Breathing Blues

FRIDAY 28th FishBowl Head
They took the oxygen tube out of Deedee’s mouth, replacing it by the oxygen dome at 50%. The dome is placed over her head, making her look as a kitty trapped in a fishbowl… or as an actress trying out for 1000 Leagues Under the Sea… Fishy business or not, DeeVa was handling it all gracefully. But it all has stressed her much, and she’s got a bit of high pressure. So they planned to check her kidneys just in case. In the meanwhile, they are observing her respiration and lungs behavior… DNA tests have not arrived yet.

SATURDAY 29th Yellow, yellow...
Still on the fishbowl business… In the morning, granny Millie passed by to visit DeeVa. She brought a gift (not to be opened until 3Kings Day!). At afternoon there was no change at all… Baby breathing with the oxygen at 50%, she had been suddenly changed into a yellow tshirt that left her bare and cold. Seems she did a mess before we arrived… We sang, and played with Dolly and what is left of the blue balloon poodle. The near neighbors also brought a toy with sounds for their baby and were kinda talking to him a bit more cheerfully… Seems his odds went up and they are getting the “be happy for them” vibe. Yay!

Nightshift, not much had changed. No one but us there… people tend to visit once, usually during the 2-hour afternoon shift. DeeVa was a bit fussy, seems she dislikes the fishbowl… Can’t blame her, everything looks foggy and blurred from within. But she was dashing, as she was changed into a yellow attire and smelled really good thanks to baby lotion. Her bright blue eyes focus on us with piercing attention… We just wish we could hold her tight…

SUNDAY 30th Back to Oxygen Tubes
Not a happy-go-lucky morning, we were a bit edgier than normal. As we got to the ICU, I overheard something about the left lung… but nothing was told to us. There was this spooky nurse that seemed to be staring… Freaky. That same nurse approached us asking us if we had considered treating the girl in the States… that they had been commenting on that. So I guess that confirms what I’ve been pondering… No good treatment possibilities here for SMA Type1… Staying here is almost a death sentence. From all I’ve researched it seems so. I’m trying to find out about the hospital in Tampa that specializes on children illnesses, one of its strengths is precisely spinal muscular atrophy. I foresee many drastic changes ahead in 2008…

On the afternoon visit the doctor told us that DeeVa’s left lung started to collapse early in the morning but they helped them on time to keep them from doing so. She will need the oxygen tubes again if her respiration is too erratic or if the lungs show that they need help. Not so good news… But I knew the fishbowl was not helping at all, she didn’t look as alert as days ago. The DNA test has not arrived yet and may take another week of waiting… Happy happy joy joy…

At the nightshift they had returned the oxygen tubes and cables… Somehow Deedee looked relieved. The whole day she looked a bit tired and beat (no wonder), at night she was alert. So, we sang to her, cheered her up and then tried to make her sleepy. We left Dolly seated on her side so she will have someone to chat during the night…

What I expected to be a faster ordeal will be taking much longer… The lungs will need more than a week to heal, that is obvious. And with everything else that we’ve seen, our hopes to have her home at 3Kings day are fading away faster and faster… We know, it is better that she stays in a place where she can really get the aid she needs, but it all seems against the natural order of things… Home is dead silent. The Xmas tree stands there with all the gifts wrapped and waiting at its feet… It almost seems to be mocking us. It almost seems to be trying to shine with its ornaments because it knows its lights wont be turned on anytime soon… I even thought of taking it away… But we’ll leave it as it is. 3kings day or not, even if it is 2 or 3 weeks later, we WILL celebrate Xmas, even if out of date… in our own way. For our Xmas is Deedee being home and well, bringing her laughter and joy into our zenith. And she deserves to have her 1st Xmas celebration. Hey, better late than never!

So… The year will end in a bittersweet note… It was the best of times, and it was the worst of times… All wrapped up at once. But as long as there is life, there is hope. And who knows, maybe thanks to Deedee we will be forced to do what we wouldn’t do before because we feared getting out of our comfort zones… If the best treatment for the Werdning-Hoffman illness is in Florida, we will go there. Nothing is impossible as long as there is belief. But for now, baby steps… Focus on healing the lungs… The rest will follow… Step by step.

The Gift

MONDAY 24th CHRISTMAS EVE
The first visit went fast, as we were focusing on trying to set up music for baby without any luck. So I told the Mage to simply go where I had seen one in special and get it… We will handle the new broken one later… We placed Vangies Xmas bib on baby’s bed, covering a Santa head that kinda unnerved us… and floated away to get the CD player. I feared that people and their last shopping sprees would keep us from being on time for the afternoon visit, but it seems electronics by now are very focused on MP3 players and the like, leaving old CD players in Forgotten Realms… to our delight. We were in the store for only 5 minutes, including paying time. We headed back to the hospital, and FINALLY the music played. It was an instant “tame beast”. Baby fall asleep, soundly.

As we arrived for the third visit, we had a big laugh. Someone had put a big, scary, carrot-nosed Snowman flanking baby’s sight, and she had her eyes wide open staring at it. She was scared, I know, but she would not cry… no, no, no… She just kept her big eyes fixed on the Snowman’s nose. The doctor had placed the plush there, and even uttered that Deedee was following it with her eyes. Well, of course… Wouldn’t you? :P

There was also flower bag at the baby’s feet. Someone had passed by and left a present for baby and us. Sylvia, from work, left a plush doll for baby and some chocolates for the Mage and me… with a lovely note. It was a very touching detail. I could have never imagined someone who is not a close friend taking the time in such a marked day to make one feel special, and give such support. Very kind. She lifted our spirits.

We arrived to Misa de Gallo in Fatima at10:30pm. My sister was there with her immediate clan, and so the whole ceremony passed away swiftly and bitter-sweet. At the end Baby Jesus is presented and everyone goes to see him, mimicking the shepherds… The priest mentioned to us not to worry, for we would have our baby in our arms soon. May it be so…

When we finally arrived at home, I was checking Sylvia’s card to place it in the Xmas tree, and as I took the doll out I realized it had a message in its chest, “God bless Baby”. The Mage had not noticed, neither did I, if not I would have left the doll near the baby’s bed. So we decided that we would take the doll to baby on our next visit… It is the only present she would see outside from home (we are keeping everything else under the tree, until she returns home to unwrap them all).

TUESDAY 25th CHRISTMAS DAY
We arrived on time during the morning, waited a bit while they handled baby and then went in to greet baby on Xmas. Baby was awake but looked a bit pale. They had taken the first of the chest tubes out, the one that was on the left side, seems that they did so in the night before… No wonder the surgeon had been there at night… Yes, my observation powers are in low right now. Lack of sleep does that… They announced that perhaps on Thursday they would take the other tubes out, depending on baby’s reaction. We were happy about the news, played a bit with the doll that Sylvia had brought baby, then hanged it on the bed’s headrest just at Vangies “Baby’s 1st Xmas” bib.

The afternoon visit had no events, we were auntie sleepy after eating at Auntie’s place… At the last visit, there was a fuchsia and yellow bathing puppet hyppo at the baby’s side. The nurse told us someone had passed by, and I managed to guess who. So I added on the details of that someone called Xiomara who goes to the hospital with her daughter every year in Xmas day to give gifts to the children who are in there. I remember Xiomara had told me so early in June. I never could have imagined that on Xmas my baby daughter would get a gift from her... The world is so small, and events connect us all… So baby got another gift while in the hospital, from another stranger who happened to care. Baby looked happy and content. And she fall asleep in time for us to leave…

WEDNESDAY 26th
During the first visit Deedee looked a bit out, which concerned me… But we were told that the second tube had been successfully removed. X-rays showed everything being stable… As our voices increased, baby opened her eyes, suddenly becoming more than aware of everything… Just listening to us makes her gather the required energy to demand attention. So we complied with glee. She slept during the second visit, being quite awake and feisty on the third. We performed our mandatory Sound of Music show, entertaining or diva as she demanded, and she reciprocated with an incredible one-of-a-kind smile… Yup, she smiled. Her first smile since this whole ordeal began… She managed to grant us four smiles in one afternoon, and one in the night. We were breathless, speechless… God has been listening to us… And it showed.

THURSDAY 27th
As we arrived early in the morning, baby was sleeping. The bright burgundy and yellow hippo somehow was perched at Deedee’s left side, as if it were guarding her sleep… jut like the Snowman two days ago… Deedee was not too happy about it, her face was a bit red and it was evident she had been crying but she dozed off. Geez, who wouldn’t be scared? It almost looks like Barney!

The nurse told us they had taken off the last of the three tubes that drained liquid from her lungs. She also told us that it would be better to bring long-sleeved clothing for baby’s next days at the hospital. It was then that I noticed Deedee was dressed in pink. As the Mage lifted the covers, we laughed as we saw that they had put the pink fuzzy bunny shoes on Deedee’s feet. Deedee opened her eyes as she felt the cold draft, immediately complaining about it. We changed the music from instrumental to the kids songs, and before we knew it she settled down falling asleep again.

We went home, looked for clothing for Deedee (and oddly enough, for her Godfather too) and came back in time for the second visit. She was restless, and her crying was not quieted by songs or the hippo. It was then that a clown entered the intensive care room. At first I was thinking “Oh, great!” as the clown went straight for Deedee. The Mage even murmured the same to me, but I smiled. Deedee looked at the clown as if asking “What are you gonna do to me now?”. The clown took a blue balloon and turned it into a blue poodle… which Deedee wouldn’t stop staring at. So we started playing with the poodle, making it dance and fly around the bed. Each time it “vanished” Deedee would cry, so we played her favorite songs and made a puppet show with the blue poodle and the rejected hippo until she fall asleep just in time for the visit hour to be over... She must have a timed clock somewhere…

During the night visit, the doctor approached us saying the daily news update. No chest drainage tubes left, she’ll be in observation, they X-rayed her lungs and they appear without liquid and fine, tests seem okay… So they are still giving her oxygen (now by 45%) and will keep lowering both the oxygen and the medicines on the next days until she can manage on her own and out of danger. Two thumbs up for Deedee! As we left, she was still crying, but making sleepy gestures… Each time is more and more difficult to leave. I hate leaving her crying… But I know it is a necessary evil. The price of awareness…

Godfather has been calling religiously. He’s been very worried about Deedee, and quite surprisingly attached to baby. In our last call I mentioned how hard it was leaving baby alone at the ICU, and he replied “At least you see her everyday, I haven’t seen her in 10 days. I miss her so much.” That was touching. As I told the Mage he smiled, he never would have guessed such attachment possible from our resident ogre. It is funny, and touching. It takes those lovely innocent eyes to melt a heart of iron…

Deedee brings so much joy to those who love her! Yes, she makes us happy willing slaves. And that is all that matters. We can’t wait to have her home again. The house is too quiet, too empty, too devoid of life without her. We are incomplete without her. We keep faith, we keep hope… Only time will tell the final will of God. But so far, He granted us a Xmas miracle... a lovely gift... her precious smile.

10-4

Every time I look Into your lovely eyes
I see a love that money Just can't buy

One look from you I drift away
I pray that you Are here to stay

Anything you want
You got it
Anything you need
you got it
Anything at all
you got it
Baby

Every time I hold you I begin to understand
Everything about you Tells me [you're my girl]

So I live my life To be with You
No one can do The things you do

Anything you want
You got it
Anything you need
you got it
Anything at all
you got it
Baby

I'm glad to give My love to you
I know you feel The way I do

Anything you want
You got it
Anything you need
you got it
Anything at all
you got it
Baby

-Bonnie Raitt, You got it

This was the first song I dedicated to Deedee when she was born... I believe it sums up everything... everything...

The sound of music...

The day went on being scary, as not being able to actually be at Deedee’s side makes the waiting game quite long and unnerving. That has been a nightmare this week, intensive care is as impersonal as it can be... I guess it is a needful evil, sorts of speak...

Yesterday, the first visit had no news, which for us turns into good news… No news means more healing time for baby… Which is just what she needs… not more probing or tests.

As we went to the second visit of the day, the drama factor was enhanced. Just as we were to follow a nurse that went in to the ICU, I noticed Deedee was being handled by two nurses, and the one going in turned around really fast asking us to stay outside. That gave me a taste that something may be wrong, but we just sat in the floor and stayed calm for a while. Then the doctor goes in running into the ICU… Calmness faded as we got beyond scared… We KNEW they were handling Deedee, and something HAD gone wrong. An hour and a half passed… At 3:40 we were allowed to go in. Deedee looked a bit pale, but still looked at us with half-sedated eyes suddenly becoming wide with joy… The doctor was in, and she basically told us that we will get a lot of that waiting factor.

Deedee’s tubes get plugged with her saliva and other stuff, and they have to change the tubes when that happens as it prevents the ventilator from helping her breathing. Besides that, they took another X-ray, and one of her lungs looks much better, the other still has fluids. The three tubes stuck in her chest are doing a good job draining the liquids. They also started giving her a bit of formula, to prevent ulcers in her stomach… Not a-lot, but enough to make her crave for more. And they started putting nutrients and things to boost her immune system, so she keeps on being strong. All of this MUST be good.

So overall, in her delicate condition, she keeps on being stable… She keeps on wanting to stay with us… She keeps on wanting to be with mom and dad. The funny moment of that visit was that after the medical review the doctor asked us what was it that we brought with us that left Deedee calmed and sleepy as we went away… that the nurses had mentioned a musical box that we played and she seemed to like. We laughed at that. A musical box… Well, I guess I’ll have to wrap myself and put myself in a box… The look in her face as we told her that we just singed to the baby was priceless. I mentioned the baby always had music as background in the room, for sleep mostly. So she asked us if we could bring in the music, because they were giving baby the maximum in sedatives and she just wouldn’t sleep… only a bit after our visits.

We went home quite happy about that revelation… As I have believed all this time, music DOES make a difference. We took her cd’s and the cd player, then visited El Calvo to give him the news on everything that has been going on for the last week… Not a nice surprise, but I know he will be another strong column that will give us strength. He gave us some presents, one for Deedee, one for the Mage and one for me. The Mage wants to keep all presents under the tree, waiting until Deedee is home so we open all of them together… And so it will be done.

We arrived at the hospital and our DeeVa was quite awake and fuzzy. She evidently wanted food, but she will be fed small portions at specific intervals... So all I could do was caress her head and chin and sing along her favorites… Her daddy was trying to setup the cd-player, but it didn’t work and he assumed it got broken in the way… That’s the kind of thing that happens to us… So we spoke with the doctor agreeing to come back with a cd player later on in the night, to make sure Deedee sleeps.

We headed towards the nearest pharmacy, and there was no cd player, just the one with headphones. So we went to a department store… easy to get it, hard to pay for it… We kinda forgot the Holiday shopping sprees, and we had to wait an hour and a bit more just to pay. That’s insane… The mage went to take the cd-player to ICU, and again it didn’t work. As he went back to the car he was quite upset and frustrated… Why is it that something so simple as playing a bit of music to soothe baby became such a difficult task? (Sight) I know… We went to auntie’s to give her the latest news, and the Mage checked the cd-player… And it worked. So, it seems that the problem was the voltage in the electrical outlet of ICU.

Ok, so we breathed deep, and decided we would try getting a small 3-legged extension and try plugging it in on our next visit… The day had been too long, and we needed to rest a bit. LightShadow had visited our church and asked for a date to dedicate mass for Deedee’s health. And the only available date was today at 6:00am, in Misa de Aguinaldo. So… Being midnight that meant 4 hours, more or less, to rest. And keeping the hope that everything will be fine, we went home.

Today, we got up at 4:40am. The full moon is quite bright and makes it look as if it were already late morning. We were a bit sleepy, but we became quite awake as we arrived at church. Everything looks beautiful, with the decorations for Xmas. I remembered everything from last year, and it is amazing just how fast time has passed by… The Mage’s communion… Xmas… The wedding… The Mage’s confirmation… Deedee’s baptism… And now Xmas again… It has all been blinks of an eye… As usual, the Father gave us all a beautiful ceremony wrapped in warmth and merryness. We met him afterwards, briefly. I didn’t felt like explaining the depth of Deedee’s condition as I didn’t see the need. She will get better. So far, she has shown that’s what she wants. She is here to teach many lessons to those around her, around us… Her lungs will heal. And after that, everything else will just be lessons and everyday miracles…

There are no impossible goals. Belief cannot be lost. And hope has to guide our path, now more than ever. The greatest Healer that exists is taking care of our baby. And she is feeling all the love around her… from friends, from strangers, and from family. Prayer crosses seas and any kind of distance, prayer brings us all close. It is music for the soul…

We thank everyone that in one way or another has helped to feed our hope. We keep believing, and Deedee keeps on fighting…

10-4

When you wish upon a star
Makes no difference who you are
Anything your heart desires
Will come to you

If your heart is in your dream
No request is too extreme
When you wish upon a star
As dreamers do

Fate is kind
She brings to those who love
The sweet fulfillment of
Their secret longing

Like a bolt out of the blue
Fate steps in and sees you through
When you wish upon a star
Your dreams come true

When you wish upon a star
Makes no difference who you are
Anything your heart desires
Will come to you

If your heart is in your dream
No request is too extreme
When you wish upon a star
As dreamers do

Fate is kind
She brings to those who love
The sweet fulfillment of
Their secret longing

Like a bolt out of the blue
Fate steps in and sees you through
When you wish upon a star
Your dreams come true

-Ken Hirai- When You Wish Upon a Star

Dedicated to Deirdre Valeria
We hope you come back to us soon...
We miss you, and love you so much...

Another day

I write in the morning because at night I'm too tired to think about anything. Being sick and handling 2 hospitals ain't easy... But I must keep this log of Deedee's wherabouts, because I promised so even before she went out of my womb. I was to write everything important... So she would remember, and know how much we love her...

FRIDAY

During the morning Deedee was a bit out, drowsy by the sedative. They have found more liquid in and around her lungs and were preparing everything for attaching a third tube in her chest. She already had a new wire in her head, to receive medications and the like… And the wire on the nose was back.The Mage commented that she looked like a Borg... I had to laugh... Funny, but not funny at the same time. Gotta keep the spirits up...

As I returned for the second visit (this time alone, the Mage had to go to work to fill out paperwork so he keeps it), Deedee was quite awake and crying. They took a blood test, which was not easy to digest… And then she calmed down as I tried singing to her. My voice is not that good because I have to wear a mask (I already have all the effects of sickness…) so I started telling her the tale of my first character, Blaze Darkstream. She fall asleep as I began telling her of the Rock of Bral… It figures… I guess anything without bright colors or food is really boring to her. So I just looked at her sleeping face, which managed to stay so calm and lovely under so many wires…

The surgeon arrived for the small procedure, and they made me wait outside before the visiting time was over. Since time kept passing by, I knew they would not say anything until the next visit, so managed to drag myself out of the hospital to wait and meet the Mage for mandatory dinner.

Back at night, Deedee was wide awake, looking at me with a “Why you are so scared, mommy?” look. She had the third chest tube attached, but still her little hands managed a strong grip on our fingers. We sang her favorites, so she finally surrendered to Morpheus…

So, she is still holding on, still stable under her delicate condition. We pray she stays that way a bit longer, so her lungs heal and seal, so she can breathe on her own again.

We’ll head to hospital right now… A new day, a new hope.

10-4

Holding On

WEDNESDAY:10:00am Neurologist appointment. Or better known as the useless waste of time in which we were told less than we knew and the guy showed no interest whatsoever in the girl, but plenty in a multiple orgasms review in a Cosmopolitan magazine that he actually reached for and started reading in our face. I am outraged. Where is professionalism? Where is caring, compassion, vocation? This guy is in for the money, nothing else. He commented that Deede is a beautiful baby, but it was a pity… What is a pity? And before leaving he stated that this kind of situations makes a woman out of a mother… And just what I am? What did this guy knew about us? Oh, I know… Maybe he thought we were irresponsible younglings that got really unlucky or that we were some college brats… Surprise, surprise… Appearances are VERY deceiving. It is people like HIM that makes one believe that this island has no real doctors interested in the people, but only and just only on the money. The Mage and I went off the place quite upset. But we tried toning ourselves down… Right now we need the creep, until Deedee is out of the hospital and can be taken to a REAL professional.

So, we went to see Deedee. She was wide awake, responsive, lovely as usual… Speaking loudly just with her eyes. We sang some songs to her, and she fell asleep. Everything looked the same as the night before, and there was no doctor around to tell us anything else in deep…

Midday arrived, and we went to have lunch, still heated by the words of the Neurologist. LightShadow was witness to our insanity, and then we went on to visit Deedee again. No doctor at first… The afternoon went really fast as we talked to Deedee and sang more songs. It is funny that she opens her eyes as she feels us near, and then goes to sleep after a while when she’s certain it is us. It occurred to us to get a family picture and we asked for a permit to do so, and so after the visit hour finished we ran through all the hospital to get it. It was funny, in the end it was the doctor who signed… back at intensive care. Nevertheless we had to wait until the next visiting hour, so we decided to go visit auntie and tell her what was going on.

It was a bad hit for her, just when she opened the fence she burst in tears and got very very nervous. We took her inside, explaining that there was hope, that the baby is stable and that she must believe so and pray so that becomes the final reality. After a while she calmed down… That was difficult. She has this thing for Deedee, and also she has this spooky ability of dreaming when things are going to happen… She had been dreaming of Deedee for two days in a row… So I can understand why she got so scared and so worried… We ARE scared and worried... But we cannot let fear conquer us. Fear is the mind-killer. And right now, we need the mind to find ways and solutions.



Back at the hospital, the doctor was in and told us they took an X-ray in the morning and showed Deedee had NO pneumonia, that there was still liquid in her lungs but was handling it, no fever so far. She had a blood transfusion because of all the tests they ran on her, which left her too weak. And they also changed the sedative because the one they were giving her was an hypnotic sedative and it was wearing off too fast (thus, her being awake when she felt us around). GrannieMillie was there, looking spooked as the Mage and I sang along Deedee’s favorites. And as the visit was over, we went home. We were out of service for the rest of the night, the day had been quite draining and stressful… A forecast of what will be for the next few weeks…



Today, we arrived at the given time and found Deedee sleeping soundly. But she looks fine under the circumstances. And the tube on her nose was gone (yay!) The doctor passed by to tell us they had done the routine checkups and kept on with the antibiotics and the lungs drainage and that so far she seems to be responding well. She’s under a pain killer and another sedative to prevent her from suffering. The Mage asked if they could put something in her lips so they are less dried-up, and they gave up some equivalents to Chapstik… Who knew? So, DeeVa got some lipgloss… Although she was sleeping, we sang along two of her favorites. I am convinced she hears them, thus making her reminisce about home.

We went to have lunch, then came back for the afternoon visiting cycle. Deedee was sleeping some, opening her eyes to peak at times. We held her small hands, caressed her head and sang some specially requested songs in Groundel’s name. He is convinced her favorites are the “Veinticinco y el tapón” and “El Barquito”. At a time I had to run outside because I felt like coughing, so when I came back I was asked to wear a mask. I was pissed about that… I put it on but after a small while went out frustrated because I couldn’t breathe well with that. So, I waited for the Mage outside. After he came out we went home and had a lighthearted chat… I should try to sell the house… It is too far, and this is the second scare we get (the first one was my car slipping on the road which made me end on the edge of a hill, two weeks ago).

We went back at night. By then I had a runny nose and feeling completely bad, so I knew I would have to wear the mask if I wanted to be with Deedee… As we got there, a friend from work was waiting in the corridor, to ask about what was going on. It was really nice to see her there. We couldn’t talk beyond the basics, but we got her good wishes loud and clear. So I was not so grumpy when I asked for the mask… GrannyMillie was there with her Bear, and Deeva was crying. The Mage and I tried calming her down caressing her head and singing along, again. She fell asleep, content. The Mage asked for the Chapstik so Deeva’s lips could begin healing faster… And the doctor told us that the new X-Ray looked fine, still no infection or pneumonia and that there was less water in her lungs…

It is evident Deedee is fighting to live. She wants to stay with us… Let’s hope that her will is strong. As we went away, she was sleeping, stable and quiet. Tomorrow is another day… And the more days that pass, the odds are better for our girl. Seeing how she clings to anyone who takes her hands shows her inner strength. She may have fallen but she won’t give up. She knows she is important, she matters, she gives meaning to our lives. She knows there is a warm home that awaits her arrival… Healing is slow, but certain. This, we strongly believe.



By now, The Mage and I have been surprised by so much love and support thrown our way, both by friends and strangers. We thank all of you who in one way or another are sending strength to our little baby, with both prayers, presence, and words. We thought we were alone through this ordeal… But God have sent many angels in our way to let us know that He doesn’t forget His small ones… Everything happens with a purpose.

10-4

PS: They requested blood donations for Deirdre, she's blood type O positive. I cannot donate because I'm diabetic so if anyone else can, you are more than welcomed to do so! The blood donation center is at the building just at Mayaguez Emporium's side (Santander Plaza), in front of Centro Médico (BANCO DE SANGRE 787-834-6099)

God wants another angel

This week has been the most devastating week of my whole life. What seemed normal, as we have been told it all was normal, turned out to be a life or death ordeal. The uncertainty of the odds are nerve-breaking and consuming… What do you do when all you can do is wait… give it hours and minutes and seconds to see if there is any change… to see if a little person, unaware of anything that is going on but very much aware of the love that is all around her, fights back and decides to live… DeeVa had to be taken to the Emergency Room on Monday night. She was not breathing. On Tuesday morning her lungs collapsed. They managed to stabilize her somehow… But her condition is quite delicate, and while tests have been run the results should arrive over Xmas weekend. And in the meanwhile, it all lays in her hands to have a will to survive and react favorably to everything they have done to take care of her. Yesterday night she was stable, and they lowered the oxygen levels. She seemed to be doing well. We need her to stay that way for two more days to be certain she will make it…

What happened? Why this sudden nightmare before Christmas? What went wrong? Here’s the story so far

On Monday afternoon I arrived from work early, as I took afternoons off during this week because I had no babysitter… Groundel was hospitalized on Sunday at Bella Vista and he was the one taking care of baby in our absence. Later on, LightShadow passed by, and stayed until nightfall. All the while, baby was fine. She fall asleep around six, so I left her in the room with the monitor on and the green light as usual. LightShadow left around 6:30pm. By seven I heard baby complaining, so I went to check her. I turned on the light and realize she was a bit red. My first thought was “What? You have an allergy? Why?” but as I reached her she seemed to be choking on her saliva, as usual these last couple of days. She’s been drooling so much we had named her Captain Babosa. So I pick her up and try un-choking her to no result. As I handled her she suddenly stopped, became completely limp as her eyes rolled back and she stopped breathing. I freaked out. I tried calling the Mage and LightShadow but the fricking cel would have no signal. The house’s phone was not working either. I tried reviving baby trying making her wake up, then trying kitty CPR. Not funny, I call it “kitty CPR” as it was how Clavel revived Crow when he died for 5 minutes… That happened in front of me, so I got the flashback and tried it… DeeVa opened her eyes. But she was in and out. I took her downstairs to put her in the car-seat and she seemed to be dozing off again. I kept tapping her face and her heart saying over and over “don’t fall asleep, don’t fall asleep”. I was too shaky to drive, but decided that if I stayed at home baby would definitively die. If I called 911 they would simply not arrive, I live too far from everything. A call from LightShaow passed trough and I told her a summary of what was going on. I thought of waiting for her, but baby was getting breathless again so I ran to the car and moved along… I kept talking to baby all the way, repeating to her “don’t fall asleep”. She was making no sound, which I knew was very, very bad. By reaching the main road I managed to call LightShadow to tell her I was getting off Anthill, she got right behind my car.

The drive to the emergency room took forever. As I got there LightShadow took the packs while I went in with baby. At first the doctor just said “She choked on milk?” LightShadow’s immediate response was “Look at her, she’s turning blue”. As the doctor did a double take then he took things seriously. They handled us some oxygen to put on the baby while they got a bed ready. Then they took baby, chacking everything, trying tubing her… They took a chest x-ray and it revealed a lung filled with liquid, and the other one starting to fill up. The doctor told me they were getting an ambulance as they didn’t have the right equipment for doing anything, neither there nor in Perea. She had to be taken to San Antonio Hospital that has pediatric intensive care with everything needed… A lady that was there with her sick daughter went to me, making a prayer while holding my hands. I just thanked her, I was not saying much at all. Things had not set in in my head, it all felt as if I were watching ER on tv… a very disturbing episode guest starring… DeeVa.

The ambulance arrived, we all got in and off to the San Antonio Hospital... straight to intensive care. In the way, the doctor was able to tube baby well as she had been struggling at the clinic. So… Arriving at the hospital, they quickly took DeeVa to Intensive Care. No one is allowed inside unless it’s visiting hours, so they kept us waiting outside in the hallway… The mage was given the admissions papers, so he went to do that. After a while they called me to get all the info. The rules were explained, procedures, blah blah… The mage arrived and we were finally able to see baby. What a heart-breaking site! Tubes everywhere, the mandatory serum, and all the machines attached to her little body… Her having trouble breathing leding to the belly-breathing that is very disturbing to view… Ugh! The doctor explained she needed lung drainage, that was the next step. She also needed the vaccines record to be certain of the exact shots that baby got. And baby stuff: clothing, soap… So we agreed to handle the record and the baby bag early in the morning. We said goodbye to DeeVa, leaving our hearts with her as we went away…

The Mage had been sucking it all up so far, but as we went through the hospitals stairs he was all over me in tears. Me, I still could not understand what went wrong… so fast… I hated the site of baby surrounded with wires and machines, very much “a la Matrix”… but been there, done that… although it is very different when it all involves a tiny being that seems so fragile and whom you know she needs simply to be held… Leaving her in a cold, impersonal hospital room, not knowing what will happen next… Horrible. On the way home I let Coriolis know… And as the Mage and I reached home, the horror simply multiplied… Everything so quiet, so empty… The baby’s cradle in our bedroom seemed filled with cobwebs and dust… Unbearable sadness… Unbearable despair. We managed to fall asleep out of exhaustion from crying.

Tuesday morning arrived. We woke up early so we could go get the vaccine record completed (the ped had not filled the blanks on Friday, when he gave Deedee her 4-months shots). And to the hospital to give them her personal items. I just went in to handle both things, I could see Deedee’s bed and a bundle that must have been her… but they didn’t allowed me to get close… the fucking visiting hours rule. So… We went to Bella Vista to check Groundel’s whereabouts. He was pissed, really pissed. The whole ordeal was a minor surgery to clenup the wound… his doctor missed to mention that. I connected a phone in his bedroom, and told him the news about DeeVa. Instant shock and sadness… Ever since he’s been calling every 2 hours to see if there are some news…

Anyway… We went to the 11am visit. The doctor was there, and told us that in the morning DeeVa had some serious complications. Both her lungs failed, collapsed… you name it. They managed to stabilize her, but… she is in a very, very delicate condition. Then he moves on to ask about sickness history in our family, genetic illnesses, yadda yadda. Nothing but diabetes and heart failures from both sides… Then the in-deph of her lack of lower leg mobility, her moving only the arms, breathing trouble… The doctor turned to tell his collegaes “It must be the theory” and that really pissed me off… No explanation whatsoever about what they thought that was wrong with baby, just turning away to do the stupid tea-chit-chat they do… I was pissed that knowing a complete lung failure could lead to imminent death they didn’t call us. Procedures, procedures… The guy also insisted on us letting a neurologist see her for diagnose… not covered by the plan… Not thinking too much about it we said yes, and went to the frigging neurologist office. There we got assaulted by his secretary, “ A hundred dollars… pay first, then go, the doctor will visit the child”. Cold and straight to the pocket core. We got out of there even more outraged and pissed than before. They don’t accept my med plan so we are really screwed… The lady from the night before appeared out of nowhere asking for baby… And then saying “This is the best hospital for extreme cases… You will see… We’ll keep on praying for you”, and then she went away… Things that makes you go Hmmm… Called Coriolis and he gave me some ideas regarding contacting my plan and explaining the situation… So I went to the plan, explained, they called the hospital… yadda yadda… they had a talk about permits if a doctor from the plan’s list would see the child… yadda yadda. For that I needed to make calls, so we went to the hallway and called the Ponce neuro… no answer. Then the ped… various times… We finally got to talk to him, he explained some things and he was to call the hospital to see if they could enlighten him doctor to doctor. A summary? No help, no help. It was then that I broke in tears. Useless. What was I to do? What else could we do?

Back to the hospital in the afternoon. Deedee was the same as three hours ago. We talked to her, singed to her… Trying to keep her spirits high, I know she listens… And she needs to know we are there, that she has not been abandoned, that she is very much needed and very much loved in here… Visiting hour was over, and as we went down there was my sister and her godmother so we talked for a bit… I reminded the Mage to call the ped, and so he did. The ped talked to the hospital’s ped and basically said the same… that the baby was in a very delicate condition, yadda yadda, but added that they were not sure but they were pondering that the baby had the Werdnig-Hoffman disease, whatever THAT is… We went home and the Mage immediately looked it up. Here’s the Wikipedia basics:


Werdnig-Hoffman disease

Werdnig-Hoffman disease (also known as "Infantile spinal muscular atrophy", "spinal muscular atrophy type 1", or "spinal muscular atrophy type I") is an autosomal recessive muscular disease. It is the most severe form of spinal muscular atrophy. Werdnig-Hoffman affects the lower motor neurons only. It has been linked to an abnormal survival motor neuron (SMN) gene.

Symptoms: It is evident before birth or within the first few months of life. There may be a reduction in fetal movement in the final months of pregnancy. Symptoms include floppiness of the limbs and trunk, feeble movements of the arms and legs, swallowing and feeding difficulties, and impaired breathing. Affected children never sit or stand unassisted and will require respiratory support to survive before the age of 2. Other symptoms include:
-Fasciculations of the tongue
-Marked Hypotonia in Proximal, Distal muscles, Intercostals & bulbar muscles (Patient lies in a Frog-Leg position, i.e. hips abducted & knee flexed)
-Flaccid Quadriplegia
-Difficulty breathing
-Poor feeding - need gastrostomy
-Weak cry
-Areflexive extremities
-Normal Intelligence

Diagnosis: Electro-Myelo Gram (EMG) will show Fibrillation & Muscle Denervation,
Serum Createnine-Kinase may be normal or Increased

Prognosis: The patient's condition tends to deteriorate over time, depending on the severity of the symptoms. Children with Werdnig-Hoffman disease / SMA Type 1 face a difficult battle. They are constantly at risk of respiratory infection and pneumonia. Feeding difficulties make it a real challenge for parents to give their children adequate nutrition and supplemental feedings may be required. Tubes placed through the nose or directly onto the stomach may be necessary. Recurrent respiratory problems mean that mechanical support for breathing - usually initially in the form of BiPAP and later often tracheostomy and ventilation - are necessary for the baby to have any chance of long-term survival. Affected children never sit or stand and usually die before the age of 2 if the decision is made not to provide breathing support. However, some individuals have survived to become adults, in which case sexual function is unimpaired.

Treatment: Treatment is symptomatic and supportive and includes treating pneumonia, curvature of the spine and respiratory infections, if present. Also, physical therapy, orthotic supports, and rehabilitation are useful. For individuals who survive early childhood, assistive technology can be vital to providing access to work and entertainment. Genetic counseling is imperative.


So… A constant risk of dying from breathing failure, 80% babies do not make it beyond the first year. So this is the great mistery that the doctors won’t say… Lovely. We went back to the hospital at the night visit. Grannie Millie was already there comforting baby being quite shaken. The mage and I went to baby saying happy remarks, talking to her, teasing her… Positive vibes… Even if your heart breaks even more every second that passes… Baby was very alert, looking at mommy and daddy as usual, demanding food. And entertainment. And, gosh! They took her earring! Now DeeVa doesn’t look fierce in those with sheets! What were they thinking! The doctor arrived, and said she was doing well so far. Less liquid in the lungs, awareness, no belly breathing… That they ran tests and today will run another one… That results should be available at or after the weekend. So far, so good. Hope baby copes, keeping the will to live even if only for food. We went home again…

Silent house, eerie atmosphere… Incredible how you get used to some things that you get to find annoying, and miss them so much… We have found we don’t mind so much getting up 2 or 3 times during the night to feed baby… We have found we listen to her shrieks and breathing and silly sounds and they bring warmth and joy to our home. We have found that we have no complete home without her, we miss her so much… We just want her home. If she has that stupid disease or not, who cares? All she needs is love. All we need to give her is love. She was our gift from God. We have never asked for anything… We don’t care about material things… We hope that this Christmas, we get a miracle. God has been pondering about taking our beautiful child to heaven for he wants another angel… We ask of him to grant her stay, as she is the only thing that makes life worth living for both of us.

Wednesday: Got a phone call at 8am from the hospital. The neurologist passed by and want to speak with us during the morning… So, we should be heading over there soon… And after that, to meet with DeeVa for a small lunchtime chit-chat.
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Ped, shots, fever & social call

Today is DeeVa’s 4th month. She looks sassy and happy and demands food like a pro. She’s grown 2 more inches… and weights 14.7 pounds… Sheesh! Yeah, the little monster gets bigger by the second! On Friday she went to see the ped, and so far she’s fine, not sick, interested in music and other sounds, food, sleep and some attention. The milestones not bein reached in terms of her legs moving/kicking and her neck not being raised at least 45 degrees are the only concerns we have. So the ped gave us a neurologist referral so we check out if she has any developmental skills problems. So far I think she’s just too heavy because she is too big… She tries moving her knees if you hold her legs up, and she definitively moves feet and fingers. Got that date on January 25th… Let’s see if she has any change by then.

The ped also checked the raised right side of her chest. Says it is a normal deformity on babies that should go away in time, that it is not affecting anything else. Her drooling/choking is normal too… Gee, how nice. She’s very alert and healthy. So, since there was nothing else, he gave her the 4th month vaccine shots. This time she had a reaction, having fever all night long and then some on Saturday. But her eating/sleeping schedules were not affected. Nothing can affect FOOD!

Her busy social life keeps going. This Sunday she dressed up for her cousin’s baptism. It was a nice ceremony at Sunday mass in San Benito, and afterwards a small celebration on her cousin’s house would follow… But first DeeVa wanted to make sure her Godfather was well fed so he could withstand starvation that he would face at a hospital… Yup, he had to be hospitalized maybe for the next 2 to 3 weeks… DeeVa was sad about it, her Godfather is nanny, entertaining center and plaything. After taking a pic and delivering him to his hotel, she went on to see her cousin… No better way to cope with sadness than with FOOD…. So, DeeVa was chatty, happily ate her fake milk and kept on mingling with auntie and cousin, until it got dark and Mommyslave had to go home... She was beat!

This morning DeeVa woke up as soon as Mommyslave did… She had to make sure that the last thing MommySlave did was feeding her. Sheesh! The demands never stop! I guess she should be happier than last week, she’ll get one of her favorite slaves early in the afternoon for one more week…

Soooooo this is Xmas…

Oh, Dear!

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Bliss and bumps... The excitement never stops...

DeeVa has been behaving pretty ok… Sleeping her mandatory hours, being wide awake and quite interested on Everybody Loves Raymond and anything Tyra… Seems she really likes when I get home, as it is when she starts bothering her many being a pain to feed… until I pick her up, take her to the room, get in the couch and give her her fake milk. Yay! She also likes to fuzz like that with her daddy… Ok, so I guess I am more entertaining and comfy for feeding her, but damn… It can get tiresome.

She seems to be doing fine with the mommyslave working as well as daddyslave… Just 4 hours with her many is no big deal, specially since afternoons are mainly for her to sleep. Seems that routine will be me arriving, bathing her, taking a shower, eating, feeding her and putting her to nap in the bed while I also nap until the Mage arrives… then he takes her to her cradle… We sleep… She wakes up at 1am for her next feeding, and then at 5am for the early bird special feeding. Good, it is constant, she falls in place and is not neglected… The bad: Not sleeping my 9 hours… very much needed to function properly. I am barely getting 7 hours of sleep, the mage between 5 to 7. Not good at all… I don’t think that can last too long before one of us gets sick… (sight) For now, nothing else we can actually do…

One thing that is worrying me is a bump that DeeVa has grown on her right side of the chest. It seems hard to the touch, and runs for all her torso, making it look a bit ackward. Seems it hurts as each time we burp her she wails as if something pinches her. Her drooling is more than a lot, and she has been choking on it. We are constantly watching her because of that. In case something may be wrong gotta take her to the ped this week. Next week is her vaccine shot for 4 months, but I don’t think we should wait any longer. Hopefully it would be nothing of big concern.

Just 13 more days until Xmas!

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THANKSGIVING

Yes, it's a bit late, but things have been hectic. Nevertheless, here's part of what happenned in Thanksgiving... So the Annals of Little DeeVa keep on being complete...

The day began, and DeeVa was quite eager... looking forward to some turkey and some very much deserved attention... Even a very rare event happenned! She smiled! And yes, she looks like a SouthPark character, thank-u-very-much!


The morning "floated away" and DeeVa grew very impatient... So impatient that she decided that since guests were not arriving on time, she would just take a nap. There. She even thought of banning the turkey for them. Defilers! Infidels! Breakers of the old tradition of watching the Macy's Parade! Sheesh!


Early afternoon... MommySlave had to go with DaddySlave to pick-up AuntieDearest who was stranded in her house. Before they took off, GrannyMillie arrived with her two female siblins so they took care of me while my ParentsSlaves were missing in action... After more than an hour, they FINALLY arrived. AuntieDearest attacked the turkey without a second thought. She came prepared with an electric knife and sharpenned teeth! Granny and the sibblings took all the food upstairs, so it could all be nuked in the microwave oven... Yup, no normal oven in this house... MommySlave is an anti-cooking chick! So... Food was nuked, sorted and given away! All the while... DeeVa slept. When the food session was over around late afternoon, Granny and her sibblins decided to go home. It was then that MommySlave FINALLY had the brilliant idea of taking family pictures for her friggin scrapbook... Damn, she is obssessed! So... Here's the outcome... As you can see, someone still has letting-go issues...


And to make things oh-so-exciting, MommySlave suggested that we all changed possitions! Woah! DeeVa was ecstatic with joy! And so everyone else it seems... At least this time everyone looked at the camera!


So... Granny and sibblings were gone and STILL MommySlave wanted more pictures... That flash was starting to REALLY annoy DeeVa! But she knows, she has to get used to it, after all she is a DeeVa! Anyway... Here's a lovely family trio... Tadaa!


Then MommySlave wanted a pic with my Godfather. Gee, he's always pouring joy at all time! Somehow he looks looney... Well, ain't we all... Gomez?


DeeVa was taken to the room so she could FINALLY have her Turkey Day dinner. Gee, they almost forgot that she existed! The service in this house really sucks! Oh, well... At least the change of diaper was fast and the fake milk quite nourishing.


And as the milk flowed into DeeVa's lungs, DaddySlave began his psycho practice of weird picture shooting... He even scared MommySlave!


As all this insanity happenned above, AuntieDearest waited in the floor below so somebody (ANYBODY)would take her home... Once again ParentsSlaves ran away, and this time the Godfather was left taking care of the DeeVa... "Oh, Dear!" (But wait! He cracked a smile! OH DEAR! Indeed!)


DeeVa seated down (not on her own) and shared a cup of tea with the Godfather while waiting for her ParentsSlaves arrival... Actually, she was yawning because she still wanted more food, DUH...


And so, the night crept upon us all... Parents arrived, Godfather floated away, and DeeVa got ready for her night sleep... At least one of many... (She sleeps 3 times during the night... Lovely...)


And that was how our family celebrated Thanksgiving this year... Actually, it is the first and only Thanksgiving together, so hopefully we will be able to establish a sort-of-tradition even if it is just to dig in... Ah! The universal language of FOOD!

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