3 months of summer gone by…

IMG_6333
Oregon coast, July

It’s been 3 months to the day since I posted, a busy last 3 months! I’ve been suffering from blog-aversion, but I’m going to try to give it a go.

River started off the summer with a new attempt at weaning. After leaving the last GI appointment we went ahead with taking away all tube feedings. We enjoyed a road trip with Grandma and headed to Oregon and Utah. It was So Nice not having to tube feed, it was a relief to think we might be done, although I was skeptical it would last.

As we launched forth into 100F average summer temperatures in the area it became our duty to try and keep her hydrated and healthy and having fun. We went about 4 weeks into this wean before we were forced to begin tube feeding again. We had, what I call, the “dehydration incident summer ’13” happen at a water park. The unforgiving Utah sun sapped little River dry one day even as I did my best to keep her drinking. She experienced terrible stomach cramps, and took naps in between the pain at the park, and that night started having fevers. I began tubing her juice and water that evening, and in a few days we ended up at the ER at Primary Children’s. Although she didn’t continue to suffer from dehydrations symptoms (other than a dark color in her urine and diaper) she had fevers and I was worried about bladder infection. So the hospital wasn’t much help, but they seemed to think she would be fine soon, only testing for a UTI which was negative. If this had been a normal kiddo with no direct port to the stomach, I would have taken her to the ER straight from the water park that day, but knowing I could slowly and surely hydrate her continually at home, I didn’t. I was so bummed about this incident, not for the weaning failure, but that I allowed her to get heat sick and get stuck all day at a stupid water park and experience such discomfort and come close to a serious brush with major dehydration! My son also got sick at with a cough and sore throat also a few days later. I continued to tube feed her from that day, as while we were at the ER I noticed her weight was stagnant, no gain in a month! No good, need to put some weight on my little girl which is what we’ve been working on ever since.

We still had fun adventures and got to travel during that month, yet grateful to leave 100F behind, back in Western Washington where we were occasionally having 85F. When we returned home we also got back on track with potty training, currently doing awesome with that! We’ve kept up about 8-10 oz. of formula tube-fed daily, spread over 2 different times. She is steadily gaining weight again, and currently about 27lbs!

Photo Aug 15, 12 05 37 PM
B-ball at speech therapy

River received several speech therapy sessions this summer with Julie. I feel there has been some improvement since then, River usually speaks in incomplete words, typically missing syllables, and the endings of words. Since ST has begun, she has altered a few of her errors, and has new words now that include an ending sound. Example “Hello Kitty” use to sound like “Eh-Lo-Ti”, has now turned to “eh-lo-ti-Ki-tee”. And “Chip” and “Dip” use to be missing the P sound, but she says them good now! I’m glad we had the few sessions we did as to help her become aware of her speech. Her ST will pick back up at her new preschool, Head Start.

Photo Sep 17, 8 49 12 AM
First day of Preschool!

So on to the big preschool news!! After MUCH paperwork, APPOINTMENTS, and some paperwork, and phone calls, and don’t forget the FRIGGIN’ PAPERWORK, River is enrolled in Head Start! Head Start is a federal pre-school program, typically for low-income families, but they also have spots for therapy kids. River will get weekly ST at the school, as well as being able to attend a half-day great program! Fortunately she does not need to be tube-fed at school. I’m so glad that we are in the position to just feed a few times at home, conveniently, and no strangers have to mess with anything. Of course I had to do a bunch of stuff with the Head Start nurse, and they have an emergency plan in place, but hopefully the school year will go smoothly and her g-tube will be a non-issue.

IMG_6554
Ballet for Tots!

Preschool started this week and she’s attended a few days now. So far she’s doing great, except she melts into tears as soon as I pick her up! But then they tell me how great she did all day.  She is also taking ballet class over at the Y, we started her back in June for a couple times, and now she goes about once a week and loves it! She’s so adorable in her leotards I can’t stand it. She loves playing with her “ballet friends”.

Photo Sep 03, 1 10 53 PM
At the Mended Little Hearts Annual Picnic

We had our 3 month check up with GI and Dr. P. They were happy to see the weight gain she’s made, but of course sorry to hear that the weaning didn’t quite work out. She has reached up to the 8th percentile of BMI…. which is actually a gain on last june’s around 6%. We have some goals to get her growing even more, and we’ve all decided to hold off on any more weaning notions for the time being and revisit it in the spring.

We were able to make it the Mended Little Hearts annual picnic this year! I won’t stop plugging them…. Also we a facebook page now for the group: Mended Little Hearts of Puget Sound

Advertisements

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!

Inconclusive is so not helping me

This week was the big MRI. The MRI that we’ve been putting off for a long long time. Finally, it’s over, or so we thought.

Let’s get right to the news about it. The answer is inconclusive. They cannot yet make a definitive diagnosis if she has tethered cord, or any other condition. ARG!!! We hate not knowing! The doc said that he will pass along the test to a neurological surgeon to see if he can come up with more answers for us. What they did see in the MRI was that her “conus”, the base of her spinal column, is still low lying, just as it was with her initial exams when she was still an inpatient as a preemie. But they could not see any masses, or anything that would for sure point to a tethered cord diagnosis. The other thing of note, is that her conus is more posterior, rather than centered. Since she is not experiencing any clinical symptoms of tethered cord syndrome, that is another reason they cannot diagnosis and treat it. Hopefully the Neurosurgeon can give us a good opinion.

Here is River and I waiting for her MRI, she is feeling very relaxed after being given Versed. She received an IV in her hand, and then was eventually given Propofol to fall asleep for the 25 minute MRI. She was actually quite silly to watch being sedated. She fought it, but in a happy cooing way. She waved at the nurses, and babbled a lot. The MRI experience was very benign for her, thankfully. We want to avoid any medical related trauma for her, naturally.

But in very Conclusive news: River is doing fabulous with her feeding therapy and oral skills!!! This week was a great one for oral advancement. This week during our Mended Little Hearts meeting, we were trying to entertain her with a water bottle, and the lid, she loves playing with lids of all types. I noticed her suckling at the lid edge when I was giving her a sip of water. The next day I gave her a bottle (baby bottle) of juice, I was able to get her to suck a few times. She is very willing now to take a bottle nipple in her mouth now, mainly to bite on, but still she gets the juice out and swallows it. This is just great! She opens her mouth wide for me to put in if she’s in the mood. She has even tried out a few new textures this week. Applesauce and some yogurt melts, both which previously elicited gag response from her. She is doing well with both of these this week! She is actually eating maybe TWO teaspoons worth of food a day, as opposed to her one teaspoon that she’d been achieving.
We are all very excited with these noticeable changes!

Food play with Brother

We’ve been getting out the play food and play pots and pans for her lately, and she loves them. Ewan jumps right in to play with her, and she gets a ton of encouragement from him to put spoons and food in her mouth. You can’t see it very well, but there is applesauce all over those toys, and anything she puts in her mouth she gets some flavor, and then we will also give her a spoon of applesauce during the play and can usually get a bunch of bites down her. What a good girl!  And as soon as she’s ready to be done, she is effectively using the “all done” sign! She loves to tell us All Done now, whenever we are doing PT exercises, feeding her, or trying to put her to bed. LOL! She knows what she doesn’t like!

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

CHD Awareness Tree

A few weeks ago our local chapter of the Mended Little Hearts group put up a Christmas tree at the health center at Mary Bridge Children’s Hospital. I joined the group not too long ago.

Mended Little Hearts is a group thats main focus is the support of those affected by congenital heart disorders in children. There is monthly meetings and other activities. There are also kids and teen groups, but I would say mainly it’s members are the parents that all share this common experience.

http://mendedlittlehearts.org/
I’ve already jumped right in and participated! This year they decided to decorate a tree to promote awareness of this very vast disorder. 1 in 100 babies are born with a heart defect, and it’s the #1 birth defect affecting children worldwide.

I made many photo ornaments of the children of the group. Almost no two defects the same! But each and every one of these kids has had to undergo one or more heart surgeries, many done by the same surgeon! The very same Dr. Woods! I’ve met a lot of fantastic people in this group, and it’s so nice to be able to have parents that we can talk “shop” with!

My mom, Diane, made a lovely stained glass heart that I put on top of a sparkly tree topper. I really wanted to grab attention! And it turned out very lovely! Thanks Mom!