As Olivia and I sit in the car waiting for firework shopping to end, I can't help but look back at this past year. 2012 has been by far one of the most challenging years. It has tested our love, faith, and perservarance. Yet, while so much of the year has been filled with worry, so much has also been filled with wonderful memories. Olivia has learned to walk, talk, feed herself, sleep in her own bed all night, and most of all she has learned the love of her siblings. We know 2013 holds so much uncertainty, alot of which will affect our sweet girl, but we continue to hope. Hope for her health to improve... Her growth to continue....and the love to multiply. So 2013, while you are the only one who truly knows what you have in store for us, bring it on! Olivia is waiting.
Friday, December 28, 2012
Here is the link:
Friday, December 14, 2012
We have been amazed at the words and sounds Olivia is making. She can say 10 words and definately knows how to get attention when she wants it. While we were in Philadelphia, at the suggestion of a cardiologist, we made an appointment to see an ent to check her ears. When she was a baby, olivia passed her hearing screen with flying colors and hasnt had one ear infection. KNOCK ON WOOD!! We are not doctors, so we scheduled the appointment for when we got back. Yesterday, I took Olivia to the ent and audiologist. After testing her eardrums, it looked like she had fluid in her left one. That took the traditional test out of reach. The audiologist said we could try a test that is really meant for three year olds and see what happened. After sitting in a sound booth for 30 minutes and Olivia turning to noises on que I thought we were good. When she opened the door though, I knew something was wrong. There is a certain look all doctors get before they lay the bad news on you. It is a look like I am so sorry to tell you this and I am so glad I am not in your shoes. But back to the story... So apparantly Olivia was pretty consistent in her lack of response to certain high pitched sounds. The audiologist, not knowing about Olivias history, started to ask questions. When I explained that she lives in the 70's oxygen wise all the time, she immediately stated that Olivia needed further evaluation by a pediatric audiologist asap. The sooner we get her evaluated the better so it wont affect her speech. If she does have hearing loss then for christmas, Olivia will be getting hearing aids.
As a mom, you dread to hear bad news about your kids, but when the news can make them a target for teasing it makes it even harder. Olivia's scars make her different already does she really need more? My sweet potato pie, I'll love you no matter what.
Friday, December 7, 2012
Thursday, December 6, 2012
So....we saw Dr. Natarajan and much to our dislike, she is recommending Olivia be placed on oxygen to maintain her sats and buy us time. She mentioned on multiple occasions that we could do her fontan at any point but she would really like to get her out of flu/cold season. That when we start doing oxygen it ia kinda the time to move forward with surgery. This is not the news we wanted to hear, but for now, we are heading home to enjoy christmas and wait.
Dr. Glatz and Dr. Natarajan came in to talk to us about the cath findings. Dr. Glatz said he was pleased with her maintaining 80-81 while at rest but the true test will be when she starts moving around. Dr. Natarajan said she is hoping to get Olivia to this summer for her fontan or as long as possible, but we must take it one week at a time. If her sats drop to the low 70's, then she will have to come up earlier. Naturally, brett and i are dreading that day.
So after 6 hours laying flat, we were finally able to pick her up and love on her. She has been a complete beast and needed to be medicated twice. We will see what happens tonight and will follow-up with dr. Natarajan on thursday before we leave.
Today, we head back to CHOP for a post cath follow-up appointment. This drive is filled with nerves and worry. After her cath, Olivia's saturations dd not improve as hoped. They slightly bumped up some, but far from where we were hoping. The interventional radiologist says 3 months max before her last surgery. We are hoping that her cardiologist can give us a better idea and maybe extend that time period. When her sats drop to the low 70's, it is time. Placing her on oxygen has been mentioned but i truely hope we aren't there yet.
We will also see the eye doctor today to see how she is doing since fixing her tear ducts.
Poor baby has been such a trooper and still is sweet as pie even though I feel like we are torturing her sometimes.
Tuesday, December 4, 2012
Dr. Glatz came to talk to us. He said they had to plug a collateral that had formed off of the side of her last one. He said while measuring oxygen levels and such he did find an area of concern. The vein that comes out of her ventricle which should have the highest oxygen was in the 70's. He thinks it is from an avm formation that occurs with glenn anatomy. The only way to fix it is to ddo the fontan. To hear those words made my stomach sink. She will stay overnight and they will see what her sats settle out at. They went from 79 to 83. They talked to her doctor, Dr Natarajan, and they will see where to go from here.
The eye doctor, Dr Katowich, is done. He came to talk to us about how it all went and was impressed with her tolerance. He did have to probe both sides and put in a stent. They may just fall out or may have to be removed in 12 weeks. We will follow-up on thursday before we head home.
We arrived early to the recovery room for olivias cath today. When we got there, she was not a happy camper. Lucky for us, versed was in her future and she became sleepy and kinda goofy. Anesthesia came to talk to us and to take her to the cath lab. The eye probing will take place first and then the heart cath. Any interventions and we spend the night. Now, we wait.
Monday, December 3, 2012
So the update....
We have finished our neuro/cardio exam with a final rating of 35% for overall development. Not bad, but room to improve.
Now, we are meeting the cardiac intake center for pre-op consents. Brett has taken olivia for an xray and I am signing paperwork.
We met the eye doctor who will be doing her eyes and the right eye is definately clogged still, while the right one is questionable.
The procedures will start early tomorrow with our arrival time at the hospital at 6am.
We have made the trek back to philly for a full evaluation. As we drive to chop, with Olivia babbling in the back seat, I realize how far we have come, but also how much further we have to go. We will update as we go today...it will be an all day afair. We will see OT, PT, Speech, Neuro, anesthesia, opthamoligist and cardio. Eye surgery may be postponed as it looks like Delilah has passed on the pink eye to Livi, we shall see.
Thursday, November 8, 2012
Thursday, November 1, 2012
Today marks Olivia's first birthday. This day has been one I have looked forward to and hoped for since early July 2011. Could we do it? Could we protect her and speak up for her when she needed it? Well, I'm happy to say we DID.
My sweet Olivia, you have taught me not only how to be a better mother, but also how to look fear in the face and conquer it. Everyday I see you, I see something new. Looking at your scars, I see healing and forgiveness. Looking at your eyes, I see honesty and truth. Looking at your smile, I see love and laughter. Overall, I see a million possibilities of what can be.
I look forward to watching you grow and standing up for you when you need me. I can not express how grateful I am for you. I can not tell you how different life would be without you. You are perfectly imperfect. It is an honor to be called your mother. Happy birthday sweet potato pie.
Looking back through the year besides loving the heck out of each of our kids, the biggest feeling I have had is helplessness. I am helpless because I feel that any day or night Olivia could have a huge setback and never recover from it. She isn't a ticking time bomb, but gradually changes can happen and things might get overlooked. We really don't know her true current status unless she was getting echo's, and cardiac mri's every week. The doctors say she looks great, and is a model HLHS baby. In the back of my mind there is always the constant worry and doubt.
I am a year older as well, with a good bit more grey hair, but a completely different perspective on life. A year and a half ago I was so carefree, and living it up. I had a few hobbies I was very passionate about, like fantasy football or being a crazy Saints fan. Before if I missed a quarter of the Saints game I'd be freaking out, now it doesn't matter. Now I'm just cherishing every minute I have with my children and family. I find that the things that were important to me then are very trivial now. It might sound sad, but I feel like the happiest guy alive. I have my wife and 3 beautiful children and Olivia just turned 1. Nothing in life is better than this. I feel vain talking about myself on Olivia's birthday but I was hoping to frame how I have felt this year, and just how exciting this milestone is. Today is the biggest day of our families' year because we have made it.
The year ahead will probably be more of the same feelings, with tons of doctors appointments, a trip to Philly, a hospital stay or three. I have no idea, but my goal for Olivia is to make it without needing the 3rd surgery. Hopefully, that can wait until next year or the year after. Possibly after her 3rd surgery we won't have all of these short-term goals, and we can just focus on being a little more normal. I know Olivia will never be normal, but hopefully the Fontan flow will work with her body and allow her to live a long happy life without needing any extra surgeries or a transplant. My fingers are crossed!
Happy Birthday my sweet little princess Olivia. You are a true Xena warrior heart princess and we are very proud of how far you have come and will go.
Monday, October 15, 2012
I am a firm believer that everything happens for a reason. We were blessed with Olivia, because we will all make a difference.
CDC. Facts about Hypoplastic Left Heart Syndrome. Retrieved 10/11/12.
Friday, October 12, 2012
I decided that I would make it my mission to get an article in one of those magazines. I would tell our story and raise awareness about the condition and about pulse ox screening. Now everyone who knows me, knows I am not a writer. I have never had a desire to write or be published in any sense. I have always, on the other hand, been someone who wants to take care of others... hence the nursing degree. This is my chance to take care of moms-to-be that may be in my shoes in 6 months to 12 years.
I have sent it out to a few different places and I will keep everyone updated if it is published anywhere and I will also put it up on here for all to see. My goal is to also write an article from an L&D nurse's view and submit it to AWHONN. Who knows if this will truly make a change for anyone, but even one mom or one baby is a start.
Tuesday, October 9, 2012
It is hard to believe olivia is already 11 month old. Our big girl is growing by leaps and bounds. She is now 22lbs and 29 inches. She is crawling, pulling up to stand, and even taking a few steps along furniture. We are working on getting her caught up on immunizations and starting synagist season 2. The big first birthday party is slowly coming along and invites will be out soon. Overall...looking at her major accomplishments....my breath is taken away. My sweet baby girl won't be a baby much longer.
Monday, September 17, 2012
Wednesday, September 12, 2012
Brett and I decided to participate in a genetic mayo clinic study quite a while ago. We all had blood drawn and sent it for processing. I recieved a phone call about the results today. It seems after looking at Olivia's genetic makeup, or chromosomes, she has part of chromosome 12 duplicated. The genetist stated "i don't think it is related to her hlhs, and it has not been a recurrent finding in our study, so far. But, in order to rule out everythibg, we need to make sure it wasnt passed down from you or your husband." I politely thanked her and offered as much blood as she needed.
You would think I would be used to hearing....lab results or anatomy is NOT normal, yet it never gets easier. I foolishly started googling after I hung up, only to find a vast amount of information. In reality, it doesnt really matter what she could have. There is no way to change it and we love her no matter what.
Love you Livi
Recently, we have noticed that olivia at night has been a little more swollen. We had an appointment in two weeks to see the cardiologist, but the worrier in me was thinking worse case scenarios. Congestive heart failure, pulmonary hypertension....only the worst! So, Brett called and they were able to get her in early. Yesterday, as I was getting the lowdown, brett got rear ended. So my dad had to bring her by himself. After an echo, ekg, exam, lab work and chest xray...all was cleared. The cardiologist thinks it is because she is gaining weight, not from compromised heart function. He increased her lasix to see if it helps. We are keeping the fingers crossed.
Saturday, September 1, 2012
Olivia is the big ten months old today. She is enjoying her first LSU game at home spreading the tiger spirit. It seems like it was just yesterday she arrived but it has also been the longest, most worry filled ten months too. We love our baby girl!!!!
Thursday, August 30, 2012
Last night, we were surprised by Brett who walked in the house. He had stayed behind to be on the Isaac watch, but came to bring us some much needed things. After only about 4 hours with no power, we were some of the lucky ones to get it back. This morning we called our neighbor back home and found out we had power at home too. Just in time for the Saints game. We came back the looong way due to closed highways and have settled back in. We did have minor damage with water but nothing major. Most importantly, we are all safe. Goodbye Isaac!
Wednesday, August 29, 2012
Olivia is safe and sound at this time in Baton Rouge with her siblings and grandparents. We left daddy at home and we are enjoying the ac for now. Minor damage to our fence at home but all else seems ok. We will continue to "hunker down" and wait for this slow mover to get the heck out of dodge.
Wednesday, August 22, 2012
Yesterday, we went to the ent and general peds. Olivia is 19# 13 ounces, 28 inches long. Her sats were 85 and her heart rate in the 120's. She is developmentally right where she needs to be. She is crawling, babbling, trying to pull up on furniture, she can use her pincer grasp to move food that is small to her mouth and she is getting more teeth. She does have fluid in one ear that needs follow-up to see if it goes away on it own. The cyst on her ear is soft and the least of our worries according to the pediatrician. She received two immunizations and will get two more in October. She will then finally be up to date. We are trying to pull all the final details together for her birthday party. More info to come shortly.
Sunday, August 19, 2012
The other day, as I sat in another doctors appointment, I had a huge awakening. Life as an HLHS parent is filled with many joys and just as many sorrows. The most important thing is how you look at each one. For all of the fellow heart moms and heart families out there.... I'm sure alot of this will sound very familiar.
1. We were given the joy of a beautiful new baby.
Our joy was crushed with the diagnosis of HLHS.
2. The delivery of our bundle of joy was a wonderful experience all its own.
The sorrow of the impending Norwood surgery and the unknown was always looming.
3. The joy of hospital discharge was the first step to her becoming our own.
The realization that we can be admitted again at any moment is never far from home.
4. Every little milestone is a huge accomplishment for our little fighters.This includes even a pound.
Sorrow is when they get sick and lose that pound in the blink of an eye.
5. The overwhelming feeling of relief and joy when seeing your baby in recovery even with tubes coming from everywhere.
The dread and guilt when a complication is found.
6. Looking forward to the birthday parties and life events that each day become more and more a possibility.
The horror when we hear that another little heart warrior has earned their wings well before their time.
7. The overwhelming pull that our heart warriors have on complete strangers no matter where we journey.
The cringe when we see someone touch our baby's hand and wonder how many germs they have just spread.
8. The pride we all have in the hospitals and staff that we have entrusted our babies to.
The worry that our trusted surgeon may retire prior to surgery number 3.
9. Finally the never-ending joy that... our little heart warrior was given to us and we will never be the same because of them.
I realized this as I sat in yet another doctor's office worried about c-diff and how to prevent and treat it. There will always be something to worry about. There will always be a twinge in my stomach when she doesn't act like herself. Nothing is ordinary with her anymore, because she is not ordinary... and never will be.
Love my little heart warrior!!!!
Tuesday, August 14, 2012
Monday, August 13, 2012
Sunday, August 12, 2012
On a positive note, we now know it is mildly contagious. Brett and Nathan seem to have contracted the diarrhea and vomiting issues Olivia is having. Brett and Nathan are getting some quality nursing at my mom's house while I sit here at the hospital. Hopefully I'll get some help tomorrow from my sisters. Not to mention some better lab results for Olivia.
Last night was a typical night in the hospital...long with very little sleep. Olivia after getting a bolus of iv fluids and fluids for 12 hours straight is now swollen but finally had one small pee diaper. We are still trying to get her to eat, but I will take small steps. Hey, she is smiling too....
Saturday, August 11, 2012
Labs came back....dehydrated and acidoic. For those not medical, she is so dependent on her fluids balancing out her acid in her body. When she gets behind....it builds up, she breathes faster making it worse, her sats drop leaving more acid. Very vicious cycle. She is getting iv fluids to flush out her system and build up her fluid volume in her blood stream. We dont know why she is vomiting and has the runs since no one else has it or has gotten it since wednesday. The doctor is trying to get a urine sample too, but she hasnt gone in 24 hours so it may take a while. We are hoping she will wake up in the am a whole new kid.
Wednesday, August 1, 2012
Friday, Olivia had an eye doctor appointment. We were going because her eye goo is multiplying even with the eye ointment three times a day. The eye doctor here stated that the tear duct probing could be done in office with no sedation or anes as long as we did it before she turned one. Sounds great right? Well I thought so too until she said that if she moved...she may have damage done to her eyesight. How does anyone stay still let alone a baby while someone is probing their eye? So now we have to decide what we want to do. Do it here and chance it or wait and go to CHOP. Decisions decisions....
Saturday, July 21, 2012
Thursday, July 12, 2012
Since we have learned what hlhs is and how life changing it can be, we want to stop another family from suffering the same fate. We participated in several studies at CHOP when Olivia was first born, but wanted to do more. Brett found out about a research study that the Mayo Clinic in Minnesota is performing and applied. It studies genetics of the entire family including siblings. We received boxes in the mail and were supposed to simply bring it to a lab to be drawn. Simple enough, right??? How wrong we were. We made appointments at Quest. When we got there, they told us they dont draw bloodwork they dont process. We then called several other lab collection placea. No luck. Finally, we called and just went to the kids pediatricians office. When we got there, no one knew how to collect the blood and not charge us. They were able to locate someone who knew what to do and it was time. Olivia went first. She did great for the volume needed. Next was delilah....tears were flowing, but she didn't completely freak out. Nathan was last and laughed during the blood draw. He was thinking horrid thoughts ahead of time, so when it was nothing...he couldnt help but laugh. We packaged it all up, labelwd it correctly and went to get stuck ourselves. It helps to know people, because when we got to the lab a phelbotomist who knows me came out. He gladly drew Brett and my blood and even remembered us being on the news. Brett had a little more difficulty with the stick and a little digging but held it together in front of the kids. Finally we were done or so we thought.
We went to fedex but they dont accept blood for shipping at all locations. We found out where to bring them and finally we are free of the ordeal.
It is really sad that in order to help others, it cant be easy. It hasn't deterred us though. If the opportunity comes again...we will do it in a heartbeat. Our olivia is here because people 25-40 years ago let doctors research and study their babies.
Thursday, July 5, 2012
Exactly one year ago, I nonchalantly went to a fetal cardiac echo for a routine follow-up alone. Two hours later, I left the office desperately trying to keep it together. HLHS??? Really? Surely, they must be wrong I thought. Yet, I knew as an ob nurse they were pretty certain. Our lives, in the blink of an eye, changed forever. The emotions we have experienced have truly been a rollercoaster of sorts.
I can safely say though it has taught me more than I ever imagined. We have met so many angels in disguise. Whether it was Dr Spray, Dr Natarajan, nurse Becky, or any of the wonderful people who cared for our baby, we will always be in their debt. This experience had also introduced us to wonderful families who have been changed by hlhs as well. Without the Marrone's or the Lihn's, our quest for information would have taken twice as long. Lastly, Olivia with her hlhs has shown us how important it is to trust that everything happens for a reason and that we have some awesome family who are there when we need them.
Everyday with Olivia has been a gift. One, we definitely don't take likely. We look forward to watching her grow and learn. While the worst day of my life was only a year ago, it has also been one that I can't imagine not having experienced.
Sunday, July 1, 2012
Wednesday, June 27, 2012
Olivia surprises us everyday with how big she is getting. Just yesterday she sat in a restaurant high chair and squealed the whole time. She also attended her first birthday party for a fellow chder. We are looking forward to a major first birthday blowout and man will she deserve it.
Friday, June 15, 2012
Olivia has had a lot of firsts in the last month. And while we enjoy the good times, we forget to blog. Sorry about that. So to catch everyone up quickly and recap some major milestones.
Eaten solid fruits and veggies
Had two teeth come in
Mastered sitting unassisted
Become an ambassador
Overcome her first and second viral infections
Can hang out on all four but no crawling yet
Can say ba ba and da da
Can eat real baby formula
And most of all... can get her daddy to do just about anything.
So alot has changed and we will post pictures.
thanks for following
Wednesday, June 6, 2012
Olivia started with an innocent cough a few nights ago. Brett and I didn't want to overreact, so we wanted to wait it out. Well this morning, she woke up with a fever of 101.1 and was breathing really fast. Panic mode set in at this point. I called the cardio who said to call her peds. I called her peds who fit us in as soon as possible. When we got there, she was obviously bluer. Her sats were in the mid 70s and she was breathing 80 times a minute. We did a chest cray to look for fluid around her lungs since she has been on normal formula with fat for two weeks. All was normal. Then she got an albuterol treatment which helped slow her breathing but sped up her heart rate. We called the cardio again to double check meds and will call back in the morning. The peds said jokingly that she is trying to get rid of gray hairs, but Olivia is determined to give her more. Here are somewhere pictures of her finally asleep. Hopefully she will feel better tomorrow.
Friday, June 1, 2012
Thursday, May 31, 2012
If only, we could all be as carefree as Olivia is right now. She is passed out sound asleep with a sweet grin. Me on the other hand, I am panicking about tomorrow. What we will all wear, what time to leave in the am, and hoping and praying neither one of the kids open their mouths and insert their feet. I’m not worried so much about Olivia making noise, because who doesn't think baby noises are cute?, but the other two??? Here's to a day filled with many exciting firsts, it is only the beginning.....
Sunday, May 27, 2012
When you get bad news in life, the first thing that comes to mind isn’t always how am I going to make a difference with this experience? For me, that wasn't anywhere close to my thoughts when we found out about Olivia's condition. Yet, in those first few days of shock and disbelief, I had to do something. Brett focused on reaching out to fellow parents and I quietly wrote every politician in Louisiana. My letter was vague, because at the time, I was just desperate for someone to listen. I received a letter from some lady in a little town agreeing how bad the disease was but she donates to AHA, so she was sorry to hear about us. I received a blah letter from Mary Landrieu. So to say, I was over the lack of response is an understatement.
Much to my surprise, I finally received a letter from. Mr. Dan Claitor. It was heartfelt and honest. I spoke with him by email and telephone and he actually tried to help us get info about the best care for Olivia in Louisiana. He is not my district representative or in no way would his career benefit from helping a small family struggling to overcome a huge hill. He gave us his time anyway.
After Olivia arrived, he kept in touch and wanted to make an official CHD awareness day for Louisiana. I was tired, busy, and too overwhelmed to even contemplate how I could make a difference. Mr Claitor though did not forget. He has arranged for Friday June 1st to be that CHD day. It just so happens to be the day Olivia turns 7 months old. We will go to the Capitol Friday and Olivia will be the first HLHS baby to be the ambassador of sorts for Louisiana's CHD day.
Today, I think back to July 5th, 2011and know that Olivia will make a difference. Bad news doesn't always have to be a bad thing. Olivia for us and many others has a huge purpose and we are excited about all the possibilities.
Sunday, May 20, 2012
That has been our motto since July of last year. It is crazy to think it is almost a year already. We have weathered some storms better than others but we are taking it one day at a time. There are times, like this week, when things come up and I am a ball of nerves and anxiety. This is my third child, I should be a pro at all of the silly things like viruses and vomiting. Yet, I am far from it. Then it is the pediatrician calling on a Saturday morning when you know she has a million other things to do than call you, but she does anyway and that is why I trust her with the three best things in my life.
There is still the anger at the disease and how we went from being carefree to careful. We can't make plans for a year from now or even six months from now. We have to take it day by day. That has become our life. We have accepted it and we are thankful for each moment with sweet Olivia. To the everyday events, many are her firsts and each one is special. As crazy as it sounds, Olivia went to Walmart today for the first time in kenner and loved every minute. So we continue onward, trying to enjoy the little things.
Sunday, May 13, 2012
We went to Nathan's Blue and Gold banquet last night where he went from being a wolf to a bear. We all got dressed up and were excited to all celebrate together. I knew Olivia would want to eat mid ceremony so I overheated her bottle so it would be perfect for when she got hungry. I gave her the bottle and she ate like a champ. About ten minutes later, she started fussing and then choking while vomiting. I was standing in the back of church and desperately wanted to scream help!!! Thank god brett saw me rushing to the bathroom and met me to help clean it all up. She was so exhausted after, she fell fast asleep. I panicked about her breathing, noises, and color. I also spent the rest of the night shaking. She didn't do it again all night or this morning, but still worried me like crazy.