Back to the NICU

As my baby girl desperately reaches towards my keyboard, trying so hard to assault my computer and drool all over it, I never do forget how tiny and fragile she once was, and how long and it took to finally get her home with us. I have always wanted to give back to the hospital somehow, the NICU or the ICN.

As Mother’s Day approaches, I will never forget how last year at this time, we were visiting her in there everyday. How Mother’s Day was her true due date, and how she came way too early. I still struggle to forgive and forget how it was somebody else’s decision to take her out. I still hang onto some of those feelings, which I need to learn to let go. I didn’t get to choose when she came (do we ever?). But did she really have to come out so early? Did my doctor truly believe she was in danger? Did she really have to suffer such an early birth? AHHHHH I need to get over it, but it’s really hard!!! We attended a lecture recently on PTSD, it was given at our Mended Little Hearts meeting. PTSD is now recognized as a valid medical condition for parents whose child suffers a “life threatening event”. Our guest speaker said it is possible to suffer from symptoms of PTSD and not actually have PTSD. We most definitely have suffered from the symptoms, but gratefully it never was a full blown condition. My heart still quickens sometimes when I encounter triggers. Last week at the MRI I felt a touch of panic, memories. It’s my own journey to learn to overcome these things. I will be very hopeful that this year, my Mother’s Day, will be full of great memories instead of what happened last year.

But all of this has also been brought on by the fact that I made this picture up finally to give to the NICU/ICN. There were such pictures, all around both the NICU and ICN hallways that were given by parents, drawings, or photos of their children. Some letters, and short stories also. Sometimes they expressed gratitude, even though their child didn’t survive. Most of the time they expressed gratitude and photos of the child getting big and healthy and leaving the hospital! The pictures in the ICN, the stories of success, I did look at while I was there, and they did give me a sense of hope. Pete and I have always wanted to give one of these, and hope that it hangs somewhere where is might give a stressed out parent a little hope. Also to thank the many staff member, nurses and doctors, that helped to ensure River’s success.

It’s all done and ready to go! Next week I will call up our old case manager and arrange a time to bring it by and, of course, show off River! And hopefully, get a sense of closure, maybe I can learn to move on from those memories of fear and panic and trauma, and learn to feel the peace and gratitude in it’s place!

An Updated Story

As a “blog” celebration of River’s first year, I’ve rewritten River’s “About” page. I knew that it needed to be redone, since it was getting out-of-date.

I wanted to go over her first year in my mind, and re-write my reflections of my experience. I’m so excited to see her turn one! It was the craziest year of my family’s lives. But we’ve made it through it! With support, strength, faith and a little bit of luck, we have all survived to be better people.

I sometimes wonder why. Why us? Why have we been give such special children? Sometimes during dark hours your mind goes adrift and you think that you are doomed to live in suffering and hardship. But through many different channels of knowledge and thought, Pete and I concluded: it’s because we can. We can be these children’s parents, so we were given them. And so every once in a while when I think I’ve reached my limit of sanity and capability, I remember it’s because I was chosen to do so, and I was only chosen because I am capable. And then right away my uncertainty washes away, and I turn and see my children’s glowing faces, and I know it’s true.

This has been one long and adventurous year. I’m glad it’s in the past!!!

In a few weeks my little angel will be turning one! And it was HARD WON.

River Belle, our lucky lass

CHD Awareness Week 2011

This week (February 7 – 14) is Congential Heart Defect/Childhood Heart Disease Awareness Week. It is an excellent time to spread awareness of this devastating condition.

My painful and involuntary introduction to being a heart parent happened shortly after River was born. Since River was born a “2 vessel baby” (she had Single Umbilical Artery in utero) she got a mandatory echocardiogram. SUA babies have a 40% chance of heart defects. Fortunately this was necessary. And this had nothing to do with her significant prematurity. They caught her defects right away. Many other babies are not so lucky.

Her first surgery was a left thoracotomy(surgery going into the left side of her chest) and it was an “extended end to end repair of the coractation of the aorta”. This surgery took place on 3/31/10. River was 1.7 kg, and only 2 weeks old. In other words: TOTAL NIGHTMARISH EMOTIONAL TRAUMA. I just went over all of my day to day “diary” entries on Carepages, the way I used to keep our family and friends up-to-date on River’s progress. I was so factual, and put a positive spin on everything I wrote. I tried desperately not to scare everyone, or let them know what a total and complete wreck I was. I didn’t want them to feel my pain, I didn’t want them to cry everyday like I was.

Here were the first few days:

3/31/10: River is now currently recovering in the Ped ICU. She had a successful surgery, and the surgeon Dr. Ronald Woods was very pleased and said everything went as well as it could go. The surgery was to repair the Coarctation of her aorta. It was done through the left side of the chest (thoracotomy) and it is considered “closed heart surgery”. She will be recovering for the next 24-48 hours in the PICU, then will be relocated to the Mary Bridge ward for a few more days. Following a hopefully speedy and uneventful recovery, she will then be moved back into the NICU to continue her preemie treatment until her eventual home coming.

4/1/10: Today’s progress has been good. River’s chest tubes came out very early today. Her breathing tube will be removed soon. They are concerned about fluid in her lungs, but it has been getting better throughout the day. They expect her to be out of the PICU by tomorrow and by to the NICU and back on track to feeding and growing.

4/2/10: River’s breathing tube was removed yesterday afternoon. She is back on CPAP to assist her with her breathing, her symptoms related to her breathing are just still due to her preemie-ness and not her heart. Currently her heart is sounding good. She will begin feeding today again, breastmilk delivered through a feeding tube. She is expected to be released from PICU tomorrow and go back downstairs to the NICU. Her heart surgery recovery(incision site, etc) has gone well.

This was all very true, but so lacking in the truth of the matter. If you read between the lines you might read that I saw my baby stop breathing and turn gray and watch the PICU team jump into action. You might read that I was losing my mind with anxiety and fear. You might truly understand what it could be like to be the parent of a baby with CHD.

Below are some pictures I’ve never shown. They break my heart, but now it’s in the past I can share them.

Below is a CHD fact sheet. Research is terribly underfunded! Please raise awareness!

CHD FACT SHEET

Incidence, Morbidity & Mortality

  • Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.
  • Congenital heart defects are the #1 cause of birth defect related deaths.
  • Congenital heart defects are the leading cause of all infant deaths in theUnited States.
  • Each year approximately 40,000 babies are born in the United Stateswith a congenital heart defect. thousands of them will not reach their first birthday and thousands more die before they reach adulthood.
  • Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood.

CHF

  • The Children’s Heart Foundation is the only organization that was created to exclusively fund congenital heart defect research.
  • The Children’s Heart Foundation has directed $3 million to 34 basic science, translational and clinical CHD research projects at leading research centers across the US and Canada.
  • CHF has published and distributed 15,000 copies of It’s My Heart, a patient and parent resource book.
  • CHF has established five Chapters and has volunteers in many USstates.

Lifelong Disease

  • Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities.
  • There are an estimated 2,000,000 CHD survivors in the United States.
  • For the first time, more than 50% of the CHD survivors are adults.
  • 10% of all CHD cases evaluated in an Adult CHD clinic are first diagnosed in adulthood.

Economic Factors

  • 91,000 life years are lost each year in this country due to congenital heart defects.
  • The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.

General CHD FACTS

  • More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.
  • There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
  • In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

Research Allocations & Impact

  • Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.
  • Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.
  • Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
  • The NHLBI has stated that Congenital Heart Defects are a serious and underappreciated global health problem.
    In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.

*taken from http://www.childrensheartfoundation.org/about-chf/fact-sheets

Release and a well deserved break

This morning was an exhausting trial of River’s, Ewan’s, and my patience. River had her Neonatal Development Clinic follow-up this morning, and I was expecting to be there a while, but not nearly 3 hours. They were way over booked! They monitor the progress of premmies, and address any concerns with development, and help you if needed with programs and therapy. But it was an exhausting and irritating wait today, and we ended up canceling her weekly PT today because River was so tired by the end.
BUT the good news is we don’t have to go back!! At 18 months old I can choose to come back if there are concerns. River has all her necessary therapists and medical care and they released us!!! One less thing.
Now as I was going over with them her medical care and how much I am there it dawned on me that this trip home to Utah starting tomorrow will not only get River to Utah, but give her and I a MUCH needed break from medical visits. Holy Crap I’m suddenly very excited to not see Mary Bridge for 2 whole weeks!!!