Saturday, January 29, 2011

Sisters Meet for First Time

We welcomed the newest edition into our family at 1:58am on Wednesday morning.  She weighed 8lbs 7oz and was 20 inches long.

Sweet Pea got the chance to meet her little sister on Wednesday afternoon. She showed a little interest in her and then signed all done.  She has repeated that performance a number of times since, but she has been very sweet to her.  I will have to try to capture her trying to help me burp her sister.  I think it is the cutest thing ever!

Here are photos from their very first meeting:

We requested to be discharged from the hospital on Thursday afternoon because we could never get any rest there with people always coming into the room for one reason or another. We had to go see the pediatrician yesterday (Friday) because she is a little jaundiced and the hospital pediatrician wanted our regular pediatrician to make the call on if anything needed to be done about it. She weighed 7lbs 13oz at the doctor on Friday and since she was 7lbs 14oz at 2:30am on Thursday it looks like she is probably done losing weight. My milk came in yesterday so that should help as well. Our regular pediatrician isn't worried about the jaundice. She wants us to put her in the sun a bit, but that is about it. If it gets worse then we will go see her again, but otherwise we won't see the doctor for 2 weeks. Such a nice change from Sweet Pea's first week of life!

This little girl is very sweet. She sleeps a ton (more during the day than night, but we are talking to her about changing that), eats fairly well (if only she would stay awake for a full feeding that would help) and isn't very fussy. We hope that doesn't change as she gets used to her new surroundings!

Now, if you haven't noticed, we don't have a nickname for her yet to use on this blog. If you have any suggestions, let us know!

Tuesday, January 25, 2011

Sleep Study Results

Amidst all the chaos of the new baby coming, I almost forgot to update everyone on the results of Sweet Pea's sleep study (Thanks Life with My Special K's) that we did on January 7th.  Since we had to postpone our ENT appointment (it was supposed to be in 4 hours, but seeing as I'm in a hospital bed waiting to give birth...) until mid February and I didn't want to wait to get the results so I asked for the doctor to call.  I got a call yesterday from him and he said that there is no obstructive apnea, that her oxygen levels were good all night and she held her breath once for 9 seconds.  That was it!  There is nothing wrong with her, she is just a true restless sleeper.  It was music to our ears to hear that there was no underlying cause of her restlessness.  We hear her hitting the wall numerous times each night and so it will be comforting to not worry now!

Ok, that is all for now.  I'm sitting in the hospital with the pitocin trying to do it's thing.  Hoping to have some big news to announce today, but at this rate I'm not so sure.

Monday, January 24, 2011

Last Post About an Only Child

Tonight is probably Sweet Pea's last night as an only child.  She has blessed us with so much in her short 22 months and I can't imagine my life without her now.  Sweet Pea may have caused me a lot of emotional chaos when we first found out about her diagnosis, but I am very happy to say that I am almost completely over that!  It's been a long hard journey to get here, but being here is worth it!  She can make the rest of the world disappear with just one smile or one giggle.  She is a trouble maker in training, but so adorable in the process.  Every day she is learning new things and getting stronger and more confident in her abilities.  I love her with all my heart and I know that having a little sister will be wonderful for her...down the road a little bit.  Her world is about to be turned upside down, but hopefully she will handle the change very well.  I am so amazed at all that she has taught me and all the personal growth that she has helped me achieve.  Sweet Pea, you are amazing!

This past weekend we had our monthly play date with our local support group and it was held where Sweet Pea gets her PT now.  She had a blast and even tried out the walker again!  She hated it when we tried it back in mid November, but is loving it now!  Too bad she can't steer it yet!  This is just a short clip of her walking with it, but she went back and forth a lot!  Hopefully her PT is going to work with her on it starting on Thursday so we might see some good progress soon!

Video of her walking with walker:

Here are a couple of Sweet Pea on the zip line.  The faster it went the more she enjoyed it!  The sounds she made were just precious!

Sweet Pea, I love you with all my heart and soul. I will miss you while I am in the hospital, but look forward to being back home with you very soon. Hugs and kisses!!!!

Sunday, January 23, 2011

Maternity Shots

We were very lucky today and a wonderful friend offered to take some photos of me before the baby arrives.  I had been meaning to have my mom take photos like she did before Sweet Pea arrived, but as you know, time ran out quicker than I had expected.  Unfortunately, Sweet Pea was taking a nap so she missed the photo shoot.  Maybe I will try to take a few shots with her tomorrow afternoon.

Saturday, January 22, 2011

Sweet Pea's Hair

After seeing Aimee's post about Piper's hair...or lack there of...I just had to post these photos that we took of Sweet Pea on the 11th.  Her small amount of hair is more of a mullet than anything else.  We just don't know what to do with it.

Run like the wind:

Friday, January 21, 2011

Baby #2 Update

It's been an interesting 36 is the recap...

I had an ultrasound Thursday morning to get an estimation of the size of this little girl.  My OB has been nervous about her size for a number of weeks now because I've been measuring well ahead of where I should be.  She wanted to make sure that the belly was smaller than the head to help ensure that she won't end up with shoulder dystocia.  Shoulder dystocia is where the shoulders don't/won't come out after the head is out.  It could be as minor as just needing to do a few maneuvers of the baby to get her out, could mean a broken clavicle, and all sorts of things that increase in severity up to cerebral palsy or death.  Obviously the severe end of the spectrum doesn't happen often, but it is an outcome that the OB's have to consider.

The ultrasound estimated that she was just under 9lbs currently and the average growth at this point is 1/2 lb a week.  The head circumference was estimated to be 35.25 cm and the abdominal circumference was 36.43.  The head equates to an average baby at 41 weeks 1 day gestational age and the abdomen equates to 40 weeks 3 days.  There is no way for them to measure the shoulders because of how they are cramped into the uterus so they have determined that there is a correlation between shoulders and abdomen.  Since her head is smaller than her belly, the ultrasound doctor (same group that did my CVS) recommended a c-section.  He seemed quite blown away by her size.  He kept looking at her chubby cheeks and saying that she was remarkable and impressive.  Those really aren't words you want to be hearing in that situation and in the manner that he was saying them!  My OB knows that I want to do everything to avoid a c-section and so they compromised and agreed to the following plan of action.

Monday morning (1/24) I will go in for an amniocentesis with the ultrasound doctor.  The purpose of this test at this point in the pregnancy is to determine if the lungs are mature and ready for the world outside of the womb.  The results are available by 4pm that day.

If the results from the amnio show that the baby is ready for the real world then I will be heading into the hospital at 2am on Tuesday morning to begin the induction.  The induction could take anywhere from just a few hours to over 24 hours.  They will probably start by giving me something to help soften the cervix and that is supposed to take 6 hours to work and then they will put me on pitocin which should start the contractions which work to dilate the cervix and work the baby out.

If all goes well, I should have the baby sometime on the 25th or 26th at the latest.  Please think positive thoughts for us all!

This has been extremely emotional for me as I wanted to do things as naturally as possible.  I'm coming to terms with what has to happen and trying not to second guess the doctors too much.  The biggest shock is probably that I went from having almost 3 weeks to having only 4 days to get everything ready!  Yikes!  My sister was a HUGE help this afternoon and we got a lot crossed off my to do list.  Now I want to focus a lot of my time and energy on Sweet Pea and cherish every last minute that I have with her while it is just us.  All too soon her world is going to be turned upside down when her little sister joins us and she is no longer the center of the universe.  This will also be my first time spending a night away from her and I know that it will be more than just one night that I'm not home for.  She will be going to Grandma's on Monday evening so that we don't have to transfer her at 1am so I won't be with her Monday and definitely Tuesday and who knows about Wednesday.  I'll be able to see her for a little while on Tuesday and hopefully on Wednesday too, but the hospital isn't close so I don't really know if that will work out or not.  Hopefully she behaves and doesn't have too hard of a time being away from us.  Grandma takes care of her a lot so that will definitely help make it easier on her.

People keep asking if Sweet Pea knows what is coming and I have to admit that I probably should have tried harder to prepare her for this, but the baby in the belly thing seems so abstract that I really don't think she would have gotten it.  We have definitely talked about her sister coming and a baby coming, but until she is really here I don't think Sweet Pea will understand what that means for her.  She is going to be an amazing big sister...eventually.  I can't wait to see what she does when she first meets her!  So many fun memories are about to be made!  I need to think about all of those instead of how sad I am that my time alone with Sweet Pea is coming to an end.

So that is the news on our end of the world.  Here are a couple of photos from the ultrasound on Thursday.

Lips, nose and left hand:

Silhouette of face:

I can't wait to meet her!  Now we just have to decide on a name for the little girl!

Sweet Pea Update

I've been neglecting this blog more than I should so here is a quick recap of some of the things we have been up to recently.

Disneyland:  This was a wonderful day!  Sweet Pea was spoiled rotten by her aunt, uncle and cousins all day long.  She walked a ton and loved watching everything around her.  She went on a lot of rides and didn't have any problems in any of them.  Mommy was more afraid on Astro Orbitor than she was!  My camera was too slow to capture many good shots and I haven't gotten around to copying Uncle A's yet so you will have to settle for these:

Teeth:  Wow!  Sweet Pea has been having more teeth appear regularly for what seems like months!  She is now up to 11 that have broken through and at least 2 more are close.  She has her front four (central incisors) and her first set of molars completely in. The bottom lateral incisors have broken through (left first and then right came in) and the top are working on it.  The biggest shock was that I saw her bottom left two year molar has come through!  She doesn't even have all of her front teeth and she is got another molar?  That doesn't seem fair to her!  She deals with it quite well and only has issues at night and we give her Tylenol on the bad nights.

Play dates: We have been going on a lot of play dates and loving every minute of them!  I figure I need to get in as many as I can before the new baby arrives and makes life a bit more challenging.  Sweet Pea loves hanging out with other kids and is bored stiff at home so this is a favorite activity.

Park time: If you aren't local you may not know this, but we have been having summer weather for about a week now.  We took advantage of it and went to a couple of parks.  Sweet Pea played in sand at one of them and didn't try to eat it!  She ate a little when it was stuck to her hand when she put her hand in her mouth, but she wasn't intentionally trying to eat it which made Mommy very proud.  She is learning how to scoot forward to go down the slides, but her shoes still act as brakes and that makes going down a challenge.  She sure loves the slides though and is good at climbing the stairs to get back up.  This new skill will really be helpful when I have a little one strapped to my front soon!

IEP Training: I won't be able to attend the upcoming IEP training on the 29th so I'll need to try to find another one to attend before September.  I'm sure something will be offered since so many groups offer them in the LA area.  That is certainly a benefit of living in the Los Angeles area!  There are so many people and amazing resources at our fingertips!  I feel for the people that don't have that available to them.

Support Group:  I attended our local support group meeting this week and our guest speaker has taught sign language and been a deaf interpreter for many years.  She had a couple of helpful tips that I thought I would pass on:
  • Don't just sign to your child.  Sign when you are speaking to your spouse and other children as well so that they realize that this is a way to communicate with everyone.
  • It takes 500 times of seeing a sign for the typical kid to pick up a sign and 800 for a deaf child.  She didn't have any stats for a child with DS, but I thought it was interesting none the less.  I think this stat was for when they were just starting to use signs because it is clear to me that Sweet Pea picks up new signs now a lot faster than she used to.
  • Sign language can even be useful long after they are talking for times where you shouldn't be talking, but want to say something...she gave the example of being at a party and signing potty to her husband across the room so he knew where she was running off to.
I think that is about it for now.

Friday, January 14, 2011

Cord Blood Banking

I need some advice...we are about a month away from delivering our newest baby girl and we have been considering banking her cord blood.  I don't think we would even be considering it if Sweet Pea didn't have Down syndrome.  We've read all too often about how her chances of childhood leukemia and other diseases are significantly higher than those of a typical child.  We have seen too many sweet little girls (it's odd that I can't recall any boys) be diagnosed with that nasty "C" word and require round after round of treatment.  Most have had happy endings, but others are still fighting the battle and we continue to pray for them.  It all creates too many fears to even write about.

I know that some of these fears would exist even if Sweet Pea was typical and had typical chances of having a medical issue, but they are certainly magnified because she isn't typical and her risks aren't typical.  However, the cost of cord blood banking is quite expensive and it seems that the banking companies are succeeding by feeding off of parental fears.  It's like they are saying, "How can you put a price tag on saving your child's life?  Is $2,000 more than your daughter is worth?"

The thoughts going through my brain are these:
  • Am I throwing away $2,000 immediately plus $125 every year after?
  • My daughter is very healthy and why should I think that she will be anything but healthy in the future (and my newest daughter will be too).
  • This one is foolish, but I jinxing her by doing (or not doing) this?
I know that if we don't bank the cord blood and something happens where we could have used it we will certainly be beyond mad at ourselves.  However, the chance of that happening is VERY small, but it is still there.

If I was still working full time and bringing in a decent salary then this really wouldn't be much of an issue.  But that isn't how it is these days.  We are trying to live off of one salary and even that salary has been lowered from what it used to be.  Taking a 60% decrease in income is hard, but it was a choice that we made that we truly believe will be best for both of our girls.  When we made the decision we knew that there would be things that we couldn't afford and we were going to have to make due without them.  But is this one of those things?

What would you do?

I can't leave this posting on such a depressing here are some photos from yesterday.

Sweet Pea doesn't interact with my belly normally so I had to try to capture this moment when it happened.  It's like she was listening to her sister:

 When is she coming out to play?

And finally, just a short video clip of her chatting with me:

Saturday, January 8, 2011

Sleep Study Recap

I'm very lucky that there was a change in plans today.  The IEP training that I was supposed to attend got pushed this morning to the weekend of the 22nd!  Needless to say, I was thrilled!!!!  Daddy let me sleep for a few hours when I got home from the hospital a

We survived the sleep study!  I don't know who it was harder on...ok, it was harder on Sweet Pea, but it wasn't easy on Mommy either!

We let Sweet Pea have her usual afternoon nap and then kept her up until we left for the hospital a little after 8pm.  I gave her all her favorite car toys and even had the overhead light on right over her car seat, but she still fell asleep within just a few minutes of driving.  There was minimal traffic and so we got there just a few minutes early.  Went to admissions and signed in and sat down next to a mom and her son.  My DS radar is always on these days and I thought that this boy had DS, but wasn't positive.  At this point I started trying to wake Sweet Pea up and that got the mom and I starting to talk and sure enough, he did!  He was very cute, four years old and was in for his annual sleep study.  He has sleep apnea and so they do this every year for him.

Here is a photo of Sweet Pea trying to figure out why I've just woken her up and where exactly we are:

When we were taken into the sleep lab, Sweet Pea and I were sitting in her room twiddling our thumbs for a little while.  I started talking a bit louder to Sweet Pea about how I know she was tired and I'm sorry for keeping her up, but we have to wait for them to tell us what to do.  Luckily the nurse heard me (he he he) and informed me that I could let her go to sleep.  Why she didn't tell me that when we first went in the room?!?!  Anyway, I changed Sweet Pea into her pajamas and gave her some milk and she crashed right out on the big bed.  She has been looking so big to me recently when she sleeps in her "big girl bed" (aka crib mattress on the floor), but boy did she look small in these beds.

A short while later the nurse came in and started hooking Sweet Pea up to the machines.  She started with the heart rate and oxygen saturation sensor on her toe and taped it up her leg so that she could stay in her pajamas.

Sweet Pea was pretty good while the nurse stuck more and more sensors on her.

She squirmed a lot when they put the nasal cannula on and ended up off to the side:

I couldn't believe how many wires and sensors there were!

When the nurse was done she put the blanket on Sweet Pea and that was it:

I don't know why it surprises me, but this was all the equipment that was in the room.

Here is my understanding of what a few of the sensors were for:
  • Straps around her chest: measure when her chest rises and falls as she breathes
  • Chin sensors: in the deepest stage of sleep the chin completely relaxes
  • Many of the sensors on her scalp: help determine the stage of sleep
  • Nasal cannula: measuring how much CO2 she is expelling
This was my bed that made a fair amount of noise when I would turn over, get up or lay down.  It wasn't as bad as I feared, but it certainly wasn't comfortable.

The wires started out fairly organized with a decent amount of play in them.  By morning, things were completely twisted up.

The reason that we were doing this sleep study was to ensure that she doesn't have sleep apnea or other issues that contribute to her restless sleeping.  We moved Sweet Pea out of our room and into her crib at just a few weeks of age because she would cry out in her sleep and wake us up, but not really wake herself up.  Anytime we have to share a room with her we end up sleeping fairly poorly because she still pulls the same stunts.  Since she will be sharing a room with her sister in a couple of months we really wanted to get to the bottom of these sleep issues if there is something that needs to be done about them.

There was very little sleep time for me as throughout the night either Sweet Pea would start fussing and I would get up to pat her down before she fully woke up and ripped off sensors or the nurse would come in to fix something that Sweet Pea had managed to dislodge.  The nurse explained that she would only come in if a sensor was really needed and that they couldn't just utilize the same sensor on the other side of her face.  Turned out that was more often then I had hoped.  I think I got about 30 minutes of sleep for each hour that we were there and even that wasn't very good sleep.

Sweet Pea woke up very early...around 5am...and I thought I had to try to keep her asleep as I had been told to do during the night. That wasn't working well!  Every once in a while she would suddenly take off for the base of the bed and in the process pull out her O2 saturation sensor or try to climb out the side of the bed to get closer to the equipment on the table next to her.  Finally the nurse came in at 5:45 and said that I could let her get up.  Sweet Pea wasn't real thrilled with the situation that she was in, but dealt with it pretty good.  This poor girl was just covered in sensors and wires and I felt so bad having to corral her in the bed.

Finally around 6am the nurse started taking off the sensors.  It was a complete rats nest of wires!  The nurse said that Sweet Pea wasn't her most restless patient ever, but she certainly was near the top of the list!  I had to laugh a little as there was a part of me that had feared that I was just crazy and overreacting about how restless she was and maybe it was normal for kids to be that restless.  The nurse reassured me that she had seen many a kid come in, first children in particular, with parents that were super worried about how restless their kids were and when she watched them during the night they were so calm.  Her restlessness will hopefully be nothing to worry about, but Daddy and I just want to be certain of that.

Sweet Pea was REALLY good as they were taking off the sensors.  The tape that was in her hair and had gotten quite tangled didn't even make her fuss.  The only part that she cried about was the tape that held the nasal cannula in.  When the nurse ripped that off she lost it!  I don't blame her either!  The nurse had to put extra tape on it during the night because Sweet Pea had pulled it off.  Now there are broken blood vessels on Sweet Pea's cheeks that mark where some of the tape was.

All in all it was a good night and I'm glad to have it behind us.  It will be 2-3 weeks until the report is ready and it will be sent to our ENT.  I need to ensure that our next appointment with our ENT is after it should be ready so that I get the details in person.

And for those of you wondering how it is that I am writing this posting since I should be in an IEP training...we got home about 6:45am and by 7am I was in bed with Daddy taking over care of Sweet Pea for what I thought was going to be 45 minutes before I had to get up and get ready to head out to the training.  When 7:45am came and Daddy brought Sweet Pea in the room I thought it was to wake me up.  Turns out that we had received a call from the lady conducting the training and she had come down with the flu and needed to postpone it until the 22nd and wanted to confirm that was alright with me.  Absolutely!!!!  So, I got to sleep for just under 3 hours instead of 45 minutes and now I will get to go to a friend's first birthday party with Daddy and Sweet Pea this afternoon.  It's looking like a good day!