Tuesday, January 30, 2007

Addendum B

The Confusion


Microcephaly.



Before my little Monkey, I don't believe that I was aware of this condition. Shame on me.

Without the threat of being considered certifiably insane, I knew that there was something - "not right". I felt it in every part of me. Julien knew it too. He constantly asked me throughout my pregnancy, "Mom, what if something is wrong with the baby?". Not only was Julien afraid of something happening to me (because at the age of eight he knew that women could die during childbirth), but he was worried sick about his little hatchling.
We knew.

If we knew, then why couldn't anyone acknowledge it?
I don't know if it was because I was eight years older or if it was the emotional strain, but this C-Section was much more difficult to recover from. After a C-Section, you have to remain in bed for a full twelve hours (for those of you who don't know that). It is twelve hours of misery. I was so swollen and puffy and in so much more pain than with Julien. When my twelve hours were up - 6:00 p.m., I was buzzing the nurse, asking her to come and take all the mess out of me and help me up. She did, God love her. She sure did, without an ounce of sweetness. I got up and immediately wanted to go for a walk. Chris and I got Addie and went for a walk around the hallway passing room after room decorated with big pink or blue ribbons. It felt good to be out of Room 321 and to do something somewhat normal.

That night, Chris had the pleasure of "sleeping" on a pullout couch that really was more accommodating to someone under five feet tall. The couch was positioned just in a way so that we were looking at one another. Throughout the whole night, it was the same thing over and over. I would close my eyes to rest and Chris would drift off to sleep for a minute. I would open my eyes because I couldn't rest and he would wake. He would ask me in the same quiet voice, "Are you okay?" "Do you need something?" and then we would just lay there looking at each other, not knowing what to say. We knew we would be fine and we knew Addie was a gift, but we were still searching for the missing pieces.

As a second time Mom, I knew that I would send Addie to the nursery later on in the night so that I could try to rest for a few minutes in between being poked and prodded. I don't think I ever slept though. After all, it was New Years Eve and we were downtown. Apparently, noise ordinances are not enforced on New Years Eve, because fireworks continued on into the early hours of New Years Day.

Addie wasn't in the nursery long before I heard the sound of the nurse touching the door handle to open the door, so I sat up in bed. Before the nurse even had Addie through the door, I asked if she was okay. She gave me a quiet reply of, "yes" and I took Addie from her. If felt so good to hold Addie close to me and to kiss every part of her little face. How could this precious gift be the cause of so much confusion?

What was so impossible for us to understand is how everyone could just go about their business like nothing was "wrong".
When I first saw my OB after the surgery, she came in and stood up against the wall far away from me. The least she could have done was sit on my bed, take my hand, give me a hug, something...anything. She asked what I knew and told me that she had heard of the condition, but thought it might be something that could be corrected with surgery. She also told me that as soon as she left the O.R., she went straight up to her office and pulled my chart. She wanted to see if there was anything that she had missed. I didn't talk to her about Addie again until my post natal check-up.

Indeed, there was something that was missed. Between the ultrasound tech, the radiologist (if there even was one) and my OB, nobody bothered to READ the differential on the ultrasound. It was clearly there. I know this because after Addie's birth, a family favor was called in for a radiologist to review my ultrasound and confirmed what I already knew. Someone should have caught the differential and didn't.

God has HIS plan and HIS plan was for me not to know in advance. I get that and I accept it. I don't accept an OB/GYN's office being so busy that they don't give you five minutes for an OB exam, much less read the ultrasound that they ordered. That was one of three reasons why I now have a new doctor at a different hospital.
There was not a single nurse during my hospital stay that ever acknowledged that I was holding a beautiful, God sent, special needs baby in my arms. Not one. No one asked me if I needed anything, no one offered to help me gather information and no one said the words - special needs.

I never understood.
The lactation consultant was a pesky little thing. Addie did a phenomenal job of catching on to the whole, "I know how to eat thing" (she's my daughter, what can I say?). She nursed like a champ. The lactation consultant came by the first time and asked if I had questions, problems with latching on, etc. I assured her that I didn't have any problems and really wanted her to scat. She did, but was adamant about checking back with me, giving me her number just in case I did have problems and even called to make sure. For all things good in this world! Just say it, say that you are concerned because I have a special needs baby. Somebody, please acknowledge it!

The day that we were to leave, my aunt called and told me to request a neuro consult for Addie before we left. I called the nurse and asked her to contact the neurologist on call. She wanted to know...why? Are you kidding me...? I had to call the nurse several times that day and eventually just called the neurologist office myself until I finally talked to the receptionist. Why was it so difficult for someone to help me?

While waiting on the neurologist, the nurse came in to go over our discharge information. Part of her duties was to talk about basic care-giving, even to second time parents. By this time, I was getting really irritated. Are you seriously going to make me sit while you go over a manual regarding proper diapering, feeding and bathing and yet not bother to acknowledge that I am holding a special needs baby? I finally just told her to give me the paper to sign and be done with it.

I don't want to recap the visit with the neurologist. He was a man that lacked any type of compassion and had I not been full of surging hormones that made me want to cry, I would have told him how horrible he was. What kind of physician are you if you don't have compassion? I never understood it and I still don't. My only guess, he shut down his emotions years earlier to protect himself. When that happens to a physician, they need to spend their time lecturing or in a lab, because patient "care" should be no longer.

The last nurse that we saw was a bit older. She had older children of her own and actually talked to us a little. While the nurse and Chris gathered our things to leave, I excused myself to the restroom and had my very first breakdown. I cried harder than I ever had before...quietly, because I didn't want them to know. It hurt my incision, my heart and the very depths of my soul.

When I came out of the restroom, I asked the nurse to give Addie a small bottle just to make sure that she wasn't hungry since my milk supply wasn't in yet. The nurse responded by telling me that she would be happy to. That I wouldn't believe the number of mothers who allow their infants to go hungry while waiting on their milk to come in. I told her that I didn't want my baby to be uncomfortable, I wanted her to be okay. It was those words that made me excuse myself again. This time when I came out of the restroom, I couldn't stop the tears. They just kept silently falling down my face. I sat down in the wheelchair and took Addie so the nurse could take us to the front of the hospital for Chris to pick us up. Chris was a few feet ahead of us and as we got to the front door, the nurse told me that although she shouldn't, she was going to take me to our car. Chris put Addie inside, I got in and then they finished loading up the car. The nurse leaned in and gave me a hug and wished me the best and then she was gone. She never said anything about my baby. She never acknowledged that I was sitting next to my special needs baby.

I still couldn't stop the tears as we started home. Our homecoming for our beautiful baby girl. I called my mom to tell her that we were on the way. I said something to my mother that I wish I could take back because I didn't understand what I was saying at the time. When my mother asked what the doctor had said, the only thing I could tell her was, "she's not okay and never will be" and my mother responded by saying, "I know baby". I asked her to talk to Julien for me before we got home, but she didn't know what to say.

Can you imagine that conversation?

When we got home, Julien was on cloud nine. The first thing he wanted to do was to show me Addie's door to her bedroom. He had made her a little homemade sign to welcome her home. That was all my baby got for her homecoming. In a way, I feel we let her down. How could I not have done more to let her know how happy we were to be bringing her home?
That first night at home, we were a little lost. It didn't take much talking to decide that we would all sleep in the living room together. Chris and Julien camped on the floor. Addie started off in her playpen and I was miserably reclined on the couch. That night was hard. None of us slept. Julien kept wanting to make sure that we were okay. We were, because we really would be.

The sun continued to rise and the next morning:
Julien was still out for Christmas break. We were running late to our 8:15 appointment at Greenvale and I was a mess. I had just sent the email to my friend at work. The email to pass along to let everyone know. We, at first, decided we wouldn't talk to anyone right away. I knew the sooner we asked for prayers, the sooner the healing could begin. On the way to drop Julien off at daycare, I was still trying to tidy myself and put my earrings on. My wedding rings still didn't fit (and neither did my shoes), I was still swollen like a whale.

Right as we were approaching the daycare, a song came on the radio. It was "Addie's Song". The song that was on the DVD that was played at my baby shower. It was "My Wish". How appropriate. I went from trying to put that earring on, to crying and managed to drop my earring down between the seats. We never found my silver hoop earring and I can no longer listen to that song. It is just too difficult.

We sold the car that we had when we brought Addie home from the hospital. The day we signed the papers, Chris and I both searched for that earring. It didn't matter because I had long since replaced them, but we just wanted to see if we could find them. We don't know why. We also sold the house that we were living in when Addie came home, for her homecoming.
Those are memories that are better left to fade.

So, there we were arriving at Greenvale the morning after we were released from the hospital. I was so swollen, wearing my maternity jeans and sweater that had seen better days. I didn't have on my wedding rings, no earrings and my makeup had washed away with my tears. I can't imagine how I looked.

That was the morning that those words were said to us. The morning that someone acknowledged that in my arms was a special needs baby. All along, I didn't realize those words were coming because I still didn't have a clear understanding of Addie's diagnosis. When those words came out of Dr. Dudgeon's mouth, I think the Earth stood still...for just a moment.

So, there it all began. We were given a very poor prognosis for Addie. Me, being the incredibly stubborn person that I am, refused to accept that. I wasn't in denial, I just refused to accept a prognosis out of some textbook.

I have a special needs baby.
I can say those words without any grief and amazingly enough, the Earth continues to turn just ever so perfectly.

I am blessed beyond words.



April 3, 2009
Associated Links:


Addendum A

"Hatchling"




So that my memories will never fade...


There were many details surrounding the weekend of Addie's birth that I never talked about. I want to put those details in print so that those memories stay fresh in my mind. My sister is working on putting the blog in print for me, as a keepsake for me to pass on to Julien and Addie.
The weekend that Addie was born, Julien was supposed to spend the night away. I didn't want him to, because I just had a "feeling". I was still nine days away from surgery, but I just didn't think Addie would wait any longer.
During my pregnancy, I had an obsession.
A chocolate milk obsession.
I fed Addie chocolate milk every chance I got.
Breakfast, lunch and dinner.
She loved it.
I loved it.

The Friday going into that weekend, I woke up and had a little chat with Addie. I told her that I was cutting off her chocolate milk supply. It was cruel, I know, but I had to convince her to GET OUT OF ME!
:)

Saturday, I talked Chris and Julien into celebrating New Years Eve a day early. Why? Who knows, I just "felt" like we should. I told them that might be our last chance to go out before Addie made her debut. I let them decide what we were going to do. I was so miserable, so I just didn't care.

They decided on dinner at Quizno's (how manly), followed by the movies - to see Rocky. Did you just feel the surge of testosterone?

I had been having contractions all day, but not anything different than any other day. Throughout the movie, the contractions were getting worse. I occasionally got up to walk around and to feel a little better. I think that was the longest movie that I have ever seen in my life. It just drug on and on...and on.

When we got home that night, we went about our normal nightly routine. Julien and I would always read a book before bed. That night he chose a book about dinosaurs...hatching. It was a book with fold down flaps showing the dinosaurs hatching. He picked that book because he wanted to read it to Addie - to show her how to "hatch". To this very day, he credits Addie's birth the next morning to him reading her that book the night before.
I was in bed by 10:30, not feeling any worse than the rest of the evening. Next thing I knew, I was awakened from a deep sleep to see the clock displaying - 12:00. Midnight - exactly. I knew as soon as I opened my eyes that I was in labor, as in, there is no turning back.

Chris woke when I was getting out of bed. A woman in labor doesn't "gracefully slip" out of bed, you know? I didn't tell him anything, except to go back to sleep, I was fine. I was fine. I wanted to take a shower, dry my hair and put my make-up on. I knew that if he was awake, that would hinder my ability to do those things. Seriously, you can't go to the hospital to deliver a baby without tending to those needs.

By the time I woke Chris, my contractions were two minutes apart. He got up, dressed and grabbed the rest of our things. I asked him to time the contractions, just to make sure. He's the one who told me, "let's go". I insisted on calling L&D first. I woke Julien, helped him grab a bag of "time occupiers" and out the door we went. By the time we made it to the interstate, I was kind of wishing that I wouldn't have waited so long. Bless the women who want to go "all natural", I'm more of a, "stick the needle in my back and get the drugs flowing" type of person. After 24 hours of un-medicated labor with Julien, I had no intention of "toughing it out".

When we arrived at the hospital, we were able to take the first "women in labor" parking space. Thank goodness, because we still had to walk a mile to L&D. When I got to the room, the nurse called my doctor and scheduled my C-Section for 7:00 a.m. Addie insisted that she really didn't want to wait that long, so they moved it up to 5:30 a.m.

I didn't get my spinal until I was actually in the O.R. If you've ever had one while in active labor, you know just how difficult it is to breathe through a contraction, but yet remain so very still while an ENORMOUS needle is skillfully inserted into your back. Chris told me later that he was in tears listening to me. I was trying so hard to remain calm and talk to the nurse so that I could get through the procedure. I was in pain, I was woozy and I just wanted it all to get started.

You all know how those next minutes passed.
There was never the moment that I had with Julien. The moment that the doctor held him over the sheet and showed me my beautiful baby, there was no excited announcements, there was only the nurse who said, "6:00 a.m.".

I have never talked to anyone about the moments that followed after I left the O.R. I remember that as I was being wheeled back to my room...just feet from the O.R., I looked down the hall and saw my Mom, my sister and Julien. They were coming towards the room and were beaming with joy! I wanted to say something to them, but all I could do was shake my head. The nurse stopped them and asked for a few minutes, "to get me settled".

I really don't know the time frame, all I do know is that when Julien finally walked through the door, he gave me a hug, walked over to the baby warmer where the nurse was still monitoring Addie, looked at her for the longest moment and then turned to me with an expression of pure joy. He was so ecstatic, so beautiful, it was as if an angel were there with him. It was a look and a moment that I will never forget. I don't know who asked Julien what he thought, but he said, "she's real".

Up until that moment, I guess he never could truly wrap his mind around the concrete knowledge that he really was a big brother. A big brother to a "real sister", not just a "hatchling".

That was the first moment in my life that I saw the love that Julien immediately had for Addie. He didn't see her as anything other than his "real sister", his beautiful little sister that he had waited so long for.

I didn't cry in front of Julien. I don't remember what I said to my family. All I remember is it seemed like everyone left so quickly. I think they watched Addie have her first bath, but I was the first to hold my sweet, little angel. Everyone left before they could hold her.

Chris declined to go with Addie for her ultrasound. The nurse assured me that she would stay with Addie. I remember Dr. Dudgeon coming in and almost each step that he took and the look on his face, but not all of what he said. There were several things that I will never forget, but between the shock, Morphine and the horrible surge of hormones, there is so much that I just don't remember.

It was many long hours of calling friends and family and then by afternoon, my room was full of people. Some people stayed much longer than I wished they had, yet others left too soon. Then my sweet baby boy was back. My sweet baby boy was back to hold his "real sister" and to love her. How could anything ever be wrong seeing and feeling the love and the bond between my two babies?

Blessed am I.
Blessed am I for my son and my little hatchling.
April 1, 2009

Our "Wait and See World"

From the beginning:

When I went to bed Saturday night, I felt fine. I didn’t expect to wake up an hour and a half later in labor.

Addie woke me up almost exactly at midnight. I knew as soon as I opened my eyes that I was in labor. Chris woke up but I told him to go back to sleep…he would need it. It wasn’t until 1:30 that I woke Chris up. It didn’t take much to get Julien up and out the door. The prospect of having his little sister before bedtime that day made it easy to get moving. It’s amazing how many cars are on the road at 3:00 a.m. on a Sunday in the pouring rain. Chris drove like a madman and thank God we made it safely. The next few hours went by so quickly.

While laying in the operating room waiting for Addie, I was calm but excited. I kept my eyes fixed on Chris as they announced that Addie was on the way; it was the next few minutes that would change our lives forever. As the nurse announced that Addie arrived at exactly 6:00 a.m., I asked if she was o.k. There was no answer (maybe they just didn’t hear me)…a minute or two went by and I asked again…no answer and I felt my heart dropping. Maybe she wasn’t breathing well and they were just busy taking care of her. I asked Dr. Ingram what color hair she had and she told me that Addie had so much blood in her hair that they really couldn’t tell. I knew then that they had heard me before but were choosing not to answer me. Quite a while passed before the nurse brought Addie to lie beside me. As she placed her next to me, she let us know that there appeared to be a problem. Panic set in. As the next hour passed, we didn’t know what to think. A nurse came in and told us that Addie needed an ultrasound to see if there was a problem with her brain. It wasn’t long before she was back and we were told that there appeared to be “bleeding on the brain”. That’s all the information we had and still didn’t know what that meant.

Addie’s pediatrician came in for her newborn visit and that’s when the news starting getting worse. As Dr. Dudgeon sat in the rocking chair trying to find the words, all I remember him saying is “It’s not good, Jenn”. Later on that morning came the CAT Scan and conflicting results. Ultimately the results of the CAT Scan showed that there was no bleeding on her brain, but a build up of fluid in the ventricles and around her cerebellum. We still didn’t understand what was going on and nobody was very forthcoming with details.

Monday passed in a blur and I insist that I go home Tuesday morning. I can’t stay any longer. Before we are released Addie has to go through another ultrasound (this time on her kidneys), blood work for possible infections and genetic testing. We are released to go home by 7:00 Tuesday morning, but get a call from my aunt who insists that we have a pediatric neurologist consult before we leave the hospital. We request the consult and this doesn’t take place until around 6:00 p.m. We waited at the hospital the whole day to hear the worst news of our lives. The neurologist informed us that Addie had suffered brain damage and that we could expect a bleak future for her. He ordered an MRI and then the waiting began.

On Wednesday, we had to take Addie to Dr. Dudgeon for a follow up since we left the hospital early. As we are sitting in his office and he’s going over details with us he looks at me and advises me that I really need to rest and take care of myself. Next were the words that would stay with me for the rest of my life. He told me that I needed to rest because it was hard enough recovering from having a baby and major surgery, much less having to take care of a “special needs baby”. I went numb. Addie…a special needs baby? I don’t remember the rest of that week.

Monday came around again and we had to take Addie in for her MRI. We were so full of hope, knowing we would receive good news that morning. If the damage to Addie’s brain were just to her cerebellum, surely she would be o.k. Addie was perfect during the MRI (they decided not to put her to sleep), didn’t move an inch, not even so much as sucking on her pacifier…what did that mean? Was she O.K.? I couldn’t go in with her during the procedure because of my staples, but I sat and stood and paced as I watched her through the window. Our journey to the neurologist office for the results went in slow motion, as did the moment that he gave us the news. Addie had suffered complete irreversible brain damage. According to him, we could expect for Addie to suffer seizures, severe mental delay and that she would never function “as a normal child”. I don’t know how we got from his office to the chapel, but I know we did. As I sat praying and hysterical, a nun came to us. Sadly enough, she had no words of comfort, only offered to pray with us. I don’t know how long we were there and I don’t remember the next few days. I remember the words that each doctor had said to me and that was “enjoy your baby”, they said it as if we were doomed.

I can’t bring myself to look at the piece of paper that Addie’s diagnosis is written on and I can’t bring myself to read her prognosis. I know I should research the diagnosis more, but I can’t right now. I’m relying on my aunt to give me the details that I need.

Next, came one appointment after the next and the formal entrance into our “Wait and See World”.

Addie had her hearing evaluation, which she passed…great news!

Her vision test brought about encouraging news; her optic nerves are completely normal! This gives us great hope that she will be able to see. The ophthalmologist warned us that although her optic nerves are formed, the area of her brain that controls vision might not have formed. So, we have to “wait and see”. We should know by around three months but definitely by one year what to expect for her visually. Right now she seems to focus on objects so that is VERY encouraging!!!!

We consulted with a neurosurgeon to determine if surgery was an option for her. We learned that Addie’s sutures were overriding and not fused which means that there is nothing surgically that can be done. This is good news because I couldn’t have imagined putting her through reconstructive surgery. We can expect Addie’s skull to grow as her brain grows, but we will have to “wait and see”.

We got the results back from her blood work and genetic testing and all were normal. This simply means that there was no medical reason why this happened, but simply the will of God.
We are scheduled with another neurologist soon and also a geneticist.

I was “lucky” enough to speak with a Neonatal Nurse at Blue Cross concerning Addie’s condition and was referred by her to The Bell Center. This may very well be our saving grace (I am so glad that I decided to talk to her!). Addie is now enrolled at The Bell Center two days a week for therapy. She will be enrolled there until she is three years old. Addie will receive physical, speech and occupational therapy as well as any other developmental help that may be necessary.

Over the last four weeks I have prayed for peace. I feel that it is coming. I no longer go to bed crying and wake up crying but I have yet to make it any considerable time throughout the day without crying…it’s a start. I continue to grieve for Addie, for the things in life I’m told she will never experience. My baby may never walk or go to school, but the part that breaks my heart the most, is that my baby may never have a baby of her own. Isn’t that what every mother dreams of? Having a child is the greatest gift in this world and my angel will probably never get to know that joy. I know I have to focus on each day but my mind continues to wander down this path daily. My goal is to prove the doctors wrong. It’s possible…right? I feel that Addie will do much better than expected and maybe even go to “normal” school.

We have hundreds of people praying for our precious angel and I know that God will grant us a miracle. I am so thankful for all the prayers and for every gift, card and phone call that we have received.

As I told Dr. Dudgeon: we are “preparing for the worst, but hoping for the best and that God gave Addie to Chris and me because he knew that we would take care of her”.

Addie is our angel and I thank God that we have her.

The Moment I First Saw My Baby Girl!
Our "Wait and See World" one year later.
Addendum A
Addendum B

Wednesday, January 24, 2007

Addie's first official bath.






Her cord just came off today. She loved her first bath,but cried when I took her out.

Sunday, January 07, 2007

Friday, January 05, 2007

Cutie Pie




My big brother loves me so much. I am motivation for him to get up and get dressed fast in the morning so he can hold me.