Tight, Swollen Claves

Lia, my greatest love .....

I do not have much time to write because I am going to Ste-Justine.
Physicians were after what they could for my beautiful Lia. We had a second opinion at the Children and they say the same thing: the disease progresses and Lia's nothing we can do.
Lia will be named Sunday afternoon and Monday extubated the day. They predict that it will survive a few hours a few days.
I am terrified at the thought of losing my daughter. I am angry against this life that continues to make me suffer. I hurt so much trouble ..... .....
I'll come show you pictures of baptism when I get home ......
Thanks for your support throughout the battle Lia .......

Sonicare For Two People

One is always at the same stage. Lia is still intubated, still seizures with respiratory arrest. A video taken by my dad who came to visit him.

How To Build Truck Side Rails

My beautiful love with his hit.


I put this picture because my daughter, I love it. It is the most beautiful in my eyes, with or without the tube.

Best Amp For Music Listening

suite .... not very happy.

Following the last post, Lia has risen to the floor. On Sunday she had a convulsion in status (continuous). They gave him the dilentin to stop the crisis, but it did not work. Then they gave him the ativan and this time the crisis ceased immediately. By cons they took her to intensive care for monitoring. She made several small seizures but she was relatively well all week. They told us they date back to the floor on weekends. Saturday she made several small attacks, so they decided to keep looking to see it. And Sunday ..... ..... pafff respiratory arrest in the morning, code blue. Thereafter it is exhausted. In PM I take it to the rock .... stop breathing in my arms. They had to break down the back, I was terrified. After she seemed better. Around 19:00 we left for home. At 20.00 I call, all is well. At 21:00 the phone rings. Lia made two stops breathing and difficulty up the slope. They have to intubate. We arrive at Ste-Justine just over 30 minutes later and she is calm and intubated. They will return home for the night.
She made one to two stops breathing every day due to convulsions. We met with physicians and their game plan is to play with drugs. Finding the right medication to control his epilepsy ..... or at least the most serious: respiratory arrest. For now and some days it will remain intubated. I know in the ICU is well monitored. But my heart is afraid of Mom!
For how much longer I will have the right to see my daughter and I love him?? (Lia

my love ..... you gotta fight! William and Loik, watch over your little sister I beg you! Help her to get better! I love you so much too.

159/101 Blood Pressure

New quick-quick.

Lia has a total of 4 stops breathing. The last she did before the medical intensive care. And she is convinced that it's to epileptic seizures. She wakes up, freezes and stops breathing!
The doctors are clear: what lies ahead will be very hard. Roller coaster! The drugs may cause side effects that could be severe. And perhaps (in the near or distant future?) We will have decisions to make in regard to the revival of Lia. For now it
okay. She chatters a lot and smiled. This morning she had a lumbar puncture (sampling of cerebrospinal fluid in the bottom of the column) to check for metabolic diseases. She did this as a great, without crying.
She is on her second stay in intensive care .... and hopefully it returned to a regular room tomorrow.
..... So here I give news soon ....

Heather Harmon Smoking

Ostia ..... there is enough!

Tonight, after the feast of the angels I was at my aunt with my mother, my step dad ....
We eat fondue. I file Lia in her car seat, no pool, nothing ..... only to release me a little arm. She falls asleep quickly.
I keep next to me to watch .... I watch several times to see it going well.
One moment I look at it and stare. I talk to her and she did not react. I touched her, no response .... I take her in my arms: it is completely soft and beginning to turn blue! My daughter stopped breathing !!!!!!!!!!!!!
I start screaming at my aunt (a nurse) that''Lia stopped breathing ..... do something! Not breathing !!!!!!''
General panic .... everyone freezes. My aunt removed the arm, put it on a chair and knelt beside him and made him artificial respiration. Lia returned to it after 4 or 5 insouflation (?).
me I cried for 30 minutes. We called the ambulance and went up in Ste-Justine, or Lia sleeps with dad now.
They will try to see if it is a complete epilepsy syndrome of infant death or otherwise.
Honestly, I get really angry!!
you I'll be happy in peace someday?? I'm exhausted !!!!!

Recording Counts Towards Ratings

Preview. The feast of the angels

For Grandma who wanted to see: Lia

sheep!

Brown Discharge Burns

This Saturday This is the feast of angels to St. Joseph's Oratory. And of course we go, with my little pot.
For the first time since its birth, I'll take some time to think of William and Loik. I could not allow myself to cry since the arrival of Lia. With all his hospitalizations and health problems, I lack time to think about my two little feathered coconuts.
In addition, unlike many moms, I can not say that my chip back to my loss of my boys. I would not want William and Loik live everything Lia lives. I would not have wanted them to be sick. I would not want to see them suffer like I saw Lia suffer.
I do not live the perfect location ..... perfect motherhood would make me say,''William could have lived it or ......'' Loïk''could have done such a thing.''
So this Saturday, I can allow myself to think about my two little men gone too fast, take time to cry.

William and Loik mom .... love you deeply. I miss you, even if I do not always have time to tell you. Forever you'll be in my heart ......
I love you my rabbits.




William and mother.





Photo montage.

Good Bible Verse For Housewarming

News.

Today we are (again!!) Returned to Ste-Justine. The CLSC nurse who comes twice a week to weigh Lia phoned yesterday to Ste-Justine, because she was full of secretions. Then the pediatrician gave me an appointment.
It begins by telling me that she said it would not be secrets, but an overflow of saliva that my daughter could not swallow because it is hypothonique, dysphagia, bla bla bla ..... come on, press the knife!
Then she looks at the results of X-ray of the lungs that we spent Sunday during a visit to an emergency (secretions yet!). She found that the esophagus Lia seemed distended. So she joined the surgeon who says he wants Lia pass a test to see if the famous secretions and the small stuff to the esophagus is not due to opéaration of-way valve. So
result of the examination? The anti-reflux valve is tight !!!!! Ostia! (Sorry) Usually children swallow their secretions Lia ... but those do not go through lack of space!
We must return to ste justine next Tuesday they are trying, with a balloon, a little of the ENLARGE-way valve. So we are still hospitalized for at least 24 hours. All because of a stupid mistake! ; Usually, during this operation they pose a tube and make the valve around the tube. And good for him Lia they left the feeding tube for the operation, and it is much smaller than they usually use.
Then we reviewed the ENT who did another small exam ..... tell me again that a little Lia has stridor do .... and that is surely due to its hypothonie .... everything is softer!

Yeah, I know! I'm just tired of repeating myself to do ..... my daughter almost 4 months and she does not even begin to hold its head. So yes, I know my daughter is different ..... and ste-justine they love us back!

Does Alcohol Kill Throat

We're back at home since Friday, after 5 weeks in hospital. We have several appointments set .... no respite for friends! (
Lia is full of secretions. It's really stressful, it chokes with it. ..... It worries me a lot so I always keep an eye on it and she sleeps in our bed.
At the genetic level they did a test to see if it has not Rett syndrome ..... and I can tell you that I do not want my daughter to have this disease! (
On a happier note:
We are thinking hard for us to buy a new house. We need a positive project for us to occupy the mind and not think too much about the future. We thought we travel a lot with Lia, but travel and feeding ..... not easy! So we sell our house for us to buy new!
Someone is looking for a small house in the corner of Laval? P I'm back with more news! The time I miss a little, Lia is a baby in arms!

Free Spectral Tiger 2010

New Lia

You remember I told you that Lia was supposed to have surgery Sept. 22 to one-way valve and a button for his gastro-gastric stoma to be stuffed with a belly button.
Well Wednesday night they came to see me and told me that the transaction would be the next day! Ouffff! What a surprise! So on Thursday my casserole
entered the operating room at 10:00 am. An operation that lasted about 3h00. Finally at 12:30 they came to see us to say that everything went well and Lia was leaving the recovery room. She remained there three hours! I can tell you that I, were distraught at the end!
So we came up with the pot to her room around 15:30 on the first floor surgery. She desaturation a few times when she opened her eyes. I was pretty worried. I spent the night with her in the hospital. She slept a lot during the night but needed oxygen a few times.
Today she still slept much and when she woke up she became nauseated and went out a lot of secretions from his throat. It must be said that for more than 24 hours they have put him a tube to empty his stomach of all secretions.
Tonight they took away the tube ..... and for the first time my daughter has no tube in the nose!

Here are photos:

Why Water Moves Into Respirometer

Three years

Burn bark

Up bleed

Nail doors

entrapment

.

Living dreams

to ensure too

Praying shadows

and walk as

.

my saying

it takes time

I'm writing it so black and white

Whatever I do

Or am I

Nothing erases you

I think of you

(...)

Not you

JJ Goldman

7 Months Baby Dry Cough

Answers

"It is rare to see two siblings all be both born with heart disease, because in principle they are not hereditary.

What was Louis's heart and his sister Matilda? "

Louis and Matilda share a bicuspid aortic valve instead of Tricuspid. (2 leaflets instead of 3) In this malformation raises a number of problems on the heart, mainly aortic stenosis. Aortic stenosis is a progressive heart disease that involves a narrowing of the aortic valve. Its mechanism is the presence of an obstacle to the ejection of blood from the left ventricle to the aorta. This results, above, an increase of pressure in the left ventricle, which will thicken by offsetting (hypertrophy), and downstream by an inadequate cardiac output during exercise.

Each heart is unique, each also bicuspid! At one will require a "simple" valve replacement: 30, 40, 50 ... Among the other major aortic stenosis in utero causing excessive fatigue of the heart up to the hypoplastic left ventricle: this was the case of Louis. Despite several interventions, the ventricle has never regained the lead. Mathilde

it has exacerbated his aortic stenosis in utero which required support from birth but fortunately always kept a good left ventricle. Her stenosis will continue to evolve despite the surgery. Therefore it must be regularly monitored sonographically and will one day be reoperation.

To answer the question, yes the majority of heart disease is not original genetics. We now know that there are cases "family" of bicuspid: in our case we had no other known cases in the family. But since a bicuspid can remain silent 30, 40, 50 ... we discover that heart disease may be other members more or less distant from our families one day. I repeat what I said in another article is part of the bicuspid obstructive left heart malformations and we know that heart disease is the most recurrent (= who is likely to recur during a new pregnancy). A single gene has been identified so far in these heart : We're not a carrier. A study started this year to try to discover what other genes are involved in these heart: we will benefit from this study by giving all three of our DNA.

"As a Mom, do you live having put Matilda born with a heart as a failure?"

The answer is again related the story of his older brother Louis. When I lost my son was obviously a terrible failure at all levels: giving life to a little bit sick of heart, seeing his condition deteriorate as the weeks and to come to beg the heavens to let him go ... Also, the day I learned that Mathilde was also carrying this heart I have always experienced the situation as another failure ... or rather like a monstrous fear of reliving the same story as for Louis.

I step back today but I can say that the arrival of Matilda has largely belong in the category: victory and revenge on life ! She is everything I hoped I was not allowed since the departure of Louis and more.

Not failure, but then the guilt ... Guilt with which I try compose different days, which will have its place in the back of my head until my last breath but at every difficult moment that Matilda will cross with his heart. Guilt and therefore the age-old question unanswered: Why "fucking" valve leaflets have ever been delivered on time?

Matilda every day: http://coeurdeprincesse.blogspot.com/