New Facebook Page

When I first found out about Riley's heart I googled and found a lot of blogs. Many of those blogs just ended and left me wondering how the child was doing. Especially when we found out about Riley's intact septum I found a few blogs for children with intact septums that really left me wanting to know if the children were still living, etc. SO, I did not want parents to google looking for inspiration and find my blog that I stopped updating and wonder what was happening with Riley Marie. Especially if they googled HLHS with intact septum trying to find a story with hope to grasp on to. Riley Marie has had a VERY VERY hard first 3 months of life but she has been stable for a few weeks now and is doing well.  Riley has a facebook page called Riley Marie's Heart that we keep updated. Please feel free to follow her progress there!

I do want to leave a catch up of what has happened in the last 3 months. Riley was born on March 9th and had an atrial septostimy right after birth. She had her Norwood which was considered a high risk Norwood on March 19th. She came back from surgery on ECMO and was on for 4 days. They took her off of ECMO due to severe bleeding. She was not ready to come off ECMO and struggled to keep her sats up for the next week. That week was filled with many  events where they would push epi and fluid to bring her bp and sats back up. On April 1st she was unable to keep her o2 sats up even with meds to the max and vent setting to the max so she went on ECMO for the 2nd time, this time neck cannulated. She was on ECMO for 16 days. During her ECMO run she had a heart cath which was a high risk cath with her on ECMO. They did not find anything that they were able to fix during that like they had hoped. The night that she came off of ECMO they did a head ultrasound and found that had had a brain bleed. After hooking her up to the EEG they found she was having seizures. She started a seizure med that stopped all seizure activity. The brain bleed had stopped but they decided to put a resevior in to be able to "tap" into with a needle to take excess fluid off of her brain. She continued to need the resevoir tapped often so they eventually put a permanent shunt in to drain the excess fluid into her belly. An MRI showed that Riley has brain damage in the areas of vision and gross motor skills. As of right now she is moving all of her limbs and focusing her eyes. The Neurologist is very impressed by her and said that it shows that you never know with a baby what their brain is capable of. Riley is currently in the step down unit and we are starting parent care to go home soon. She will have her 2nd surgery later this year. Riley Marie is nothing short of a miracle. We are so grateful for the drs and nurses who have taken such good care of our girl. They never gave up on her!

She's here!

              I'm sure everyone knows from FB that Riley Marie was born at 9:23 on Monday March 9th via c-section at Riley Hospital. She went straight to surgery so she didn't really get weighed until later, after receiving a lot of fluid, and she weighed over 8 lbs that next day. Everything went so smoothly, and we can't say enough good things about everyone involved. They took her to the next room right away after delivery, so Robbie got a quick glance, but I didn't get to see her yet. They said that she did cry but she was gone from the room so quickly that we didn't even hear her. Dr. Farrell, one of the pediatric cardiologists, took pictures for us and made sure to come back and show us asap while I was still in the OR. Staff was so amazing! Everyone was so good about keeping us informed throughout her surgery. I found it very overwhelming when Dr. Turrentine, Riley's surgeon, came to speak to us afterwards because I simply said thank you but that seemed almost silly for how thankful we were to that man in that moment. He literally saved our baby girls life so a simple thank you just doesn't seem like enough. Two nurses came with us from Methodist to take care of me all day and they were wonderful! They were upbeat and excited for baby but also serious when they needed to be.  I was determined to set eyes on Riley Marie before going back to Methodist on Monday so as soon as my 2 hours of recovery were up they helped me into a wheelchair and took me to see her and oh my,  she is  beautiful! They were so many people involved in her delivery that day and every single person introduced themselves to us and were so nice.

               Riley was born with an intact atrial septum which causes hypertension with the lungs and the vessels connecting the lungs to the heart. Fortunately, Riley's body developed an anomaly vein which allowed the right side to decompress and deliver some blood to the left side to go out to her body. This anomaly vein is a big part of how she's doing so well. Without it, her lungs would be in much worse shape than they are and this roller coaster would be a much bumpier ride right now. Her next surgery (the Norwood/Norwood Hybrid, we don't know which will be performed yet) is going to be Wednesday the 18th, and we are very nervous. Riley has been opening her eyes today as they decreased her pain med a little. She started receiving nutrition last night through her IV. I'm pumping and storing breast milk for her but she will not be able to have it until she is strong enough after her next surgery. With the flu restrictions in place at Riley hospital still and with her in cardiovascular ICU she is not allowed any visitors except Robbie and I. She is such a sweet baby and we are enjoying changing her hats and socks to play dress up :) Thank you to everyone for all of the prayers and thoughts. Riley still has a tough road ahead of her so please keep praying for our sweet girl. 

We have a scheduled birthday

      This week we had another ultrasound and it was also my last week at work so therefore Lucas's last week at daycare. I know I am going to miss everyone at work and leaving there was not an easy choice as I truly had a job that I love. I know life is about to take us for a ride and that I need to be truly committed and present for my family so Robbie and I decided me not working is what is best for us right now. The wonderful people, who have become my friends, that I had the pleasure of working with made my last day unforgettable. I was showered with gifts and well wishes and felt so loved :) We also felt so much love from Lucas's daycare; his teachers got Lucas and Riley gifts and put together a basket with things we will definitely be needing while spending time at the hospital. We could not be more thankful for how they have cared for and loved Lucas this last year and a half. Thank you from the bottom of our hearts to everyone at Friendship!

            We learned at our ultrasound on Tuesday that baby Riley has either a very restricted atrial septum or an intact atrial septum. The pediatric cardiologist said that out of every 10-12 babies at Riley every year with HLHS that only 1 every 1-2 years has this. She will need to be taken to the hearth cath lab within seconds of her being born and it will be very time sensitive. They will create an opening in her heart since hers is not there so that blood can pass through. She will be delivered by c-section at Riley Hospital on March 16th. They do not deliver babies at Riley very often but it has been done before. I will have to have a c-section as they don't have the capability for me to labor there.  We have had a rough week after learning all of this and if we didn't admit that we are having trouble staying as positive we would be lying.  We are feeling better and getting into a more positive place as the week has passed and concentrating on all of the details and getting everything ready for her arrival.  I find comfort in keeping myself busy concentrating on things that I can control such as who is going to watch Lucas when, making sure everyone has everything that they need, and keeping the house clean.

      The Team Riley Marie shirts were a huge success, Thank you Michelle! Thank you to everyone that purchased one and we can't wait for the walk in May and to get a group picture of everyone in their yellow supporting our girl!  We are very anxious as she will be here in just 2 weeks but I am also looking forward to spending lots of time with Lucas these next 2 weeks :) Thank you again everyone for your support, generosity, and love!

     

We made some changes

        Since finding out about our baby girl's diagnosis a big question we kept getting asked was "Why aren't you going to Riley hospital?" We never really had a good answer to that and usually just said that St Francis sent us Peyton Mannings. I read the book "Heart Warrior" written by a heart mom that follows their journey through her sons Congenital Heart Defect. She stated in that book that she would never allow her son to have a surgery at a hospital that does not have a heart specific intensive care unit as to her that means they do not take care of enough heart patients or perform enough heart surgeries. That spoke volumes to me as Peyton Manning does not have one and honestly when I read that I wasn't sure if Riley had one. I have reached out to several moms that I have found through the Linked by Heart website. After emailing back and forth with a couple moms we decided that we really needed to look into switching to Riley hospital for her care as they do have a cardiovascular ICU. After speaking to my ob at St Francis, who is wonderful, we decided to make the switch. Because we are switching her care to Riley I had to switch all of my care to IU. I am now going to IU hospital for all of my appts. and then will deliver at Methodist Hospital.

           We toured Riley and Methodist on Tuesday, We were very impressed with everything that we saw and everyone that we met, I almost feel a certain peace since making the change as I really feel like we are where we are supposed to be. Peyton Manning is a wonderful hospital but I feel like I have to remind myself of the reality of how serious Riley Marie's heart issue is and that she needs heart drs and  nurses who are extremely experienced with HLHS. We also had en extensive ultrasound and echo with a Riley cardiologist on Tuesday. We were given so much information and honestly told way more about our baby's heart then we had by other cardiologists. We go back in 4 weeks for another echo and to set an exact birth plan.  Yes, I do feel weird that her name is Riley and the hospital is Riley but her name was picked out way before we knew that she would be in the hospital and to change it now just seems wrong. :)

      As the time for her to get here gets closer we are getting more anxious and nervous for everything that is in store for our baby girl and how our lives are about to change in such a huge way. I am going to stop working at the beginning of March to have a couple of weeks to spend with Lucas and to get everything ready.  I am not sure Lucas really understands that he is going to have a baby sister but he is noticing my growing belly more and loves to kiss it and say "love you sissy" to her. He also knows that her room is "Riley's room." He is such a sweet and loving boy that I know he will be a great big brother!

   Thank you again for all of the support and love. Robbie and I are both very fortunate to have great jobs with super great bosses who have been understanding and flexible about about all of the appts that we have. We hope everyone has had a great week!

     

Merry Christmas! We've had a busy week!

Merry Christmas! I hope everyone has had a wonderful day filled with family and fun! I know we have had a great couple of days spent with family.

Tuesday Robbie and I met with several people and doctors at St. Vincent's. First we met with a lady from monogram maternity for a tour of labor and delivery and the NICU.  St. Vincent has a level IV NICU with 80 beds. The NICU is set up with pods and each pod has 4 babies. The nurses decorate the pods with the babies names; it was very calm and quiet in there. We met with one of the neonatologists who discussed in more detail the goals for feeding and IV's while she is there. She will need to be started on prostaglandin to keep open her ductus arteriosus  which is a blood vessel that babies have open in their hearts before they are born but close very soon after delivery. This vessel is why Riley's heart is ok before she is born and the problems start after she is born when it closes.

We had an ultrasound and got 3d pictures of Riley which was a nice surprise! We had an echo with One of the pediatric cardiologist who was very honest but also optimistic. He said everything still looks the same and her diagnosis is still hypoplastic left heart syndrome. The last person we met with was a child life specialist at Peyton Manning children's hospital who gave us a tour of the PICU. We learned all about visitation, the common areas, and the rules on the shower and sleeping rooms that they have available to families, All of the families that we passed in the hall had one thing in common, they all looked exhausted! I prayed for those sweet children and their committed parents while walking the halls.

Everyone we met was so nice and I really feel good about St. Vincent's and Peyton Manning's hospital. I know these next 3 months are going to fly and we have a lot to get ready! I can't believe the new year is next week!

Merry Christmas and a Happy New Year from our family to yours!

We SO feel the LOVE!

I wanted to share a little bit of the love and support we've received since finding out about Riley's heart. I found a website of a group called Sisters by Heart. It is a group of women who are all mothers of children with HLHS (hypo plastic left heart syndrome). There is a wealth of information and support on this site including stories of children who are doing well, studies from doctors, and the not so easy to read stories of children who earned their angel wings. We received the most amazing care package in the mail from this group of women! There are handmade items made in memory of children including a sweet little hat, hospital gown, and hospital mask along with other things. Every single item had a sweet message on it of the reasoning for the item. It even had a book just for Lucas :) There is a song written by a Christian singer named Matt Hammitt called "All of Me." His son was born with HLHS and is doing well and he wrote the song for his son. I received the CD of this song in the care package and have enjoyed listening to it even though it is a very emotional song for me. You can listen to it on youtube. I took a few photos to share. 

We also received the sweetest card in the mail from my cousins Joni and Steve in Florida. She sent out a prayer request and cut out all of the responses that people sent to her along with a great note from them. It is amazing to me that all of these people that we have never even met are praying for us! God is so good and amazing!! Thank you Joni and Steve, getting that card in the mail means so much to us! sorry the picture is sideways, we tried to fix it!

Everyone's well wishes and sweet messages on facebook means so much to us! We are truly surrounded by amazing and loving people! Riley's room is now painted and she has beautiful furniture thanks to my amazing dad! We go to St Vincent's next Tuesday for a full day of Dr. Appointments so I will update on how Riley is doing!

Where to start...

         We found out that our baby was a girl at 18 weeks due to a quick unscheduled ultrasound. So when it came time for our 20 week anatomy scan we were excited to see our girl on screen but thoughts that we'd find out something big that day were not there. We were told that our baby girl, Riley Marie, has a congenital heart defect known as hypoplastic left heart syndrome. We met with a high risk ob/gyn that day and they confirmed. Devastated cannot even begin to describe what we were feeling...

         A week later, yesterday, we met with a pediatric cardiologist who performed an extensive ultrasound and Echo on our baby's heart. She was so wiggly during it that the Dr. had the hardest time looking at her heart! She is growing perfectly otherwise and continues to be right on track with growth. They again confirmed the diagnosis and drew us a picture to try to explain what it all meant. To explain it in a very simplified way Riley's left side of her heart is extremely small and underdeveloped to the point where it will never be functional. There is no way to change that but instead she will have 3 surgeries to help the right side of her heart function for the left side. We are definitely still learning and trying to understand all of this. We have decided that I will deliver at St. Vincent's hospital and she will have her surgeries at Peyton Manning's Children's hospital. She will be in the NICU after she is born until her first surgery which is usually within 5-14 days after birth. We learned that there is nothing that caused her to have this and that nothing we did or didn't do caused it. We are truly blessed to live in this time where there has been so many advances with the surgeries as all of this technology around hypoplastic left heart syndrome is only 30 years old and before that the survival rate for these babies was not existent.

           Robbie, Lucas, Baby Riley, and I are beyond blessed with wonderful, loving, and supportive family and friends. The tremendous out pour of love and support already has been overwhelming and extremely appreciated! The news of  Riley's heart is still new and we easily become very emotional about it but we have definitely made the decision to stay positive and realize that God has a plan! The Dr.'s have said that my pregnancy should be smooth sailing and that her issues will begin after she is born so my job is to get her as strong and big as I can before she is born. I have been drinking V-8 everyday to get my veggies and absolutely no caffeinated drinks :) I feel like I need to stay positive not only for my sanity and so I can function everyday but also to spread my positive energy to her! We have decided that Riley's life will be surrounded by yellow and sunshine, inspired by the basket of sunshine that my sweet friend Michelle brought me last week! Her room will be yellow and it will be her signature color :) I have never considered myself someone that would have a blog but I felt like this was a good way to keep everyone updated on Riley so I do apologize for not being the best or most creative writer! We appreciate all the prayers and thoughts we can get along with any advice anyone might have!