Fight For Preemies- November 17,2009

Fight for Preemies. Nov. 17th

I thought long and hard about what to write.

I know that there will be many people telling their own “preemie” stories of survival. There are way too many in my opinion.
I have many friends who themselves have been touched by having a preemie so many that it seems unfair that I cannot say all of their kids names and when they were born.

Our story is about prematurity. But most importantly it is also about things you can do to help preemies everywhere.
1.Give to The March of Dimes.
I can't think of any other organization that is doing more to find, cure and prevent what ever is causing prematurity and birth defects. March for Babies is held in many locations around the country.
2.IF you are a woman of child-bearing age: Please take a multivitamin that contains folic acid every day. Most of the important development of a baby takes place even before a pregnancy test can tell you if you are pregnant.
3.If you are pregnant. Please get adequate prenatal care. Although there is no way to guarantee you won't have a preemie, having adequate and regular care can limit the severity if not eliminate it altogether.
4.This one everyone will agree with me on. Please don't do drugs or smoke while you are pregnant. You wouldn't put your drink in a bottle and give it to your baby or give him/her a drag off your cigarette. I hope you wouldn't at least.

5. If you know someone going through the experience of having a sick preemie in the nicu...Please do offer to do something practical for them.(water their plants, mow their lawn, take care of laundry) and if you pray tell them you are praying for them. Give them a hug and listen to them...If needed let them cry without feeling judged. Make them know they are loved, because odds are they really don't feel that way. Encourage them to take pictures every day and connect with their baby even in a small way.
6. If there is any gifts that came in handy that I appreciated. It was the little things. Gift cards for food, Gas cards, hand lotion and a disposable camera parents can leave for the nurses to take pictures with while the parents aren't there. a hug, a smile, even a celebration dance when things were super.

Our story is about how prematurity touched us. In late 2005 we became pregnant after having a miscarriage. We sought care as soon as we knew we were pregnant. I went to every appointment that was scheduled. When we were 18 weeks along we had an ultrasound and found out we were having a little boy who we would name Jonathan.
We did not have any problems at all in the pregnancy other than my standard sinus infection , morning sickness etc.
When it came time to deliver at the end of the pregnancy I was told by my doctor I needed a c-section. At the time I was 38 weeks. My husband and I thought okay this baby is as good as here in our arms. We had made it to the end of the term so in our heads we thought we were in the clear.
The day we had him was March 16th 2006. It was a Thursday and it was one of the greatest days we had been looking forward to seeing in the 8 years we had been married.
Everything worked like clockwork until they pulled him out of me. We were waiting and expecting to hear crying; instead what we saw was a baby that was blue and having trouble breathing..
Several hours later he was admitted to a level 3 Neonatal Intensive care unit, intubated and placed on a ventilator, that was trying to breath for him. He was given 3 doses of surfactant (which opens the lungs so air can get in). After getting the surfactant doses we discovered that he had a collection of air in his chest called a pneumothorax. He soon after I yelled at the neonatal staff to fix this and then come tell me placed a tube in his chest to drain the air/blood out.
His lungs were severely premature even though he was born at 39 weeks and 5 days (Term is 40 and we were close enough according to everything our doctor had studied). He had a thing in his heart that in most babies is supposed to close before or right after delivery. He had a resulting heart murmur which no one could explain.
The neonatoligists at the hospital we had delivered at were truly beyond their ability to care for him so on Day 6 they transferred Jonathan via neonatal ambulance across town to the area's highest level Neonatal Intensive Care unit capable of doing a lung bypass called ECMO.
This was supposed to be the day we were at home with him; instead we were mentally bracing ourselves for what ever may lay ahead for him. We did not know if he was going to live or die and this was so terrifying.
We were called and notified that they were transferring him to another better place and that they would be calling us after his arrival. We all breathed a sigh a temporary relief when they told us this as it seemed they had no clue as to how to treat him.
When we were called again and told he had made the trip...we made the trip to the hospital ourselves to see him.
He was placed on a oscillating ventilator and given drugs that paralyzed him so the machine could do the breathing for him.
Seeing your baby with all manner of tubes and wires and seeing all the equipment being used to sustain him was very, very difficult. It was even more difficult to hear the doctor in the new place tell us really how bad off he was and how they were doing everything in their power to help our baby. Seeing your baby's respiration rate on the monitor at zero was both amazing and deeply disturbing.Seeing him shake from the ventilator although we had seen it on video was amazing too. It's one thing to see a baby on a video on it, its quite another to have it be YOURS.
Here is MINE


No parent should be in this position EVER.
We had our share of up and downs and even the bad phone call of your baby is not doing well this morning and we might do ECMO today.(GET UP HERE NOW) He was given a last chance of another treatment besides ECMO and given Nitric Oxide. No it's not laughing gas(nitrous oxide).
He spent a week on it and we saw him turn for the better. And saw him open his eyes for us.
The next week we saw him graduate to a CPAP (continuous positive airway pressure) He was 3 weeks old when I was allowed to finally hold him in my arms. Prior to that we weren't allowed to do anything because everything made his blood saturation go down (called de- satting) Everything except for talking to him, singing to him and mommy placing her hands on him or holding his hand.. Those things made the numbers go up.

We saw him get better and graduate to the progressive care unit, where he would learn how to eat and grow.. On May 10th 2006 he graduated form the NICU and came home with us. He came home on an apnea monitor and oxygen until he was 6 months old. He spent 55 days in the hospital.
Our Story


That is not the end of the story for us. We fought hard and continued to fight hard. He continued to work through our obstacles and our developmental milestones that we had missed. I'll never ever take anything developmentally for granted.

In a way sometimes I feel we cheated. Sadly there were families whose babies grew wings when they passed from this world to the next. We were WELL aware of what was going on and how that could have been us being the ones to say our goodbyes.
We are, and will always be very grateful for the care for our baby and for us.

We were able to find out as a result of our experience with Jonathan(through a consultation with a specialist) and an amniocentesis on Daniel before he was born that we have a propensity to have babies whose lungs develop at a slower rate than other babies at the same gestation. This is a super rare than that has only happened to a handful of people.
We will always need a pre delivery amniocentesis and betamethasone (special steroids given to speed up lung development). We will always need to be in a place where a neonatal team can be readily available to take care of our babies. We will always need to be looked after during my pregnancies by special doctors.

Jonathan is a super kid and continues to be the light of our lives. We are amazed every day that he does something new for us. He is continuing to grow and develop on his own schedule. If you need a picture look at our sidebar.
The only reminders of our NICU journey is a tiny little scar under his armpit from his chest tube.
Other than that we LOVE him to pieces and love the people and places we have gotten to know because of our Journey.
But there are two sayings around our house: There's the "right" way, the wrong way, and then there's the Hoover way(which is almost always a path NO one has ever traveled. And there's this one. After all we have been through to get to where we are Everything is a GET to and no a HAVE To(so enjoy everything.)

With that Thank you so much for letting me share our story with you. I hope you are richly blessed by stopping by.
Please stop by again and leave a comment. Please do everything you can to fight for Preemies. :)