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Heart Warrior

When Jana was born she had two defects in her heart.  One PDA (In PDA, abnormal blood flow occurs between two of the major arteries connected to the heart. Before birth, the two major arteries—the aorta and the pulmonary (PULL-mun-ary) artery—are connected by a blood vessel called the ductus arteriosus. This vessel is an essential part of fetal blood circulation)  The second was a ASD (A “hole” in the wall that separates the top two chambers of the heart.  This defect allows oxygen-rich blood to leak into the oxygen-poor blood chambers in the heart. ASD is a defect in the septum between the heart’s two upper chambers (atria). The septum is a wall that separates the heart’s left and right sides.)   Last year she had a full ECHO and EKG done to monitor these defects because surgery was not needed at birth.img_8755

Yesterday we had to do the ECHO and EKG once again…

First of all, whoever thinks getting a toddler to lay still for over an hour to do the ECHO is CRAZY!!!  Seriously, I can’t keep this child still for anything!  Except…yesterday 🙂  We had to leave our house at 5:30 am in order to take the 2 hour drive to Rady Children’s Hospital.  This meant, Jana got taken out of bed, and put straight in her car seat.  She stayed asleep till about 6:30…normally she is up around 8:00.  So that right there messed her whole schedule up.  We arrived with her favorite move (HOME) downloaded on our IPad, as well as a few episodes of her favorite show (Kazoops!)  We img_8750got checked in and they put the monitors on her chest and tummy.  Then, asked us to keep her still for the duration of the test!  For the most part she did stay img_8747still…even fell asleep for about 30 min!!  It was probably the most I’ve snuggled with her in a long time!  But around the 50 min mark, not just Jana, but mama and daddy were fed up and ready to move around!  Luckily they were able to view her heart as well as main arteries in her neck and lower chest area.  How she did it, I img_8757have no idea!!

It was now 10:00, and time for the EKG.  This LUCKILY is a very quick procedure and she is allowed to at least sit up.  They hooked her up to what img_8756seemed like a hundred wires and the test itself took about 2 min!  Our girl was going strong.  She hadn’t thrown a single fit and was still being her adorable self.

Finally it was time to see our Cardiologist.  The last time Jana saw him, she was smitten 🙂  We’ve said he is her favorite doctor because he is the only one img_8751she has ever flirted with.  Unfortunately, by the time she got to see her McDreamy , she was sound asleep 😦  But that just meant, mama and daddy could talk to him a little less interrupted.

img_8758 So what did the test show?  Well, her PDA has completely fixed itself.  That means, that is no longer an issue and can now be left alone.  Then came the pause…..  Her ASD is currently open about 6mm, that means it is letting blood flow into the right side of her heart.  Meaning, the right side is slightly larger than the left.  If left untreated, this can cause serious health issues.  So a surgical procedure will be done next summer to fix this issue.  They will be going through her main artery in her leg and hopefully be able to fix it without fully cutting her open.  He feels waiting one year will help her vessels grow a little.  Currently they are roughly the size of her pinky, and the instruments he needs to use are just about the same size.  Obviously that is an issue!

So this summer she will have a tonsillectomy and adenoidectomy then next summer her heart surgery.  Which means, I have a full year to stress and freak about my daughter having heart surgery!!  Ugh!!  I am honestly trying to stay positive about it.  Our situation could be much much worse!  We are very grateful for our babies health but it does not make surgery any easier.  It is scary, it is stressful, but it is needed!  Our girl is a warrior and I have no doubt she will amaze all of us during these surgeries.  I trust that God’s had is watching over her, giving her the best doctor’s for the job, and will see her through it all.  I just need His help a little more to deal with the extra worries.       

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Guest Mama – Bridget’s Story

This week I’d like to introduce you to Megan!  She has the most adorable baby girl who is getting stronger and stronger each day!  I am so glad she was willing to share her story with all of you!

img_5006Our precious girl, Bridget Regan, was born December 5, 2016, but her story began long before that. I was just out of my first trimester when on June 30, 2016, I got a call that would forever change my life. I opted to have NIPT (non-invasive prenatal testing) for no other reason than the test was 100% covered by our insurance. I can promise you that had this test not been covered (it can be quite expensive), I would not have had it done. Without giving it much thought, I figured the test would completely rule me out as a carrier for any kind of disorder or disease; I literally never gave it a thought that my baby may come back with an abnormal test result. Early that June morning, I got the call from my OB that my NIPT testing had come back as high risk for Down syndrome. Even with this news I figured, “oh ok, but what does ‘high risk’ really mean? And I’m sure these test results have false positives all the time…” As the news started to sink in, I scoured the internet for stories of false positives. There were a few, but I quickly realized that the new NIPT testing was far more accurate than the Quad screens of days past. A knot grew in my stomach and in my throat as the reality of what I may be facing quickly hit me like a brick wall. My OB scheduled an appointment for me at a Maternal Fetal clinic to do a full body scan that day.

img_5011I remember the feel of the leather of the couch in the genetic counselor’s office. I remember what she wore, what I wore, the art on the wall, the carpet underneath my shuffling feet, the path down the hall we walked as I felt the tunnel vision closing in on what she was about to tell us. Our baby had a 91% chance of having Down syndrome. She asked us a myriad of questions that no new parent wants to face – did we know anyone with Down syndrome, any history in our families of genetic disorders, and finally the very worst of all – how would we proceed with this pregnancy. Until that question came, I wasn’t listening to all the words she was saying. It’s like I could see the words coming out of her mouth but my heart was in a tailspin of emotion and my mind was trying to catch up with my heart. What did she mean what would we do? This was our precious baby and though the news was heavier than I could have ever imagined, there was no “option” for us. This life was ours to raise and protect to the best of our abilities and not to be discarded based on a preconceived notion of a diagnosis. Our baby is more than worthy.img_5002

Following that conversation, we had a full body scan ultrasound where a heart condition was discovered that all but confirmed the diagnosis. Then a brand new fear crept in as they explained that our baby’s condition was so severe that it would require surgery within six months of life. We’ve been closely followed by cardiology teams since then and Regan is expected to have surgery sometime in March.

Our sweet Regan has now been in our lives for exactly two months and suddenly I couldn’t imagine a world without her. She is gaining weight like a champ and her sweet disposition makes me so proud to call her mine.

img_5050Throughout this journey, I’ve had the pleasure of following other mommas and families of these precious children with Down syndrome. What started as a scary diagnosis opened a window into some of the most supportive and compassionate people I’ve (virtually) met. These first few months with Regan have been such a joy but certainly not without their difficulties. I imagine Regan’s future will be the same: filled with happiness and some stumbling blocks, but I can’t wait to see what it holds for us. The fear of the unknown is washed away when I look into her precious blue eyes and know she’s already changed my heart forever, and I know she’ll change the rest of the world’s hearts too.

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Sleep Study

We are currently in a tiny hospital room. Lights are dimmed, soft music is playing, and little peanut is asleep with about a zillion wires hooked up to her!  We are finally doing our sleep study. They need to have monitoring for at least 6 hours, meaning she can’t pull any wires off. She has to be asleep for at least 2 hours for them to get any findings, and it will take about 3 weeks for the results to get back.  There is so much pressure to get good results. This will help us see if there is any way she will sleep through the night. I am praying they find something!  Anything they can find to help figure out why she has so much trouble sleeping. 

We did get a break last night. Of course the night before her sleep study she decides to sleep 8 straight hours!  Don’t worry, we won’t get too used to it. Her sleeping through the night is kinda like finding a four leaf clover. You search and search and search, finally find one, after picking it, it withers and so your search starts all over again. Not sure if that analogy works. Remember I’m in a constant state of sleep deprivation. Bear with me. 

I do have to say, even though none of these wires are causing her pain (just a lot of discomfort) it is scary seeing her like this. The big kids never had anything like this done. But seeing your baby hooked up to so many monitors, is never easy. But it’s just another thing we have to do. Another thing that Down Syndrome brings to our lives. 

Praying we get some rest and some answers!!  Wish us luck!!

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Baer Test

Ok so today Jana had her Baer hearing test.  We stayed in San Diego last night because she needed to be sleep deprived for the test.  For some reason today she woke up at 5 am (maybe she was nervous, Juan said he didnt think she studied lol) but she laid in bed till about 6:15.  From there we fed and changed her but she was NOT allowed to sleep.  I’m not sure if you have ever tried keeping a 4 month old up for 2 hours when she was exhausted but it was a challenge.  Lets just say a lot of tears were shed and much screaming happened.

We checked in for her appointment at 8:30 and within 15 min she was ready.  Finally she was allowed to have another bottle and fall gently asleep.  The doctor informed us that because the monitor is extremely sensitive, it would pick up even the slightest sounds.  image3Including her blinking and moving around.  That is why having a sleeping baby is the best way to go.  Anyway, the doctor (who was awesome btw) taped a monitor on her forehead and behind each ear.  Then a small tube was inserted in her ears.  The whole test took about 45 min.  Her ear drums were also examined with another type of tube to see if there was water or blockage in her ears.

So what did they find?  NOTHING!! 🙂  She has no signs of hearing loss at all!  No water in her ears, nothing to worry about!  They will be checking it again in 6 months just to make sure, but the doctor let us know that there shouldn’t be anything to be concerned about.  I couldn’t begin to explain to you how relieved I was!  Honestly, when we got in the car and left the hospital, I started to cry.  I didn’t realize how terrified and nervous I was for my little girl.  Finding out that she is doing great in all aspects was just so amazing.  It was definitely answered prayers.  So I just want to say thank you to all who kept our girl in their prayers today.  God is seriously doing amazing things with this beautiful girl!!

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Vision & Hearing

So tostressday we were planning on being at Rady Children’s Hospital again to have some testing done on Jana.  Unfortunately last week I got a call saying her apt needed to be canceled because they had her Medi-Cal info wrong and therefor couldn’t get the approval done.  So now we need to wait at least another week for the approval then we can finally reschedule the tests.  I am so frustrated with the issues that keep coming up with her having Medi-Cal.  Yes, I’m grateful that she has the coverage, but I feel like we have to jump through hoops just to get things taken care of.  Once she is legally “ours” she will be put on our insurance and hopefully these doctor apt will start to go a little smoothly.  The only positive has been that the staff at Rady’s have been completely awesome at helping us get the apts. that we need.

So what test did Jana need?  She needs to see an Audiologist (hearing) and an Ophthalmologist (vision).  Because children with Down’s are often prone to hearing and vision problems, they will be conducting test to make sure Jana is doing good…or if she isn’t, they will make a plan to make her better.  The fix could be as easy as glasses or hearing aide to invasive surgeries.  Which I am praying deeply that surgery isn’t needed.  I’m not sure I’ll be able to handle my tiny baby girl getting cut open.

As far as her vision is concerned, it seems like she is great!  She makes eye contact with anyone who talks to her, and is always looking around being nosy 🙂  Her hearing however, we’ve been slightly nervous.  There are times where we feel she should respond to noises and she doesn’t, but other times she seems very aware.  I’m not sure if we are just looking into things too much or what.  But I am anxious about that test.

Great news!!  As I was writing this up, the Audiology department called.  Her testing got approved and a new test is scheduled for this coming Friday!!  I’m so glad that they were able to get it all set up for her.  Please pray for us on Friday between 9-11 am.  The apt will take about 2 hours.  The first hour involves us getting her to sleep…the second will be conducting the test.  They will give us results as soon as its over.  I’m sure the whole time I will be a nervous wreck!