08 December 2011

Finally got Synagis shot!

Yay!  After many phone calls over the entire month of November, Kayla finally got her first dose this week.  Apparently there was confusion with which documents our nurse was supposed to send to get Medicaid approval.  Hopefully, it all goes smoother next month.  It's tough to get it because it cost about a $2,500-$4,000 based on Kayla's weight and only last 28-30 days.  She has to get one every month until April to help prevent respiratory viruses. 
The nurse practitioner that we saw said that they have not seen any kids with RSV yet, so that's good.  It's usually the worst around January/February.  

She had to get 2 shots...one in each thigh.  2 nurses did it at the same time, and it hurt.  Kayla cried and has a dark bruise where one of them was.  
She weighed 18 lbs 8 oz and was 28.25 inches.  I'm happy that she's putting on some weight and length now.  She was stuck around 16 lbs for about 3 months, and I was starting to think she wasn't going to grow any more.  

How did her hair color turn out so light?  She looks blonde in this picture due to the lighting.
We're waiting to get the shot...entertaining a one year old for over an hour in a doctor's office is tough especially since I was trying to avoid her touching anything.  

21 September 2011

Dr. Appointments

September is apparently the month of seeing doctors for us...  

Cardiology Appointment
Kayla had a cardiologist visit the first week of September.  Her oxygen saturation was high 80s/low 90s which is really great for her.  I rarely see the 90s, so I was happy about that.  I didn't get a chance to figure out what her other stats (height, weight, blood pressure) were because she was having some stranger anxiety, so I was busy trying to calm her down.  She had only been to daycare a few days, but every time she saw someone that was going to touch her she would cry and cling to me.  The doctor looked at her and said she looked great.  I always try to avoid buying Kayla any blue clothes because the doctor is always mentioning how nice it is that she's wearing white or pink.  Blue babies wearing blue clothes makes their condition look worse.

After he looked at her, we went to get the echo.  She didn't like that very much.  We tried giving her some sweeties (sugar water) on a pacifier, but she wasn't interested.  They had to get someone else to help me try to hold her down.  I sang her ABCs and Twinkle Twinkle Little Star which helped a little bit. Afterwards everything looked great.  The doctor said everything was going like expected.  We only have to see the cardiologist every six months now.  Her next surgery will probably be when she is 3.  He said most parents start noticing their kid start to slow down in activity and will start being "bluer," so the parents are usually the ones to say when they think their kid is ready for the surgery.

Dermatologist Appointment
David and I had our first ever visit to the dermatologist.  He's got a wart on his thumb and on the back of his hand.  I have a tiny one on my wrist that's been there a couple years.  I figured we'd go together to figure out what to do with it.  Our options were freeze it off or use some prescription cream for 6 weeks.  She said that since David's was close to the nail bed that it might scar.  It would also be painful for him.  I decided that since he loves going to the doctor so much, we'd just do the cream for him.  I don't want to traumatize him.  I got mine frozen.  Three zaps and it blisters.  I think you can buy the same stuff at Walmart.  However, the cream is incredibly expensive...like almost $500 for some tiny packets.  Wow..  Good thing we already reached our out of pocket maximum with our insurance, so everything was free!

Optometrist Appointment 
I also had an appointment with the optometrist last weekend.  Apparently, a whole year off from work makes my eyes better!  This is the second time that my eye prescription has gotten better.  I told him I thought they were worse because sometimes stuff far away is blurry but if I focus it gets clearer.  He said that's a sign that my prescription is too strong and my eyes are refocusing to accommodate it.  However, I have astigmatism in one of my eyes.  I was a little worried I'd have to wear 2 different contacts, but he said the astigmatism wasn't bad enough.  Yay!  So I picked out some new glasses and will hopefully get them next week.

Flu Shots
Chris and the kids got flu shots.  I've never gotten one and rarely get the flu, so I don't plan on getting one.  Since David got two last year, he got to do the mist this year.  David is always super excited about going to the doctor.  He tries to make excuses to go like saying he has an owie on his foot.  Kayla hates going to the doctor.  I hope some of David's excitement will spread to Kayla some day because she's going to have a lot more visits than him.

Chris and I also had dentist appointments this month that went well.  That's it for doctor appointments this month!  The kids will have their yearly exams next month.  Kayla will have to get her second dose of the flu shot at that time.

01 August 2011

Does Mederma Work?

Here's a picture of Kayla's scar.  We used Mederma on it for about 6 weeks.  Her skin seemed a bit irritated at times, so we stopped using it a couple weeks ago.  I'm not sure if it's the Mederma that helped or if that's how it would have healed.  It does look better.

Approved for TEFRA

We got approved for TEFRA!  It is a form of Medicaid for children with complex medical needs.  We applied the beginning of February when Kayla had her surgery and didn't get news that we had been approved until early June.  The good news about it taking so long is that we didn't have to pay the premiums for it until it was approved and it covers all the way back to Kayla's birth date.  Although, I already paid most of those bills... Anyway, I see it as another form of insurance since we still have to pay for it every month.  Our company's insurance coverage isn't bad, but the out of pocket max is a lot and whatever our insurance doesn't cover TEFRA should cover it.  I figured out that the amount that I have to pay per year for TEFRA, is the same amount as our deductible for our regular insurance.  I'm hoping it helps out with the Synagis shots that will cost thousands of dollars this winter.

15 June 2011

Why?? ... Why?? ... Why??

David has started asking Why? after everything.  I knew it was going to come, I was hoping it would be later.  It's a little annoying.  I guess I should just be thankful that he doesn't say huh? all the time anymore.  
David fell on his face at preschool yesterday.  Ouch!  It looks worse today than it did yesterday.

 Kayla has been breathing heavily lately.  She's also been making a weird gasping noise a lot.  So, we took her to the cardiologist today.  The doctor says this is all normal for a baby in her condition.  We got to see our regular cardiologist this time who always has a very positive attitude about everything.  He said we didn't need to worry about anything.  If you look at her, she looks normal.  The only thing we'll start to notice is that she'll start turning bluer around age 3-6.  Then, she'll need another surgery.

Her pulse ox was 83 and blood pressure was in the 90s.   

26 May 2011

Cardiology Appointment

It's already been over 3 months since Kayla had her surgery.  These past 3 months have been great.  Kayla is doing wonderful and is just like any other baby.  She is growing, not turning blue, doesn't have problems while eating, etc.  Kayla's pulse ox was 83.  The nurse was surprised that it was so low because she looks so pink and not blue.  I had to tell her Kayla is always in the 80s.  It's rare for her to be in the 90s.  The appointment was uneventful which is good.  Since she is doing so well, we won't get an echo until the next appointment in 3 months.
Scar is looking better.

Today she started rolling all over the place... :)

20 March 2011

Kayla's Heart

Thanks to Nanette at www.HeartBabyHome.com for drawing this picture of Kayla's heart!

  • Atrial Septal Defect (ASD) [septum=wall between the chambers of the heart, atriums=top chambers of the heart] – holes in the inner walls of the heart allowing extra blood flow between the two upper chambers of the heart (atriums).
  • Double Outlet Left Ventricle (DOLV) [outlet=passage for exit, ventricles=lower chambers of the heart] – both vessels (aorta & pulmonary artery) carrying blood away from the heart come out of the left ventricle. (Normally the aorta carries oxygen-rich blood from the left ventricle and the pulmonary artery carries oxygen-poor blood from the right ventricle).
  • Hypoplastic Right Ventricle (HRV) [hypo=under, plasia=formation or development, ventricles=lower chambers of the heart] The right ventricle is under developed. It is too small. This means the heart will have to work harder and won’t last as long. Sometimes the valves entering or leaving the right ventricle are also too small or missing.
  • mild Pulmonary  Stenosis [pulmonary=having to do with the lungs, stenosis=narrowing of a passage] – a narrowing of the pulmonary artery (which carries blood from the heart to the lungs) at or near the pulmonary valve.
  • Transposition of the Great Arteries (TGA) [transposition=switch the order, great arteries=the aorta & the pulmonary artery] – the positions of the great vessels are switched so that the aorta (which carries oxygen-rich blood to the body) is closer to the oxygen-poor blood AND the pulmonary artery (which carries oxygen-poor blood to the lungs) is closer to the oxygen-rich blood.  It is usually accompanied by a hole in the wall between the ventricles (ventricular septal defect or VSD).
  • Tricuspid Artesia (TA) [atresia=absence of a normal opening] the valve that controls blood flow between the right atrium and the right ventricle in the heart is missing or fused shut.
  • Ventricular Septal Defect (VSD) [septum=wall between the chambers of the heart, ventricles=lower chambers of the heart] – holes in the inner walls of the heart allowing extra blood flow between the two lower chambers of the heart (ventricles). This causes the oxygen-rich and oxygen-poor blood to mix before leaving the heart.

17 March 2011

6 Weeks Post Op!

So it's been 6 weeks since Kayla had her open heart surgery.  I'm excited that we can now lift her up under her arms and we can do tummy time.  I had been worried that since she has had basically no tummy time since she's been born that it would take a while for her to lift her head, roll over, etc.  Well I put her on her a tummy a couple days ago and she immediately lifted her head up high!  I was so amazed and proud of my girl.  Today I put her on her tummy and she rolled over for the first time!!  I'm glad I can start doing more stuff with her now and she's starting to learn what she can do.  She's such a happy girl.  She has also gained a pound since my last posting, so I'm not as stressed about her weight gain anymore.  Yay!

 Her scar is pretty much healed.  The scab at the very bottom finally fell off yesterday and now it's indented...
Rolling over from her tummy to her back for the first time!

03 March 2011

Check Ups This Week

Kayla had her first post op check up with the cardiologist in Little Rock at the clinic.  I keep forgetting to take a picture of her with the cardiologist.  Kayla is doing great.  She doesn't have to take Enalapril anymore for her high blood pressure.  They did an echo and said she doesn't have any more fluid around the heart, so she only has to take Lasix once a day until next week.  We're excited about taking less medications!  They didn't seem too concerned about the lack of weight gain.  Some babies lose weight after surgery, and it takes a few weeks to start gaining back.  They suggested starting her on cereal to get more calories.  The next visit to see a cardiologist will be in 3 months and we'll get to go to the Lowell clinic that is close to us.

Kayla also had her 4 month check up with the pediatrician.  
Weight 11 lbs 8 oz, Height 22.5 inches, Head Circumference 38.25 cm

He was a little more concerned about her weight gain and said we would need to see him again next month for a weight check.  If she isn't doing better, he said we might have to get some high calorie stuff to mix with the breast milk for her.  However, he said gaining too much weight could also be a sign of heart failure.   I guess that's why the cardiologist didn't seem that concerned about her weight gain. 
She also had her 4 month shots and the Synagis shot.  She was fussy afterwards and went to bed that night a lot earlier than she normally does.
 Since we moved the David to his new train bed, we moved the mattress up on the crib and put the mobile in for her.  She's not sleeping in the crib yet.  I tried to get her to nap in it once, but she kept waking up.  She stays asleep longer in her swing for naps.
 She likes to play with her hands a lot.
 I only put bows on her for pictures.  :)
Lately, she's been sticking out her tongue a lot.  :-p

23 February 2011

4 Months Old

11 lbs 7 oz in this picture

She didn't reach any new milestones this month.  I am just happy that she is recovering well from her surgery.  She is always smiling and is laughing more.  Yesterday she thought it was hilarious when she saw me brushing my teeth and laughed the entire time.  But of course when I go get her daddy to come hear her laugh, she barely gave a smile.  
Someone came to pick up her pulse ox machine yesterday.  I'm so glad I don't have to deal with that machine anymore.  :)

17 February 2011

2 Weeks After Surgery

Kayla had her post op check up with her pediatrician today.  It was a regular visit to let him know about the surgery and update him on all the meds that she's taking now.  He seemed surprised that I was still exclusively breastfeeding.  I guess a lot babies have feeding issues after surgery.

Height:  22 inches
Weight: 11 lbs 7 oz.
Head:  38 cm

She has been doing really well at home.  Some days she is fussy and other days she is super happy.  Sneezing and coughing seem to hurt.  No tummy time and no lifting her under arms for a few more weeks.
Her scar is healing well.
I love how fluffy her hair is after it has been washed.  :)

Kayla's Glenn Surgery

This is about our days at the Arkansas Children's Hospital where our 3 month old daughter had open heart surgery (the Glenn).  She will have the Fontan procedure around the age of 3 or 4.  Around age 30, she'll probably need a new heart.

Day 1 - Feb 2 - Cardiology Clinic - Pre Op Check ups
The day before surgery we went to the cardiology clinic for a series of different things that they needed to check before surgery.

When we arrived, they did the normal checking of her stats (blood pressure, pulse ox, height, and weight).  Later we learned that her blood pressure is incredibly difficult to take while she is awake...

The next thing they did was an EKG.  I didn't take any pictures because it only takes a couple minutes to do the entire thing.  It was painless and not very eventful.

After the EKG, we got an echo.  She did well for most of it, then cried when the lady was taking too long and getting the gel around her neck.

Next we went to radiology to get x-rays.  They put Kayla in some sort of torture chamber.  

Poor Kayla.  She was squeezed into this thing with her arms up.  She cried the whole time.  They said that was good so they could get a better picture of her lungs.

They took some x-rays and then we were off to the lab for them to get her blood.  This was incredibly painful for us to watch.  Getting vials of blood out of an infant is not fun for anybody.  Chris said the blood was purple.  I couldn't watch.

After the blood, we went to admissions.  There was confusion since we were originally supposed to come back the next day after clinic, but they had changed their mind earlier in the week and told me they wanted to admit her after clinic.  We ended up not doing anything at admissions and going back up to the clinic.  There the nurse talked to us a little about what would happen the next day and then we went to lunch.  When we got back from lunch, the nurse was trying to figure out if our room was ready.  While we waited, the anesthesiologist came in and described what he would be doing during surgery and let us know about the complications.  We gave our consent.  Usually the surgeon is supposed to talk to us too, but he was out of town so we had to wait to talk to him the next day.  
Afterwards, we got a semi private room for the night.  Nobody else was on the other side, so that was nice.  There's a pull out chair that turns into a bed and that's where I got to sleep that night.  I woke up around 5:30am to nurse her since they said no feedings after 6am.

The white board is where I had to keep track of feedings and diapers.  The scale is for weighing the diapers. 

Day 2 - Feb 3 - Surgery Day
The surgeon came in the morning and gave us details about what he would be doing and the complications.  The way he explained the complications was not giving me any warm fuzzies.  I remember something about possibilities of having to give her surgery again and stuff like she could die.  He had a thick accent that made it hard to understand, so I was just hoping Chris was paying attention.  Around 9am, three men came in wearing scrubs (nurse and two anesthesiologists) to take Kayla to surgery.  It seemed very dramatic.  They led us to the family waiting room and I handed Kayla to them.  The nurse would give us updates during the surgery.
The family waiting room....We stared at this door for several hours waiting for the nurse to walk in with updates.  We were in the waiting room for about 5 hours.  Afterwards, they led us to her ICU room.  When we first saw her, she was all swollen and her voice was very hoarse.  Chris said he barely recognized her.  We were glad to see her and know that she was doing ok. 

The nurse said that after surgery, Kayla was super mad and her hands were clenched to all the lines.

Day 3 - Feb 4 - Mostly Sedated

She was sedated the entire day.  They gave her a patch on her back to help with pain.  However, it caused her to be more sedated than they wanted.  I think this probably delayed us a day. She was supposed to be able to start feeding, but was too sedated to be able to do anything.  She wasn't really reacting to anything.  After about 4-5 hours after the patch was taken off, she was still pretty out of it.  She woke up a little when they did her respiratory treatments.

The view from her window.  It had started snowing that morning.

Day 4 - Feb 5 -  Feedings and Removing of Lines

On day 4, she was a lot more alert.  They took a line out of neck.  I was glad about this since trying to nurse her with that would have been scary for me.  The doctor said we could start feeding, so we started with some Pedialyte.  They wanted to give her some to make sure her stomach took it.  She doesn't take bottles, so Chris was only able to get about 18 ml in her and that was with using the sweeties that they gave him.  I would have nursed her, but I had just gotten back from pumping so I had to wait a few more hours.

She felt cold when we touched her, so they put had the heat lamps on her.

After seeing her totally unresponsive the day before, I was glad to see and hear her cry.
Chris giving her sweeties.

First time getting to hold her after surgery and trying to nurse her.  It was quite difficult with all the IVs.  I sat in the chair while the nurse situated her on me.  I was excited that I could breastfeed and stop pumping.  I had been pumping the last couple days.  I had to do it every 3 hours and it would take me about 45-60 minutes to go to the room, put all the pump accessories together, pump, wash and dry the pump accessories, and store the milk.
 This is what held the stuff from the chest tube
The next feeding they had taken off the hand thing (arterial line), head stuff (cannula for oxygen and nirs for brain profusions).

Day 5 - Feb 6 - Transferred to Private Room
On the 5th day, they removed the chest tube and pacing wires.  This allowed us to be transferred out of the ICU.  We first got moved to the same semi-private room that we were in the first night.  We were in there for several hours until another family got discharged.  Since I'm breastfeeding, they moved us to the private room.  It was the same one that we were in when Kayla was born.

They call the CV East side the step down side where parents learn what they will have to be doing when they get home.  They get their stats checked every 4 hours by the nurses.  We were excited that Kayla was recovering fast.  We were glad to be able to sleep in the same room as her.  We had been sleeping in the waiting room with several other families.

That night we stared at her a lot and noticed she was a darker purple than we had ever seen her before.  Her oxygen saturation seemed a lot lower than normal too.  We told the nurse...  They see lots of blue babies, so they weren't sure if it was a big deal or not.  Turns out she just had a big booger that the nurse was able to suction out.

Day 6 - Feb 7 - Chris's Birthday and some complications
Around midnight, a man wakes me up and says he's going to do an EKG on Kayla.  I'm pretty out of it because I hadn't had much sleep.   so I'm like whatever ok...why is he waking me up... I thought this was just normal stuff that they always do.  They had told us the day before that the RA line would be getting removed that day and they would be doing x-rays and echos for it.  I was going to have to get up at 3:30am for her last meal before the removal in case she might have to have surgery again.  I was sleepy, so I went back to sleep.  I was in and out of sleep and kept noticing nurses coming in.  This was our first night in the private room, so I thought it was all normal that they kept coming in and a doctor showed up too.  Apparently, they had noticed some irregularities in the monitors and had called in the doctor to check up on her.  They put her back on oxygen and did some x-rays.  They decided to keep her RA line in longer just in case she started to have any issues.
I had problems trying to feed her with the oxygen because it kept coming off.  Eventually we just took it off and the nurses/doctor were fine with it.  She did good without it.

Chris got to spend his 30th birthday at the hospital.  His mom got her friend Molly to deliver a cake.  

Day 7 - Feb 8 - Removal of RA Line

Since the line got removed, she didn't need these anymore.  The only thing left was the IV in her foot, but that didn't have anything going in it.

Day 8 - Feb 9 - Ready to be Discharged, Learned Infant CPR
The doctor was ready to discharge that morning, but the weather had gotten really bad.  We heard there was around 20 inches of snow at home.  There was no way we were going to be able to drive in that, so the doctor was ok with keeping us there until we were ready to leave.  The extra days helped us understand what Kayla was going to be like.  It gave us plenty of time to ask any questions that we had about her condition and how to care for her.
 IV in her foot got removed, so no more lines in her!  Now the only thing attached was the pulse ox and leads on her chest.

We learned infant CPR before we left.

Day 9 - Feb 10 - Getting used to Meds
Kayla finally started keeping the meds in. We were glad.  We dreaded giving her the meds because she would cry the whole time and then vomit after we got it all in her.  Several nurses would try, but she would still vomit.

We got a lot of stuff to use for giving Kayla her meds.  The nurse recommended using a new syringe every time.  That would mean 8 new syringes a day.  We decided to just wash them in and use new ones when we can't see the numbers.  The pill pulverizer, pill splitter, and the little cups are for her baby aspirin. We have to split the tiny pill into 4 pieces, then smash 1/4 of pill into powder, add water, and give it to her in a syringe.  I think they should just make a liquid form of it.

Day 10 - Feb 11 - Discharged!
We were still trying to decide when we wanted to leave.  It was supposed to get up to 43 degrees that day.  Chris decided around 10:00am that if we left by noon, then the roads should be ok.  Anytime after that would mean we might be driving in the dark and we didn't want to chance it.

One last look at the monitor.  These were taken in the same minute.  Notice the oxygen is at 64 then at 81 just a few seconds later.  I'm not going to miss the pulse ox machine.

 Chris and Kayla with Miss Shirley.  She was one of the nurses that came in to get Kayla's blood pressure and temperature.
 Dr. Eble checking on Kayla before we get discharged.