Friday, October 3, 2008

PAIL Awareness

I just wanted to remind everyone that along with it being Breast Cancer Awareness Month, which is very important... I had two great aunts die from it, it is also Pregnancy and Infant Loss Awareness Month. I feel that it is left out so often. I don't know if people don't want to spread the word b/c the thought of a dying baby or miscarriage is just too painful or what but I am doing my best. I thought I would share my story.
Our son, David was born in July 6, 2003 at 23 weeks gestation. It was a normal pregnancy until I woke up one Sunday morning cramping. I called the doctor and explained some symptoms and was told to go directly to labor and delivery. It was my first pregnancy so I had no idea what was going on. When I arrived at the hospital there was a lot of blood; I continued to smile b/c I was so scared I didn't know what else to do. Dh was cracking jokes for the same reason. I'm sure the nurses must have thought we were incredibly heartless but that's the only way we know how to deal with stress.
The doctor checked me with the ultrasound and saw that I was 6cm dilated and David's head was already in the birth canal. There was no stopping this little guy, he was coming.... NOW!! I pushed him out still in his amniotic fluid sac to help protect him at 7 cm. Their was a NICU ambulance team already there to take him to a hospital equipped with handling such a small baby. The doctor thought he was 24 weeks and that's the only reason they accepted him. Babies aren't normally accepted to the NICU before 24 weeks.
I remember that night was horrible. I was no longer pregnant but I had no baby in my arms as proof that I ever was. Just a jelly belly, swollen breasts, and pain. The next day they released me from the hospital and we sped for the 20 miles to the hospital David was in. We were hoping a cop would stop us and escort us but no cop was available when we really wanted one to stop us ;).
We arrived and were told they didn't think he'd make it through the night. He'd already had 6 cardiac arrests and a grade 4 brain bleed. He only weighed 1lb 4oz and was 13" long. He was so tiny and so unstable that I wasn't allowed to hold him.
On July 10 he had heart surgery to close his PDA (it's a duct that runs from the heart to the lungs and naturally closes on full term babies).
July 14: another ultrasound of his head... somehow his brain bleed was reduced to a grade 2 and the doctors didn't understand.
Aug 3: He was moved from a heat bed to an isollette (this was a good sign). His head was swelling though. They decided his brain now had a grade 3 brain bleed and PVL (pockets of fluid on the brain). He also had hydrocephalus. This is caused because a blockage is formed from the brain bleed preventing his ventricular fluid from draining down the spinal column.
August 14: First brain surgery. A temporary shunt was placed in his head.
August 18: We were finally able to hold David for the first time!!
September 10: Taken off the ventilator and put on CPAP (a breathing tube that goes under the nose but pushes the air with enough force to keep the lungs open but the breathing David was doing on his own).
September 22: Shunt stopped working -- he was placed back on the ventilator and had to have another brain surgery to replace shunt.
Sum up of October: Every baby in the nursery developed MRSA (methicillan resistant stapholococus aureaus), which is a really bad staph infection once it enters the body. Lots of people have it on their skin and never know b/c it only affects you when your immune system is low. It is spread by touch. He also had ROP (retinopathy of prematurity), the retina was tearing away from his eye so he had to have laser surgery on both eyes to repair that.
November: Home?? He may get to come home?? Wait... he won't b/c he gained enough weight for a permanent shunt (VP shunt). He had the surgery then we had to wait for the recovery. Then there was an infection in his ventricular fluid so they had to replace it with an EVD shunt (it is another temporary one that drains the fluid outside of his body) Okay... another try with the VP Shunt. Yay!! no infection this time. Now he was having issues with food.
November 20: Another infection in his ventricular fluid -- another emergency brain surgery. Another EVD shunt placed.
November 23: We recieved a phone call from the hospital at 3am asking us to get up there immediately. This had happened before so while we were scared we weren't as scared as we should have been. We arrived and as we were putting on the gown, gloves and masked we were looking into the darkened NICU. The only lights were the glow of the lamps at the nurses station and the lights around one bed -- David's. There were doctors, repiratory therapists and nurses gathered too. I felt my heart sink and knew something was wrong.His infection had spread to his intestines, which caused his food to backup into his stomach, which caused him to asparate. His body was so week they said there was no way to help him. His organs were slowly shutting down and his sats wouldn't go any higher than 30% (they are supposed to be around 95%) -- he wasn't getting the oxygen he needed. The RT was having to constantly bag him to prevent him turning to purple.The doctor knelt down beside me after a few hours of this and said they were running out of options. He said they had called the other doctors and nurses for ideas but nothing seemed to work. They even did a blood transfusion hoping it would help spread oxygen through his body. It was time for us to make a decision. So many prayers had been offered in David's behalf but now was the most excruciating one of all. What to do? Would some miracle happen and he would pull out of this or was it really his time? We made the decision that it was time to pull the tubes and this feeling of peace came on us. We knew what we had to do but it was one of the hardest things I ever had to agree to.After speaking to the doctor I agreed to hold David. Dh and I said our farewells as tears streamed down our faces. Several doctors and nurses who were off came up to say goodbye (David was well known b/c he had been there so long). There were tears everywhere.I wrapped my arms tight around David whispering, "I love you." I felt dh's embrace around us as the tubes were removed. We held that position for a while even after David's form became lifeless. I couldn't let go -- I didn't want to admit my son was dead.
It has been almost 5 years since that day. It is so important to these families who have lost babies, whether through miscarriage, stillborn, or die a few months after birth from SIDS or some other cause that these babies are remembered. People shouldn't live in ignorance -- I had no idea something like this would happen. "It won't happen to me." That was what I thought. If I had known the signs of things like this then maybe we could have prevented David's birth -- maybe not.
Please remember our babies. Know that I am a mom of 3 kids, not just 2. Know that I am still in mourning over the memories I was never able to make with my son and that I long to hold him again someday. I hope and pray that all moms who have lost a baby will find comfort this month in knowing that their babies are remembered by so many people. On October 15 (Pregnancy and Infant Loss Awareness Day) you are supposed to light a candle. Remember with us. =)
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