Thursday, November 22, 2012

Thanksgiving Eve 2012

Cupcakes delivered for a thanksgiving order (with extras going to different clinics/areas of MetroHealth, for my thanks to them for caring for Kenny),

 bread cut for stuffing,

  8lbs of brussel sprouts cut and ready to be cooked...chocolate and pumpkin pies are next. I give thanks to God for giving me this wonderful...but extremely trying life. My friends and family that I don't always get to talk to or visit (thanks to this trying life) all have been...are...and will always hold a special place in my heart for one reason or another. And all that I have. It may not be much, but I feel blessed none-the-less. So to all my friends, God bless you all on this very busy and happy Thanksgiving Eve.

Thursday, November 15, 2012

Heavens special child (and more)

A meeting was held quite far from Earth
"It's time again for another Birth"
Said the Angels to the Lord above
This special child will need much love
His progress may seem very slow
Accomplishments he may not show
And he'll require extra care
From folks he meets, way down there
He may not run, laugh, or play
His thoughts may seem quite far away
In many ways he won't adapt
And he'll be known as handicapped
So let's be careful where he's sent
We want his life to be content;
Please Lord find the Parents who
Will do a special job for you
They will not realize right away
The leading role they're asked to play
So with this child sent from above
Comes stronger faith and richer love
And soon they'll know the privilege given
In caring for this gift from Heaven
This special child so meek and mild
Is "Heaven's Very Special Child".

(Author unknown)

November 17, I will be wearing purple in honor of my children...of whom all were born early between 34-36 weeks...and my twins who were born at 23 weeks gestation. I miss my Nicholas with every breath I take...but am so grateful to God and Nick for watching over Kenny whom I am sure has his twin as his guardian angel. This picture was taken the first time I held Kenny...over a month after their births. I was so scared to hold him for fear that he too would get sick and die. He looked right at me (I was a crying mess) as if to tell me that everything would be alright.
Even after long days like, specialists and therapies...colds, medicines and feeds...I feel truly blessed. Yes, I get frustrated, scared, lonely and sad at times but I know I can handle it. Gods got my back on this!

Wednesday, November 14, 2012

A crazy dream

Figured I better write this dream out...we've all had one. The kind of dream that wake you up from a deep sleep and sticks with you for hours throughout the day. Yep...

I'm driving our van with my oldest daughter, Taylor in the second row of seats. It must have be winter but there was no snow on the ground. The streets were slightly slick with some black ice in some areas. Well, I came to an intersection and stopped at the red light. When the light turned green, I hit the gas but the van wouldn't go. The tires started spinning on the ice. I tried and tried to make it move forward, but it wouldn't budge. Finally after a few minutes the tires grabbed the street and we started moving. As we were driving, I had to get around this older, grey haired gentleman in a small compact car which matched his hair color. So I sped up and all of a sudden, I lost control of the van. We started to spin. I tried to regain control, but the van wouldn't stop spinning. All of a sudden, I got sucked out of the window. Somehow I managed to still hold on to the steering wheel for dear life. I was screaming to Taylor to please make sure she has her seatbelt tight and to brace herself for the crash. I was scared to death because I knew I was a goner, but I didn't want to leave my kids. I was loosing my grip as the van was really spinning. We just missed hitting the guy in the little car and the velocity of the spin was winning the battle of me holding on. I kept thinking of Taylor in the van alone. Thinking about if she was going to get hurt when the stopped spinning and crashed into something. Thinking about what Taylor was going to witness when I go flying out the car. I didn't want her to be sad, scared or anything bad. I just couldn't hold on any longer. I was slipping, crying and kept telling Taylor that I loved her...then I lost my grip. I felt myself being sucked out of the van and thought "so this what it feels like when there is a car accident and you hear that someone is "thrown from a vehicle"...and now I'm one of those people.
I woke up before hitting the ground.

Yeah...scary and extremely disturbing.

So all you dream interpreters...let's hear it. I pretty much know what this dream is about...and it's pretty freaky how ones mind can take what your feelings...emotions and actions and turn them into such realistic and quite haunting dreams.

Friday, November 9, 2012

The ocean of grief

Those of you who have experienced a death of a loved one can relate to this chart I posted. From my own personal experience, grief comes in waves. I want to compare it to the ocean when the tide rolls in and out to sea. Some days its deep with no place to look at the beauty of it all, while other times there is so much to take in. To walk clear and free from the currents that can pull you under. Where you see all the beauty the ocean has and how small and relaxed one becomes. I've been at the lowest, sucked in and lost out at sea. Not relating to others, feeling lost and angry and just sad. I went through every emotion imaginable...sad, angry, scared, sick (like...literally sick), desolate, tired, name it, I've felt it. Its no wonder that I lost many friends along the way because of my grief. Some people can't and won't be subjected to such sadness...sometimes it can be pretty pathetic. Many people don't know what to say, so the best thing they feel to do...the only thing some people know how to do, is back away. It's a very lonely place of losing a child. What does one say to a mom who is mourning? There is only so many "I'm sorrys" one can say without sounding generic. When a mom is in the throws of grief, only they can come to terms with it. It takes time, patience, understanding and love. We love to talk about or have someone mention our babies that have gone before us. It solidifies that our child will never be forgotten. Now, I think, after 5 years and dealing with PTSD...and the grey hairs that have magically appeared on my head...thank you stress haahaa...I'm finally coming out of it and it feels like a breath of fresh air. It took five years to get to the point where I am at now. Missing my baby boy still very much to this day. Wondering what he would look like, his interests at age 5. If he would be like Kenny. Just missing what he could have been. All the milestones we never got a chance to experience...I can honestly say, yes I have my bad days...days of crying for him, but I have more good days now. I can talk about him, go to his grave without crying (most of the time) and look at pictures again (ok..those are a little tough on me)...but I feel like the fog is clearing and I am living again. Who knows, I may fall back down to a low because that's how grief works, but I now know that things will get better. A piece of my heart will always be missing, but I know Nicholas wouldn't want me to be sad for too long. Today...I am

Thursday, November 8, 2012

Kenny has adopted a little buddy...

Kenny has adopted a baby. He was carrying around his older sisters American Girl doll (or rather, Generation Doll) and while at a school function, a very sweet schoolmate of my girls offered her American Girl twins (a boy and a girl). She gave them to him last week and he hasn't parted with this little guy since. I even added a G-tube to him and made a backpack to "hold his feeding tube Kenny has. He takes him appointments, to school, the store, to bed...he holds him, feeds him, gets a diaper changed when he gets his changed...and when he gets his feeds, meds and breathing treatments, the baby also gets them. I never thought my little guy would be able to relate to a doll or even know what to do with one. The way he looks at this doll is total love. He loves being a "daddy" to a little baby boy with the same issues as him! He has hit that next level of developmental play and I love it. I am going to be getting/making hearing aids for him next! I am in awe of how far Kenny has come from that one and a half pound, half baked little guy that beat the odds!

November is Prematurity Awareness Month

I am the mother of a premature baby. I did not drink, I did not smoke, I did not do drugs, I took my vitamins and went to all my doctors appts. I did everything right and still had my twin boys at 23 weeks. Premature birth can happen to anyone at any time in their life. It can happen to you, your child, your grandchild, your best friend. It does not discriminate in who it chooses or why.

When you are the parent of a premature baby your whole world will stop. You will be told your baby won’t survive and if it does it will have lifelong health issues. You will be told it may never sit up, crawl, walk, see or hear. You will cry yourself to sleep at night and pray your baby lives another day. You will ask God to take you instead of your tiny child. You will fall to your knees every time your tiny baby stops breathing. You will stop sleeping and every time your phone rings your heart will drop to the floor because you fear the worse.

If your blessed enough to make it home with your baby, you will know way to many medical terms that no parent should ever have to know, you will know how to work an apnea machine, give infant CPR, you will learn sleeping doesn't exist because alarms go off all night long. You will be overprotective and overcautious because you know how close you had come so many times to losing your baby.

Having Kenny and Nick 17 weeks early has changed me as a person and Mother. I will never take the health of my children for granted again. Please remember all of the babies who didn't make it and all of the ones who have fought so hard to survive.

NOVEMBER 17th is National Prematurity Awareness day. Please wear purple to bring awareness to this issue so someone you love doesn't go home from the hospital empty handed.

Tuesday, November 6, 2012

A day that started bad and just got worse

It all started when I woke up to a cold house...and since we were just without power for 5 days, cold isn't one thing I like too much anymore. I tried adjusting the new thermostat...nothing. I went down the basement to check the furnace...nothing. It wasn't working! So at 6:30am, I was calling the 24 hour hotline explaining the conditions of our chilly home. Guaranteed to get someone out to look at the problem.
Got the girls off to school came home and picked my hubby, Kenny and Gina up and went to vote. After that, we wert tothe grocery store to stock up on 10 for $10 products and oh...we scored big with canned veggies 20 for $10. Came home to drop off a very busy hubby. We then went to Kennys doctor appt...
For weeks we have been noticing how yellowish-orange kenny's skin has been turning. I just though that because he's been eating so much baby food that has carrots in it, that it would clearly be the reasoning behind his Oopah Loompah coloring. But being kenny and a Tomecko, our luck isn't the were not too sure.
As I had him at his comprehensive care appointment today, they were checking him over, they (his nurse practitioner and his nutritionist) did not like the fact that he was so yellow, lost some weight and has been having diarrhea. They were talking about his liver, absorption of something and vitamin A...something or other. Yeah, everything just started to sound like blah,blah,blah..ugh. She also wants to keep an eye on his shall I put this...testicle. It keeps slipping up and not descending like it should. Now...being a mom and female, I honestly didn't know those things move up and down...ewps. So now we have a bunch if new worries for me to deal with. What else is new. I am hoping that the weight loss is from the lack of pump feeds due to our power being out for 5 days...yes, five days of a dark cold house with nowhere to go or nothing to really puts into perspective how much we rely on technology...for everything! Thanks to some good friends, we had nice hot dinners and even a good nights sleep in a warm house after 3 nights of sleeping in an icebox we call home. You had to have seen all of us...walking around the house with flashlights and bundled up in layers which included gloves and hats...hey, it sort of worked. So yeah, hoping and praying it's nothing more than just cutting out dome of the stage three foods. I being honest and saying I'm quite scared.
While I was on my way home from the appointment and racing to the girls school to pick them up, my husband calls to tell me not to get upset...i freaked out and asked him why and he went in to tell me that the neighbor that I so graciously like (not), the one that asked if he could cut the branch that was hanging over his house...which, by the way, was about 5 ft. Long and 2" in diameter. We told him to go ahead to only take the part that was hanging over his house off because it was a huge branch that was a major branch to the tree...our tree. Well, the neighbor ended up cutting the whole huge branch one large whack. And would you know that not only did he cut way too much of it off, it also hit my house! Not the end part of the branch...noooooo...that would have been much too easy on this day from he**. It was the wide part of the branch...which was at least 12" in diameter and 20 ft. long! Took out our siding, window frame, shutter, decorative retaining bricks and my outdoor electrical outlet which was part of my house! The hole that the limb made in my house was so deep into the wall that it broke and pushed the inside wall apart! I am just thankful that we weren't home and in the house when it happened and that no one got hurt. My first reaction is anger...and yes, I did kinda get mad at the idiot of a neighbor, but then I thought that it was just an accident, it could have happened to anyone...well, anyone that tried cutting down a huge main branch without any prior tree cutting experience. So now it's all in the insurance company's hands. We had damage from the superstorm and now we have even more damage from my neighbor.
So as you had been extremely stressful. I can lay here and dwell on the negative or I can take my Nyquil and pray that whoever gets voted into office that they take great care of our wonderful country and the people in it. I have so many friends and family that need prayers because of illness, a death or other issues, that this stuff is just that...stuff. Things that will eventually get fixed. As for Kenny, he has proven himself over and over...just keep him in your prayers.

Monday, November 5, 2012

Born too soon

World Prematurity Day falls on Nov 17, and this is an opportune time to heighten awareness of the dangers associated with preterm birth.

PREMATURE infants, also known as preemies, come into this world earlier than full-term infants.

A normal pregnancy lasts for approximately 40 weeks. Preterm birth is the birth of a baby occurring before 37 completed weeks (less than 259 days) of pregnancy.

They look different from full-term babies, and find simple things like feeding and breathing difficult.

There has been significant progress in the care of premature infants, but not in reducing the prevalence of preterm birth.

Preterm birth is among the top causes of infant deaths worldwide. Every year, about 15 million babies are born prematurely – more than one in 10 of all babies born around the world.

Newborn deaths – those in the first month of life – account for 40% of all deaths among children under five years of age.

Prematurity is the world’s single biggest cause of newborn death, and the second leading cause of all child deaths, after pneumonia.

Many of the preterm babies who survive face a lifetime of disability.

Preterm babies have a higher risk of complications that could lead to death within the first year of life. Their lungs and digestive systems are often not fully developed, and they face a higher risk of brain damage.

These premature babies have not had time to grow and thus they have a low birth weight (birth weight below 5lb 8oz [2.5kg] is defined as low birth weight [LBW]; weight below 3lb 5oz [1.5kg] is very low birth weight; and weight below 2lb 3oz [1kg] is extremely low birth weight.

Common danger

A common cause for infant mortality due to LBW is Respiratory Distress Syndrome (RDS), which may involve atelectasis (collapsed lung or lungs), hypoxaemia (low oxygen absorption), and high carbon dioxide levels.

Approximately 50% of the neonates born at 26-28 weeks’ gestation develop RDS, whereas less than 30% of premature neonates born at 30-31 weeks’ gestation develop the condition.

In RDS, the infant’s immature lungs do not produce enough of an important substance called surfactant.

Surfactant allows the inner surface of the lungs to expand properly when the infant makes the change from the womb to breathing air after birth.

The lungs start to make surfactant only later in the pregnancy, thus, preemies are not able to keep their alveoli open as well as full-term babies. They have to work very hard to fill their alveoli when they breathe, and do not get enough oxygen to their bodies.

Fortunately, RDS is treatable, and many infants do quite well.

Symptoms of RDS include:

*Bluish colour of the skin and mucous membranes

*Brief stop in breathing


*Nasal flaring

*Rapid breathing

*Shallow breathing

*Shortness of breath and grunting sounds while breathing

*Unusual breathing movement – drawing back of the chest muscles with breathing

Investigations for RDS include a blood gas analysis (which will show low oxygen and excess acid in the body fluids).

A chest X-ray will show a characteristic “ground glass” appearance in the lungs, which often develops six to 12 hours after birth.

Treatment for RDS includes respiratory support and early administration of artificial surfactant.

Babies with moderate to severe RDS may need help breathing or oxygenating their blood.

Respiratory support often comes in the form of a nasal cannula, continuous positive airway pressure (CPAP) or mechanical ventilation.

Babies with severe RDS can be given surfactant directly into their lungs, to help the lungs stay inflated while they mature.

Can RDS be prevented?

If premature delivery is unavoidable, then steroids given to the mother before delivery can help a baby’s lungs produce surfactant. Steroids work best when they are given between 24 hours and seven days before birth.

RDS usually develops shortly after birth while the baby is still in the hospital. If you have given birth at home or outside a medical centre, seek emergency attention if your baby develops any breathing difficulty.

Other complications of premature birth include:

*Heart problems – The most common heart problems premature babies experience are patent ductus arteriosus (PDA) and low blood pressure (hypotension).

*Brain problems – Risk of bleeding in the brain.

*Temperature control problems – Premature babies can lose body heat rapidly as they don’t have the stored body fat of a full-term infant, and they can’t generate enough heat to counteract what’s lost through the surface of their bodies.

*Gastrointestinal problems – Preemies are likely to have immature gastrointestinal systems.

*Blood problems – These include anaemia (body doesn’t make enough red blood cells) and infant jaundice (baby’s blood contains an excess of a yellow-coloured pigment of red blood cells called bilirubin).

*Metabolism problems – Abnormally low levels of blood sugar (hypoglycaemia).

*Immune system problems – An underdeveloped immune system, common in premature babies, can lead to infection.

Long-term complications

Cerebral palsy is a disorder of movement, muscle tone or posture that is caused by injury to a preemie’s developing brain, either during pregnancy or while the baby is still young and immature.

Premature babies are also more likely to lag behind their full-term counterparts on various developmental milestones, due to impaired cognitive skills.

They can also suffer from vision, hearing and dental problems, as well as behavioural and psychological problems, and chronic health issues.

Another cause of concern for premature babies is Respiratory Syncytial Viral infection (RSV).

It is so common that most children have been infected with the virus by age two.

However, infection with the respiratory syncytial virus can be severe in some cases, especially in premature babies and infants with underlying health conditions.

Although there’s no vaccine for RSV, there is a protective medication, palivizumab, which can help protect children under age two who are at high risk of serious complications when they get the infection, such as those born prematurely, or with congenital heart or lung disease.

When the pregnancy test turns positive, thinking on how to prevent having a premature baby is not at the top of a new mum’s to-do list. However, planning for a healthy pregnancy is an important part of being an expectant mother.

Many causes of pre-term birth are unexplained and unknown. However, there are many risk factors that increase the chances of babies being born early.

The risk factors for premature labour include:

*A previous premature birth

*Pregnancy with twins, triplets or other multiples

*An interval of less than six months between pregnancies

*Conceiving through in vitro fertilisation

*Problems with the uterus, cervix or placenta

*Chronic conditions like high blood pressure and diabetes

*Smoking cigarettes, drinking alcohol or using illicit drugs

*Mothers under the age of 18 and over 30 years have a greater risk of going into labour early

*Being underweight or overweight before pregnancy

*Lack of prenatal care

*Poor nutrition

*Some infections, particularly of the amniotic and lower genital tract

*Multiple miscarriages or abortions

*Stressful life events and physical injury

Safe motherhood begins before conception with good nutrition and a healthy lifestyle. With appropriate prenatal care, the ideal result is a full-term pregnancy and the delivery of a healthy baby.

The postpartum period in a positive environment will support the physical and emotional needs of the mother, baby, and family.

The birth of a premature infant is a journey few are aware of unless they are faced with the overwhelming experience. The joy of giving birth is challenged with helplessness, often coupled with fear and guilt.

Researchers are investigating foetal programming – the way maternal stress, nutrition, health, or illness experienced during pregnancy, affects offspring from infancy through childhood and into adulthood.

It is very important to provide pre- and post-natal healthcare, education and nutrition to women who otherwise have little or no access to these types of services, to help them understand pregnancy and infant care.

This Nov 17 marks World Prematurity Day, and it is a great opportunity to connect globally and heighten awareness of this important issue.

Let us ensure that no family endures the traumatic and life-changing experience of having a premature or sick baby, without easy access to critical information and community support to help them through their journey.

As a sign of support, do set your Facebook status to read “I am supporting World Prematurity Day – 15 million babies are born too soon every year” on Nov 17.