic and said that she would call Gretchen right away and find out what was going on. Randy spoke with Doris a little later and was told that we could choose to place her back with the birthmother or place her in foster care. First of all, returning her to her birthmother was out of the question in my mind and I believe the agency quickly came to the same conclusion. I believed that would be a death sentence for this poor baby girl. As far as foster care was concerned, I can’t tell you why, and I feel guilty about it now, but I felt a sense of relief just knowing that I wasn’t “stuck”. We had options. We could change our minds if we felt that was best. Randy felt that we should go ahead and see the pediatrician the following morning and then see how the weekend went. We would re-evaluate on Monday.

Randy cuddling with Aliyah

The plan for the following day was that my friend Kristin would come early in the morning. We got permission from the agency to have her be my house helper during the 10 days that Randy was in Moldova. Interestingly, Kristin had a contract job that unexpectedly let her go one week prior to our adoption of Aliyah. This freed her up to be able to help us in our time of need. I was very thankful to God for this provision. Randy would go shopping in the morning to buy some much needed baby supplies. Then, Kristin could go with me to take Aliyah to the pediatrician. In the meantime, Randy would pack like crazy for his trip to Moldova with the help of the other 3 children. Randy would need to leave around noon to go to the airport. My dad would come and watch the kids until Kristin and I arrived home from the doctor with the baby. Then, my dad would take Micah to stay at their house for three days, and Randy’s parents would come and pick up Nathan to stay at their house for three days. Kristin, Hannah, Aliyah, and I would stay at the house together during those initial few days of adjustment. Then, the boys would join us. I was disappointed to learn earlier that week that Randy would not be able to get any extra time off after his trip. I was hoping that he could take paternity leave for a couple of weeks so he could have an opportunity to bond with the baby and also help out at home, but they said they couldn’t spare him. Oh, you should also know that at this time Randy was asking me frequently whether I wanted him to back out of the mission’s trip so he could be with us during this time. I really wanted him to be able to go; this was a wonderful opportunity for him. I just didn’t feel right about telling him not to go. I didn’t want to be the one to make that decision.

Aliyah slept between us in our bed that night. We woke her every 3 hours to eat. She continued to down 4 ounces each time. She did not sleep well waking frequently with severe back arching and snorting. It was odd; she hardly cried at all. When she did, it was a very weak, plaintive, newborn kind of cry that was easily stopped by replacing the pacifier that she came with. That pacifier appeared to be her greatest comfort.

Adopting Aliyah - Part 5

Nathan holding Aliyah

When I woke up the following morning, Friday, June 25th, Randy had already left to get supplies at Walmart. Nathan got to hold his new little sister for the first time while I quickly changed my clothes to go to the doctor. While I waited for Kristin to arrive and Randy to return, I took Aliyah outside in the morning sunshine which seemed to calm her and me as well. We walked over to the pasture and I introduced her to the curious goats. Kristin and Randy arrived soon after. Randy had bought her some newborn-size clothes since the few 0-3 month clothes I had would swim on her tiny body. After changing her into one of her new outfits, Kristin and I left to take her to the pediatrician(PNP). Randy was going to pack for his trip while we were gone and take off to the airport after my dad arrived to watch the other three kids. At the pediatrician’s office, Aliyah weighed in at 7 pounds 14 ounces. It was worse than I thought. I told the PNP that I was very concerned about Aliyah’s condition and that I wanted her to completely remove Aliyah’s clothing and give her a very thorough check up from head to toe. The PNP, who had formerly worked in a NICU, checked her out carefully and after consulting with the head doctor decided that we needed to take her to the pediatric emergency room up at Duke where she had been seen before. As a side note, the PNP expressed to me that we should be able to back out of the adoption because her medical condition was not fully made known to us. I couldn’t think about that right then, I just needed to focus on getting this little girl the medical attention that she needed. Randy had been calling about every 15 minutes to find out what was going on and to give me the opportunity to tell him at any time to turn back and not go on the trip. He was at the airport with his mission’s team getting ready to check his luggage when he heard the news that we were headed to the ER. “Lynette, do you want me to stay?” (pause) “Randy, I can’t answer that for you. I really want you to be able to go.” (pause) “Let me talk to my team lead and I’ll get back to you.” Randy called back a few minutes later to tell me that he was going to get his truck out of the parking lot and that he would meet me at the ER. Now he was giving me another reason to cry…crying because he was missing this wonderful outreach opportunity that was so important to him and that he had been looking forward to for months…crying because he was choosing not to go because he was making our family his main priority. He was choosing to stay by my side when I needed him most. As I drove the hour to Duke Hospital, Kristin was sitting in the back with Aliyah listening to me talk and cry and express my fear and confusion and lack of understanding of how all this could be taking place. I tried to think about placing her in foster care and how that might play out. I just couldn’t get past the effect it would have on my other children. In their minds, she was their little sister. How would I possibly explain giving her back? At the same time, I was struggling with the implications that her medical condition could have on our family…our relationships with our other children, our time, our finances, our future. What was the right decision? God, help me! Please show me what to do! I am so confused. Doctors, nurses, family, and our adoption agency are all saying, “You don’t have to accept this. You can back out. You saved her life. That’s great! Now it is OK to let someone else care for her, because it appears that she is going to be very high maintenance and that is not what you planned on or expected.” My mind was feeling so fuzzy with trauma and emotion at that point. I was having trouble remembering all of those details and moments when God’s guiding hand was so clear to me during the past week…affirming the path I was taking. It felt awkward to call her my daughter and refer to myself as her mother. It really felt like I was caring for someone else’s child. I was afraid to give myself permission to love her and accept her as mine. Truly, at that point, I didn’t know if she would be mine.

When we arrived at the drop off point for the ER, Randy was waiting for us. He took the van and parked it while we went in. I was concerned for Randy thinking about how terribly disappointed he must be about his cancelled trip. However, I could see no outward signs of it. In fact, he was very calm and cheerful being the support I needed him to be.

In the ER

While waiting to be called back for triage, I mentioned something to Randy about what decision we were going to make about keeping her or placing her in foster care. He looked at me with shocked surprise and said, “Of course, we’re keeping her! How can you even talk about not? That makes me want to cry just thinking about it.” His eyes actually teared up as he held that little girl that gazed up at him with such trust. There was such love and compassion in his eyes already. He reminded me of one of the main reasons we were adopting in the first place. Physical adoption is a beautiful picture of our spiritual adoption. Pastor John Piper describes adoption as the “visible gospel” that is proclaimed to a watching world that desperately needs to know the love of the heavenly Father. Many years ago when I had nothing to offer God yet had a desperate need for Him, He chose to adopt me into His family as His daughter. He didn’t just save me from my sin and then say, “Alright, you’re on your own now. Hope you have a good life.” No, He wrapped me in His loving arms and made me a part of His family forever. He has promised to love me, care for me, provide for my every need, and help me live my life. He would never say, “Oh, now wait a minute, you were much worse than I expected. Wow! Look at all your problems. You know, I think I’m going to have to change my mind about accepting you as my child.” Well, there was my answer. It was at that moment in the ER waiting room that I was back on board and clearly knew the direction we were supposed to take. God placed Aliyah in our laps for a good purpose. She was ours, part of our family, and we would not turn away from her.

Adopting Aliyah - Part 6

Once admitted, Aliyah was found to be severely cachectic (physical wasting with loss of weight and muscle mass) and malnourished. She also had bitemporal wasting which is as it sounds, the wasting away of the muscles of both temples. The most prominent symptom is hollowness or sinking observed in the immediate vicinity of the temples. We learned that the full bottle of Baclofen that the birthmother gave us was given to her on May 21st when Aliyah was discharged from a week-long admission due to failure to thrive and “staring spells”. Aliyah weighed nearly two ounces less at this time (June 25th) than she had at discharge over a month earlier. (We learned later that she had also been admitted to a hospital in the birthmother’s hometown for failure to thrive at the end of March/early April.) It is revealing to note that during each of Aliyah’s hospital admissions, she showed the ability to gain weight in the hospital setting. So back to the Baclofen, clearly she had not received any of it for over a month to help with her muscle stiffness. She was supposed to be receiving it 3 times a day.

Drawing blood and getting an IV line started was really rough. I learned that subcutaneous fat helps hold veins in place so they don’t roll all around under the skin. Since Aliyah was greatly lacking in this area, she had to endure many painful sticks before they were successful. At one point, I just had to leave the room and walk the halls whiles trying to regain my composure. It was awful having to watch her go through that. What made it even worse was that she didn’t scream and cry like a typical infant would under the same circumstances. Instead, her whole body became arched and stiff; she’d stare off at the corner of the room and breathe loudly and rapidly with her chest heaving. I just thought, “Cry, baby, cry! You’re supposed to cry, baby girl!”

Upon admission, these were the issues that were noted:

1. Hypoxic Ischemic Enteropathy - (Damage to cells in the central nervous system -the brain and spinal cord- from inadequate oxygen. The damage that was done cannot be reversed, but it is not degenerative either. For Aliyah, this is the cause of Cerebral Palsy which leads to her hypertonia – see below)

2. Inguinal Hernia - (We went to a surgeon in late July and he couldn’t see nor feel the hernia. Yeah!)

3. Staring Spells – (She had an EEG during her admission in May which ruled out seizures as a cause for these staring spells. We have not seen any staring spells since her admission to the hospital. I personally feel that they were a coping mechanism that she had developed due to neglect.)

4. Hypertonia – (She had extreme spasticity with scissoring of her legs. There was spasticity and hypertonicity in her arms and hands and a moderate amount of hypertonicity in her back.)

Spasticity is stiff or rigid muscles with exaggerated and involuntary muscle contractions.

Hypertonicity is extreme muscle tension or stiffness.

The doctors restarted her on Baclofen and we slowly increased it to the full dosage she needed. Between the medicine and regular therapy, her flexibility has greatly increased. She still has quite a bit of stiffness, but with counter pressure she pretty much has full range of motion. No contractures! Yeah! (Contractures are loss of joint motion that can lead to bone deformity.)

5. Severe malnutrition – We feed her a formula mixed to 24 calories per ounce rather than the regular 20 calories per ounce for “catch-up” growth. She also receives G-tube feedings through a feeding pump at night, only as needed. She has been gaining weight quickly and steadily.

6. Oral thrush – After about a month of oral topical treatment with Nystatin and then switching to daily probiotics, we were finally able to conquer this with no re-occurance.

7. Diaper Candidiasis Rash – After about a month of topical treatment with Nystatin and zinc oxide, this has resolved.

8. Constipation – This is often a problem for people with CP because all muscles can be affected. We have managed to get this problem well under control with the daily use of Cod Liver Oil and Magnesium powder added to her bottles.

We were admitted to Duke Children’s Hospital on Friday evening, June 25th and discharged 3 days later on June 28th.

I can’t tell you how thankful I was to be at the hospital with her. It was such a relief. I needed to get a full picture of her medical condition and be taught how to work with her and help her reach her potential…whatever that would be. I really felt like we were in good hands at Duke. And I was glad to meet and work with several nurses, therapists, and doctor’s who had actually worked with her during her NICU stay or during her previous admission for FTT.

As I look back, it almost seems like this was a time of rebirth for Aliyah into our family…a 3-day hospital admission, a time for Randy and I to get to know our new daughter, complete exhaustion from waking up every 3 hours round-the-clock for feeds, learning the care required for a special needs infant, etc. Soon after we were admitted, our thoughtful nurse brought in a piece of paper on which she had handwritten Aliyah’s birth stats as well as a brief run-down of her medical history up to the present. She had looked it up in her file thinking that we would appreciate this information. “Oh, yes! Thank you! Whatever you can tell us…” This was just the beginning of what would be a steep learning curve.

Early the next morning, the neurology team, which consisted of about 10 people (doctors, residents, and medical students) filed into our room. After deliberating, the head doctor decided that it would be a good idea for Randy and I to be present when they discussed, in detail, Aliyah’s medical history, current condition, and assessment of her present needs for treatment and follow-up. I felt like we were being forewarned that what we were about to hear might be difficult for us to take in. We were assured that we could ask questions at the end. So, I pulled out my purple spiral notebook and pen and prepared to write down what I learned.

It was a very odd feeling, sitting on the hospital bed in that room, surrounded by a group of medical personnel, waiting to hear what I was afraid to hear but knew I must. I felt sympathy for the medical student who was required to vocalize those things that were painful to say and painful to listen to. There was an air of professionalism in the room, yet I also felt compassion and concern emanating in our direction, rather than a cold, clinical attitude. Those people cared! There were tears in many eyes and we continued to see this with regularity during our whole hospital stay. Their kindness and concern was a gift to us. It helped to ease the heartache.

So, now you’re saying, “Lynette, get to the point…we’ve been waiting long enough. What is the extent of her brain injury? What will her future look like?”

Aliyah was born at 37 weeks gestation on January 1, 2010 at 12:05am. Her birth weight was 6 lbs. 7 oz. and her height was 19.2 inches. Her Apgar scores were 1, 4, 6, and 7. She was intubated at 4 minutes of life and took her first spontaneous breath at 4.5 minutes. She was transported to Duke Hospital during which her tube came out and she had to be reintubated. During her first month of life, she experienced respiratory problems (resolved), airway swelling (resolved), heart murmur (resolved), presumed meningitis (resolved), hypocalcemia – not enough calcium in the blood (resolved), metabolic acidosis – too much acid in the body fluids (resolved), anemia (resolved), hyponatremia – not enough sodium in the blood (resolved), and PEG (G-tube) placement due to poor sucking and swallowing with evidence of aspiration (improved but not fully resolved).

Aliyah has had two MRI’s done…one on her 4th day of life and the other on her 11th day of life.

MRI – January 4, 2010

Results: Diffuse signal abnormality predominantly involving the cortex and subcortical white matter, and the deep gray structures, diffuse diffusion abnormality. Findings are consistent with widespread hypoxic ischemic injury, with interval increase in edema since recent head CT (Jan. 2nd), with herniation of the cerebellar tonsils to the C1 level. Prominent posterior fossa involvement may represent a combination of pontine perforator ischemia and known meningitis, in combination with generalized cerebral edema.

MRI – January 11, 2010

Results: Persistent but decreased diffuse restricted diffusion abnormality in the periventricular white matter and increased restricted diffusion of the corpus callosum. Interval increasing abnormal T1 hyperintensity seen in the brainstem, basal ganglia, and ventral thalami. These findings may reflect evolution of hypoxic ischemic injury.

Neurologist interpretation of MRI results:

MRI revealed severe bilateral necrosis of cortex, severe injury; very poor prognosis.

The doctor told us that she has severe cerebral palsy. She will most likely be wheelchair bound for the rest of her life…best case scenario would be walking with crutches. Due to the extent of her brain injury, she will most likely be cognitively-impaired. I asked the doctor about her life-expectancy. He said that if I had asked him that question 15 years ago, he would have said about 10 years. But with the advances in medicine that we have now, he said that he is seeing more and more people who are in their 20’s. Gulp! So this is when my chin starts trembling again and the tears start coarsing down my cheeks. The doctor asked if I was OK. “Yes…I’m OK…I just need to mourn for what I thought would be…but will not. It's just going to take some time to adjust my thinking.” That doctor returned to our room on his own two or three times over the next 24 hours just to talk with us, see how we were doing, and to be available for more questions that we may have. Shortly after the meeting with the team, he came to talk with us alone. He acknowledged that we had a long, difficult road ahead with her but that it was important to take time away on occasion and spend time together, just Randy and I, keeping our marriage strong, our team intact and unified. I believe there is wisdom in that.