Thursday, March 11, 2010

Joey is A Busy Boy

Sorry it has been so long since my last update. February was such a super busy month for Joey. I suppose this is because it was his first birthday and everyone needed to check up on him. So this update will really be a detailed accounting of Joey’s progress, doctor’s reports and potential needs for the future. I know that so many of you have been keeping up with him and praying for him and I appreciate that from the bottom of my heart.

As I write this, I am in the waiting room of my specialty OB, waiting to get a check-up on Baby Girl. There are MANY people ahead of me in line so this may be a very long wait but I am hoping it won’t be as I have an appointment with my regular OB in about 2 hours to check for pre-term labor. I am at the point where I have an appointment every 2 weeks now for this purpose. Since the boys were born at 25 weeks, I didn’t quite make it this far along last time so all of this is still new. I was just chatting with another mother to be and we both agreed that at this point in our pregnancy, everything is exhausting. Getting out the car and squeezing between the two cars alone was an interesting picture, one I’m sure people entering the mall parking lot next to the building I’m entering probably found amusing. It’s ok. I feel so ecstatic to be this far along…here at 29 weeks. Everything changes in the third trimester. The survival rate for early birth goes up to 90%. And the complications that my sweet boys had to go through for 5 months in the hospital and Joey will have to endure his entire life decrease dramatically. It amazes me and saddens me at the same time that 4 weeks make such a difference. If only I could have held those boys for 4 more weeks…lots of if’s.

So I will start with Joey’s therapy. He is currently receiving physical therapy, occupational therapy and visual therapy. PT and OT are through ECI and VT is through the school district we live in. I LOVE his developmental specialist (who also does the OT). She seems to also be somewhat therapeutic for me as talking about all of Joey’s issues and growth and development relieve a lot of stress. Joey works very hard for her and I am so proud of him. She teaches me the exercises to complete and we work on this every day as she only sees Joey once a week. She does lots of exercises to help build his arm, trunk and leg strength and although it looks like nothing, it is really hard for a little baby and by the end of it, he is tuckered out! He is now able to prop sit (sitting while using his arms as props) and he can also balance on all fours for a small amount of time. He gets pretty tired though and will slowly trickle down to his belly. We were working on rolling from his side to his back for so long and he has completely mastered that skill and is now flipping over to his back, not every time, but often without help.

He loves to work on his tactile skills and is very good at handling objects, sometimes a little wildly, but he does use his fingers well and holds things tightly without dropping them (unless it’s on purpose). One of his favorite small toys is a small handled trinket that holds 3 small bells. He loves to bang it down hard on his bumbo desk. He also enjoys having his drum on his right side and uses it as a comparison/safety zone to other sounds he makes and textures. He scratches his fingers on it and bangs on it very loudly.

And music. Joey loves music so much. Any toy that plays music is an instant hit. Once a song starts, he freezes and listens intently. Once the song ends, he immediately searches for the button to restart the music. His CD player will instantly relax and soothe him and he gets his most enjoyable moments cuddling while his favorite CD plays. He doesn’t get sleepy or bored…he simply listens with all of his heart. Afterwards, I will put him on his keyboard and he will bang and bang as he realizes that he is in charge of the sounds. I don’t know a lot of songs but he does enjoy when he play and sing “Do, a Deer.”

He also really enjoys Patty Cake and “Yayyyyy” while we clap our hands together. He is very motivated to lift his head when he knows he will get a “Yayyyy”.

We recently saw an outside PT for an evaluation and it was horrific. She obviously had no experience with visually impaired babies plus her personal communication skills were atrocious. I personally didn’t even know her name until I saw her set her badge down to take Joey. Upon our first conversation, she came across very high on herself. She constantly put down the current OT we were seeing, not that she knew this person, just that what she was doing was all wrong. She was extremely condescending but I was calm and decided that I would be patient and see how things went with Joey.

She basically just grabbed him and threw him around. He was screaming and crying and she was overall…an idiot. She obviously has no business with babies or the blind and when I finally began crying out of anger, she assumed it was because I was upset over Joey’s assessment and said that I probably shouldn’t have been there, that most parents wait in the waiting room. Excuse me?!?! He’s a baby..not happening! Thank goodness I was there because at one point, she simply laid him on his side and walked away with no explanation while he screamed. I jumped down and scooped him up and decided she would never touch him again as all she basically did was terrify my sweet angel. Just to give you an inkling of her ignorance, she shook a toy in front of his face…he’s blind. Good grief. I put a call in to the manager of the clinic Friday but haven’t heard back yet. I’m sure they are getting her side of the story first, as expected. From my experience, I’m sure nothing will happen but I will not rest until I say my peace.

His orthopaedic doctor found a vertebrae in his L2 lumbar that was a slightly misshapen, called kyphosis. It can cause problem with the shape of his spine and push into his spinal cord as well as create problems for Joey trying to sit up tall. He ordered an MRI and a follow-up X-ray and as it turns out, his vertebrae are calcifying in just the right place. His misshapen vertebrae is not pushing into his spine at all. What he did find was a little unnerving though and will have to be handled by a neurosurgeon. He discovered that Joey’s spine is actually too long. It’s called a tethered cord and the neurosurgeon will have to evaluate it and decide if he needs an operation. It’s scary because upon researching the issue, we discovered that not operating on it could cause paralysis or extreme developmental problems and operating on it puts a risk to his spine that could also cause paralysis. He has an appointment in April with the neurosurgeon so we will have to trust what the doctor says and go from there.

So as mentioned above, we will see the neurosurgeon for the spinal cord issue. We are hoping that his shunt is still doing its job. At our last appointment six months ago, it was already becoming clogged with brain matter but it wasn’t too bad. Most shunts, if they are working well have to be replaced within the first two years of life so we are expecting this at some point. We wait and watch for symptoms of clogging which include lethargic behavior, vomiting, fever, reddening and swelling of the shunt area. Once this occurs, we were instructed to drive straight to TCH emergency and request neurosurgery. Joey had extreme hydrocephalus , most likely caused by his bilateral grade IV IVH (brain bleed) and the shunt really did its job allowing the brain to grow and expand. The parts of the brain that were damaged can never be repaired but other parts of his brain could take over and learn how to work for the damaged sections.

We met with a neurodevelopmental doctor (through the Meyer Center) who was actually the first doctor to say that he thinks there may not be as much brain damage as originally thought and the issue may be the “white matter”. He described it like a computer. The brain is the computer and your actions are the monitor. The white matter are the cords. This is where Joey’s problem may lie. So we are waiting for this doctor to evaluate his MRI and get back to us. He is a very nice man and I like him very much. He kisses Joey’s hand a lot during his exams and tells him “we love you” over and over.

His helmet is working to repair the flat part of his head. Joey is supposed to wear it 23 hours a day. I only make him wear it at night. He hates it so much and becomes so lethargic that he can barely function and I just couldn’t stand to see my little boy that miserable. Is he manipulating me? Probably. And he wins. The doctor told us that he didn’t really think it would work on Joey but it is! It’s going very slowly but there is improvement so we are looking at about six more months of helmet time.

We thought that Joey was about to be taken off his monitor. This monitor looks for apnea episodes and also records his heart rate. If his heart rate goes below 60 beats per minute for more that 15 seconds, it alerts us. Lately, it has only been going off when the cords get loose, which is quite startling at night and annoying. Joey only wears it at night. For some strange reason though, the memory light had been coming on saying that he was having a lot of episodes. After reviewing his monitor downloads, his doctor saw some Bradycardias which are due to low heart rate. This is something most preemies deal with and outgrow and we thought Joey had overcome this problem. The monitor hadn’t been going off because his heart rate was only dipping down for a few seconds. So, it has been decided that he will stay on the monitor and do a sleep study. We aren’t sure when the sleep study will be but I was told in the next 2-5 months. Geez…

As it turns out, Joey has a paralyzed vocal cord that may not ever repair itself. His voice will always be soft and quiet. The exam to find this out was awful for him but the doctor was the sweetest. I almost asked her if she had a paralyzed vocal cord because she spoke so quietly and soothingly. I really liked how she explained how things would happen instead of just “attacking” Joey (as I like to call it). She put a syringe full of “goo” into each nostril and that had a numbing agent as well as a decongestant. Then we had to wait 10 minutes. Joey was of course very upset so we worked on soothing him during that time. Then she came back in and I held his body while a nurse held his head and she inserted a thin camera tube in through his nostril to watch his vocal cord. He needed to be awake and crying (which I understood) so she could see the movement. The doctor said it would be the longest three minutes of my life but it only ended up taking about 30 seconds, thankfully. Joey was a trooper. She asked if Joey had a PDA ligation at birth (a clip on his heart) and I told her he had. She said that many times this causes the left vocal cord to become paralyzed as they share the same nerve. The good news is that the vocal cord is paralyzed close to midline so surgery may not be necessary but even if we do decide to try surgery, it won’t happen until he is five, maybe ten years old. We see her once a year.

Joey had a horrific eye exam in February. His ophthalmologist is wonderful and has been with Joey from the beginning but these exams are never easy. It started with a ridiculous wait of an hour and a half. Then his eyes were dilated and they said we would have another 30 minute wait. After another hour, I decided we were done. Joey had therapy scheduled that afternoon and sometimes I don’t know who these people are thinking that it’s just ok to make patients (children) wait indefinitely. I was polite and asked the receptionist how much longer it would be as we had a therapy appointment and she began lecturing me, stating that I should have told someone I had another appointment. I stood there for a second, then decided that she was ridiculous. Why would I think that I needed to tell them at check-in that I have another appointment in FIVE hours?!?! So I said that to her and when her response was not favorable, I took a deep breath and just as I was about to unleash my unlovable side, we were called in. All I can say is that she was saved.

The first doctor we saw was a fellow (and this happens a lot at TCH). She began examining his eyes from a distance and then told me that he was near-sighted in his right eye. I looked at her and almost burst out laughing. “Does he need glasses?” I asked. “Oh,” she stuttered, “I mean if he could see, he would be near-sighted”. Good grief. Where do they get these people? She went on to say his left eye was black, there was nothing there. I just wonder if she could have been a little more direct (sarcasm). Of course it is, it’s detached. I then asked what are some possible upcoming procedures for Joey since his right eye muscle will obviously deteriorate? This woman turned around and literally sighed as if I was completely interrupting her and had no right to ask question and then gave me some ridiculous short answer. I was about to lay into her but I knew we only had 30 minutes before we had to leave so I held my tongue. I was feeling very impatient by now.

The doctor came in and was pleasantly surprised to find that we were expecting a baby sister. He’s known Joey (and Eli) for almost a year, since he was hospitalized. He had me hold Joey while he examined his eyes and this went on forever, mostly because he was looking for something specific. Joey was crying and crying and after a while, I began to cry as well. Afterwards, he told me that he thinks Joey may have something going on in his right eye, maybe he can see shadows or some light on the far right side. But we won’t know anything until Joey can tell us. It won’t be vision but if it’s light or shadows, this will help him with traveling. He will be able to tell when he goes outside or a light is turned on. But we have to wait and see.

It’s almost over! Joey has one more shot this month (he gets one every month) and hopefully it will be his last one. We have been homebound since last September and it’s very lonely. Joey likes to be home more than the doctor and to be honest, it’s probably for the best for me too, being pregnant. I still look forward to play dates and get-togethers with friends as I think the socializing will be good for Joey. And I desperately need some friendship.

Even though I believe Joey can hear just fine, it has been suggested by a few doctors to get his hearing tested so we just completed that task. The doctor was wonderful and asked why I thought Joey could hear. So I told her that he wakes up when we make noise, that music calms him down, that he turns to listen when he hears me getting his toys out, things like that. She then looked at me and said, “well yes, those are all clear signs of hearing…so, why are you here?” I laughed and said that several doctors suggested and I was finally beat down. The test was simple and in the end, even though I thought he would fail it, she said he did fine for his age and thinks he can hear out of both ears well. So we will wait and see if his neuro-developmental doctor wants a more extensive sedated test but for now, we are good.

Physical Medicine& Rehab – this is a clinic at TCH that will really decide if Joey needs any sort of ankle supports, a wheelchair or special walker, and any special rehab. He had an appointment 6 months ago when he was about 7 months old and he was assessed to be at the 2-3 month old developmental age. I really hope he has shown some growth. Well, I know he has. It really just all depends on the person who tests him and how they treat him. He will perform if he feels safe and comfortable but in the past, he has gone through evaluations with some real characters. For some reason, people like to shake loud scary bells really hard in his ear and when he freezes from terror, they say that he either can’t hear or there is something wrong developmentally with him. He usually bursts into tears shortly after. I wonder if they would like to have someone do that to them when their eyes were closed and they weren’t expecting it. Anyway, I guess we will see how it all goes.

This past year has been a difficult one and will continue to be a struggle as there have been many days when I still feel so angry at the loss of my child. It’s been an extremely lonely year as we have been homebound and few people have visited. Some promised and never made it, others had children and didn’t want to risk getting Joey sick, and for most people I understand. They still don’t know what to say or do. And so it has been me and Joey. Although my husband tries, he is consumed with law school and will sometimes go a week without seeing Joey awake due to his late hours and Joey’s bedtime. I miss having friends, going to lunch, going to work, but there is no other place I’d rather be that with my precious boy. It just gets very lonely.

I am terrified to have this baby girl, mostly because I don’t know how I am going to do it alone. Yes, my wonderful mother will be there to help in the beginning and other mothers have done it so I know I will survive. I want to make sure that all of Joey’s needs are met as he has a lot going on. Baby girl will have to go to his doctor’s appointments with us and one thing I hope for her to learn is compassion and loyalty, something l do see lacking in this world at times.

Sometimes I can feel myself becoming very cynical from the past year’s experiences and only God and I know the struggle and relationship we’ve had as I try to understand, to stay with Him. And the core of it will stay that way, between He and I. I will say this…I am grateful that He has stood by so patiently. I have plans and will carry them out. I know what God wants me to do with all of this and so now, it is a matter of waiting until the right time to follow through. But I will.

I still cry for my boys often. I will always be honest about that. This morning while I fed Joey his strawberry yogurt, he was deeply engrossed in the music playing in the background. I rubbed my hands on his little knees and went down his leg, “These are your knees,” I began, “these are your shins, these are your feet, these are your toes…you have 5 toes on each foot…1…2…3…4…5…”. Joey will never see these things for himself, he will only learn them from touch. I feel such guilt that he will miss out on these simple things. So I sobbed for his loss, apologizing over and over. It still breaks my heart when I see him reach out with fear in his eyes for the brief second he loses his bearings. I immediately grab his hands and bring them center and get right next to his sweet face, “Mommy’s here,” I say, “Mommy’s always here”.

So here I am…29 weeks along. I can only hope that I can handle this new adventure, that I have the strength. I hope I can.

Below are some cute pictures I took of Joey this past Fall, right before Christmas…hope you like them.

Wednesday, February 10, 2010

Unending Grace and Love

I woke up this morning and felt incomplete. It’s been a difficult year but in all honesty, the last few weeks haven’t been as hard. Although, I thought about my baby Eli, who passed away over 7 months ago each and every day, I hadn’t actually cried recently. I even attended a support group meeting and managed to hold in my tears, mostly because I was so sick I couldn’t breathe, but I felt like it was improvement nonetheless.

This morning though seemed strangely familiar. I was taken back to a year before and without warning, the tears began to flood my eyes. I remembered lying in the hospital bed and had been telling my night nurse that I was having some pains. When they put the baby monitors on me, they didn’t get serious contractions so she gave me an Ambien and told me to go to sleep. My husband had surprised me with a visit as he wasn’t supposed to be there this particular night due to his late law school night class. The nurse even suggested that he go home and get some sleep.

All of a sudden, I was dreaming of excruciating pain and screams coming from somewhere and realized…it was me! I opened my eyes and for some reason began counting…there were 7 nurses all around me and the one closest to me was telling me that the doctor needed to check me. I was in so much pain, I think. The funny thing is that I believe God makes you forget exactly how the pain felt. Otherwise, I don’t think women would give birth more than once. I can only remember that I was screaming repeatedly about how much it hurt. I think in my mind, I was hoping they would just give me some extreme pain medicine and I would go back to sleep. My babies were not supposed to be born this day. I still had over 8 weeks to go!

After the doctor checked me and said I was fully dilated, they began rolling me down the hall. I vaguely remember a nurse asking me where my cell phone was so they could call my husband and in the midst of my screams, stabbing my finger at #2 on my button as this was his speed dial #. It was all kind of blurry but I remember how fast the pain came and went and then I heard the doctor say, “take her to L&D. We are going to have to take one vaginal and one Caesarean”. What!!!! Oh dear Lord! Apparently, Eli was ready to come out naturally as he had made a comfortable spot resting on top of my cervix while Joey was transverse. As they started to turn my bed, she changed her mind and ordered me to be taken straight to the OR.

There was a nurse by my head who suddenly reminded me that I was still screaming, which I hadn’t noticed and that the screaming was causing one baby (Eli) to start pushing through. I replied by telling her, “oh I didn’t know, I didn’t get to attend the childbirth class! What do I do?!?!” She helped me to breathe and slow down my anxiety a little bit.

In no time at all, we were in the operating room and a sweet and very short anesthesiologist came to my head and said that they were going to put an epidural in my back as it would be best for me and the babies. Doing my best, I began turning slightly and began frantically repeating, “go ahead, go, I’m ready…” But he continued with his explanation of side effects and reasons why he felt this was best for me. I simply kept repeating my catch phrase while turning my body slightly, “go ahead, no really, let's go, I’m ready…”.

The nurses chatted about lifting me over to the surgery table and I began apologizing for being so heavy. They didn’t seem concerned and finally told me I was going to have to bend in half for the epidural. I really don’t know how they got me into the position I ended up being in as I not only had this huge baby bump as a deterrent but I have always struggled with flexibility when it came to bending forward. But somehow, here I was, bent over almost completely in half and as I lay there enduring the intense pain that I can now barely remember or describe, this needle that I had been warned about went into my back and I thought, “that was nothing”. I realized I was thinking out loud and when the meds started,




Epidurals. Ah……….

Suddenly there was a sheet in front of my face and the anesthesiologist was standing next to my head. I asked about my husband and they said he was on his way. And then I heard it...the softest most beautiful baby cry. It was Joey. I asked the doctor, “is that my baby?” He turned to me and said ever so gently, “yes it is”. A nurse to my left shouted, “Momma, look over here” and sweet Joey was whisked by looking so tiny and very purple. He seemed like a million miles away.

In what seemed like hours, I heard another nurse shout, “Momma, look over here”, and sweet angel Eli was also whisked by, also so tiny and very purple. I felt so useless and such joy all at once. I didn’t get to hold them. This was not the movie version I had pictured for myself where they place the baby on your chest and he opens his eyes and looks at you for the first time. My babies couldn’t even open their eyes yet, I would learn later.

My husband came in at that moment. He missed it. And I knew he would be so sad about missing it. He came and took the place of the anesthesiologist and from what I was told, I began chattering to him, while he stood and watched the doctor clean and rearrange my internal organs. His expression was one of awe and disgust combined with a weak attempt at looking at me warmly with reassurance. He told me later that I awarded everyone in the surgery room “merits” for doing such a great job (something related to my teaching job) and that when they lifted and moved me off the surgery table, I shouted “weeeeeeeee….” to which they all giggled. I don’t remember this at all. Drugs.

The next thing I know, I was alone. I had drifted asleep and was in a recovery area and Thomas was gone, they had taken him with the babies to the NICU. I didn’t know this and I just felt scared and so lonely. I didn’t even have my babies in my tummy anymore. There was a nurse next to me and she said my husband would be back soon.

When he returned, I was drifting in and out of consciousness but I do remember when they brought my babies to me…one at a time. They were each in their little own travelling isolet. They were so tiny and I was scared to touch them. The nurse had to tell me that it was ok before I even dared to reach out. It seemed like they were so far away, as if barely within reach and I wondered why the nurse wouldn’t bring them closer. I think in reality, my arm was heavy and tired and I couldn’t extend it fully. So an hour after they were born, I was allowed to “touch” each of my babies. My sweet angels who were not even supposed to be here yet…Joey born at 1:50AM weighing 1 pound 10 ounces and Eli, born at 1:52AM weighing 1 pound 7 ounces.

They took them from me very quickly.

Eventually I was taken to a room, a shared room with another patient. I was terrified because I heard the other woman talking as she had just given birth also. I told Thomas I had to get a different room. I knew they were going to bring her baby to her soon and I knew they were NOT going to bring me my babies. Thomas was very persistent and kept leaving the room to explain this to the nurses. Sure enough, it happened. They brought the baby to the other woman. When I burst into tears, she and her husband began talking angrily in a foreign language. Apparently, I was interrupting their happiness and they also wanted their own room. I can’t say that I blamed them…but what else could I do? My heart was broken.

They finally came and took me to a private room and it was almost 6AM. I desperately wanted to go see my babies, I needed to see them…but no one seemed to understand how that was far more important that getting any sleep. I was told that I had to wait until the doctor came to see me, which could very well be anytime between now and Noon. I wasn’t sleeping, I was frantic. It was so unfair. And to my surprise, the doctor arrived right at 6AM and was so kind and sad for me. As soon as I asked if I could go see my babies, he got this shocked look on his face and looked at the nurse and said somewhat angrily, “what?!? Take this new mommy to see her babies! Of course! You go see your babies, right away!” I began crying at his kindness, at his understanding.

And so we were off to the NICU, to begin one of the craziest roller coaster rides I have ever been on, one that doesn’t quite seem to be ending, one that many people have followed and encouraged me through. I have wanted to write this down for a long time and today, the day of their first birthday, February 4, 2010, it all became more vivid, as if it had just happened.

So on this morning, I lay here, thinking of that day, thinking of Eli. I remember holding him, singing to him, his eyes, his skin, everything. It seems as if he was just with me yesterday. I had this insatiable urge to get up and drive to the hospital as I had every day. It’s still so fresh.

I began to weep.

Thomas stirred and then sat up and held me. He knew. It was going to be a hard day for him as well.

We decided to plant a tree for Eli. I picked a Bradford flowering Pear Tree and Thomas planted it that night. I also got an ornament to hang on the tree. The three of us hung Eli’s ornament and huddled in the cold night on this, their first birthday. I felt a little numb at first and then I began to loosen up and let myself soak in the memories I had for my baby boy who passed away on June 22, 2009. He was known by many from hospital staff to family and friends to strangers all over the world. And yet, few had ever met him. He was a fighter, like Joey, who’s little body just couldn’t take much more. Only when I finally told that sweet angel boy that it was ok, that he could let go, did he ever even stop fighting. I know he did it all for me, his Mommy, because I asked him too. Little did I know, God had plans from the beginning to have Eli by his side and only allowed his physical self to be with us for 139 days. When I think about that, I do feel blessed as Eli was so special, and I got 139 days of his life on earth to love on him, pray for him, talk to him, hold him, sing to him, read to him, teach him things, to be his Mommy...and I got such a punkin full of love and joy and I truly believed he impacted so many people.

My support group (MEND – Mothers Enduring Neonatal Death) sent a single white rose in remembrance of Eli’s birthday and I wept at the idea of the compassion and understanding of that gesture. It was such a beautiful idea and I treasure that rose. It sits next to Eli's Christmas tree (that I haven't had the heart to put away) and next to his cake (returned to its pachaging and sealed), all on top of his trunk of memories.

We celebrated Joey’s birthday that night after we planted Joey’s tree and he was such sweetness. He laughed and played in his cake and was the joy of our life, as usual. I don’t know what I would do without that sweet boy and I love and adore him more than I could have ever imagined.

So this day of their first birthday was bittersweet but I survived it and look forward to many more. Healing does happen…and faith returns…and love and grace is unending. Thank you God for that!

Daddy plants Eli's tree

Eli's present for his 1st birthday

Eli's engraved ornament

The engraving on Eli's ornament

Mommy and Joey hang Eli's ornament on his tree

Mommy, Daddy and Joey

Joey gets a Braille birthday card from one of his visual therapist

Nana loves on Joey on his 1st birthday

Joey says, "oooohhh, what's this?"

Joey likes his beaded abacus

Joey thinks birthdays are pretty fun!

What's up Daddy?

Joey loves his new music/sound toys!

Joey and Eli's birthday cakes

Joey enjoys and destroys his birthday cake

Happy Birthday Joey!

Mommy Loves Joey

Mommy Loves Joey