15 December 2010

Another Echo

Height:  51.5 cm
Weight:  4.1 kg
Oxygen Saturation:  85%

Kayla hadn't pooped almost an entire week, but as soon as we take her to the doctor and have to weigh her she lets it all out.  It was a big mess, but it was the reason why her weight was lower than what we weighed her at home before we left.  We love going to the clinic in Lowell.  The doctor is nicer and seems more optimistic.  He was the first doctor that Chris talked to after Kayla was born at the children's hospital.  The wait time there also seems to be less.  

Kayla still appears to be doing okay.  She was wide awake during the whole echo and didn't cry at all.  We have another appointment the next time the doctor is here on January 5.  He thinks we might be able to schedule her surgery in the next visit.  From reading other blogs and forums online, the earliest they do the Glenn surgery is when the baby is 10 pounds.  So she should be around that weight when she is 3 months old.  

09 December 2010

Week 7

Kayla is making eye contact a lot and starting to following objects.  She's been gaining about an ounce a day.  This week she has started to poop her mustard poo every other day.  She's been sleeping a good 5 hours straight at night.  I don't have any schedule with her yet.  Feeding her on demand and letting her sleep whenever she wants works out a lot better for me.  
Yesterday we got to see the cardiologist in Lowell instead of having to drive to the children's hospital in Little Rock.  It was nice not having to sit in the van for 6+ hours for a doctor's visit.  
Height:  51.5 cm
Weight:  9lbs
Oxygen Saturation:  ??  
The pulse ox measured at 78.  However, the doctor didn't believe it because she was looking very pink and not blue.  So we tried to measure it again, but the machine was low on batteries and kept turning off.  We think it was at 85.  When we measure at home it is normally ranging around 80-85.   We are scheduled to go again next week for an echo.  The doctors say that if she stays the way she is until she's at least 3 months, then she can probably skip the shunt surgery.    Then she'll be big enough for the next surgery.  

David is doing great.  He's a great big brother and will give Kayla kisses when she's sad (crying) or try to give her a blanket or other stuff that he thinks she needs.  
We're trying to potty train him.  Daycare thinks he has peed in the toilet there and is ready for it.  We've been letting him sit on the toilet for the last few months hoping that he'll just go on his own.  He seems to want to, but he pretty much just sits there with nothing happening.   It'd be nice to have just one baby in diapers.  :)

02 December 2010

6 Weeks


We had another checkup with the pediatrician yesterday.  She got another Synagis shot.  That was the first time I ever had to hold a baby down for a shot.  Usually Chris does those or they don't need me.  Holding down a crying baby while she gets a shot isn't fun. :(

Height 20" 
Weight 8 lb 6.5 oz. 
Head Circumference 34 cm


She is growing, but her growth percentiles are around 14-16%.  
She can still wear her newborn clothes, but her 0-3 month clothes are fitting her better now.  The outfit above is 0-3 months.  She is wearing size 1 in diapers.  
She is a lot more awake these days.  When she first came home, it seemed like she was only awake for maybe an hour each day.  Now she's probably awake maybe 4-5 hours a day, and she is wanting to be held more.  She frowns when she hears loud noises and she's trying to nap.  She doesn't seem too fond of her brother because he's always being loud.  


This is about as much as she can lift her head.  She's still doesn't really like being on her tummy.

24 November 2010

One Month Old


Height:  20 inches
Weight:  7 lbs 15 oz.
Oxygen Saturation:  86%

She still sleeps most of the day, but is starting to be more awake.  She tends to be gassy at night starting around the time I want to go to sleep.  I don't really give her much tummy time because she gets upset.  When she cries for over a minute, her face starts turning blue.  She hates pacifiers.  We tried to give her one the other day and she gagged on it as soon as it touched her lips.  She is exclusively breastfed.  I pump every once in a while, but I usually end up throwing that milk away.  I've figured out that it's pointless for me to freeze it because I will probably end up throwing it away.

We made another trip to the cardiology clinic at the Arkansas Children's Hospital yesterday.  She cried a lot when they tried to do the echo on her.  I ended up having to hold her in my arms while they did it.  Her artery to the lungs is getting narrower faster than doctors would like.  If it continues at the same rate, she might have to get the surgery that we wanted her to skip.  We are kind of still just waiting to see how her heart grows.  They said that if her oxygen saturation gets below 75 then we need to call them.   She's been gaining about 20 grams a day since the last time they saw her.  Ideally, they would like to see her gain 30 grams, but 20 is still okay.  We have another appointment in 2 weeks, but we get to go to Lowell instead of driving to Little Rock.  

13 November 2010

Different Pulse Oximeter

We had to exchange the pulse oximeter because it kept giving us problems.  The new one that they gave us is a lot better.

David likes to have his turn, so we check his hand.  On Kayla, we normally check her foot.

11 November 2010

3 Weeks Old

Since the pediatrician said she was growing slowly, I started worrying about how much she was eating everyday.  I ordered this Salter 914 Electronic Baby and Toddler Scale so I could weigh her daily and also weigh her before/after feedings to see how much she was getting.  Last night and this morning it said she weighed 7lbs exactly.  We'll have to see what she weighs on Monday at the pediatrician's office to see if there is a difference in our scales. 

Amazon sent the scale in this huge box...I wonder when David will start outgrowing them.  :)
We got a call from the cardiology clinic on Monday telling us that insurance had approved the home surveillance equipment.  Someone delivered a pulse oximeter so that we could measure Kayla everyday.  It measures her heart rate and oxygen saturation.  We were surprised at the monthly cost of it...$450.  I googled the price to buy and it was a little over $500... somebody is making some $$$.  

I wish I had written more about David in the blog when he was younger, but at least there's plenty of pictures.  If you don't count Kayla's stay at the children's hospital, I think David had actually been to the doctor's office more by this age because he had jaundice.  I decided to put Kayla in the same outfit and try to pose her the same so we could see the differences between the babies at 3 weeks.  Check out the blog post for David at 3 weeks old.  He weighed over a pound more than Kayla at 3 weeks...
so sleepy
not excited about tummy time

04 November 2010

2 Weeks Old

The calendar is slowly filling up with doctor appointments.

We had an appointment in Little Rock at the cardiology clinic at the children's hospital.  They checked all her vitals and she appears to be doing the same.  We're waiting for her to grow to see how her heart does.  We'll probably know more in the next 6 weeks.  We have another appointment with them in a month.  The doctor frowned when we told her that David goes to daycare.  If Kayla gets sick, it could be very serious and need to be hospitalized.  

We also had a 2 week checkup with the pediatrician.
Height 19" 
Weight 6 lb 12 oz. 
Head Circumference 32.5 cm


The pediatrician said the weight gain was a little slow, so he wants to see us again in a week.  Kayla also got the Synagis shot for RSV.  That shot is quite pricy.  I hope insurance covers it.  They said the first shot is $1200 for 50 mg and the next would would be $2400!  She has to have these shots every 28-30 days during RSV season. 


So how's everybody doing?
I'm doing good....just a little tired from all the night time feedings.  I'm recovering from this pregnancy a lot faster than I did with David.  The swelling in my hands and feet finally went down after week.  I also wasn't in as much pain this time.


On Monday, David went back to daycare and Chris went back to work.  We were a little worried that David might have problems returning, but he was great all day.  They said on the first day he carried a doll around and kept saying 'my baby'.  He is a great big brother and loves to help out whenever he can.  


Kayla sleeps all day and is usually only awake for maybe 2-3 hours a day.  She only cries a little when she wants to be fed or held.  She just worries us with her breathing.  Sometime she breathes fast, but the cardiologist said it was normal.

31 October 2010

Doctor Appointments

David's 2 year check up was this week.  I had scheduled it last month and didn't think we were going to make it.  I'm glad I didn't cancel it because Kayla was able to have her newborn check up scheduled right afterwards.  


David:
Height 33.75" 
Weight 25 lb 1 oz. 
Head Circumference 48 cm


His weight is a little low.  Doctor said we could give him Pediasure or Carnation Instant Breakfast drink.  We've tried Pediasure, but he doesn't really drink it.  The doctor gave us a free sample of the Carnation mix and some Kid Essentials chocolate milk, so we'll try it.



Kayla:
Height 18.5" 
Weight 6 lb 7.5 oz. 
Head Circumference 32 cm



We pretty much just talked about her heart defects and the doctor recommended giving her Synagis which is a shot for RSV.  Appeared to be a lot of paperwork because after the appointment I got 3 different phone calls about it needing a lot of info about her.  

29 October 2010

Our Days at the Arkansas Children's Hospital

Day 1 - October 22 - Transported to ACH
Kayla was transported by ambulance to the Arkansas Children's Hospital about 2 hours after she was born.  When she was there the doctors did another echo to get a better look at her heart to determine her diagnosis.

Kayla's Diagnosis:
Tricuspid Atresia
D-Transposition of Great Arteries
Unrestrictive ASD
Large Perimembranous VSD
Mild Pulmonary Stenosis

It looked like the heart tried to work around some of the problems to compensate for the heart defect.  This meant Kayla's heart was okay for now and we could let her grow more before having surgery.  They took Kayla off the prostaglandin that was supposed to keep the ductus open.  It normally closes after a baby is born.  If she was stable, then it would confirm that we could wait to have surgery.

Day 2 - October 23 - Monitoring Kayla
I was discharged from UAMS in the morning and immediately went to the children's hospital to go see Kayla.  We were told that if her ductus was closed and she was still doing okay then I could probably start breastfeeding.  A doctor did another echo, but we didn't hear the results until that night.  When the doctor came around, she said the ductus was closed and Kayla was doing great but she wanted to wait another night before trying to breastfeed because the tube going to her umbilical cord was only about 4 cm when it's normally about 10 cm.  If she was still doing well the next day, then the tube could come out and I could breastfeed.  Meanwhile, we were able to go ahead and give her some formula.

Chris feeding Kayla her first bottle at 3pm.

Day 3 - October 24 - Began Breastfeeding
The next morning Chris and I got to the hospital around 5:30am, so that we could give her the 6am bottle.  Kayla was doing great, so they took the tube out of her umbilical cord and allowed me to breastfeed her for the rest of the day.  I was quite excited about this because I had been trying to pump every couple hours, but was never able to get a drop.  Kayla latched on perfectly the first time like she'd been doing it forever.  I was glad about this since David had some problems in the beginning.

Kayla was stable enough to be moved to a different room, but they kept her in this room for another day.  Now all they wanted to do was make sure she was eating good and having good diapers.  They also were going to do another ultrasound to check her kidneys and brain.  I slept in the waiting area that night, so that I could get up every 2-3 hours to feed Kayla.
Chris changing one of Kayla's diapers for the first time.
Holding Kayla for the first time so I can breastfeed.
Day 4 - October 25 - Moved to Private Room
The next day they did the ultrasound and everything was good, so we were moved to a private room.  Kayla wasn't having many wet diapers, so they wanted me to supplement with formula.  My milk hadn't came in yet because I'd only been breastfeeding for a day.  She was just getting the colustrum which is usually enough for newborns.  I didn't think the doctors were being very supportive.  I think they need some breastfeeding training as they didn't really seem to know much about it.    I wanted whatever was best for Kayla and wanted us to go home as soon as possible, so I gave her formula each time after I breastfed her.
Kayla's private room.
Removed everything from her head.  She had red spots where all the tape was.
David got to visit
David and Nana visiting
Day 5 - October 26 - Discharged!
I was glad that I got to stay in the room all day and night with Kayla.  My milk still hadn't come in, so I started pumping again to see if I was getting anything.  I also went and talked to a lactation consultant because the doctors were making me feel like a failure.  She said she was worried that they were going to make me supplement with formula when she heard I was going to start breastfeeding.  She recommended staying off formula, but said sometimes milk doesn't come in for up to a week.  I felt better after talking to her.    


The only thing left to do was give Kayla a carseat test.  This is where the baby has to sit in the carseat for the duration that it takes to go home.  In our case, this was 3 hours.  They monitor her on the machines, and she passed.  We were all set to go home.  The doctors just wanted me to keep supplementing with formula until my milk came in.  They also scheduled an appointment with our pediatrician and an appointment to see the cardiologist again in Little Rock.  She got to home without any medications.  Yay!
My 15 minutes worth of pumping produced a whopping 5 ml of colustrum.  That container holds about an ounce.  The bottle on the right is 2 ounces of formula.
Carseat test.  Kayla slept the entire time.

27 October 2010

Kayla's Birthday - Friday, October 22

When I went to my doctor's appointment on Thursday afternoon, the doctor said I was 4cm dilated and 75% effaced.  He said he wanted to strip my membranes and send me to the hospital to deliver.  However, the nurse said it might not be such a great idea to deliver in the middle of the night, so he told me to go to the hospital around 4-5 in the morning and say I was having contractions.  

Chris's mom drove down to Little Rock, so that she could watch David.  Since it's flu season, anyone under the age of 4 is not allowed to visit.  Chris and I went to the hospital around 5am.  After all the paperwork and getting us settled in the room, around 6am they started giving me pitocin to induce me.  They had to stick me twice for an IV.  They did an ultrasound to see how the baby was positioned and told me the baby was 4lbs 13 oz.  This made us a little worried since a few weeks ago when they did the ultrasound they said she was around 5 lbs.  I was 6 cm dilated when I arrived.  I think this might not have been correct because 4 hours later I was 6.5 cm dilated.  It just depends on who is checking it. 

They also had to give me an epidural twice because the first time didn't work.  That was probably the most painful part of the whole delivery.  They gave that to me at 8am and it took about an hour for them to finish.  The second time they gave me the epidural I was shaking just from the anxiety of having to get it again.  I think they had to do just about everything twice for me that day.  

Around 2pm, I was completely dilated.  The nurse wanted to wait until I was ready to push.  After about 30-45 minutes, I could feel lots of pressure and the need to push.  They started to get everyone in the room and around 3:00, I started pushing.  It only took about 15 minutes and at 3:16, Kayla was born.  Since I delivered at UAMS, the experience was a lot different because it was a learning hospital.  The room was filled with nurses and doctors.  There were nurses that were excited to see their first vaginal delivery.  Chris didn't get to hold my leg or help me hardly any because the nurses wanted to do it all.  This was delivery was lot easier than David's because I didn't have to push as long and I got the epidural before I started feeling any contractions.  After Kayla was born, the doctor snipped the umbilical cord and they took Kayla to get her ready to be transported to the children's hospital.  The whole day I was tired.  Chris says I took several 5 minute naps that day.  After pushing Kayla out, I had a lot of energy.  I was really sad that I couldn't hold her and breastfeed like I was able to with David.  However, they did push her into the room before transporting her so I could see her and take a few pictures.

Chris stayed with me for a bit, then left to go to the ACH to see what the results of her echo was.  The epidural didn't wear off for about 6 hours after I delivered.  I couldn't lift my right leg for the longest time.  It was so uncomfortable.  I spent most of the time wanting to pump but they didn't give me the pump until around 8pm.  I pumped several times that night, but wasn't able to get a drop of anything.

Having contractions.  They had me sit up so gravity could help out a little.  I had to have them position my  legs because the epidural made my legs numb and I couldn't move them.
Preparing Kayla to go to the Arkansas Children's Hospital (ACH).
Kayla was 6 lbs 7 oz and 19 inches
Getting to see Kayla before she gets transported to ACH.

Kayla's room at at the CVICU.  There is a nurse dedicated to monitoring her at all times in this room.
Chris getting to hold Kayla for the first time.

02 October 2010

New Due Date

We went to Little Rock again this week to get another echo and ultrasound.  Our appointment was at 9:30, but we got there at 8:50 and they actually had us in the room at 9:00!  We were glad we didn't have to wait too long, but then they took 1.5 hours doing the echo.  Then another 30 minutes doing the ultrasound.  They didn't really find much different this time.  Instead of pulmonary atresia the doctor said it was pulmonary stenosis.  Which is where a tiny amount of blood flows out instead of nothing.  However, she still has tricuspid atresia.  I don't think they'll really have a good idea until she is born.  Since she is bigger now, there appeared to be shadows and stuff that made it hard to see.  The ultrasound went well in that her other parts seem fine.  They have scheduled me to be induced on October 25th, so I'll have another October baby.  After the ultrasounds, we went to the children's hospital for a tour of the parts that we'll most likely be spending a lot of time in.  We got to see the CVICU, NICU, waiting room, and lactation room.

We plan on moving to Little Rock next week just in case I go into labor earlier.  David was born at 37 weeks because my water broke.  If that happened here, they said they'd probably have to send a helicopter for me to deliver in Little Rock.  I have started my leave of absence from work and Chris plans on working remotely.  David's last day of daycare and my last day of work were on Thursday.  I'll probably be on leave until after she has her 2nd surgery which is probably at least 6 months.  However, I think David will probably go back to daycare when we're back home again.
Family photo before we leave

21 August 2010

She has Heart Disease :(

We drove to Little Rock twice this week. On Thursday, we went for genetics consultation and an ultrasound. They told us that basically the baby has half a heart with the left side not developing. They called it hydroplastic left heart syndrome. Since they agreed with my regular doctor that there are problems, then we had to go to the Arkansas Children's Hospital on Friday for a fetal echocardiogram.

So on Friday, we went to the Arkansas Children's Hospital. The echocardiogram seemed to be exactly like an ultrasound except they focus on the heart. They focused on it for about an hour looking at the heart at all angles. I fell asleep for a little bit since I was laying down in a dark room and had no idea what they were looking at. After the doctor reviewed everything, he sat down with us and drew picture of a regular heart and our baby's heart.

He told us that the right part of her heart wasn't developed. This confused us a bit, since the first 2 doctors said it was left part that wasn't developed. However, we trust him since he appeared to be an expert and looked at it for quite a while. She's got tricuspid artesia and pulmonary atresia. If you want the details on what that is, you'll have to google it.

I'm going to have to give birth in Little Rock at UAMS. Right after she is born, they will have to give her medicine to keep part of her heart from closing. She'll have to stay at the children's hospital where doctors will monitor her and give her an echocardiogram to determine what needs to be done. The doctor said she'd probably be there for 4-6 weeks after she is born. She will most likely have to have 3 surgeries. The first surgery (shunt) will be in the first 2 weeks, the second (Glenn procedure) will be when she is 3-6 months, and the third (Fontan procedure) will be when she is 2-3 years old. She'll probably have to take medication her whole life, but they say that she can live a normal life for the most part.