May 4, 2010 marked the one year anniversary of Ruth Elizabeth's hypo-plastic left heart syndrome diagnosis. It has been a year since we started researching and learning about those four little letters "HLHS" that hold a huge meaning.
Over the past year, we have traveled a very bumpy road. Along the way, we have made friends and been touched by so many heart stories and families. I never would have thought that being diagnosed with a life threatening heart defect could affect and change your life in a positive way. Although it has not been an easy road to travel on, it is one that we are coming to know well.
If we have learned nothing else over the past year, but to love and trust in God then we still have learned so much. God is present in our lives more than ever now. Some say that a real God would not let these things happen. I say that through these "things" God is shaping us and preparing us for our life journey. All things in life that are worth it, are not easy.
So here's to stepping out of our comfort zones, being scared, and still living one day at a time......
Our little peanut...
August 18, 2009...
"God danced the day you were born!"
Finally home and now a month old!
Ruthie's official Church Baptism and her 2 month birthday!
My little pumpkin...Gearing up for Halloween!!
Three months old and showing some of that Ruthie ATTITUDE!
Say what!?! I am 4 months!?!
5 months and trying out that tummy time stuff!
Post- Cath, Lung Biopsy, Liver Biopsy! The day had come for her to be listed on the UNOS Heart Transplant List! Although she is not showing it, she is super happy!
Feb. 3, 2010
Happy 6th month birthday Ruthie, my fighter!
Happy 7 months Birthday!
(And day after St. Patrick's Day!)
Where's Ruths?
There she is!
8 months old and still happily waiting!
9 months old!
Ruthie is currently a very busy little princess. Besides keeping up with all of her meds and keeping an eye on anyone who enters the room, she has been cutting teeth. She is trying to cut number 8 now. I cannot imagine already not feeling the best and then being "sober" and cutting teeth. But she is a trooper.
She also has been working on a schedule over the past couple weeks. We have been trying to establish playtime and naptime and everything in between. We are getting there, slowly, but there is progress.
Her daily 7 West routine consists of:
6am: Wake up call! Time for diaper change. Vitals check. And of course, every girl's favorite thing.. the scale!
8am: Medicine and assessment time. We meet her day's nurse and hear what the tentative plan is for the day.
9am: PT time! Somewhere between 9-9:45 Physical therapy comes in to play with and work on developmental skills with Ruthie. She practices sitting up, reaching for toys, rolling to her sides and tummy time (if she will let us)!
After PT, we usually see the doctors for their morning rounds. They ask about Ruth, tell me everything that they are thinking about or worried about or excited about with her and then we make our daily plan.
9:30-10am- Time for us to fight the nasty thing called sleep. Some days, its a breeze. She cuddles in my arms and is out in a few seconds. Other days, though, she fights sleep by forcing her one eye to stay open or squirming around like a worm. Either way, once she hits nap time, she is done!
11am or so- Ruthie gets to taste test formula and
some baby food. She sits up in her little feeding chair and tries things out. Some days she can't get enough. But, once again, other days she doesn't even want to see that stuff. So we try our best each day. She is still progressing, just slowly.
By noon, Ruthie is ready to watch some Veggietales and hang out and or cat nap.
Of course vitals check and assessment time too.
1-2pm: Nap time again or pretend nap time (where she hides under her covers when I try to talk to her)! We are trying to get her to nap around 1:30-2 so then she will be happy and ready for Occupational Therapy (OT) around 3pm. But we shall see.
At 4pm, we have another vitals check and usually a doctor or two that comes in to check in for the evening.
At 7pm, the new nurse for the night comes in. She works with medicines, checking the pumps, etc. She also does her assessment for the evening and makes plans for the night.
The evenings are very random for Ruthie. She sometimes has visitors at night. Otherwise, by 7-8pm she is ready once again for Veggie tales and then bed.
She is a pretty "normal" baby despite being attached to TPN, lipids, feeds, milirone, a pulse ox and ekg stickers. She is a poster "hospital baby" (I guess if there was one). Even a few nurses have said that she is a good, calm, happy princess, unless she doesn't feel good... and then WATCH OUT for the DIVA!.
However, things have changed a little bit now.
On Friday, May 28th Ruthie was NP swabbed for nasal infection. She has been coughing a whole bunch lately and it seems like the cough is getting worse. In order to keep Ruthie protected, she went on isolation Friday afternoon.
Saturday, May 29th at 5:30 am, I received a call from Jennifer (a 7 West nurse) saying that Ruthie was moving to the CICU for closer monitoring. Over the course of the night, her cough had worsened and she had become irritable. They turned off her feeds to see if her stomach was not tolerating the 5 mils an hour. (Her feeds had been turned off the weekend before and Ruthie's main source of nutrition was now through TPN and lipids since her stomach is not as absorbent as it had been. So we were in the process of increasing her feeds). However, that did not seem to cut it. She was still coughing like crazy and very fussy. During these periods, she was dropping her saturation levels into the lower 60s and it was taking a bit of time to recover.
So to be proactive, they moved her to the CICU for closer monitoring and to figure out whether it was her heart or just a cold.
So right now we are still at a standstill. Ruthie is on 1.5L of 02 through nasal cannulas. They have restarted her feeds and those are running at 10 mils an hour. She is still on her cocktail of medicines including diuretics, milirone (heart med), reglan and another reflex/indigestion medicine, and asprin (as a blood thinner). She is no longer on potassium orally since they can add it to her TPN. This makes me super happy because sometimes that potassium came right back up because it was so rough on her stomach.
The doctors are once again talking about a heart cath this week. They have taken a few x-rays and done an echo, but nothing seems to be the problem. They are not sure if she just has a little bug and that is causing her coughing. Or if her heart failure is progressing. So we are just waiting to see what happens.
I think there is a common theme in all of this: WAITING!
If anyone really knew me before all of this hit my plate, they would know that "waiting" is not something I do well. If I want something, I want it now. However, that attitude leads to much disappoint and heartache when that "something" (aka the heart for Ruthie) doesn't appear. I am not going to lie and say that I still don't get my heartbroken with this whole situation. Each day, I wake up thinking... "Is this the day we get our heart?" And each night, I go to bed a bit disappointed that we hadn't earned our heart yet. I feel as though I am becoming a bit jaded with this whole experience. I am still VERY hopeful, but this "waiting game" is one hell of a roller coaster ride and frankly I would like to get off!
As of June 3, 2010, Ruthie will hit the average waiting time period for the heart transplant list at SLCH. The average time is 6-16 weeks. June 3rd = 16 weeks on the dot! We are so very grateful for each day God has given us with Ruthie. She is still my sunshine and forever will be!
It is amazing what a year can bring you. I am so thankful for each day over this past year. I have learned so much about myself and this world through the eyes of a now 9 month old. God has been seen through Ruth by so many people. Thank you, God, for letting your light shine through her smiles. We are blessed!
Please continue to pray for patience, peace and guidance.
In God's time all will be right!
Heart hugs!
Laura
Thank you for the updates. Ruthie is so blessed that you are her mommy. The waiting game is hard and the roller coaster is amazingly long...we have wanted to get off before, but so glad we stayed on it...what a ride. You and your family are always in my thoughts and prayers.
ReplyDeleteI am a new follower to your blog so the detailed update has really gotten me up to speed. Your little girl is absolutely beautiful. Praying that your little girls perfect heart will come soon.
ReplyDeleteI know you dont know me but I found this article on our local healing heart org for heart babies and thought of your little one. sending our love and blessing to you. Ivy murphy
ReplyDeleteLehi infant receives hospital's first incompatible heart transplant
May 25th, 2010 @ 9:54pm
By Ed Yeates
SALT LAKE CITY -- Surgeons at Primary Children's Medical Center have transplanted Utah's first "incompatible" heart into a three and a half-month-old infant from Lehi. Though the heart was not a match for the boy's blood type, he did not reject it.
Incompatible hearts have been transplanted in selected infants in Canada and at some other medical centers in the United States, but this was the first such transplant for the Intermountain area and Primary Children's Medical Center.
KSL was at bedside while a music therapist hummed and stroked the shoulder of three and a half-month-old Landen Bowers.
Dr. Melanie Everitt, a pediatric cardiologist at Primary Children's, said, "For some reason, these patients who have a transplant in infancy with an incompatible heart donor do not go on to develop antibodies against that heart."
Though Landen's blood is type O, he was able to get an A or B or an AB donor heart because at that young age his immune system had not yet produced antibodies to reject those hearts.
Landen was born with an aggressive form of cardiomyopathy. His dad nicknamed him "Lion" because of the boy's strong fight to stay alive. But in recent weeks that battle weakened; time began rapidly running out.
"We were very concerned that Landen was going to die prior to us finding a suitable donor," Everitt said.
"It was scary, but we felt it was the right thing for our son, and we trusted the doctors at Primary completely," said Tammy Bowers, Landen's mother.
When the new heart arrived, the donor family had sent a little stuffed animal as a gift for Landen.
"The thoughtful family had given us this beautiful lamb in remembrance of their baby," Tammy explained.
"To think that family, in their greatest time of trial, would think to do anything more and above what they had already done was very special," said Joseph Bowers, Landen's dad.
At bedside, the lamb was placed on one side of Landen, the lion on the other. They are symbolic reminders of the ultimate gift and what it means to both families.
"We pray every night for that family and for the gift they gave our son," Tammy said.
The prognosis is excellent, not only for Landen, but other infants who can now draw from a larger pool of donor hearts. As Everitt explained it, "Our standard now is to evaluate every patient less than a year of age who is undergoing a heart transplant to see if they could have an incompatible heart transplant."
Landen was released from Primary Children's Hospital late Tuesday afternoon. He's home now with his healthy incompatible, but very compatible heart.
Praying for you guys ALWAYS! I can't believe little Ruthie is NINE months old already! Wow!!
ReplyDeleteLaura, you're an amazing mom, and Ruthie is so blessed to have you by her side. I can't imagine how difficult waiting on that precious heart is for you all, but you wait with such grace. We're praying for strength for your whole family, and especially Ruthie!!
Big heart hugs and prayers,
Shannon
Hi Laura! Thank you so much for commenting on my blog. I am so glad to "meet" sweet Ruthie and now get to watch her incredibly story unfold. I so often think of these special heart kids and the powerful testimony they will have to point to God's love and power! May God give you the strength to continue waiting until that perfect moment when Ruthie gets her heart. We will pray for continued strength and endurance for your family!
ReplyDeleteJesse