Friday, May 28, 2010

A Toots is born...

Strap in and get ready for a bumpy ride. This may take a while...

June 20th, 2003. I was in labor. This was my third pregnancy and I was two days past my due date. The contractions began around eight in the morning and by the time the two-forty-five ferry was getting ready to leave, I knew we'd best be on it. We got my mom and step-mom to watch Blake and Ellie, packed my bag and left.

It had been a horrible pregnancy. Back pain so severe there were times I literally could not stand. Months spent not being able to sit up, only being able to lie down. Horrible panic attacks. I had only gained twelve pounds. You see, I was very sick with thyroid cancer and had no idea. I guess I just thought that I was older this time (all of 33) and my body wasn't handling the pregnancy that well.

Anyway, we got to the mainland around four and headed straight to the hospital. By this time, my contractions were every four to five minutes and were rather painful. We had already gone through the pre-admission process so we were ushered to the delivery room as soon as we got there. They checked me out and put me on the monitor and we waited. After about an hour, the doctor decided that these were just "false" labor contractions. They kicked us out.

I was beyond mad. I ranted and raved to my poor hubby as I waddled out of the hospital to get to the car. Not real labor?! Are you freakin' kidding me? Let's face it, this wasn't my first time at the rodeo. This was my third pregnancy and I was over due and you are going to tell me with a straight face that this wasn't labor? Screw you!

Remember my cousin, Heather, who I mentioned in a previous post? She was going to be in the labor/delivery room with my hubby and me. Heather got on the four-thirty ferry with plans to meet us at the hospital. We met her on the way out. We decided that we had better get a hotel room somewhere and that it should probably be relatively close to the hospital. After getting the KFC that I had demanded, we checked into this little dive that made you wonder how many people had committed suicide there.

I spent a very uncomfortable night with my "false" labor pains and by morning we headed back to the hospital. Same exact routine with the same exact outcome. Yep. Even though by now there was (sorry to get graphic here) blood spotting and quite painful contractions, I was "not in labor".

What a bunch of A**holes!!

Off we went. I was embarrassed and in pain but managed to let them know just how I felt by saying rather loudly in the hallway upon our departure, "Don't worry. I won't be back until I see the G-damn head poking out!". I know, I'm a classy broad.

Now, I am a hardcore Harry Potter fan and by now it was Saturday, June 21st; the release date of the fifth book. Holy crap, we had to go get it! Picture if you will a very pregnant woman who was in labor roaming through bookstores in hot pursuit of Harry Potter. I must have been a sight. Stopping every few minutes to wait out my "non-labor" pains and then move on in my quest. I didn't care. I was in too much pain and too pissed off to give two hoots about what anybody might be thinking of me. And yes, I got the book.

Because we honestly didn't believe that the hospital would ever admit me, we had Heather's hubby bring our four (Heather's two boys and our two girls) kids over to swim in the pool (we switched hotels) and go to the movies. Yes, I was ready to take my kids to the movies while in labor. We Maine girls are tough! However, by the time they all met us on the mainland, and as it turned out, I was in too much pain so my hubby and his brother took all the kids to the movies while Heather and I stayed at the hotel.

After the movies the guys took the kids to the pool and after about a half hour I told Charlie we needed to go. NOW! At this point it was about seven-thirty in the evening and Heather had gone off to get everyone some dinner. My brother-in-law stayed with the kids and we were off.

There was no turning me away now so I got into the delivery room and waited for the doc. She came in a few minutes later, confirmed that I was in labor (duh!) and proceeded to break my water. For those of you who have never had this done let me tell you about this most lovely little procedure.

The doc gets what looks like a monstrous crochet hook, inserts it up into the (well, you know) and grabs the bag of water with it and pulls (at least that is what it feels like)...not painful but not pleasant. Pretty gross really...but effective in speeding up the labor process. I went from four cm dilation to eight in about an hour. By this point Heather had gotten there and I was in some serious, gut wrenching, mind bending, ass kicking pain. So now I get a little help from some kind of miracle drug right? Wrong! I was moving to fast in my labor and there wasn't time. Well isn't that just precious?!

Hold on...there's a problem. There's muconium staining in the amniotic fluid signaling that the baby was in distress. I was told that I could not push, no matter how badly I may want to, until the pediatrician got there. Then we were told we would not be able to hold the baby right away. She would be given to the pediatrician to have her lungs suctioned. I was in so much pain at this point that I really don't think I was comprehending what they were saying.

What happened next is still kind of a blur to me. The doctor had lost the baby's heartbeat. It had just stopped. It felt like the air during a bad thunderstorm. You know, that kind of tense electricity where everybody and everything is sort of buzzing? Anyway, the doc told me there was no more time to wait and I had to push the baby out right now. It was like something out of a movie. Just as little Tessie arrived into the world, the pediatrician came flying into the room, grabbed her from the OB/GYN and took her to the little warming table that they use for newborns.

I was so relieved to be out of that excruciating pain but I knew something was very wrong. There was no cry. No sign that a new little life had entered this world other than three nurses and the pediatrician surrounding that little table she was on. Also, there was that feeling in the air still. And then I got it...I don't think they wanted me to see what they were doing to her. I caught a glimpse of her little face and knew there was no way that she was breathing. Breathing babies just did not look like that. I screamed at the doctor, "Is she breathing? Why isn't she crying?"

Thank God for Dr. Stephenson. He very calmly told me they were trying to keep her from crying and moving around because they needed to get her breathing better. I watched, almost from above my body, as he intubated my baby and started to force air into her lungs. And he was singing to her and cooing as he is doing this, "Come on, can do it...come on..". They got her stabilized and whisked her off to the nursery.

We were left to wait. What had just happened? Things like this didn't happen to me, they happened to other people. After about a half an hour the OB/GYN came back in the room and was CRYING. Oh God. She died. My baby died. I lost it. And poor Heather almost passed out. But the doctor just wanted to try to help me understand how this had all gone so wrong. The baby was still holding her own. And after about two hours Dr. Stephenson came in and sat on the side of my bed.

He told me that the NICU team from Portland were coming to get her and she would be transferred to Maine Medical Center's Barbara Bush Childrens Wing. They had done a number of blood tests to try to determine why she was struggling so much but nothing showed up. Then he asked me if I had any questions for him. "No." He looked at me and said "yes, you do." I stubbornly clung to "no, I don't". He inched a little closer to me and said, "you want to know if your baby is going to die." And he was, of course, right. I just didn't dare to ask for fear of his answer. "Yes" I sobbed. He told me that, no, she was not going to die but that she needed some extra help that this hospital just couldn't provide.

Still, we had no real answers as to what was really wrong. But Dr. Stephenson said it was time to go to the nursery and see Tessie. I said I could walk but he insisted on a wheelchair for me saying that seeing her hooked up to a respirator along with all of the IV lines and other monitors on her would be too much and I might faint. Enough said. I got in the wheelchair . Heather thought this should be a moment for just Charlie and me but I insisted she come to. After all, she was in the heat of the battle for this kid's life just like us at this point.

We got into the nursery, Dr.Stephenson tinkered with a couple of her wires and checked the respirator and then busied himself near us but far enough away to let us have a bit of privacy. I was afraid to reach in to the incubator to touch her. I honestly had no idea what to do. I sat frozen in a haze of fear and disbelief. I think Charlie and Heather felt the exact same way. Dr. Stephenson must have noticed because he came up to me and very kindly said, "Touch her. She needs to feel your touch." That broke my paralysis. My baby needed me. I reached in and leaned as far as I could near the plexiglass and said, "Mama loves you so much. I need you baby. Mama needs you to breathe for her. You can do it. Breathe for mama."

There is a very primitive connection between a mother and her baby that nothing else can touch. I have seen it and felt it with my other two girls, and this was no exception. Little Tessie knew my voice and took strength from it. I do believe that because all of a sudden, instead of the respirator doing all the work, Tessie started to work the respirator. She really started breathing on her own. Even Dr. Stephenson noticed the change on the machine and came over. We stayed for a bit but they had more they needed to do to get ready for the NICU team that was due to arrive. I was taken to a room, told Heather to go to the hotel to be with the kids when they woke up and to try to help her husband explain why there wouldn't be a baby for them to go visit the next day. My hubby followed the ambulance to Portland because there was no way that we were going to leave Tessie all alone, possibly fighting for her life, without someone who loved her. I had to stay behind.

It has got to be among the top ten worst experiences that you can go through. I had just given birth and was supposed to now be proudly and joyfully holding my baby. Instead, I was alone in the maternity ward of the hospital. No baby. No husband. Just me and the Polaroid of Tessie that the neonatal specialist took of her before they left.

I laid in the hospital bed and prayed for her to 'be okay'. Just don't die became my mantra. Over and over again I said it while clutching her photo. I promised that no matter what might be wrong, I would love her and care for her...just don't die.

Sometime in the night I began to bleed. Very heavily. I called the nurse and by the time she got to my room I was looking like something out of a bad scary movie. The nurse actually screamed when she opened the door and saw me. Three other nurses came running and they helped get me to the bathroom while they called someone to come clean up the room. They eventually got me back into bed, now hooked up to an IV to try to stop the bleeding. Didn't work. About an hour later the same thing happened again. This time they gave me a heavy duty shot of some drug to stop it. Thankfully it worked because the next step was surgery.

By the morning, my blood count was so low, they regretfully told me I couldn't leave to go to Portland to be with Tess and Charlie. I needed at least one more full day and night on bed rest. So my family came and everyone tried to act like this was normal. It was awful. I absolutely cannot stand fake cheeriness. But what else could they do? Tell me I looked like hell and that they were as scared as me?

I spent all that day, after my family left, reading the Harry Potter book that I had wanted so badly. I read the whole damn thing. I didn't want to eat or sleep...that might leave me some time to think about how bad things were. So I escaped into the world of Magic and Wizardry. The only times I actually stopped reading were when Maine Medical or Charlie would call and give me an update on Tessie.

On Monday I was allowed to leave. Charlie came and got me and took me to finally see my baby. The NICU was so intimidating. Scary noises, crying parents, tiny, frail, sick little babies. What was I doing here? And then I saw her. They had removed all of her equipment except an IV that they had to put in her head because all of her other veins had been blown from blood draws and IV's.

I sat in the rocking chair and they put her in my arms. I wish I could tell you that it was instant bonding. It wasn't. She felt like a stranger to me and the guilt of that feeling was overwhelming. I had to have Charlie take her. I was a mess. I have since talked to other parents of children with special needs and many of them told me of similar experiences holding their babies for the first time. At least it wasn't just me and the feeling went completely away once I got her out of the NICU and it was just us.

There are many facets to this story that, believe it or not, I still haven't told in this post. Not because I am trying to keep them secret...simply because it comes to me in flashes and it would take forever to write down EVERYTHING that transpired over those four days.

There is one moment during those days that I think about a lot. As we were getting ready to take Tessie home, we were getting her dressed and I was throwing out last minute questions to the pediatrician. The last thing I asked her was, "So I just treat her like a normal baby, right?"

The pediatrician looked at me and said, "She IS a normal baby.", and in that place in your heart that only you will ever know, I thought, "yeah, right."

And so our journey with The Toots began...

Thursday, May 27, 2010

Are you there, God? It's me, Joanna...

I am a firm believer in God. *all you non-believers can feel free to sneer at this point;doesn't bother me* While I am far from a fanatic or Bible thumper, I have always believed in God but my faith has most definitely been put to the test on several occasions.

By the time I was thirty three I had had two different types of cancer. At the ripe old age of twenty six I was diagnosed with malignant melanoma and at thirty three, after over one whole year of excruciating back pain, debilitating panic attacks, and horrible third pregnancy and child birthing experience, I was diagnosed with thyroid cancer that had spread to thirty or so lymph-nodes. See? Like I said, definitely tested my faith.

My biggest test came in the form of The Toots. I just could not wrap my brain around the question of "What kind of God would do this to a little baby?". Don't get me wrong, I still would throw up some prayers but without much belief that anyone was listening. Then one day something changed.

I was alone in my house with Tessie in my lap. I was hysterically crying. HYSTERICALLY. I know...not a good idea to do in front of a two year old but I was beyond being able to control it.

We had been run through the gauntlet at this point with every specialist we could find trying to figure out what was 'wrong' with Tessie. We had just returned from a three day developmental clinic at Childrens Hospital and were waiting on some very scary genetic/DNA tests that may give us a clue if not the whole answer. And I had, stupidly, researched on the internet what some of the diseases would mean for the Toodle Bug and us if she did in fact have them. You want to talk scary? Holy crap, I was beyond terrified. How would we all get through this if the tests came back positive? Would I be able to handle the kind of care she would need to have, all the while knowing that it would just lead to an early childhood death for her? (these were the kinds of test results we were waiting on) And what about having to tell her sisters? What would it do to them?

So I sat in the chair, crying, hugging The Toots, and I started to pray. But for the first time since realizing Tessie would have life long health and development issues, I did not pray for her to be fine. See, that was always my prayer before that. "Please make Tessie okay". For whatever reason this time, I simply prayed for strength and courage. That was it.

Here comes the part where you all can say I was 'crazy'... God answered. As I was hysterically crying and praying, all at once I got a warm, tingly feeling throughout my whole body and I actually HEARD "it will be alright". I instantly stopped crying and felt...,happy, safe, emotionally strong and loved. Like I said....crazy.

Now, I have had this conversation with many people with equally as many opinions. The ones who also believe in God totally agree that He was there for me in my time of real need. The ones who do not believe say it was my subconscious swooping in to save me from, basically, a nervous breakdown.

But only I know what happened that day and I know what I believe.

And here is where I have come full circle on the question of how a God could do this to an innocent child...just look at Tess. Take a second to be in her presence and look into her eyes and feel her spirit (she is one big bundle of unconditional love) and you tell me there isn't a God.

Wednesday, May 26, 2010

Theeerrreee'sss Toooooodiieesss!....

I have mentioned my dad in previous posts.

Big guy. Big presence. Big opinions.

Whenever he sees The Toots, this is his siren a big booming voice he yells out, "There's Toodies!" as he walks toward her. I am often tempted to say to him, "Hey dad, she's got some delays but she's not deaf!". I would tell him this except for two very good reasons: 1)he loves her to pieces and she, in return, thinks he is just awesome and 2)it would be like talking to a wall.

He still thinks she would be fine if we only would give her "real" food and "not that shit you force into her stomach". Ahhh...denial. Ain't it grand? I try and try to explain to him that she cannot swallow "real" food without aspirating it into her lungs and getting a nasty and possibly life threatening pneumonia. I go on to tell him how, since the G-tube, she has gained weight and not been nearly as sick. And for whatever reason that I drive myself crazy trying to figure out, he acts like it is the first time he as ever been informed of this. "Huh, really?", he'll say. "Well, I guess the doctors know better than me." Ya think!? Like I said before, a brick wall.

Meanwhile, after Tessie hears him call out to her she is just all eyes trying to find him. You can see it on her face. "Where's Papa?". Her little eyes will practically be swiveling in their sockets trying to find him. Oh yeah...and she is grinning because she knows that where there is Papa there is fun and naughtiness.

And she is all about naughty. Remember her Spongebob addiction? Guess who her favorite character is? Plankton. The tiny, little evil dude who wants to rule the world. She thinks he is awesome! And she just loves to hear Blake and Ellie catching hell from me. I don't know if it is because she can't move herself to get into any trouble or if she is just such a sweet soul that the idea of 'being naughty' is always comical. But whatever her reasons, she loves being "tricky" (this is what I tell her when she tries to fake me out about not feeling well, and yes, she does do this).

Anyway, as I was saying, my father is tons of fun. All kids love him because he riles them up. He will get to Tessie, and have arm wrestling matches with her that she will always 'win'. And I think she believes that she has beaten him because she just giggles and laughs when he dramatically throws his arm down and yells "Tessie is the arm wrestling champion of the world!". Or, he will get about an inch away from her and have her 'hit' him in the face. Of course, she can barely reach up to touch his face but again he makes it very dramatic and yells "Ouch!!". They will do this over and over and over.

Wait, it gets better. When we (actually I should say he) first began to realize that she would never walk or talk or develop normally, he would go up to her, take her cute little hand in his giant massive paw-like grip, and hold up her middle finger to flaunt at us all while saying, "screw the world! I'm perfect the way I am. Anyone can talk and walk but it takes someone extra special to get people to do everything for them like I do!".

I pretend to be horrified but really think it is quite funny and after all, he is only speaking the truth for my little Toots...she is extra special!

Monday, May 24, 2010


In the course of getting the Toodle Bug to all of her different appointments throughout the years, many different people have pitched in to help us. My cousin, Heather, is one of those people. My OLDER cousin. Remember that as you keep reading.

Heather has attended many of The Toot's therapies and even a few doctors appointments. She was my go to gal for a period of time when I needed to quickly get Tessie somewhere and couldn't easily reach my hubby (he works in places that many times do not have phones)

One day when Tessie was quite sick her pediatrician called me at home after getting a frantic message from me, and after hearing me describe her symptoms, asked me to get her to him on the mainland ASAP. Naturally I couldn't reach my hubby so I called Heather. Help! She arrived on the double.

We got The Toots packed up and made the next ferry to the mainland.

Our pediatrician had requested that we immediately take her to the hospital for chest xrays (suspecting pneumonia) before seeing him. He had already called them and they would be ready and waiting for us to arrive and would immediately read him the report before we even got from the hospital to his office.

Now I know I didn't look great...stress, a bout with cancer...yes, I probably looked a little worse for wear but I was in no way prepared for what came out of the xray tech's mouth.
As Heather was holding up The Toots, I was pulling her shirt off over her head. As all you moms out there know, we can be a bit rough with our own children and the Toodle Bug was no exception. Heather on the other hand, spoke for Tessie and said something along the lines of "mama, take it easy!". The xray tech looked at us and said to Tessie "Is GRAMMIE being too rough with you?". GRAMMIE?????? What the f*@k????

Of course, me being me, I could not let that just lie. I glared at the poor xray tech and practically shrieked, "Do you think that I am HER (nodding my head toward Heather) mother??!! She is OLDER than I am!!" I pointed to Tess, "I'm her mother!".

Oh, that poor, poor woman. See, I can have a little compassion for her situation now that a few years have passed since 'the incident'. She got pretty red in the face and tried to stammer out an excuse like "well, she said mama to you" and I'm all, "she was speaking for Tess!". I was beyond pissed!

Meanwhile, Heather is just in gales of laughter. A regular hyena.

So the lady gets the xray pics that she needs and I storm out of there in a flurry of indignation. Heather is about ten feet behind me with The Toots and is still laughing.

We get to Dr. Stephenson's office and as he is checking out The Toots, he is talking about how hard it must make the day for us to have to catch a ferry and race to the hospital and then to him. I, in a huff, tell him all about what has just happened at the hospital. Very dryly, without a hint of sarcasm, he says to me, "yeah, now THAT'S a bad day!"


Sunday, May 23, 2010

I like big butts and I cannot lie...

My sweet angel, The Toots, loves inappropriate music. And due to the fact that we have two teenagers in the house, she gets to hear plenty of it.

One song in-particular...Baby Got Back by Sir Mixalot.

I think it all started when Blake and Ellie were watching an episode of Friends. The one where Ross and Rachel get their baby to giggle for the first time by singing that song to her. It is a rather catchy little ditty so I started singing it. Next thing I know, The Toodle Bug is giggling hysterically.
Well, naturally I sang it again. Same reaction. She just loved it! Pretty soon, we were all singing it to her just to make her laugh. Blake, Ellie and me...singing, err, rapping, "I like big butts and I cannot lie.". (I am expecting my Mother of the Year Award any minute now.)

But what can I say? Anything that makes Tessie laugh like that I will do. Shamelessly. I have made a fool of myself on more than one occasion just by trying to make her laugh.

One such instance that stands out was a recent visit to Childrens Hospital. It was when we were getting her ready to start the Ketogenic Diet and she needed tons of blood-work to check all sorts of different things.

After her appointment with the Dietitian and Epileptologist (is that a word?), we were sent to the lab to get her "levels" drawn. I was expecting the usual one or two vials of blood. They told me they needed to draw sixteen. SIXTEEN vials of blood from my little Toodle Bug! They needed my permission to draw that much because it was the limit they could take for her weight. I was shocked but agreed because what are you supposed to do in that situation? It's not like they weren't going to need it and we don't exactly live next door so I gave them the go-ahead.

Now, Tessie is a tough stick even for the most experienced phlebotomist so I knew this would be tough. They began but after getting only a few precious vials of blood, they blew a vein. They tried another vein and again, a few vials of blood and it blew.

By this point Tess was reaching her breaking point. She wasn't crying but she was getting mad and squirmy which makes it that much harder to get blood. Before they stuck her again, they asked me if I wanted them to stop. It was hospital policy that after two sticks it was up to the parent whether or not to continue. I said "yes" please continue. We had come so far and they were the best so I knew it would be no better another time. They switched phlebotomists, again hospital policy that after two sticks a new person had to be brought in to try, and we began again.

But before I let them make what was, thankfully, the final stick into Tessie, I told them I had to sing to her to keep her distracted from what was happening. I apologized for having such a bad voice and then, apologized for what I was about to sing. They just laughed at me, assuming, I think, that I would be singing something like twinkle, twinkle, little star.

So, without looking at anybody but Tessie for fear of seeing the look of pure disgust in their eyes, I began..."I like big butts and I cannot lie. You other brothers can't deny. When a girl walks in with an itty bitty waist and a round thing in your face you get sprung.".

It was working. Tess had stopped squirming and was even smiling at me while half of her blood supply was being sucked from her body. Uh-oh..That was the only part of the song that I knew! Damn! Now what?

I finally dared to look at the three phlebotomists in the room and said, "that's all I know of the song.". I swear to God, without missing a beat, one of the lab techs picked up where I left off and sang the entire rest of the song to her. Before we left the room, EVERYBODY was singing about liking big butts.

Laughing and singing in a lab room at Childrens Hospital. All because it made a little girl smile.

Saturday, May 22, 2010

I wish I had a wheelchair...

Tessie was diagnosed with "global developmental delay" around the age of 11 months. At the time, all of the therapists that were involved in the early intervention process along with her pediatrician had no idea how severe her disabilities really were and told me they thought she would improve with physical and occupational therapies.

Deep down I knew better (I still was in major denial but my gut knew what my heart and mind refused to believe) but we went into it full speed ahead.

By the age of two it was becoming obvious to everybody that her disabilities were more severe than they had thought and so we had to dive into the world of special needs equipment. And let me tell you, there is nothing more heart-wrenching than being forced to admit that your child is in need of this equipment because they are not progressing in their development. It is a post worthy of itself so I will suffice it to say it was one of the first and hardest steps that I took in accepting that we had a "special needs" child.

She was fitted for a special car seat that would fully support her, especially her head which she had trouble holding up. This seat was like a LazyBoy recliner. Huge and overstuffed but extremely comfortable and most importantly, safe.

By this point she had moved from a traditional stroller to a wheelchair type stroller that afforded her total body support because she was so weak she couldn't hold herself up. Also, part of her physical therapy included a standing frame (a medieval torture device where you strap your kid, like Christ on the cross, into a frame that forces them to stand).

My niece, who is six months older than Tess, absolutely loved all of her special equipment. She always wanted to be put in it and would get mad if The Toots was using it when she was at our house.

Because my niece was so young it was hard to explain to her why Tessie didn't run and play with her or talk to her. Why was it okay for Tessie to scream in the house but she got in trouble if she did? Why, at the age of four, did Tessie still get a "baby cup" (before Tessie's G-tube surgery)but she had to drink out of a big girl glass? And most importantly to her, why did Tessie have all these "cool" things to play with but she didn't (standing frames, wheelchairs, mouthing toys, etc)?

And the day that my niece saw Tessie's "real" wheelchair (Tess got fitted for a "real" wheelchair around the age of four) she was in awe. She ran her hands lovingly along the frame and down the armrest, gave a very heavy sigh and longingly said, "I wish I had a wheelchair!". Her mom and I, seeing the obvious irony in such a statement, just cracked up.

I said to my niece, "I know, Tessie is so lucky!". My niece nodded in total agreement. I assured her that she could "ride" in it anytime she came to my house but I could tell that she really wished for one for herself. It still cracks me up whenever I think about her saying that.

But with that innocent little statement my niece taught me a very valuable life lesson that has helped me time and time again in this journey with The's all about perspective.

Wednesday, May 19, 2010

flights of fancy...

So I have mentioned before that I live on an island off the coast of Maine. We are approximately 13 miles by ferry to the mainland. We do have a small, dirt, airstrip that small planes can fly in and out of, weather permitting. Our fair Isle cannot be reached in inclement weather. And vice verse. When the weather is really bad, we cannot get to the mainland.

As you can imagine, when the wind howls and the rain/sleet/snow is flying, I am super paranoid about The Toot's health. And for her part, my little angel prefers to get sick on the weekend, after office hours, when the weather report is reading like something out of a Stephen King novel.

This past winter and spring has been one crisis after another for our family with regards to Tessie's health. And don't be fooled. When one family member is in
crisis, the WHOLE family is in crisis. My older girls are unbelievable at handling it. I, honest to God, couldn't be more proud of Blake and Ellie. When I grow up, I want to be just like them.

But I I was saying, Tessie's overall health was getting very scary.

She began having uncontrollable seizures last September and they continued to get worse with each passing month despite all of our best efforts and three seizure medications in our arsenal.

Not to mention that Tess gets sick so easily with everything that is going around. Her immune system is shot.

One such instance comes to mind when I think back over this past winter. It was the beginning of February and Tess seemed like she was getting a cold. After day two of coughing and just not acting like herself, I took Tess to see our nurse practitioner on the island. The most amazing "Dr. Jen". Jen looked Tessie over and decided that she wanted another set of eyes on her so she called in the "official" doctor.

They decided to take a set of X-rays because they weren't loving her lung sounds. The X-rays showed and "infiltration" of the lungs but was it asthma? Pneumonia? They weren't sure and because Tessie can go downhill very fast, they gave her a shot of antibiotic and sent us home with an appointment for the next day to check in.

A few hours later Tessie had a coughing spell that I didn't think she was going to come out of. I am not exaggerating. She choked on a glob of phlegm and it got stuck in her windpipe and she couldn't breathe. I was watching her turn blue when I rolled her to her side and finger swiped inside her mouth/throat to remove the phlegm.

I was all alone and scared to death. I gave her oxygen and called our private duty nurse at home and reported everything that had just happened. She instructed me to put her pulse ox monitor on her and keep an eye on her heart rate and on her oxygen levels. Well, her oxygen levels were okay, not good, but okay, however her heart rate was in the high 170's. This was bad. Very bad. I started shrieking into the phone, "Sheila, it's 165, now it's 170, now it's 175!". Sheila very calmly told me to hang up, call the doctor and pack a bag.

When I called the doctor back it had only been three hours since we had seen him at the medical center. He did not like what he was hearing at all and called out the ambulance to my house as well as the airplane to get us to the mainland hospital as fast as possible.

Now this is a small island and naturally I know quite well most of the ambulance crew. One of the guys that day was a classmate of mine from high school, not to mention the father of Ellie's best friend and the other guy is married to a relative.

While I was very scared about Tessie, the sight of them helped calm me. Plus, they are professional without being cold. When I am that stressed I need to joke around, that is how I handle it without breaking down. These two let me joke and joked back without making me feel like I was a bad mom for laughing at such a serious time. I think they knew that I needed the outlet and besides, I assume it is better for them that I laugh (if even a bit hysterically) then be falling apart or even worse, in their way trying to tell them how to do their job.

Anyway, we got to the airstrip and the plane was waiting.

Oh wait, I'm sorry, did I call it a plane? I meant the Tonka Toy that was supposed to somehow get us safely to the mainland. I am not kidding. This looked like something the Wright brothers would have passed over as unsafe.

Okay, I'll be honest here. I am a nervous flier under perfect conditions so you can imagine my horror.

So, we got me into the plane, The Toots on my lap, and the EMT next to us with a jump bag for Tessie in case she needed suctioning, oxygen, etc while in the air. The plane revs up to begin take off and it backfires. I swear to God. BANG!! Like a gunshot. I grabbed even tighter on to The Toodle Bug and looked at Burke (EMT) and said, "I don't like this! That is not an encouraging sound!". I think my eyes must have been bugging out of my head because he just kind of looked at me and laughed and said "We're fine.".

And did I mention the smell inside the plane? It was like when your grandpa is working in his tool shed on the lawn mower. Kind of a gas and oil mixture. As if they has just performed some type of major engine repair. We were gonna die. Oh my God.

We somehow managed to get up in the air and the pilot is on course for the mainland when I decide that clearly someone needs to be ready to crash land this death trap so I start looking out of my little window for islands that we might possibly be able to land on.

Burke is keeping an eye on Tess but, not knowing her that well, he needs me to tell him how she is acting. "Is she having a seizure?", he asks me, "Do you think she is doing okay?". I wanted to scream at him that couldn't he see I was busy trying to figure out a way to crash land this hunk of junk, or worse, trying to prepare for a fiery midair explosion. What I said instead was, "I don't think so. I think she is okay but you may want to check out the pilot. He doesn't look so hot. Like maybe he is well on his way to passing out." Burke was cracking up at me but I was only half kidding. The other half of me was trying to finalize my plan of handing Tessie over to Burke, throwing the passed out pilot out of the cockpit, and flying this bird myself.

No, I do not know how to fly a plane. That did not factor into my plan however. My plan was to grab the yoke (see, I do know something about planes) and grab the mike and yell for help and directions. I was all over it.

And you can probably guess what The Toots was doing during all of this...yep, she was giggling. Sick as she was, she just loved the plane ride and, also, I think she was getting quite a kick out of my fear.

At any rate, as you must have figured out by now, since I am writing this not from the great beyond but from my living room sofa, we made it. The pilot did not pass out. There was no need to crash land on a small island and there was most definitely no fiery explosion.

An ambulance met us at the airport and whisked us off to the hospital. The Toots was admitted into the special care unit for four days with aspiration pneumonia and RSV. She was a very sick little girl.

I was still terrorized by my near death experience and tried to tell my hubby about the very close call we had had in the plane. His response? "Yeah, all small planes smell like that. You were really scared?".

Well thanks for the love.

Monday, May 17, 2010

Who lives in a pineapple under the sea?

My sweet, lovable, adorable little Toots has an addiction.

That's read that correctly. My almost seven year old is in need of an intervention.

How could it have come to this without me noticing? What signs did I miss? Okay, yes, she really enjoyed it at first. I would watch The Toodle Bug get all squirmy and excited when she got it. And, okay, so maybe she would become very agitated and grumpy if by, say noontime, I had not given it to her yet. And maybe I started noticing how she would let out a very audible, relieved sigh after she got it.

So what?! How was I supposed to know it would get so bad. Now she needs it two, three times a day even. Every single day.

Her need has gotten so bad that on our last trip to Boston I forgot to pack it...Oh God! What to do, what to do?! The Toots was PISSED! She wouldn't look at Brianna or me. She wouldn't smile. There was none of her usual giggly, happy noises. She simply threw her head down and scowled. I was in a panic.

I raced from place to place to try to get her her "fix". Yes, I am an enabler now leave me alone.

I had people that worked in one store literally calling another store to see if they had it while sputtering something along the lines of, "you can't imagine how badly I need to get this!". When I went to a store that didn't have the item I guilt shopped to make up for it.

I bought The Toots dresses, pajamas, shirts, all to win back her favor. Didn't work. She was having none of it.

I finally managed to find the item in South Portland. The relief I felt was palpable. I raced out to the car with the item held high above my head yelling, "Hold on Toodies! I found it! You can have it in just a second!". Pathetic, I know.

Her addiction? The Spongebob Squarepants movie.

Yep, that's what the drama was all about....A square yellow sponge.

And the just the TV show won't do anymore. Oh no. It HAS to be the movie. I cannot figure it out. All I know is when I finally flipped down the DVD player in the van and she saw the opening credits, my Toodle Bug was back. She was all smiles, giggly, squirmy and even squealing with happiness.

I swear to God it reminds me of that show, Intervention on A&E when the druggie they are following around finally scores his/her dope. It is the craziest thing I have ever seen.

And what's worse was that when it dawned on me that I had not packed that movie, I searched from store to store all along the coast from Rockland to Portland trying to get it. I felt like a horrible mother and kept repeating, "I can't believe I forgot it. I thought for sure that I had packed it.", in a haze of panic.

But I refuse to let this happen again. I've learned my lesson about the dangers of addiction...

I bought THREE of the movies (one for the house, one for the van and one downloaded onto my laptop)....

Saturday, May 15, 2010

If Tessie could talk...

Most everyone who has ever met The Toodle Bug has, at one time or another, said to me, "wouldn't you just love to know what goes through her mind?". Uhmmm...yeah, I would, but at the same time Tessie does "talk". There are times when she speaks volumes without uttering a single sound.

For example, when I go to get her up in the morning and she turns away from me in her bed. What she is "saying" is, "Mama, I am not ready to get up yet!". When she wants a sip of what you are drinking she "says" so by sticking out her tongue and looking at your glass. She "tells" me she wants to go to bed by putting her hands up behind her head.

She also can cop quite an when it is time to go to school. when I tell her that we have to go she will refuse to look at me. In fact she will look anywhere else except at me. What she is "saying" is, "I can't believe that YOU are making me go there. You know I hate it. You know I just want to stay home with you. Mama, you are mean!".

Or when I turn the TV on to watch the news (okay, Young and the Restless), she looks at me like she cannot believe anyone could be so stupid and then looks back and forth between me and the television with a totally annoyed and put-upon expression. What she is "saying" is, "Mama, no way. This show is stupid and you need to put on Spongebob Squarepants right now!".

And God forbid I actually leave her for any length of an afternoon or (gasp) a whole night! Upon my return home, laden with gifts to win back her love, she is shouting at me in the silence that I get. She will not look at me, she will usually cry at the sight of me, and then she wants nothing to do with me.

I, for my part, will cuddle, kiss, give presents and shamelessly beg for her forgiveness. This it what she "yells" at me..."Mama, how could you? You left me! You know I do not like it when you are gone and you left! I cannot believe you! I am so mad at you! Don't ever leave me again!".

If you are very, very lucky, she will "tell" you that she loves you by leaning in to you and then licking the side of your face. Then she will lean back away, look at you as if she has just bestowed you with the crown jewels and wait for you to say "thank you" to her. Then she will smile, all satisfied with herself.

The truth is, The Toots does talk. It is just a matter of taking the time to try to understand what she is telling you.

Thursday, May 13, 2010

I heart NY....

Last April we took a family trip to New York. This would have been April of '09. The trip was a Christmas gift from my dad and step-mom to our whole family.

I had been to NY several times because I absolutely love it. I love the energy and excitement. I love that nobody knows me. I love seeing the Statue of Liberty and The Empire State Building. I love buying fake purses and Rolex's from people selling them from big garbage bags.

Anyway, like I said, I had been to NY before but my kids never had. To make the trip more of a vacation for us, my dad even had one of our private duty nurses for Tess come with us to help. We also had gotten tickets to see South Pacific at Lincoln Center Theater during a planned night out with Blake and Ellie while Tessie stayed back at the hotel with the CNA. We couldn't wait to go!

The first day in the city we took a taxi to Battery Park to get the ferry out to see lady Liberty. I want you to picture what this must have looked like to a perspective taxi driver. As a group we had my dad (a big guy in his own right), my step-mom, my brother, his wife, his five year old daughter and their baby in a stroller. Then there was me, my hubby, and our three daughters (one in a wheelchair) plus our CNA. It quickly became apparent that, in this case, the key would be to divide and conquer. We split up in the hopes of getting a cab faster. In the end, my older kids went with my hubby, my dad and step-mom went with my five year old niece and my brother and his wife went with their baby. Brianna and I (the CNA) went with Tessie.

Here's an exercise in frustration:Try to hail a cab in NY with a wheelchair in tow. It is like an episode of Mission Impossible. We actually took to hiding Tessie and Brianna on the sidewalk while I went into the street to hail a cab. When one would pull over for me, like a magician pulling the rabbit out of the hat, Brianna and Tessie would appear and we would whisk Tessie out of her chair, into the taxi and onto one of our laps while the poor taxi driver was left to figure out how to put a wheelchair that doesn't fold into the trunk of a his cab. But this was NY...thus he wasn't stumped for too long. While Brianna and I watched out the back window, he threw the chair in sideways, lowered the trunk as far as it could go then bungee corded the trunk to the bumper to keep it from flying up. Success! Then we sped off into traffic.

If you have ever been in a cab in NYC you realize that when I say sped, what I mean is that we were taken on a death defying ride through a city where it seems like sport to try to get as close to hitting other people without actually killing them while constantly honking the horn. It is also an almost sure way to get whiplash. Brianna was holding Tessie in a vice grip while we screamed through the city out to Battery Park.

When we finally got there we struggled getting Tessie in her chair and to find the rest of our little group. Ah, there was Charlie waiting on the curb but everyone else had ditched us and already gotten into the long line that was waiting to go through security to get on the ferry.

It was a very cold and windy day. Especially considering that it was April. We were freezing. I went to a vendor that was off to the side of the waiting throng of people and bought Tessie a winter hat to put on.

A few minutes later a person who worked for the ferry service saw us with Tessie and motioned for us to bypass the line and bring her right into the building that everyone had to pass through for security. As we whizzed by the rest of my family, all huddled together to keep warm, I actually yelled out "See ya, suckers!". Nice, huh?

We all got scanned over, had to take off our shoes, hats, open our coats, purses, etc. I knew without turning around, when my father got inside. I could hear him griping about how ridiculous it was to frisk a baby when they asked my brother to lift little Becca up out of her stroller to take a look. I knew it would get bad when they went for Tessie. They were very nice and did as little to disturb her in her wheelchair while still doing a search. My father, again, thought it was ridiculous. After 9/11, I was glad for the level of security.

At any rate, we all got on the ferry and rode out to Liberty Island.

As soon as we got there I took The Toots and made a beeline for the gift shop. There is just something about a touristy gift shop that pulls me forward like a moth to a flame. I love them! My hubby was heard to mutter something not too flattering but I forged ahead undeterred. Plus it was just so cold that I really didn't want The Toots outside more than was necessary (that is my story and I am sticking to it!).

We stayed for a while and walked around the Statue. We ate lunch then decided to try to catch the next ferry back. We got in line just as the ferry was getting ready to pull away from the dock. Even though they had refused the people in the line ahead of us, when they saw Tessie they pulled back up to dock, opened the walkway to the ferry and came and got us to get on. Some of the people in line were mad while a couple actually tried to pretend that they were with us just so they could get on that ferry. I couldn't believe it and quickly told the deckhand that, no, they definitely were not with us.

By the time we got on the boat it was packed. We could hardly move Tessie's wheelchair. There was a handicapped section but people were sitting in it and NOBODY was going to move.


To get a true picture of what was happening you have to know what my dad looks like. He is a big guy with a very large presence. A big, Maine fisherman and he takes zero crap from anyone. The people on the ferry parted like the Red Sea. A silence fell over our little part of the ferry. I whispered "thank you, sir" as if he was a stranger doing me a favor and managed to get Tess over to the handicapped seating area.

After we got off of the ferry my husband told me what a woman near him had said that I didn't hear. She said, and I quote, "The handicapped kid already has a seat." meaning her wheelchair.

Now my hubby, being the wise man that he is, knew not to tell me that while I was anywhere near that woman. You see, I also have quite a bit of my dad in me and would have been more than happy to tell her where she could go to find the adequate seating that she so desired. Oh well....

Hey! Look over that someone selling Coach purses??

Ahhh, I do love New York!

Sunday, May 9, 2010

Boston or Bust...

So I was thinking today about some of our more memorable trips to Boston with the Toodle Bug (you will read about all of them at some point I am sure), and this one really stuck out...

It was in December 2008, December 14th to be exact. Oh yes, I remember the date EXACTLY.

Tess was scheduled for a routine EEG at Childrens Hospital but living on this lovely island that we do (will explain more on that later for those not in the know about remote Maine island living) we left a day early.

We had the drill down by now of course...Tessie needed to be sleep deprived so we had to make sure to have her awake for the day by 4:00am for a 10:30 test. It is never easy to keep the Toots awake when she wants to sleep but we were pros, had planned ahead and even went so far as to plan to get to Boston the day before to spend the night so that we could all get to bed early and not be completely wrung out the next morning. Plus, by eliminating an early morning drive, it would be easier to keep the Toots awake.

Ahhhh, we were so sure of this time, our middle daughter,Ellie, who was eleven at the time, had never been with us on a trip to Boston and really wanted to see where Tessie went. Now remember, we were pros at this point and figured that it would be a good experience for both Ellie and Ellie came along for the adventure.

The weather report sounded iffy (after all it was December) but we had a reliable four wheel drive vehicle and besides, aren't weathermen always wrong? We headed out and were making really good time...we got about to the halfway point and had probably another hour and a half of driving left to do so we pulled off to get gas.

Hhmmmmm....was that a snowflake? Now had it been a snowflake, we, as good, conscientious parents would have found a hotel nearby and made sure our precious cargo was tucked in safe for the night. We decided it was just really fat rain.

We happily (stupidly?)plowed ahead (plowed...haha get it?) and within the next twenty minutes the roads were covered with a slippery sheet of snow. My ever faithful hubby was at the wheel and confident this snow wouldn't last. Besides, four wheel drive, plenty of problem!

By the time we hit Massachusetts, from Kennebunk, Maine, it had been over five hours of relentless, blinding, twenty mile an hour, absolutely hellish driving. Keep in mind, Ellie was told another hour and a half over five hours ago and as I've stated in previous posts, the Toots just went with the flow, and being the most awesome kids that they were (are), smiled and we kept on trucking.

At this stage, I am sure that many of you are asking the obvious question..."what the hell is wrong with you people? Why don't you pull off an exit and get a hotel room?" Here is my answer...I, to this day, do not know. It was us against the snow and, as anyone who has ever met me will tell you, I play to win!

We actually passed a Coach bus on I495 literally stuck in the middle of the highway. Other unfortunate people had apparently run out of gas and abandoned their vehicles wherever they happened to stop running. We of course congratulated ourselves on getting gassed up and being prepared. Fools!

By the time we were going over the Tobin Bridge into Boston (passing one lone sports car completely stuck) it had been nearly seven hours for an hour and a half drive.

On the radio, a lady called in and said that she was stuck on 495 in a Coach bus...the same bus we had passed! We thought it was just so funny now that we were so close. We were so happy to be in Boston. We knew we could do it!

Never mind that I now had a migraine from the stress and Charlie would be leaving permanent finger markings on the steering wheel from gripping so tight...we did it! We were there! Ellie Belle actually dared to ask again how much longer and since we were only two miles away from our hotel we cheerfully called out "five minutes!" We were such morons. It was not sixty seconds after that when the traffic literally stopped. We could see our hotel from where we were. It was maybe five or six blocks away.

A man on skis whizzed by us. I was jealous of that asshole.

My poor little Toots, still smiling and sitting in a very wet diaper, who, remember, really can't talk except for about three functional words, actually whimpered...."mama.......up". That was how desperate things were getting. I felt so bad for her. Ellie, at this point, was just sucking it up.

But a scene was beginning to play out to our left. A big van was pulling out of a Burger King when it got stuck just at the point where the parking lot meets the road. We watched him spin his tires for a bit, spraying every pedestrian within a ten foot radius with dirty snow and were generally quite amused. It got better. The guy gets out of this piece of shit, nineteen seventies van and he is HUGE. MASSIVE. Dirty shirt, gut hanging out, the works. He sizes up the situation, goes back to the van and comes back out with the front floor-mats and puts them under the back tires for traction. Maybe the guy wasn't as dumb as he looked?

My very astute hubby on the other hand started to laugh and said to us..."keep watching. This is gonna be good." The fat dude gets back in the van, floors the engine, and the van lurches forward as the floor-mats go flying out from under the tires and HIT a pedestrian and actually knocks him to the ground! I thought Charlie and Ellie were going to die laughing. The van gets unstuck and the fat guy, seeing the man down on the ground, stops. So I am thinking, okay...maybe he isn't such a jerk until I see this tiny little woman get out to retrieve the mats! She grabs them, never acknowledges the man, and hops back in the van and away they just can't make this stuff up.

So we finally arrive at the hotel...nine and a half hours later. Let me say this again just to be sure you get it...nine and a half hours it took us to get from Kennebunk, Maine to Boston. NINE AND A HALF HOURS!

It is now nearing ten thirty at night and we finally check into out room. We get the Toots all settled in for the night and all fall, exhausted and just spent, into bed. We let Tess sleep in.

The next day at the Hospital, the nights storm was all the buzz. Tessie's neurologist said something about it being the worst snowstorm in Boston in fifty years. Ya think!?!

But it is Ellie Belle who makes the whole trip from hell worth while.

At the hospital entrance there are huge revolving doors for easy access for wheelchairs, crutches, etc. Ellie, upon seeing these doors, stops dead in her tracks and says, "Mama, now THIS is class!".

You got it kid. Nothing but the best for us!

Friday, May 7, 2010

don't shoot the messenger

So we just found out we get another night of luxurious accommodations provided courtesy of Childrens Hospital. Who needs 'Make a Wish'? Haha....

Today's adventures began with the usual routine of needle sticks, finger pricks, urine analysis and meds coupled with a visit from the "team". The attending physician was mildly concerned with her low sugar levels but thought we would get sprung today. Oh to be so fortunate!

On an endorphin rush from the good news, we packed up, got the Toodle Bug washed and dressed and proceeded to wait for discharge orders. But a nagging little thought wouldn't leave me alone...the doctor who thought she should be able to get released made and off the cuff comment that went something like..."but I will discuss with her regular doctor and let her decide". Ask not for whom the bell tolls;it tolls for thee! Naturally her regular doc said "um, NO!"

The poor woman they sent in to tell us the bad news actually peeked around the curtain and sized us up before deciding we weren't going to totally lose it on her when she told us. So I told her, "don't worry. We won't shoot the messenger".

So here we sit. My hubby by my side. And he won't stop asking me questions. He is like a hyperactive kid who has been put in a cage and I am the only toy that they gave him to play with. Serenity now!

The real adventure began with a noxious odor emanating from Tessie's bed. Oh crap! Literally...there was crap all the way up her back, on the wires connected to the monitors, on the chuck pad under her, on her clothes and by the time we were done, on me!

And let me tell you a bit about the smell from a kid who regularly gets diastat (emergency seizure medication)...well, there simply are no words. But the room cleared out mighty fast and my hubby and I were left to fend for ourselves.

We managed to get her clear of the crap after much discussion on how to approach the situation. Much like planning an attack on the enemy I suppose. Very Strategic. The Toots just went with the flow.

The nurse sent in a cleaning lady to try to deal with the heinous odor and she all but sprayed the cleaning agent on me. I thought the smell was getting better, (oh the powers of a mother's love), when our little roommie and fam went to come back into the room after her physical therapy session but made a quick u turn in the hallway outside of our door.

The dad was heard to mutter..."let's just keep walking".

Do we offend?

Thursday, May 6, 2010

gotta love hospitals...

As I start this blog I am in a double occupancy hospital room at Childrens Hospital Boston. The aforementioned Tessie-toodles is being started on the Ketogenic diet. For those of you not in the world of seizures, it is a high fat, low carb/sugar diet that will theoretically help us get some kind of control over her seizures.

Did I mention we have a roommate? Oh, I did? Did I mention that she is a screamer? Oh yeah....ALL night and ALL day! Did I mention that I am not at all politically correct and while I know intellectually I should be going on and on about how sorry I feel for this kid and what a little trooper she is, what I really want to do is yell at her to shut the hell up!

Yes, I will burn in hell someday. No need to tell me that. Meanwhile, little Miss Tessie is all smiles and giggles. God I love that kid!

Let me tell you a bit about Miss Tessie since this IS my first time blogging and all...

She is fed through a tube in her stomach. She cannot walk, talk, eat, go to the bathroom, or basically move at all independently. She has a severe seizure disorder just to make things interesting. Hence the journey into the land of the Ketogenic diet.

To sum up my little Tessie...she is a 40lb, 43" tall bundle of pure joy and will have you eating out of the palm of her hand with a single smile. Don't believe me? Stay tuned...I will prove it to you.

Tess also has two older sisters, Blake 16 and Ellie 13. They are the lights of her life and when they come over to her to talk or play or better yet, maybe just sit and snuggle, you would swear the kid had not a single problem in her life. Ahhh to be so contented!

I will go back to previous travels with Tessie but for this day, and the purpose of starting this out in the present ( I am anal about things like that), I will tell you a quick snippet of our adventures here at the hospital.

We started by being told we would be admitted at 1:00. We actually got a room at 5:30 which meant roaming a germy, gross hospital with a medically fragile child for 4 and a half hours. Good times, good times.

Then, just to add some excitement to our day, Tessie had a big ole' seizure in Au Bon Pain in the lobby. We whisked her onto the PUBLIC couches in the main lobby and actually had to give her oxygen and rectal diastat right then and there. The poor man in the business suit next to us will never be the same, I fear!

Well, that is our adventure for today.

Probably not much to an outsider but to any parent who has been there, and I am finding more and more have all the time, you will  understand my horror mixed with laughter at the situation.

And I've already told you about our roommate, The Screamer...enough said!