Thursday, March 31, 2011

Day 48: Insert Clever Title Here

Here we sit. It is almost 6pm Milan time (when I start this post) and we are in our seats awaiting our dinner for the night. Giovanni is eating his appetizer that I gave him from my cabinet of food. He is doing great. He looks like he should be outside running around in the beautiful spring sun with his brother and sisters. I hardly think he could handle such excitement and fun right now.

As of today, his Neutrophils are still at 300. His hemoglobin is great...maintaining on its own. After my last post on Sunday about them saying the counts were not reliable so we would wait until Monday they reported his platelets as 8,000 on Monday. I could NOT believe that number. They were 99,000 two days prior and went up to 99,000 on their own from 88,000. I swear it had to be an error. He ended up getting a platelet transfusion obviously and the next day his platelets were 164,000. They now sit at 128,000. I just don't know what else to say about the counts. I am honestly sick of them, ha. I am to the point I don't even want them to tell me what they are since they really don't tell us when he will be leaving. Maybe I will tell them I just want to know every few days and hopefully after a few days it will be good news. I hate how each day hangs on having them come in and tell me the counts. Giovanni is really doing awesome and they seem surprised that he has done so well since it was not the same for the first child or the other one here now. Not a single infection or anything despite being neutropenic this long. I of course insist it is because he is breastfed still but know there are likely multiple factors contributing to his strong, healthy little self.

The weather here has been beautiful which is a welcome relief from the rainy, dreary days. I love the time I have home with the kids. Right now, I am here for about 40 hours straight and then I go home for about 8 hours to be with Aria, Miles, Liviana and Brad while Tarah comes up to the hospital. I really get my energy back during those visits that allows me to face the hospital again. Not that Giovanni isn't a total delight to be with while I am here...he really puts smile after smile on my face...but the hospital itself...does not. When I am boarding the trains to head back to the hospital I feel myself getting more and more anxious, breathing faster and feeling stressed. Giovanni helps put my mind at ease and Tarah and I spend a while chatting and catching up when I return...and that all helps the anxiety.

Yesterday I took Liviana outside on the balcony for some sun. I sang songs to her and took her clothes off and let her soak up some the rays. She was SO cute. She laid back on the pillow I had behind her and closed her eyes with a big smile on her face like she was unbathing in her diaper on the balcony. Such a precious girl. Her cheeks started to get all rosy from the sun so we went back in but I think we have plans for some sunbathing again in the future. She really seemed to love it.

Aria and Miles decided to switch beds. They started out sleeping together in a queen sized bed but they ended up having issues like, "stop taking my blanket, stop touching me", etc so we switched Aria to Tarah's bed and Miles to the cot like bed. That seemed to be working great. Miles was sleeping much better by himself. Then, Aria said that her bed was too hard...and I am going to be honest, when I laid on it, it is. She said she can't sleep on the hard bed because it gives her bad dreams. That launched into a cute conversation between her and Miles and his concern for her dreams but willingness to sleep on the hard bed because of the cool shelves around it. Aria was sure to move the calendar she marks days off of for when Giovanni comes home to her new bed too. They are so sweet...I am blessed to be their mother.

I asked the kids the other day who their best friends were. Miles said, "William from my class" (I am unsure if William is aware of his status as his best friend), Aria said, "My whole class" and Liviana said, "GeeeeMani" for her brother Giovanni. It was so cute! I think G would agree and I can already picture him trying to climb up on the couch to sit next to her.

I have been organizing all of the photos off my external drive when I am home. It has been impossible to find anything and when my computer crashed in September I lost my program I organized it all in so I had to start over. It has been like a blast from the past going through all of the images. I can view RAW image thumbnails in the software so even photos I have not processed are visible. The kids have all sat with me as we went through the photos, remembering times, smiling, laughing, oooing and awwwing. It was so wonderful but has also left me with so many thoughts, so much contemplation.

As I went through the images I saw Liviana playing in the yard, running in the sprinkler, bowling, climbing on chairs, playing in a pool..being a normal 2 year old. The photos were from May, June, July...even October. It is so bittersweet to look through them. It got me thinking...if someone would have told me in May, that we would be told, in 6 months that our daughter and son would be diagnosed with a fatal disease and there is nothing we could do about....how would we have lived our lives differently during those 6 months? My first thought was that I would not have worked so much and at the very least, I would have figured out how to be a night owl again and process at night rather than the day when the kids were up. I would not have rushed to answer every e-mail and inquiry right away, I would not have been a slave to the my computer and my work. Don't get me wrong, I love my work, I love my clients but really...what is ever more important than your kids and your family, especially when you do not know how long they will be with you? I would have focused more on living in the moment and not worrying about a deadline, a blog post, getting a gallery uploaded. The moments with the kids should have always belonged to the kids and not my mind of a million tasks that needed to be done.

It is easy in hindsight to sit and think, coulda, shoulda, woulda. I ask each of you, what if you were told the same thing...in 6 months you will find out one of your children has an incurable, fatal disease. What would you do differently and why do we (me) have to wait to find something like that out before we make those changes? Why can't those changes be made now? If you thought of things in your mind, that you would do differently....do them now. Why wait until you realize that you have missed too many moments? Why not live every moment so you don't have to look back in hindsight? It all sounds ideal but in reality it is simple. It would have been simple for me to find ways to not do my work during the day so much, or create a better schedule, or alter my business plan so I wasn't doing so many sessions some weeks. It would have been so simple and then I would have had even more photos to look back on and smile, and reminisce and remember.

Giovanni is in bed, hopefully having sweet dreams of being home, playing with Aria, Miles and Liviana. I have been told that Aria and Miles are in bed at the flat and Brad is getting Liviana to bed as I type. Being together as a family is all that is on my mind. I am not going to worry about the counts going up or down or all around. I am just focusing on us all together.

That is all for now. I appreciate you all!

Hug Your Babies!

Wednesday, March 30, 2011

Day 47: A REALLY short post

I had an intention of sitting down and making a big post tonight about the last few days but I am very tired and I think the crib is calling my name :). We are still here obviously. G is absolutely perfect clinically. He looks and acts like any other 14 month old you would see anywhere. Those pesky blood counts are all that is keeping us here and it is a roller coaster.

I will post details tomorrow. Thank you all for the continued support. I read all of your messages and e-mails and even if I don't respond right away your messages mean so much to me.

Hug Your Babies!

Saturday, March 26, 2011

Day 43 and 44: What a week

"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has." This was one of my favorite quotes from Margaret Mead in my graduate school days. We often used it during community building exercises to help motivate people to be the change they wanted to see around them. I saw this in action this week more than ever before. No, they didn't change THE world but they have indeed changed OUR world. 741 people came together in an amazing way and
have impacted our family more than they could ever know.

Jennifer Morais is a fellow photographer and mother. We met online 2+ years ago in a small group of photographer/mothers on Cafemom. We have grown together in our work and our families...both adding a 4th child to our brood. We have supported one another professionally and emotionally. She put together a Facebook page and planned to hold an auction to raise money to help our family. I remember early last week she was pushing to have 300 people "like" the page before the auction started. She hoped to raise $1500 to help us with our many expenses here in Italy and back home in Omaha. What she started was a snowball effect of 741 people coming together and raising a stunning $5441 for our family! The stress relief that brings us is HUGE. We have medical bills, our rent, utilities, other bills, our expenses here which is basically like living at home except more expensive. We returned our van to the car lot the day before we left and asked to be refunded on our deposit and payments (which they did) because the vehicle had too many problems. When we return we don't have a van for our kids or one that is going to be able to accommodate Liviana who will not be able to ride in a carseat anymore. This auction and these wonderful people have gotten us one step closer to that.

Jennifer has talked about holding another auction and I know there are other people already interested in donating. You can visit the page on Facebook HERE. Jennifer will be keeping everyone updated on a future auction.

While the auction was going on another group of women, most of whom I have never met, were planning a fundraiser in Omaha called the Mom Prom 2011. Sara, Veronica, Judy, Cat, Jennifer, Joy, Jessica and I am sure many others have planned an awesome event for April 22nd at the Regency Lodge. You can visit the Facebook Event page HERE. The plan is that the Mom Prom will be held each year with a new deserving family which is really amazing (I know I use that word way too much...*must find thesaurus*). I cannot wait to be able to help plan the event next year for another family (and dance the night away in a fabulously tacky dress). I cannot thank you ladies enough for what you are doing for our family. I feel like we are all friends already.

Grrrr, dealing with nurse issues as I sit here and G is sleeping. They are wanting to wake him up from nap unnecessarily. Must attend to the issue...shall return.

Ok....so it is a day later for my return. It is Sunday now and I am just getting back to my post. I made the nurse in the previous mentioned situation get a doctor because she was doing all kinds of things that were unnecessary and were going to wake him up. That is one of my biggest pet peeves is when they wake him up at night or when he is napping. A baby who is lacking sleep is not a happy or healthy baby. While I was speaking with the doctor she did just what I was trying to prevent...she woke him up. There really needs to be more balance between what specific medical things need to be done and what is best for the patient at the moment. It could have waited 20 or 30 minutes while he slept.

Anyway....onto those pesky counts. When I last posted I was insistent that the counts they gave me were wrong since they included a Neutrophil count back down to zero. Well...they were not wrong but they assured me this is normal and nothing to be concerned about. The next day his Neutrophils had gone back up to 200 and the following day they were 500! I was ecstatic. In the meantime he had to have another platelet transfusion and a hemoglobin transfusion. Those numbers the next day jumped right up of course to 100,000 and 11.4 respectively. The following day his Neutrophils had gone back down to 300 from 500..no biggie and his Platelets were 89,000 and Hemoglobin 10.4. Yesterday his Neutrophils remained the same at 300 BUT his Platelets went up to 99,000 and his Hemoglobin went up to 11.4. That is the first time they have gone up on their own and that is a huge sign. I don't have numbers today. The nurse rambled on about the lab not being reliable on Sunday so we can just wait until tomorrow. Very odd. We have been here for what...5, 6 Sundays and nobody has ever told us the Sunday numbers are junk.

We are soooooooooo ready to get out of here. I really think it will be soon. I think the fact that his two counts went up on their own is awesome and a sign of major progress. We are not talking a lot about specifics of when he comes home around the kids because we don't want them to get their hopes up again and be disappointed again. I truly cannot wait to see all of their faces when he comes home. I think there will be tons of squealing, hugs and kisses. It is going to be an amazing day.

The weather here has been looking up (I type that as it is overcast outside). The next couple of days will be rainy but then it resumes the bright, sunny 65-70 degree days. Despite the beautiful weather the locals are still wearing their hats, scarves and thick winter coats. When the sun is shining and it is 70 degrees you will still see any child under 4 in a winter coat and likely a hat and babies are still in their snow suits. No exaggeration. I realize that their bodies are acclimated to their weather and what is cold to them is not cold to us. They should go visit Omaha right now with the snow on the ground.

One of our babysitters back home, Abby Fitch, sent the kids a package this week. It contained 4 of the CUTEST dolls, made to match each child. They have not put those dolls down since they arrived. Aria and Miles play with them constantly and took them to the market with us, to the park with Tarah and everywhere they go. Aria's doll has a dress on with perfectly mismatched tights, blonde hair and brown eyes which is SO Aria. She prefers dresses and skirts to pants and shorts and usually has her own matching style. Miles doll has brown hair and eyes and a cute blue and green outfit. Giovanni's doll (Which will wait for him at home since he can't have it at the hospital) is bald :) and Liviana's doll has a tutu on and cute blue eyes. She likes to touch the tutu of course. The dolls were all made by Suzanne and you can visit her Etsy shop HERE VERY cute stuff. Thank you again Abby!

Gosh...I always have so much to post about and I forget it all when the time comes. Oh...the lead doctor is pregnant and due at the middle to end of April. I mentioned to her that I would love to take newborn photos for her as a gift and she was thrilled and said she loved my photos. I am so excited to do some work while I am here. I look forward to taking more photos of the kiddos once we can get out but doing an actual session and a newborn session to boot is so exciting!

I was talking to one of the other doctors about Liviana. We were discussing her issues at birth...the Congenital Diaphragmatic Hernia, the VSD, the Hemivertebrae and don't forget her missing rib. She said how there is not an association between MLD and those of course and we talked about how they never found any overarching genetic explanation for her grouping of issues. I said how amazing she did with her CDH and shes came home breastfeeding, no oxygen support and she was completely normal and she was perfect....and I then added...she IS perfect. We both teared up then. I can't talk about her without feeling that burning feeling in my eyes each time. Every time I see her her beautiful face captivates me. That Livi spirit pours out even if she can't express herself like she used to.

I take tons of photos but I can't do anything with them at the hospital and when I go home for visits I either forget or I choose to not spend time uploading and going through photos. I feel bad that I am a photographer and I share photos few and far between but I just don't have much opportunity. I have full cards and take a ton though...I promise. When Giovanni is out of the hospital you will see more.

He is waking and I forgot everything else I was going to talk about. I adore my kids so much. They keep me going, keep me smiling and keep me focused on what it is we are fighting for.

Hug Your Babies!

Tuesday, March 22, 2011

Day 39: Still Hanging On

We are still here in the "box". I think I intentionally made a new post today instead of tomorrow just so I did not have to type Day 40. I am holding out hope that we will be out of here by the end of the week.

His Neutrophil counts were 200 on Sunday and I never heard yesterday but I am certainly hoping that was the start of a regular upward trend. It has to be...we have 3 anxious little ones waiting to see him at home.

Sweet Aria. She loves him SO much and talks about him constantly. She came out the other day when I was home for a visit and said, "Giovanni will be home in 3 days" and showed me a calendar she had made, complete with yarn to hang it over her bed. 9 days prior she heard us saying that it would probably be 12 more days so she went and made a calendar and was marking off the days...she only had 3 left so she thought she would be seeing him soon. It made me so sad for her. I told her that we were not sure of the exact day but it would be more than 3. She was so sad so I told her we could add more days and keep the count going and promised her he would be home soon. I saw the calendar yesterday still hanging above her bed. She is such a sweet, special soul. I feel like she has to much seriousness and adult things weighing on her 6 year old mind. She talks about Liviana all the time and brings up, "Remember when Liviana would come running into the room and tell us, "Guys, Calliou is on, Calliou is on"...she doesn't run or walk anymore though, I miss that". It breaks my heart that she spends time thinking about those kinds of things. It is a daily event. I am honored to have such a sweet, sensitive, caring, nurturing daughter and I have to believe that all of this will shape her into the person she will be as an adult...I know she is going to be an amazing woman.

I think Giovanni has been in the hospital too long. He thinks of all of the equipment around his bed as "his" and he tries to run it all. Today, when his fluid pump starts beeping he walks over to the pump in his crib and starts pushing buttons to stop it. He is running things around here. I can't even begin to express what an amazing little guy he is. He continues to smile, laugh, play and have fun all day long. The situation has not phased him. He has not been outdoors in 39 days, his feet haven't touched the ground in 4 weeks and he is either in the crib/bed or high chair all day long. He still thinks his life is a joy. I love how he knows I am smiling at him even with my mask on. His face lights up and his smiles are the cutest thing ever. He blinks his little eye lashes and brings me such joy...and peace each day. He is growing up so much here too. He has started saying, "Night Night" and he says "Hi", "Car" and then has a whole intricate language all his own. He was playing on the phone today after I got off the phone with Brad and it sounded like he said, "Hi Dada" plain as day. He is just such a doll...I can see why the kids miss him so so much and the nurses adore him.

I have been slowly working on this post waiting for the blood counts for the day. I asked the nurse once for the numbers and she showed me a sheet that had HORRIBLE numbers including zero Neutrophils and platelets of 22,000. I have to believe it was an old sheet or someone else's sheet all together. She did not speak English so I could not discuss the issue with her. I hit the button a few minutes later and told her I wanted to speak to a doctor (Medico) and she left. That was about an hour ago...still no doctor. It is SO frustrating to have my entire day hinge on those numbers and I can't GET THEM. I can't leave the room so I am stuck here and just have a little nurse button I can hit but honestly, I have had to wait 40 minutes for someone to come when I do call a nurse. I have hit the button again...we shall wait...again.

I am debating about going home for the night and letting Tarah stay with Giovanni. He sleeps better when she is here than when I am. I thought a nice to just sit and do nothing and not sleep either on a chair or in a crib sized bed with a baby would be nice.

Ever since I was young, when I go to bed I tell myself what I want to dream about. I guess I always thought that my subconscious would listen. Sometimes it works. I still often do this and my usual dream request is about Liviana. I want to see her running, walking and being the Liviana we all know from just months ago. She has changed so much in the past couple of months. She is getting so tall, her hair is darker, curlier and longer. I try so hard to imagine what it would be like to round a corner in the house and see her standing there, with that amazing smile as she runs up, hugs my leg, looks up and says, Mommmmy. It is so hard for me to even imagine what has happened to our lives, and her life if the last few months. The "whys" are still there. It is hard to imagine any "why" this would happen to her. There is not good explanation. I hear the "God only gives you what you can handle" phrase all the time but my issue is, what about her? What about what she can handle, what about what she should have experienced and had in her life. I WILL handle this all but it certainly doesn't always mean I can.

I am still waiting on that nurse and/or doctor. Someone is shooting off fireworks outside. Maybe that is a sign for good counts :).

Hug Your Babies!

Thursday, March 17, 2011

Day 34: VERY cautiously optimistic

I cringed when I had to type Day 34. How did we get to day 34? The walls have started to close in on me a bit. I was here for 6 straight days so we could minimize the germs from home where Aria and Miles were sick, being brought here. On the 6th day I got to hang out with Liviana (which I LOVED) for her EKG and MRI so I was out of Giovanni's room but still in the hospital. Livi spent her hour in recovery, was eating, drinking and telling me she wanted to watch Calliou on my $19 Pre-pay cell phone and I was just trying to get anyone to release her at the time they told me we could leave. I actually ended up leaving after a nurse took our her IV but then disappeared. I was beyond frustrated and the walls....they were closing in. That night, as I was getting Giovanni to sleep I started to have a little mini-panic attack. I felt like I couldn't breath as I suddenly thought of how many doors were between me and fresh air. I had to take many deeeep breaths to keep myself from freaking out and looking like a crazed person. I have claustrophobia issues and even though I am not in a small space I started feeling very trapped. Not good.

I have the prize in focus though. Sweet freedom for Giovanni and myself. Two days ago we were told it would be around 10 more days...could be 7, could be 13. He has to get his Neutrophils up to 500 and he needs to maintain 40,000 Platelets on his own without transfusion. This is where the caution comes in....he is still sitting at 100 neutrophils that he hit last week "early". He also is not currently maintaining 40K platelets. We know that he engrafted and that his bone marrow is growing, the blood cells are growing...it is just a waiting game and it feels like torture to me. I truly cannot wait to see his face when we take him outside and when he sees his brother and sisters for the first time again and they see him. I am so beyond ready to get out of here that I have to force myself to not get too excited so I am not let down when it doesn't happen. I still think he is SuperGMan, he is still healthy and strong. We just need Neutrophils and Platelet prayers, pronto!

I know you are all happily celebrating St. Patrick's Day with your green beer and festivities. Drive safe and enjoy. Today is a National holiday in Italy. It is the 150th Anniversary of Italy's Unification. Everything was pretty much shut down from what Brad and Tarah experienced trying to go to the store and drop things off at the hospital for us today. It rains here all.the.time. It is like the Seattle of Italy. It certainly adds to the melancholy of being stuck in this room when it is rainy and gloomy outside all the time. I am craving spring, warm weather and well....Omaha! I miss home so much. I really can't wait to get home and live some appearance of "normal" until we have to pick up and come here all over again.

I am off to bed. Send all the good vibes our way to get his counts up. We MUST get out of here!

Thanks for the continued support. Thank you to everyone to organized and came to the fundraiser on Tuesday. I wish we could be there to thank each and every one of you. Don't forget the auction on the 21st. They have tons of awesome auction items waiting for you to bid. You can join the page HERE

Hug Your Babies!

Amy

Tuesday, March 15, 2011

Letter to Liviana

My sweet girl. You have been on my mind...really, you are always on my mind. I am excited to see you today, even if it is to take you to a couple of appointments. You always light up my day. I laid awake last night smiling as I thought of all the things you used to do. I hate that they have to be thoughts in the past and that I won't ever see those things from you again. The smiles usually turn to tears. We fought for you from the time we found about your CDH when I was pregnant with you. I refused to let you go and it was you who showed what a fighter you were by breezing through your hopsitalization at birth. You really never looked back. You were and are, a spirited, spunky, amazing little girl.

Right now, if you could climb up on the stool in the bathroom and play in the sink...even if you made a mess, I would not stop you. If you could stand behind me in the kitchen while I cooked dinner, too close under foot to be safe, I would not ask you to move. If you wanted to stand behind me on my office chair while I worked, with you arms wrapped around my neck, I would let you squeeze as tightly as you wanted. If you wanted to laugh, play and bounce on the bed while I tried to get you to sleep, I would bounce with you. If you wanted to convince Miles to open the back door so you could go out and play, I would sneak out with you. If you wanted to dress and undress your doll and push her around in the stroller all afternoon, I would play with you. If you wanted to get in the refridgerator and bring out random food items to eat, I would help you make something. If you wanted to sit, and talk to me about anything under the sun, I would gladly listen.

I hate thinking that I miss you when you are still here with us. Still smiling and laughing. I know for everything that I miss so desperately seeing you do, you must miss doing them. You do new things now and still make us smile and laugh. You are a light in our lives...a beautiful girl who was chosen to be here for reasons far beyond what we could comprehend. I will love you forever and a day. I will never stop fighting for you, believing in your strength and praying for miracles. I can't wait to see you today sweet Livi.

Love,
Mommy

Friday, March 11, 2011

Day 28: It's a Bird....It's a Plane...

It's SuperG-Man! I know I need to *knock on wood* when I say that since he isn't out of here yet but I can't help but think he is something extra special. I am going to give up on saying I will post more often because I am always so surprised how long it has been when I start the next new post. I apologize. I was ill this week and had no desire to get on the computer at all. I am on the mend and feeling better and ready to start moving closer to getting out of here with our sweet boy.

Going back to my last post it seems like things have been up and down and all around. Last Sunday I was sitting here with Giovanni finishing lunch when I started hearing shouting coming from the room next to us. That is the room with the little boy from Egypt who is also undergoing treatment for MLD. As I started to get up the shouting turned to pounding loudly on the door. Their room and our room are the only two in this space, behind another door that exits to the main hallway. I realized that if she did need help she likely was unable to leave the room so I started to get up and go get someone's attention when I finally saw someone heading our way. I went back next to Giovanni and heard shouting and commotion as the nurse went running from the room holding a baby who looked very...VERY unwell. He then turned and went back into the room after motioning for other people to come help. In my mind, at that moment, he looked like he had passed away by his positioning and his skintone. My heart started racing a million miles a minute. I ran over and picked up Giovanni to protect him from anything and everything I could. Like I have so many times since we got here I wanted to run from here so fast with him. I did not know what happened yet, I did not know if it was as serious as it looked but all I knew is that Giovanni and that baby were going through the same thing and even though they are different children, it scared me to the core to think that something serious had happened to him and could happen to Giovanni. I waited, clutching my sweet boy as doctor, after, after doctor, after nurse streamed into the room. It was very quiet and I waited to hear a baby cry....hear something to indicate that everything was fine. Nothing like that happened but people were leaving the room rather casually like nothing really serious had happened. Finally, about 20 minutes later the nurse who was holding the baby when I saw him. I immediately asked if the baby was fine and he said, "Oh yes, he is fine" He went on to tell me it was a "fake alarm" and a communication issue with the aunt who was staying with him. Holy Cow! It did NOT seem that way at all. It was so very scary and I think my heart was racing non-stop the entire time until I heard he was fine. More doctors were in and out all night and an x-ray machine paid him a visit as well. I have since learned that he was pulled off of his line and it may have pulled on the port in his chest....I am not positive though. All I know is that he is fine, Giovanni is fine and that was a darn scary afternoon.

We had been awaiting test results for a long time regarding a possible infection with Cytomegalovirus. It is the most common infection post transplant and dangerous. Giovanni had a one test come back with a very, very small result and small viral load. They started him on an anti-viral immediately and we waited for many days for the final test results. In the meantime I questioned them on whether him having zero neutrophils would mean he could have an infection but no clinical symptoms...no fever, no other symptoms. I never got a straight answer. In the end, of course he did not have the CMV. I was not surprised and I am glad that he continues to be healthy.

Two days ago his neutrophils finally pulled up from zero and were at 100. They told us that they came up quicker than they would have expected (pssst....he's superG-man) so we should expect them to go back down again before maintaining the increase. Well...two days later they hold at 100 and they have decided that they will probably continue the increase upward :). I believe she said he had to be at 500 before they would consider releasing him. We are soooooo close.

He had to have a platelet transfusion again today and I am guessing this will be the last one needed for platelets. After they started the transfusion he started grabbing his chest at the location of his catheter and whimpering like it was bothering him. I looked at it and it looked very puffy underneath the catheter. I then noticed his shirt had wet spots on it and quickly noticed he had fluid running down his abdomen from underneath the bandage over the catheter. I knew that meant it was pooling underneath his skin and obviously not going into this system. I turned off the platelet pump and called a nurse and waited and waited (this is the normal pattern...I would say 15 min average wait time). Knowing the situation was serious I waited about 1 minute before going out in the hall and telling another passing by nurse to get our nurse now. She came in and thought I had called her for a kinked line...when I showed her what was happening she went and got supplies and another nurse so they could change his catheter. This would be change #10 since he came into the hospital. You could see the fluid built up around the catheter on his chest and when they tested it to be sure it had to be changed the fluid they put in ran right out of him. He knew what was coming. It is a horrid process. A big needle being shoved into a box implanted in his chest while people hold him down. I SO cannot wait to get him out of here! All was well after the replacement and the built up fluid will take care of itself. Poor babe.

I had mentioned on Facebook but forgot to mention here that he did end up loosing hair. He only lost his "old" hair, which isn't a bad thing, since his old hair was a mullet shaped section on the back of his head. He also lost a little from the very front and sides but the new hair he had grown in the last few weeks that reveals and adorable little cowlick on top of his head is still growing strong. I do miss the mullet a little though.

His skin has also gone through some transitions since his chemotherapy. He has darkened, mottled areas in some spots. It looks like he is an older person with sun damage. They said that will fade so not to worry. It is hard to see those outwards signs of what has happened to his body. He has stayed so strong and healthy that those are the only signs I have to tell me how hard this was on his little system. I was never really worried about him losing his hair...it was what him losing his hair represents that I was not looking forward to seeing. On a good note his rash on his face is gone that worried the doctors so much. It disappeared the same time the drooling and teething ended...imagine that :).

Liviana is doing well. Her boisterous laughter is enough to make anyone smile and laugh along. Brad makes her laugh so hard when I am home. She also has this breathing in laugh that she does that is hilarious. She had seemed to be talking less but this past week when I was home more I noticed she is being chatty again. She woke up chatting up a storm and it is just music to my ears. She has an MRI scheduled for next week. Brad and I have let them know that we are not going to put her through any tests that we determine to be too upsetting or stressful for her. The EEG and Nerve Conduction test are two that are going to be no-go's for me. Our goal, as she lives the rest of her life, is to make sure she does it happily...not being put through painful or stressful tests. I am interested to see the results of her MRI compared to her MRI from November and that will involve an IV being placed which we hope can be done without much stress to her. She really is a light in all of our lives!

Miles and Aria are both sick. Fevers and headaches. Bless their hearts. Miles got sick first and that is when you realize, yet again, how each child is such an important piece of the puzzle in the daily lives of everyone. He is our entertainer, our talker, our..loud talker. He always has something to say, a question to ask, a story to tell. When he was first sick on Tuesday though....the place fell silent. It was very quiet and very sad. We so need all of our kids healthy and together! His cheeks got all rosy, his big brown eyes, curly hair and dark, long eyelashes looking up at me....you just want to make it all go away. Aria got sick today and is being nursed to health by Brad and Tarah. Liviana has avoided it so far but I know she will eventually be next. We have to be on top of making sure she doesn't have a fever for long since it can speed up deterioration for her. Please pray that she can stay healthy and if she doesn't that we are able to keep the fever under control.

I find myself with a headache and I have had to deal with the computer going out twice while I have been working on this so I am going to wrap it up quickly.

Remember, the fundraiser is this Tuesday at The Prestige Lounge in Omaha from 5-9pm. You can follow a link to a Facebook event page on my previous post. There will also be a story in the Omaha World Herald on Sunday. I want to thank Carol Bicack for contacting me and being so kind and thorough as she prepares the story.

I have a snuggly buddy to crawl into bed next to. It is hard to think that all of this we are doing for him won't work. It really has to work. I look at him and cannot bare seeing him go through the same things Liviana has and will continue to go through. I never thought fear and hope could be so intertwined together. I can hardly tell them apart in my own mind as I think about Giovanni's future. I do believe in miracles and I hope they will find their way to both him and Liviana!

Hug Your Babies!

Amy

Friday, March 4, 2011

Day 21: This and That

Giovanni's White Blood Cell count yesterday morning was zero. I have not heard the counts yet for today but it is expected that he will sit at zero for a few days before going back up. We are in the danger stage where infection risk is great. If he can stay infection free he will be released in about 18 days (She told me 20 days 2 days ago and you better believe I am counting down). I am hoping and praying we can keep him healthy and free of any bacteria, viruses or fungus in this fragile time. His other counts are acceptable. He has had both Red Blood Cell transfusions and platelet transfusions this week so other counts remain stable. **Update**After I typed this early in the day they are now telling me he came back with an odd result on his CMV test. That is the main infection he is at risk for and their biggest concern. They said it is a very slight result which is puzzling so the test was repeated. He has no fever and no signs of infection. I am guessing it is an error. Let's hope it is an error.

Despite having a depleted little body he is staying strong and happy. He is truly the one handling all of this with grace. His timing is not he best but he also is teething again. The poor thing is a drool machine 24/7. His face is covered in a red rash, typical of him when he is teething. The doctors have a hard time seeing "normal" and spend way too much time obsessing over his drooling and facial rash. I get asked the same questions every single morning about his teething, his drooling, etc. These are the younger doctors who make the rounds during the day and I have been so close to saying, "None of you have children, do you". I realize it is hard for them to view things as "normal" when they are in a care position as they are but a 13 month old who is drooling, has a tooth you can feel below the surface on his gums and has a facial rash as a result is indeed normal. Bless his heart!

He has decided he is on an eating strike. He refuses the hospital food and I must say...I don't blame him. I can barely stomach seeing the same thing every day. This too has caused them to worry even though I have told them that it is obvious to me that he simply is tired of the hospital food. He will eat other things, just not the food they bring. Again, I don't blame him. He has taken up nursing way more to make up for the lack of eating and is maintaining his weight from the nursing alone since he actual food intake is probably 5% of normal. Brad brought me some pizza one night and I gave him a piece (I found out that was a no-no since they could not control how it was made) and he was thrilled! So, every morning when they come in they ask if he is eating. I say the same thing I do every time and they ask the same questions about why I think he is not eating, is he in pain, etc. I really say the same thing every single day. I think I will record it tomorrow and just push play when they come around the next day. *Sigh*...my patience is growing shorter with each day that goes by in the box. I feel bad about that too and I try to take deep breaths, I really do.

I can't tell anymore if the days seem longer or shorter. I try to stay on such a schedule with him. It is the only way to stay sane. I feel like the bedtime nazi because I am always calling the nurses in to give him his nighttime meds at 7:30 instead of their usual almost 10pm. I run a tight ship around here and I think I have seen some eye rolls when I tell them it is his bedtime and I don't want him interrupted. If you remember from my posts from his first hospitalization, they don't go to bed as early around here so 7:30 is probably like 5:30 at home.

I wanted to thank each and every one of you who sent me a message offering help with our babysitter situation. It was a rough week or so but after a ton of talking and thinking Tarah has decided she wants to stay with us. We are very happy that she realized that is what she wanted and we plan on not having anymore stressful shake-ups like that again. I know it is hard to be here. I think of home all the time. I miss the ease and convenience of it all. We tell her to get out on her own and I am going to force her out on her own when Giovanni and I are out of the hospital. Do you hear that Tarah!

There are so many amazing people planning and organizing fundraisers for our family. Any family in this situation would be so blessed to have friend like all of you...even my clients are getting involved in helping. I truly appreciate you all so much. Here are a few things that are currently being planned or currently on-going.

MadiLu Designs currently has a set of 5 card templates for photographers with 100% of the proceeds going to Livi and Giovanni's fund. I have never met Kim of MadiLu Designs but she ahe has been touched by MLD in her family and she has worked with another special MLD family as well. I can't thank her enough and seriously...the templates ROCK! Go check them out.

March 15th Fundraiser at the Prestige Lounge at 810 S. 169th Street in Omaha. 5
;00-9:00pm. The Prestige is donating 10% of the nights proceeds to our fund. You can join the event page on Facebook HERE

Liviana and Giovanni's Journey Auction. This is being organized by a photography friend, Jen Morais in New York. The auction will be held online on March 21st. You can get more information on the auction and how to submit your own items HERE

I know there are other fundraisers and I will get them listed this weekend. I need more details on them so send me your information and I will post it for you.

What would we do without all of you. I cannot describe the difficulty of this situation. The unknown, the fear, the stress of it all. Not for a second, when you find out your two kids will be lost to you would you stop and think about bills and money. All you think about is doing anything and everything you can to save their lives. After the adrenaline settles...that is when you start the worrying over the bills and money and that is when all of our wonderful friends and people we have not even met step in and help put our minds back where they belong. On our children. Bless you all! A HUGE thank you to the Ludackas for their assistance and support with our financial needs at home. I can't tell you how much easier I am breathing with your help.

I was very happy to get out tonight for a couple of hours with Brad, Aria, Miles and Liviana to attend a birthday party for our new friends, Lisa and Marcus's daughter Emma. She was turning the big FIVE and a party was in order. The kids played so hard and I saw smiles and joy that has been absent for a while. They are happy here but that carefree nature was not in them until tonight. They didn't even speak the same language as the other kids but they had so much fun. Aria and Miles are SO close. They were holding hands, watching out for each other, helping each other in the games. It was so, so cute to watch. Liviana sat with Brad and I and laughed and cheered them on. She kept saying, "Miiiiilllles" as he jumped around unsure what he was supposed to be doing in the game. He really was like watching a cartoon character at play. I was almost in tears. It was hard sitting there holding Liviana. She should be out there running, laughing and playing. Just last year she would have been.....just 6 months ago she would have been. In such a short time MLD ravaged her body and is slowly taking her from us.

She is starting up her appointments again and I am afraid I will be, yet again, the difficult mother next week. They want to repeat her MRI from the one she had in November (which I am fine with) and do a series of other tests including a EEG and a nerve conduction test. The nerve conduction test is a no-go for me unless they can give her something to calm her. It was HORRIBLE watching Giovanni go through that test and Liviana's medical information needs are different than his and her life is too short to put her through that type of experience. The EEG they will require her to be asleep for part of and I am not sure how that is going to happen. She doesn't get to sleep easily and she certainly won't get to sleep easily on the hard surface they will make her lay on. It is too hard on her body and no matter how useful the information is, I cannot put her through it. I will have talks with the doctors on Monday about the tests and we will go from there. The hearing and vision tests are important and likely won't bother her much. I worry about her vision so I am anxious for those results.

We FINALLY received our package from my friend, Kelly Langfeldt that was mailed on January 25th. It came yesterday with $20 due. Gotta love the Italian Postal Service. I was in heaven with some shampoo and conditioner she sent me from Whole Foods. I felt like I was back in Omaha wandering the aisles sniffing everything. Another package arrived from a fellow CDH mom, Rachel McCabe. It has toys and things for the kids. It was like Christmas to them. They were so excited and Livi and I sat and played with her sticker book right away. Rachel's package was sent FedEx, arrived in a week and did not require us to pay anything. It seems like FedEx is cheaper, faster and as long as you do not declare a large amount we don't have to pay to get our package. Thank you so much to everyone who thinks of us and sends things for the kids. It really means so much to them and us.

My back is aching, I am tired and I have a crib sized bed calling my name. More updates this weekend. Thank you all for continuing to follow our journey. The support is priceless to us.

Hug Your Babies!

Amy

Tuesday, March 1, 2011

Day 18: Picture Post






























I have been taking photos of Giovanni while we spend time in the box but I can't do anything with them until I head home for my visits. I finally remembered to bring the camera back for a download so here are a few pics of the G-man over the past couple of weeks. The photo with the room full of doctors is the night of his cell transplant.
































































































































































Last one is the quick shot of the train coming into the station. I know you can't tell it is the train though. I will hopefully have more time next time and use my wide angle lens.