I’m ashamed to admit that I really didn’t know exactly how the heart worked before Rudy’s heart defect was diagnosed.  I knew that it pumped the body’s blood to where it needed to go but beyond that I really didn’t give it much thought and, truly, took the heart for granted.  Even after Rudy’s diagnosis, I had to reread the “If Your Child Has A Congenital Heart Defect” booklet we received from the cardiologist a few times to wrap my brain around what exactly was going on in our son’s heart and still couldn’t quite grasp the complexities of it all.  As we prepare for the 2nd of Rudy’s three heart surgeries, I thought it would be helpful to explain (as best I understand) what’s going on in Rudy’s heart and what will be asked of it in this next phase of his treatment to kind of put things in perspective.

Rudy had his monthly cardiology appointment with Dr. Harake yesterday.  The symptoms surrounding his pneumonia diagnosis last week really weren’t addressed specifically but the issue of his general health is key as we approach his scheduled heart cath on October 21st.  Should he get sick, the cath will have to be postponed so we are praying for a speedy recovery and good health from here on out – especially as we head into flu season.  In regards to his heart, everything looks about the same and we will see Dr. Harake one more time in mid-October before we head down to UCLA for the heart cath.  There is evidence, however, of the possible narrowing of Rudy’s aorta – a condition known as “Coarctation of the Aorta”  which makes it hard for the blood to flow through this artery to the lower part of the body.  This is something Dr. Harake has been keeping an eye out for and could be happening now because the aorta is not growing with Rudy.  Dr. Harake and the team at UCLA will verify to what degree the aorta has narrowed during October’s heart cath and, if needed, perform a balloon angioplasty to open it up. 

So, here’s my simplified explanation of where we’re at and what’s coming…

In a normal heart, the blood low in oxygen flows from the upper body back to the heart through the SVC (Superior Vena Cava) into the right side of the heart (right atrium and then right ventricle).  The right side of the heart pumps the blood into the pulmonary artery which takes it to the lungs to get fresh oxygen.  After the blood is refreshed with oxygen, it returns to the left side of the heart (left atrium and then left ventricle) where it is pumped to the aorta and taken to the body’s general circulation.

Because Rudy doesn’t have the left side of his heart, he is currently known as a mixed-blood baby.  His oxygenated and non-oxygenated blood flows through the shunt that was attached in his first surgery (Norwood) – see diagram above.  The Glenn procedure will begin the process of separating his blood.  In the diagram above, you’ll see that the SVC that is bringing the blood from the body back to the heart is located in front of the pulmonary artery at a 90 degree angle.  In the Glenn, the SVC is severed from the heart and attached directly to the pulmonary artery.  Essentially, we’ll be relying on the blood from the upper body to “drain” it’s way directly to the lungs instead of being “pumped” to the lungs through the heart.  The success of this procedure is dependent on good lung health as well as little blood resistence so the blood is allowed to drain into the lungs.  (Rudy has been treated with two Pulmonary Hypertension drugs for the past 6 months to reduce this resistance)

I was rereading the history of one of our HLHS friends who passed away last year after his Glenn and his mom described it as “his body couldn’t adjust to the recirculation of the blood”.  This was helpful to me because it reiterated the fact that we are completely rerouting the circulation of Rudy’s blood in this process…asking his body to do something that it wasn’t intended to do.  We are asking A GREAT deal of his little half of heart and surrounding, compromised lungs!  And so, it motivates us to pray…to pray fervently and specifically in preparation for the Glenn…whenever it happens.  We’re doing all we know to do to keep Rudy healthy and strong for the Glenn but, ultimately, the success of this next big leap is out of our control.  We pray for God’s continued protection and mercy AND perfect timing for surgery as we prepare to move forward.

We humbly ask you to join us in praying specifically for the things mentioned above…may our prayers weave a blanket of protection and comfort over Rudy that will prepare him and surround him in the weeks and months ahead.  🙂  As always, thank you…we are so grateful for you!  Love and Hugs…

After several hours and a number of tests in the ER here in Santa Barbara, it looks like Rudy has pnuemonia.  Once his fever was under control, Rudy stabilized and  the ER physician felt comfortable prescribing a course of antibiotics on an outpatient basis and sent us home.  It’s 2:30am, Rudy is resting comfortably in his own bed and we are relieved.  The pnuemonia diagnosis is startling but sure confirms our decision to take him to the ER.  We’re grateful for the care Rudy received at Cottage…the staff there took us and the situation seriously but also evaluated everything within the context of Rudy’s baseline…a healthy balance.   Tonight’s trip to the ER was our first unscheduled trip to the hospital since we brought Rudy home from UCLA in May of  2009 and our first visit to our local hospital.  The staff at Cottage was in communication with the team at UCLA and everything went very smooth.  There is so much for which we’re grateful…we’ll lay low for the next few days, keep a close eye on him and follow up with Rudy’s docs this week.  Thank you for your continued prayers…

 Thanks again…Sleep well!

With school now underway, it’s time to look ahead and do a little planning because  in five short weeks Rudy will turn 2 years old!!!  An astounding realization and one that brings tears of both deep joy and a bit of anxiety as we continue to live life from one monthly cardiology appointment to the next eagerly awaiting the Glenn!  The “not knowing” has always been the hardest part of this wait but having a productive distraction definitely helps and so in lieu of a party and all the gifts this year, our family will be walking in the American Heart Association’s Start! Santa Barbara Heart Walk on October 9th in celebration of Rudy’s birthday and we would like to invite you to join us!

By participating in this year’s Heart Walk, we hope to raise research funds vital to a healthy and active future for Rudy and kids like him. Will you consider  joining our campaign by donating today or joining our team in honor of Rudy?  We are excited that the money raised by our team will fund pediatric research and children’s programs specifically!!  Click on the link below to visit our family’s personal donation page where you can learn more:

http://sbheartwalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=329126&supid=292183374

As team captain of Dr. Harake’s team, my goal is to recruit 15 team members.  If you are interested in registering for the walk, please follow this link to our team page:

http://sbheartwalk.kintera.org/faf/search/searchTeamPart.asp?ievent=329126&lis=1&kntae329126=443716683665467C9F2B56C541AEFFC9&supId=0&team=3870994&cj=Y

It’s impossible for us to come to a major milestone with Rudy and not think of the precious heart friends we have lost in the last 24 months…Katie M, Baby Angel, Ethan S, Logan E, Josiah W…  and so we walk not only in honor of Rudy but also in loving memory of these precious ones whose short lives impacted us deeply.

Thank you, in advance, for helping to make a difference because your donation WILL make a difference.  Rudy’s condition was a death sentence less than 20 years ago and now there is a sophisticated treatment plan born out of research and development!  Imagine what could be done with an even greater understand of the defect!!!  We are honored to partner in this effort.

Of course, it’s not all business!  For those of you who are close enough to walk the walk in person, we will gather at beautiful Chase Palm Park the morning of the event, distribute “Rudy blue” Happy Birthday balloons to all the “party walkers” and celebrate with cake, ice cream and party favors at the finish line!!  What better way is there to spend a gorgeous October morning in Santa Barbara?  We hope you can be a part of the fun!  ‘Just let me know you’ll be coming and I’ll send you more information.  🙂

The morning hustle and bustle is back but, I must admit, it’s amazing how much easier the “before school routine” gets as the kids get older.  Olivia set her alarm last night and was up, had breakfast, got dressed and brushed her hair/teeth AND made her bed while I was in the shower (and I take short showers!).  All I did this morning was make the lunches and Olivia even started that process before I could get to the kitchen.  All were in good spirits this morning and seemed both nervous and eager to get to school…definitely excited to reconnect with old friends and I’m hoping they all make fun, new friends this year as well.   This is a big year for both boys as they are “top dogs” on their campuses…having a 6th and 8th grader means two promotion/graduations at the end of the year!  🙂  My prayer for them both is that they will demonstrate responsibility and leadership in their roles as veterans on campus and enjoy the freedoms and advantages that come with acting responsibly. 

So, it’s just me and Rudy this morning…we have a couple in-home appointments for Rudy and then a list of errands to run so hopefully we’ll be too busy to miss the big kids too much.  🙂 

I think we’ll need to plan some playdates with Rudy’s gal pal Stella since she’s in the same boat with her big sisters off to school…

Thankful, today, for friendships!!

Dr. Dan is a popular guy in AND outside the UCLA community…he even has his own table at Barney’s Beanery in Westwood where a picture of Rudy is proudly displayed (Ha)…even the UCLA facility employees who happened to be seated at Dr. Dan’s table when we stopped in were quite impressed by Rudy’s celebrity!!  (Double Ha)

 Aunt Andi and cousins Mayali & Kyra made a stop in California en route back home to Boston from their summer trip in China!  It’s always a treat for Rudy to see extended family (fun for the rest of us too)…

 We continue to take full advantage of these last two weeks of summer vacation!  Rudy has his next monthly cardiology appointment with Dr. Harake this Friday…will update on his condition then.  Thank you for your continued interest and support!!!  Blessings…

It’s 9am and after a night of observation, Rudy will be discharged sometime before noon today.  As Rolf posted earlier, we had a smooth (albiet early) trip to UCLA yesterday morning, an easy admit into the PCU for pre-op, was in for the bronchoscopy & direct larynoscopy on time and back in the PACU (recovery) in about an hour!  Because of a shortage of beds in the PICU, we hung out in the PACU until a bed opened up at 4pm but Rudy woke up from the anesthesia happy and then took a nice afternoon nap so the time went pretty fast.  Although I secretly hoped they would send us home because of the bed shortage, I was happy to stay and err on the side of being cautious and, as it turned out, we had a great night connecting with old nurse/doctor friends.  Word spread that Rudy was on his way up from recovery and he received a warm welcome fit for a king!  How very blessed we are to have such great care and engaged medical professionals.  I took full advantage of being in the unit and tried to tie up a few loose ends regarding acquisition of a wheelchair and consults with a few of his docs.  All in all, folks around here are amazed at how he has grown and loving how interactive he is now…he is giving quite a few kisses and smiles to everyone who comes in to see him and our overnight stay has been a mutual encouragement I think!  🙂  So we’ll pack up and head home in an hour or two.  Thanks for your prayers!  As Rolf mentioned, Rudy will need a couple of  procedures when it comes time to wean him from the trach but in general there is much to be grateful for in the development of his airways!  Yippy!!

Here it is…August 1…the start of another new month!  Even when one tries to take life one day at a time and stop to savor the moments that make up each day, the days add up so quickly and then “poof” another month flies by.  The milestone of each month for Rudy is a milestone of hope and gratitude and I can’t help but look back at the start of this journey at the time of Rudy’s diagnosis (2 years ago this week!), at the first internet searches we made for “Hypoplastic Left Heart Syndrome” to try to figure out what in the world our little boy had and what we were facing and at the first blog sites we found of little ones well into their fight with HLHS at 18 – 24 months wondering if Rudy would make it that far and…he has.  With all it’s twists and turns, ups and downs and lingering unknowns, we stand before God today profoundly grateful for the past 22 months.  Rudy truly has captured our family’s heart beyond what I allowed myself to dream…I’m still easily overcome by fear but, oh, so thankful.

The past week was full with my sweet family’s return from Alabama, two visits with old friends from out of town and a garage sale the kids and I have been planning for the past month!  Needless to say, Rudy was thrilled with his Dad and big sib’s return home, was pretty smitten by our guests and thought conducting a garage sale is a GREAT way to spend the day!  The common thread for Rudy in all of the above was ATTENTION, ATTENTION, ATTENTION!  My, how he loves to be a part of the action!  🙂  We have just 3 weeks left of our summer vacation and then Rudy is back to long, quiet days with just Mom.  Ha

This week will bring another trip down to UCLA for Rudy’s bronchoscopy.  Rudy and I will head down early Tuesday morning and he will likely be held overnight for observation…if all goes well, we should return home on Wednesday.  This procedure allows Rudy’s ENT, Dr. Shapiro, to take a detailed look at the inside of Rudy’s airways.  She will look for scar tissue and whether or not the cartilage supporting his trachea is strong – crucial to his success weaning off the trach.  We anticipate a good report and pray he doesn’t pick up a nasty bug while in the hospital (his last bout with c-diff was NOT fun!).  So, we’ll certainly have more details to share on Tuesday.

I want to thank everyone for the thoughtful blog comments, emails and cards that we’ve received since my Dad’s passing!  It’s hard to respond to everyone individually but I just want everyone to know how much I appreciate the encouraging words and prayers.  I’m still processing all that I experienced during my visit back to Kansas (some amazing highs and bitter lows) and seeking God for wisdom and understanding as I move forward in grief and in life…your prayers are uplifting and I thank you.

My Dad’s 21-month battle with brain cancer took a sudden turn for the worse this week and I’m making arrangements to fly home.  We found out last week that his treatment is no longer effective and the cancer is spreading fast so my folks met with home hospice in preparation for when they reached the need for hospice care.  An unexpected fall on Sunday evening led to hemorrhaging of the tumor and paralysis of his left side.  Although the ER doctors doubted he would survive the night,  Dad stabilized by Monday morning and was alert…joking with my nieces and nephews when they came to see him.  It has taken us a few days to work out the details on our end but I’m freed up to go home on Friday and stay through next Tuesday.  Fortunately, the big kids are scheduled to fly to Alabama to visit some of Rolf’s family on Friday and thanks to Rolf and a handful of nurse friends, Rudy’s care will be covered here at home!  Rudy had his monthly cardiology appointment yesterday and his heart status has not changed…he remains stable which was confirmation for my heart that I can leave. 

Of course my prayers are for Dad’s comfort and peace…I’d love to make it in time to hug him and sing for him in person but he began experiencing pain today, as expected in this process, and is now sedated on pain medication.  Although they talked on Monday about sending Dad home with hospice care, the plan now is to keep him at the hospital in Lawrence.  I’m comforted by the fact that my brothers are with my Mom and Dad…by the sweet phone conversations I’ve had with my Dad this week…and so deeply grateful for the family trip we were able to make to Kansas over spring break!!  God has been very gracious to us and His peace fills my heart.  Please pray for that peace to blanket my Dad;  for my Mom, brothers & sister-in-law as they walk these hours/days with my Dad and for my precious family as we’re spread all over this next week.  In times like these I just want to gather all my chicks and circle the wagons and instead I’m sending my big kids to the other coast and leaving my little halfheart behind for 5 days…

I’ve been reminded all week of Philippians 4:4-7…verses we shared at Rudy’s dedication and of deep comfort for me the last 21 months.  Here’s a paraphrase:

“Delight yourself in the Lord, yes, and find your joy in Him.

Be known for your gentleness and never forget the nearness of our God.

And don’t worry – whatever is going to come.

Just tell God every detail and the peace of God that no one understands will come to you.

No, don’t worry.  Just tell Him every detail and His peace will come to you.”