Saturday, December 8, 2012

Merry Christmas

It's almost hard to believe Ryleigh is almost 5 months next week. We are so blessed to have her. A wonderful Christmas it will be.

Wednesday, November 14, 2012

Synergis RSV

Just a note I learned. Cardiac (or high risk) babies should all get a monthly Synergis shot during high RSV season to fight off respiratory illnesses. Season is October to March. Ry had her shot yesterday and I can tell you babies don't like them. Apparently they burn! She was not a happy camper! I guess they only need them the first 6 months maybe 1st year of life. Since she's a summer baby, she fell into the high season and age range.

Monday, November 12, 2012

Sunday, November 11, 2012

Latest and Greatest- pre&post discharge

Ry is doing great. She slept almost 9 hours last night. Her incision spots where her cath was inserted look great. She's had no bleeding. She's on aspirin to keep the potential of clotting down. Her mood has been jovial. So proud of her. She's been fighting nap time. Maybe afraid if she falls asleep she will wake up in a strange place. We did have an echo done right before we were discharged and the results were mixed.

Recap:
On Wednesday of last week we had a cardiology visit and they informed us her pulmonary branches were nearly closed due to stenosis and scarring where the conduit meets the branches. She was admitted Friday for a cath procedure. We were released yesterday. The results were good, the left branched opened a bit and looks good, the right side responded but not that well. On the scale of blood flow Ryleigh is a negative 2, which means her procedure was a good thing, but is a band aid, it was thought that it bought her another 6-12 months before another surgery, BUT her echo yesterday before discharge the cardiologist told us that her aorta was pressing on the right branch and its adding pressure further restricting blood flow. Her branches are small to begin with. So we see the cardiologist in 3 weeks if there is no improvement we've been prepped that her open heart could be sooner than expected and they won't do another cath. However, if she responds well in the next 3 weeks, they may try the balloon again. They will not stent because it will not grown with her and babies first year is a growth explosion. They have told us they will cut and patch the branches to expand them and replace conduit to suite the expansion.

So we will continue to monitor her until her next cardiology visit on the 28th of November hoping her branches opened a bit more or stayed the same post cath procedure. Will post an update when we have more news. This photo was of her getting ready to leave the hospital. She seemed very pleased! So were we!

Procedure Underway

They've started. We've been prepped on the good, bad, and ugly. Major concern now is that her suture line will hold and not tear. Good is she won't even need balloon and worst is she will be in open heart surgery today. Hoping for balloon and good results.

Cardiology Update

Ry had her cardiology visit today. Well I'm nursing a migraine again, but it only got worse when we got the results of Ry's echo, her cardiologist was not happy, her stenosis is near emergency levels, severe narrowing occurred since last appt. Her case is being presented tomorrow, they want her in surgery next week to address her stenosis, both pulmonary branches are nearly closed preventing adequate blood flood. I'm so sad, but I know they will get her all fixed up next week. She will be checked about every 2 weeks after cath surgery to see if the procedure worked, they will try this process twice, if it is not fixing it she will be scheduled for another open heart surgery to replace her pulmonary branches, which were small to start with. So I guess it's not the worst news but not the best. Hoping her balloon procedure(s) fix the issue for now.

Friday, November 9, 2012

Procedure Complete

Her procedure went well. They were able to open the left pulmonary branch with the balloon nicely and it responded very well. The right pulmonary branch was more complicated and they were able to make it better, but not where it needs to be. Soooooo this means we've bought some time! Her doctor said she will be monitored closely for the next 6 months going to her cardiologist for testing about every 3-4 weeks. Best case she won't need another open heart surgery for 12 months. If things begin to narrow again (stenosis and scarring) we are looking at 6 months. Overall I'm pleased she can continue to grown and recover from the first surgery. Procedure in my mind was a success!

Ry's Cath Procedure

Whew, we are at the hospital for Ryleigh's cath procedure. Hoping this will have good results. I've been fine until we pulled in the parking garage and now I struggling to not start crying. She's so peaceful sleeping, but I know she will wake wanting food soon. Wolfsons Children's Hospital. Updates to come. We are checking in now, they will take her back in a bit.

Wednesday, October 31, 2012

Heart Mom

While I would love to say it gets easier being a heart mom, it would be a lie. It is such an emotional roller coaster. Pain finds you even when it is not your own baby in crisis. You find yourself checking in on other babies that may be sick, grieving with other heart parents who have lost, and rejoicing in moments of good news and milestones. This week I was elated to hear of two new heart babies being born and doing great in spite of having a CHD, both TA babies like Ry, but devastatingly saddened to hear of two heart babies who lost their battle. I feel so helpless! It makes me stop and think about the little Halloween outfits that will unexpectedly be unworn, the purchased baby clothes that once brought a smile, now bring tears of sadness as they are gently packed away, the empty car seat staying in the car until the strength to remove it is found, the phone calls of what should be well wishes going unanswered because there are no answers to give, the parents finding courage to face the unsettled quiet of a house that should be filled with first moments, chatter, and a baby's hungry cries. Every single day with my daughter is a gift!!!! I know she is special and I treasure every moment because as a heart mom you never know if it will be your last. Even perfectly simple procedures can have devastating results. My mind just will not stop thinking of the pain heart parents who have lost a baby/child go through, but I am inspired at how many heart babies are thriving and how medicine is advancing - it is hope after all, which is what becomes your best friend right beside uncertainty. Hats off to other heart moms, you are amazing, beautiful, and strong! To all of the CHD kids we know, if I could say one thing to you it would be you inspire me, you have shown me Ry has no limits and while there will be challenges, there is nothing that can stop greatness from being great!

Tuesday, October 9, 2012

Ry's 1st Official Pediatrician Visit - 11 Week Measurements


So for Ry’s age, weight, length, and head circumference, Ry comes in at 39% in head circumference, 55% in length, and a very low 17% in weight. 11 weeks = 10.1lbs, 23 ¼” long, and head circumference is 39cm. She didn’t like her shots, but only cried for a minute or two. She eats about 22-24 ounces of formula a day, but should be at about 28-32 ounces. Pediatrician says she has some reflux, so she will go on a prescription for that, but did note she looks great, so no worries here!

Monday, October 8, 2012

Possible Future of Valve Replacements

I saw this posted on a CHD support site. It appears doctors in Boston are having success with nonhuman expandable valves. This could change the face of valve replacement for CHD kids!

It has given me a reason to smile. I would love it if Ry only had to go through one more OHS!

http://www.sacbee.com/2012/10/03/4877579/boston-childrens-surgeons-pilot.html

Saturday, October 6, 2012

"Thoughts of a Mother", by an NICU Nurse

Another heart mom shared this with me and I thought it would be nice to post here. This was written by an NICU nurse about all special needs children. Pretty neat, too bad even in the heart community people try to "outdo" each other by one upping someone else with "my kid has a worse story than yours." Well for the record I like the fact that Ry is a textbook case and the road has been smooth, we like upbeat news and like to share that our lives up to this point have been pretty drama free, we don't feel the need to gain sympathy or the attention of others as we save it for when it is really needed or we reserve it for the families that truly need the thoughts and well wishes who are not attention seekers. However, we get those that think we are bragging because she is such a good case when other people's babies are dying, so you can't really win for losing! I will never feel bad or be made to feel bad because my child lived and is doing great! She is a miracle and everyone needs to embrace that!

Thoughts of a Mother
By Maureen K. Higgins

Many of you I have never even met face to face, but I’ve searched you out every day. I’ve looked for you on the Internet, on playgrounds and in grocery stores. I’ve become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my “sisters.”

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist’s offices and NICU units, in obstetrician’ s offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn’t quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children’s special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk or hear, some are unable to walk. Some eat through feeding tubes. Some live in a different world.

We do not discriminate against those mothers whose children’s needs are not as “special” as our child’s. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know “the” specialists in the field. We know “the” neurologists, “the” hospitals, “the” wonder drugs, “the” treatments. We know “the” tests that need to be done, we know “the” degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during “tantrums” and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can’t understand what it’s like to be in our sorority, and don’t even want to try.

We have our own personal copies of Emily Perl Kingsley’s “A Trip To Holland” and Erma Bombeck’s “The Special Mother.” We keep them by our bedside and read and reread them during our toughest hours. We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors’ front doors on Halloween, and we have found ways to help our deaf children form the words, “trick or treat.” We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We’ve gotten up every morning since our journey began wondering how we’d make it through another day, and gone to bed every evening not sure how we did it.

We’ve mourned the fact that we never got to relax and sip red wine in Italy. We’ve mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we’ve mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.
XX

Cracking herself up

Friday, October 5, 2012

My wish

I certainly hope these tiny feet will be used for dancing.

Truncus Arteriosus Surgery Video

This video shows a baby undergoing a Truncus repair just like Ry's. I found it interesting that they placed a 10MM conduit in this preemie, when Ry got only a 9MM and she was full term and a good weight. You want a good size conduit so the need for the next surgery is farther out. She will more than likely have another OHS in a year or two.


http://www.youtube.com/watch?v=HXlWeSGIR7A&feature=related

Details about the video:
Redmond Burke MD, Chief of Pediatric Cardiovascular Surgery at Miami Children's Hospital, demonstrates the operative repair and postoperative recovery for a premature newborn baby with Truncus Arteriosus. The video is graphic. The program website is www.pediatricheartsurgery.com and Dr Burke can be reached at Redmond111@aol.com


Cardiac Program Website: http://www.pediatricheartsurgery.com
Wikipedia: http://en.wikipedia.org/wiki/Redmond_Burke
Youtube channel: http://www.youtube.com/user/Redmond111
Facebook: http://www.facebook.com/redmond.burke

I hope this helps those who are about to go through this to understand this complex surgery. It helped me, but I can't believe little Ry went through this. I loved when they started the heart back after the repair!

Be well friends!
Lee Ann

Wednesday, October 3, 2012

A little ode to the kids

Here are our babies! Cael as a baby and now with Ry.

The many faces of Ry

She has so many neat faces. Here are a few. She is such a happy baby! She almost has me forgetting she is a heart baby. She's 10 weeks this week! Time flys!

Her zipper

I created this photo for a cake we want to have made for the hospital staff that took care of Ryleigh.

Ryleigh is growing and doing great.

Well they say no news is good news and this is also true of Ryleigh. She's doing so good, eating well, outgrowing her newborn clothes, and keeps me on my toes. She's also a lot like her momma, low maintenance. She goes in a couple of weeks for a cardiology appt. to determine when her cath lab surgery will be, so that will be my next update. Until then enjoy some photos!

Thursday, September 13, 2012

Incision, Cardiology, Next Steps


We had an eventful last two weeks. Since learning about the pulmonary stenosis that threatens the free blood flow to the lungs from Ry' heart and her decreased right ventricle function, her incision site got a localized infection. We checked into the hospital on Sunday 9/09 and were released after monitoring and IV antibiotics Monday afternoon. She’s such a trooper. Her site looks much better now and her zipper is looking beautiful!

We saw her cardiologist on Wednesday 9/12, and she said we can come back in one month and they will see if there has been any changes in her heart (Echo and EKG). They want her to get to a couple of month from birth and surgery to do the next procedure as they want the area nicely healed. We don’t want to see her heart condition declining so the next procedure will be done as proactively as possible.

So what is ventricle stenosis and what can be done? For Ry she will have a balloon procedure at some point in the next month or two.

Pulmonary valve stenosis
Source: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002086/

Valvular pulmonary stenosis; Heart valve pulmonary stenosis; Pulmonary stenosis; Stenosis - pulmonary valve; Balloon valvuloplasty - pulmonary

Last reviewed: June 7, 2012.
Pulmonary valve stenosis is a heart valve disorder that involves the pulmonary valve.

This valve separates the right ventricle (one of the chambers in the heart) and the pulmonary artery. The pulmonary artery carries oxygen-poor blood to the lungs.
Stenosis, or narrowing, occurs when the valve cannot open wide enough. As a result, less blood flows to the lungs.

Causes, incidence, and risk factors
Narrowing of the pulmonary valve is usually present at birth (congenital). It is caused by a problem that occurs when the unborn baby (fetus) is developing. The cause is unknown, but genetics may play a role.

Narrowing that occurs in the valve itself is called pulmonary valve stenosis. There may also be narrowing just before or just after the valve.
The defect may occur alone or with other heart defects that are present at birth (congenital). The condition can be mild or severe.

Pulmonary valve stenosis is a rare disorder.
In some cases, pulmonary valve stenosis runs in families.

Symptoms
Many cases of pulmonary valve stenosis are mild and do not cause symptoms. These infants are usually found to have a murmur on a routine heart examination.

When the valve narrowing (stenosis) is moderate to severe, the symptoms include:

Symptoms may get worse with exercise or activity.

Signs and tests
The health care provider may hear a heart murmur when listening to your heart using a stethoscope. Murmurs are blowing, whooshing, or rasping sounds heard during a heartbeat.

Tests used to diagnose pulmonary stenosis may include:


The health care provider will grade the severity of the valve stenosis to plan treatment.
Treatment

Sometimes, treatment may not be needed if the disorder is mild.
When there are also other heart defects, medications may be used to:

  • Help blood flow through the heart (prostaglandins)
  • Help the heart beat stronger
  • Prevent clots (blood thinners)
  • Remove excess fluid (water pills)
  • Treat abnormal heartbeats and rhythms

Percutaneous balloon pulmonary dilation (valvuloplasty) may be performed when no other heart defects are present.

  • This procedure is done through an artery in the groin.
  • The doctor sends a flexible tube (catheter) with a balloon attached to the end up to the heart. Special x-rays are used to help guide the catheter.
  • The balloon stretches the opening of the valve.
Some patients may need heart surgery to repair or replace the pulmonary valve. The new valve can be made from different materials. If the valve cannot be repaired or replaced, other procedures may be needed.

Expectations (prognosis)
Patients with mild disease rarely get worse. However, those with moderate to severe disease will get worse. The outcome is good with successful surgery or balloon dilation. Other congenital heart defects may be a factor in the outlook.

Most often, the new valves can last for decades. Others wear out and will need to be replaced.
Complications

  • Abnormal heartbeats (arrhythmias)
  • Death
  • Heart failure and enlargement of the right side of the heart
  • Leaking of blood back into the right ventricle (pulmonary regurgitation) after repair

Saturday, September 1, 2012

Heart Hope, the movie

This short trailer was hard to watch because it showed so many scenes during and after surgery that reminded me of all the things I saw when we were allowed to see Ryleigh after her surgery. It's very fresh still, but my reality. If you have time, watch this trailer and the movie.

http://www.heartsofhopethemovie.com/Trailer.html

Thursday, August 30, 2012

Expect the Unexpected


I guess a part of our new normal is to not expect the expected when we go see her doctors. We had a cardiologist visit this past week and I thought it would be a simple, “hey she’s doing great see you in a month or two”, but it turned into more. Ryleigh’s heart is showing signs of loss of function in the right chamber, some valve leaking, and narrowing of the vessels. What all of this means is the little thing will need to be watched closely for heart failure until her next procedure which should be in the next 6 weeks. I am not sure I caught everything her cardiologist was telling me as I was a bit dazed but it appears the right chamber has decreased function because it is overworked due to the narrowing and leaking of the vessels. She also went on heart meds to lower her blood pressure to give her overworked heart a break.

While this can be viewed as a blow, it is not below the knees and we will recover. Her story has been primarily uneventful, so we expected some hiccups along the way. While it still upsets me, I can’t focus on what I can’t control, so I am enjoying every moment with her because the next one is not guaranteed. If I spend my time focusing on the negative I won’t enjoy all the positive!

She will be visiting her cardiologist in 2 weeks to see how everything is holding up, she wants her to be at least 2 months old before another procedure. It will be in the Cath Lab and she should go in and come out the next day latest if all goes as planned.

To lighten the mood here are some recent photos!
I'm cute and I know it.

Ryleigh and her doll

Look at me lifting my head!

Kiss Kiss

She stares at the doll in a loving but creepy way!



Peek-a-boo, where's Ryleigh?

Mommy and me!

Big brother Cael and Ryleigh, true love.


Look how loooong I am!

Mommy and me!

Friday, August 17, 2012

A Photo Worth a 1,000+ Tears

As a heart mom, we see our babies unconditionally as they are, but it may be hard for others to understand what we see and go through each day.  While we were in the PICU I refused to allow any photos taken of her hooked to the life support machines, IV’s, tubes, her chest open, chest closed with stitches and bandages, etc, it wasn’t an image I wanted looming for years to come, haunting me, haunting her.

One of the PICU nurses came in and saw my husband on one side of her bed and me on the other both holding a hand each looking down at her – she got excited and said, “do you want a photo, this is a photo moment.” I looked at Craig and looked at her and said “no”, she was shocked, she said, “this is a beautiful photo though, you don’t want a picture of it? I wish you could see what I see!”, and I said, “it is a memory I will always keep in my mind, but I don’t want the other elements in the photo”, she was surprised, but to her she - sees it each day and of course it was not her child laying there, so for her she was used to it, but as a mom I wasn’t and would never be.

I will never forget the day I saw her right after her surgery with her chest open and the next 9 days after recovering, it is not how I choose to document the ordeal, her memory will live strong, but her present is what I choose to live in.

Now that we are over 2 weeks out from surgery, I look at her incision and cry; I am amazed at her resilience and strength. I see her surgery sweet spot and it brings a flood of emotion – of the day, of the event, of her life. I am going to share the one and only photo that I will take of her incision not for exploitation, but to show that my strength too has grown.  

I love her so much!


Surgeon Visit - Update

Today we took Ryleigh to meet with her surgeon for a post op visit. Routine. They took xrays to look at her chest and heart. Heart looked great normal size. Such an awesome visit today! Ryleigh's surgeon says her heart looks fabulous, no issues, slight murmur they will monitor that, no chest swelling, lungs look and sound great. She's even gained weight & grew an inch! 7lbs 6 ounces, 20 1/2"!

Chest healed nicely, pretty zipper! :-) My girl! So pleased! No stent needed at this time to fix the narrowing of one vessel. Her surgeon says it’s too early and we will monitor it :-). That's awesome.
Some say she is a miracle, I would agree.

She has to stay isolated from crowds and people who don’t live in our house until after her vacinations, but over all that is not bad, so we have just over 4 weeks left on “house arrest” I am ok with it because I get to love on her all day! J

While she is the best case scenario, we are not taking any chances, momma bear is very protective of her baby cub! A cold may be annoying to healthy people, to a heart baby it can be deadly. I think we will stay home and wait it out. J Better to be safe!

Lots of love!
August 29th we see her Cardiologist for an echo and follow-up, routine! More to come.


Wednesday, August 15, 2012

First 4 days at home


It has been an amazing 4 days since we brought her home, she is acting so much like a normal newborn, no special needs, good appetite, likes to let us know when she is hungry or not happy, loves to sleep, looks around, so alert, lots of facial expressions. We are enjoying her so much!
Her brother has been such a huge help!

We meet with her surgeons on Friday (8/17) and her cardiologist, we will hear the game plan going forward and all about her upcoming surgery.

Momma is tired, I forgot how much work a newborn is!








The Ah Ha Moment

I have waited for this moment and it is better than I could have imagined! Ryleigh in her crib, moments after walking in the door!

8/11 1:26pm Coming Home...


Ryleigh is coming home today!!! I'm excited and terrified! She is 18 days old, 11 days post surgery and 9 days post chest closure. She gained 5 ounces since surgery and is eating almost 2 ounces every 3 hours. Wow! They did tell us in 2-3 months she will need to come back for a cath surgery to put in a stent for a narrowing artery, but as far as her surgery and recovery, she did amazing. It has been a crazy couple of weeks! It is hard to believe all that has happened in this amount of time too.

The time has come, we are getting discharged!

8/10 9:28pm, in Step Down Unit

Staying with my Ryleigh tonight in the hospital, all is well, but she will be coming home tomorrow. She has done great. We were told today she will need another surgery in 2-3 months to place a stent in an area of her heart that is narrowing, but should be pretty simple, in and out same day - one of many mini surgeries along the way of our "new" life and new “normal”. She's been sleeping for 2 1/2 hours, why didn't I sleep??? lol lol

To my heart mom friends 8/09 2:20pm

To my Heart Mom Friends
I just heard we are bringing Ryleigh home this weekend once she finishes her final 2 days of antibiotics. I'm terrified and excited! I am going to need you as I'm sure you each felt this too! We are heading to stepdown in a bit. It's becoming real. I'm about to conquer the hardest feat of my life. This is one of those moments I'm not sure if I should smile, cry, or both.

Heart Mom, Lee Ann

8/9 10:59am

60mls every 3 hours. That's like 2 ounces!!!! We've reach the goal, docs say she can eat to her fill now. :-) too bad I don't produce enough to eat to her fill :-(. No stress though, I did my best in a very unnatural environment.

8/8 8:11pm

Sleeping, sleeping, and still sleeping, she is acting more like a regular newborn every minute. Eating 45mls by bottle every 3 hours, amazing! She's almost there. YAH!!! So proud of her! Only has her oxygen cannula!

8/7 11:21 am

Ryleigh is off to her final hospital recovery hurdle, swallow study! She's about to eat her hand!!! Lol If she does good, she may be home this weekend! She's done super. So proud of her. One healthy baby. I've given her the best of me and it shows. :-)

9:55pm...

She did good on her study not 100% but what child ever is that has been through her ordeal! She will remain in PICU until discharged, doctors are real impressed (duh!!), she had a tough day getting her feeding coordinated but in a few days she will be a champ, I just know it! Looking forward to having her home!

8/06 3:16pm

If you had my view you would feel as close to heaven as I do. My angel is right where she needs to be. Love it!! Finally.