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.