Getting better... little by little

Today we moved to the PEDS floor (at 9PM).  Which is great news since in the morning they said another night in the PICU.  They were hoping the potassium and magnesium would help with the PVCs, but it didn't although now her labs are coming back good with the boost in electrolytes and now that she is eating bottles pretty regularly she's doing quite a bit better.  They believe that the right side of her heart, because it was so overworked before, doesn't know how to relax and is working over time.  So they are giving her digoxin and milrinone to help with low cardiac output system and the PVCs  We stopped the milrinone in the morning to see how she does off that.  So far her heart rate has dropped to the 150s, yesterday it was the 170s, the goal is the 130s but things seem to change all the time so maybe we can leave sooner.

They did an Echo today to check for fluid around the heart and there was none and they determined the PVCs are benign and that her heart just needs to figure it out.  The doctor last night thought maybe we could go home Monday (wishful thinking would be Sunday, the nurse asked if we were going home Saturday, so maybe she knows something we don't).

Quinn had lots of visitors on Friday.  Mylee and Tahlia came, Grandma and Grandpa, and Aunt Shelly.  Daddy also came back for the weekend.  She was pretty wild with all her visitors.  Still didn't sleep very well, but it's a new room so I am sure that is why.

Today was a good day...

Quinn is acting, well like Quinn.  Being a little stinker today trying to pull out her cords and wires (and there are a lot of them.  Her PVC's have gone down a lot throughout the day (happening way less frequently), we learned that they think its because of the inflammation of the heart and just needs a little more time to heal.  She is still on about 3 IVs, and had a slight fever this afternoon, but her mood is better.  She played hard today (hopefully that means she sleeps longer tonight)! Grandma came to visit and I held her twice.  It's a little intimidating holding her knowing her chest is wired shut and that you have to pick her up supporting her neck and butt for the next 6 weeks (no picking up under the arms).  She spent the day trying to eat her toes, but was unsuccessful with all the wires and cords... good effort though!

Looking forward to getting this little one home.  Hopefully we will have a good day tomorrow and can get out of the PICU.

Day 3...it was a little rough

Today, was interesting to say the least.  Sometime in the AM alarms started going off because of irregular PVCs and multifocal PVCs. Dr. Google in the middle of the night is never a good idea.  Something to do with irregular extra heart beats that disrupt the normal beat.  Her fever is gone.  They thought the problem was the chest tube, that came out with no troubles.  But didn't help the PVCs. Cardiologist wasn't too worried, but ordered and Echo because she heard a rub along with the heart murmur (whatever a rub means).  The Echo looked pretty good, gradient down to the 30s which is what they hoped for.  She was pretty out of it most of the day.  She was having some trouble with her BP and a high heart rate, so they did a bunch of labs.  The PVC's continued throughout the day.  The on call cardiologist read the echo more closely around 5PM and noticed her heart was struggling a bit and was working a little too hard for what it should be, so they put her IVs all back in and started her on some magnesium, potassium, and switched her to a flow of basically ibuprofen because they think she is having a bit of pain.  They also have her on something to help her heart so it doesn't have to work so hard.  They'll see how that goes tonight and tomorrow and then go from there.  They'd like to figure out the PVCs and so far they are still happening about as frequently as they were earlier.

Quinn perked up a lot when we video chatted with Mylee and Tahlia tonight, that was a good sign.  She hasn't been to interested in her bottles, but hopeful she'll start getting hungry soon.

Her incision doesn't look scary at all.  That's a good sign.  Can tell she's had a rough day from her morning pic to her evening pic.

Love this sweet baby so much!

We survived Open Heart Surgery

   After a delay in surgery, or maybe someone told us to be here at 8:30 and we didn't have to be here until 10.  Quinn headed back around noon.  It took them some time to get her ready for surgery and she was on the bypass machine around 1.  The heart surgery itself was pretty quick.  They repaired a Patent Ductus Arteriosus (PDA ligation).  According to Dr. Google, this is a problem because "When the ductus arteriosus stays open, oxygen-rich (red) blood passes from the aorta to the pulmonary artery, mixing with the oxygen-poor (blue) blood already flowing to the lungs".  They fixed her PFO (hole in her heart) which was bigger than expected.  They also did a pulmonary valvotomy to widen the narrowing of her pulmonary valve and also reshaped her valve (it will never be perfect).  They are pretty confident at this time that the gradient will be down to the 30's which can mean no more problems for the rest of her life (that is the goal and the hope).  They will watch it for life. 

  She was pretty crabby when she started coming out of anesthesia.  They didn't let us in to see her until after 5, which was pretty stressful, but they wanted to calm her down.  After we met with her normal cardiologist, they let us in.  It was a pretty rough night, she was supper agitated.  They kept giving her different variations of meds to keep her calm.  Finally found a good one in the middle of the night.  She's been spiking a fever, was at 103.1 last night, but they are working on getting it down today.  She's a lot calmer on day 2.  Still has a chest tube in with some bleeding, they hope to remove that tomorrow.  She's slowly starting to wake up now (3:15PM).  They have her off of oxygen, she's comforting herself with a pacifier (which she doesn't normally take), but we can't hold her with all of the tubes and IV's (she's got one in her neck, one in her arm, one in her foot, plus a catheter, and the chest tube).

Quinny Binny

When Quinn was born, we learned she had a heart murmur.  After being referred to a Pediatric Cardiologist in August of 2015, we learned that she had a congenital heart condition called Pulmonary Valve Stenosis.  This restricts blood flow to the lungs caused by a narrowing of the valve.  The Cardiologist also mentioned that she thought Quinn might have something called Noonan Syndrome which can be diagnosed through genetic testing.  In March, 2016 Quinn went through a balloon catheterization procedure to try to stretch the valve open so it worked properly, at this same time we pursued genetic testing.  The balloon catheterization decreased the gradient in her heart by 20%, but was not enough to give her lasting relief.

Quinn was diagnosed with Noonan Syndrome in April, 2016.  She was found to have a mutation of the PTPN11 gene which is the most common form of Noonan Syndrome.  (Noonan Syndrome is usually hereditary, but can be caused by a random gene mutation) Noonan Syndrome affects many areas of the body, including a common finding of Pulmonary Valve Stenosis.  Typically, it is characterized by mildly unusual facial characteristics, short stature, heart defects, bleeding problems, skeletal malformations, and other signs and symptoms.  There is no way to know which problems Quinn will have associated with Noonan Syndrome, it can be very minor, or more severe.  There are numerous things they will check throughout her lifetime, but no way to predict the future.  A good website with information about Noonan Syndrome is http://www.teamnoonan.org.

Blood testing shows that Quinn may have bleeding issues due to a mild coagulation Factor VII deficiency and Low von Willeband Factor activity.  These both affect how her blood clots and might cause excessive bleeding, these are both common findings in people with Noonan Syndrome.  Nothing has been diagnosed regarding bleeding disorders as one blood test can’t be definitive.  However, the Pediatric Hematologist on her case has plans in place should anything occur during her open heart surgery.

The plan for Quinn is for Open Heart Surgery, her team of Cardiologists believe this is the time to do it so she can have the fullest quality of life as she starts to grow.  The wait and see approach has shown no improvement in her heart as she gets bigger with the gradient being around 79 (this is diagnosed as moderate severe pulmonary stenosis and right ventricular hypertrophy) The effects of her heart defect right now are tiring easily, and some minor blue spells, she is also slightly behind in her gross motor skills.  Overall, she is a very happy, healthy baby and brings great joy to our lives.

Welcome Quinn!

I started writing this in July, but never posted it.  Here's Quinn's story.

It's a Girl! 3 girls. 3 beautiful independent girls. The teenage years will surely be challenging and full of adventure!

Someday I hope to update this thing with more inspirational topics, but for now it documents our children's beginnings. So, lets talk Quinn. Chris was hesitant for round 3. Pregnancy #2 had a few bumps and Tahlia had a few difficult medical issues along the way. But I said, this is going to be an easy pregnancy, 1 more try for a boy, it could be an easy baby.

Preganancy wasn't EASY, but I enjoyed it none the less.  Quinn was scheduled to be delivered via c-section on July 8.  On July 6, I went in for my weekly non-stress test, and baby was non-reactive. They sent me for an ultrasound and the Doctor decided to deliver her that day.

One thing I had missed out on with the other two kids was they were planned days.  I was induced with Mylee at 9 days overdue and Tahlia was a scheduled C-Section.  As the Doctor was about to send me to Labor and Delivery, I convinced her to let me go home and get Mylee and Tahlia off to the neighbors (they were with one of our teenage baby sitters) until my mom and dad could get here (they were on their way to spend a few days camping with the girls and so we could hang out).  Chris had to drive fast.  He arrived just in time to drive us to the hospital.

C-Section went smooth, I told the surgery staff that I knew she was a girl, I just had a feeling, but we didn't tell Chris.  The room went silent (other than her cry) and Chris kind of stared until the Doctor asked him if he was going to look.  "It's a Girl" he said.  We laughed.  Sweet Baby Quinn made it into the world. Perfect in every way and with a head full of dark dark hair.

She was a good baby, they found a heart murmur, which would set off a series of events, and spent a day under the bili lights before we could go home.

Our last baby, Sweet Baby Quinn Michaela, Waldron.

Seems like this thing only gets updated when I am pregnant and something is going on.  Pregnancy number 3 is over halfway done and has been way less eventful to start although a nerve wrecking start as usual. Then the gallbladder attacks started. The first one was terrible, worse pain than any childbirth I have ever been through, but after consulting Dr. Google (not usually a good idea) I determined it was my gallbladder and that this sort of thing could happen in pregnancy. It seemed like an isolated incident so I didn't see a doctor, until about 3weeks later when I got hit again with 2 attacks in 12 hours. The OB nurse suggested a visit to my primary doc who knew the problem right away and scheduled me for an ultrasound, too bas this took precedent to my alreadybsxheduled 20 wk anatomy scan.  This showed a few stones and blood tests showed some higher than normal liver enzymes.  This led to a consult with a surgeon who felt we could make it until August, after baby was born. All I needed to do was eat a low fat diet.  I agreed with this. Until about a week later when I couldn't keep anything down, low fat and all.  I called the clinic and basically got told my problems weren't related to my gallbladder. After a week of emptying the contents of my stomach daily, I just didn't feel right. Then I started getting splotchy rashes all over, I made a second call only to be blown off and told it couldn't be my gallbladder.

So I called my primary doc again and his nurse thought I should see the doc that day (Monday) He wondered why I was seeing him and not the other one, so I told him about calling that office twice now and luckily he agreed to help me--A simple blood test ruled out what I had found out from Dr. Google about gallbladder and rashes--but showed that my elevated liver enzymes had doubled from 2 weeks prior, he found this concerning and called the on call surgeon who reviewed my case and felt we needed to get the gallbladder out rather quickly.

So 2 days later I met with the new doc only to get questioned rudely by the Medical Assistant who clearly thought putting my baby at risk was a bad idea and was obviously upset I was meeting with a different surgeon (the original one was on vacation). This Med Assistant is also the one I had tried convincing something was wrong on the phone and blew me off...

But this new doc didn't think it should wait even until Monday because if the baby moved up any further it would be too much of a risk to the baby. Somehow I ended up with an attack at this appointment, 5th one in 6 days. So after discussing the pros and cons and feeling what it was doing to my health was far riskier than the risk to the baby we scheduled the  surgery for Friday the 13... Good thing I am not superstitious:)

Surgery was scheduled for 10:05 AM. Chris and I arrived at 8:45 and before I could even think about it they took me back to get everything started. This was the first time they got the IV in on the first try, always a good sign. Ran some more labs. Anesthesiologist met with me and talked about what would happen and the changes they had made because of the baby, OB came to monitor the heart rate of the baby, and my OB doc even stopped by to talk about any concerns I had.

It ended up being 10:30 before we went back. My team was very nice and got me all set. I woke up in recovery a little before noon. Anesthesia and I have some issues so I woke up panicked and in some pain.  OB came right a way to check the baby's heart rate which was perfect. My blood tests came in with lower numbers than Monday so a stone must have passed so they didn't have to do any xrays, which this surgeon was against any way so that was good. Doc said my gallbladder was inflamed so he feels we made the right choice because it probably would have gotten a lot worse. We left around 2:30 to rest at home. Hopefully recovery goes well. So relieved everything went well and the baby is OK!