Ectrodactyly

We haven't yet mentioned it on the blog, but Rua was born with a condition called ectrodactyly. It's a rare condition, happening in just about 1 in 90,000 babies. We don't have many specifics yet, as we are still waiting to meet with an orthopedic specialist to learn more about Rua's individual case. Here is an email Eric sent out to family on October 9, a few days after she was born (the pictures are all from those first few days too).   

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We thought it would be nice to send out an update on Rua. She is wonderfully healthy, and checked out well by both the pediatrician and the nurse home visit this week. So far she has astounded us with her ability to sleep and her calmness when awake. It is nice, and we are crossing our fingers that it doesn't change (not that we don't like the fussy babies too). 

She was tongue-tied when born, but thankfully we were able to identify it immediately, and the pediatrician clipped it on Monday (the day after she was born). Her nursing seems to be improved already, and hopefully it keeps getting better.

Rua was born with a condition called ectrodactyly (in my Sunday email I called it syndactyly, which is more common and different). Only 1 in about 90,000 babies are born with ectrodactyly, and it is most commonly hereditary but we don't know of anyone in our family that has it. In Rua, it affects both of her hands and both her feet. We've attached pictures for you to see. Rua's right hand and right foot appear to be classic ectrodactyly, where her right hand is missing two of the middle fingers, and her right foot is missing the three middle toes. Ectrodactyly is also sometimes called split hand foot malformation (SHFM). Her left hand appears to have all five fingers, but the thumb and index finger are fused all the way to the tip and the ring finger and pinky are partially fused. Her left foot also appears to maybe have all five toes but the three middle may be fused together. The malformation happens at 6-7 weeks gestation when the fingers are supposed to form but in some cases don't.

We don't have a lot of information right now, but we'll be meeting with an orthopedic specialist in the coming weeks and probably also a geneticist to learn more about it. They'll do x-rays to look at the bone structure, and also probably chromosomal tests to see if it is related to anything else. Right now, from our observation, it appears to only be her hands and feet that are different. We're not sure what this means down the road. Most of the malformation's will probably be with Rua for her entire life, but surgery may be a possibility to correct some of it or increase some functionality depending on what the specialist sees possible.  

Of course, we think she is absolutely adorable and are loving every bit of her. We are very hopeful for her and know she will do great, but we also realize it will be a challenge for both her and us at certain times. We can't wait for you all to meet her, but for now you'll have to be satisfied with pictures. We'll keep you updated as things go along.

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We are still waiting on a couple of things to meet with the specialist, but hopefully we will be able to get an appointment soon so that we can have some idea of what we have ahead of us. But for now, Rua is just a normal, adorable, occasionally fussy baby who we absolutely love.  I don't even remember most of the time that there is anything different about her.  

Halloween fun 2014

Happy Halloween! We had a lot of fun this year with Halloween, mostly because Abby was so excited for it. So I tried to do as much as I could to make it fun for her. Abby was an orange butterfly, per her request, and Rua was a caterpillar. I was hoping to get Abby to choose her own costume so in the weeks leading up to Halloween, I would periodically ask her what she wanted to be. At first I wasn't getting too feasible of answer (ex. 'purple dirt') so when she finally said 'orange butterfly' I was relieved. I made both of their costumes, which was fun. 

So, here is a run-down of everything we did this year for Halloween:

While in Phoenix with cousins Abby made Halloween cookies, went to a party with the cousins, and went to their Trunk or treat.

                           

                           

The day before Halloween, we had a few of her friends over to make Halloween crafts - spider hats, potato pumpkin stamps, and a candy corn paper craft.

                                                   

                               

                                                     

                                                     Yes Rua got one too!

                               

We went to a special Halloween story time in the library. Another excuse to wear her costume!

                               

Abby and Eric decorated our pumpkin. We decided to paint it this year, figured that would be more fun for Abby.

                               

                               

And of course, trick or treating! We went to a neighborhood nearby with some friends. 

 Abby with Remy (or should I say, Raggedy Ann?)

 Abby loved going through her candy haul.  That was almost the funnest part - watching her organize  by type and color. So cute.

Rua - One month

                                                                                                                                 5 November 2014
Dearest Rua,

One month old! The past four weeks have flown by, and each has been so happy. I love having you here with us. You are, thankfully, a pretty happy, mellow baby. I was definitely nervous at the prospect of having another colicy, always crying baby with a toddler to take care of as well.  So it has been a relief to find that you are quite the opposite, happy unless you need something. Thank you!!

You've had a fun first month. Your Dad took off for China when you were just two weeks old, leaving Mom with two kids. So we took off on a road trip to Phoenix, just us three girls. We went to stay with your cousins Nathan and Lizzie. And once again, you proved to be such a sweet baby - sleeping the whole way there and back, waking up only to nurse. It made the 7hr trip much more manageable than I feared it would be. Your cousins loved holding you, and your Aunt Ruth was so wonderful in helping to take care of you and Abby. Abby was in heaven being there. You also got to see your Grandma and Grandpa Hinckley and some more cousins while we were there since they came out for the Phoenix Temple open house. It was fun to have you meet so many of them.

Since we've been home in San Diego we have started to adjust to our new normal of being a family of four. Dad is back full-time at work and we are going day by day here at home. We have started going out more, you've had lots of 'first' outings - to the zoo, to the library for story time, to different parks, grocery shopping with mom. And you are usually so great. Today was your first time at the zoo and you were wide awake for the first hour, wide-eyed, looking around, seeming to take everything in. Abby even picked out a zebra outfit for you which was perfect for the occasion.

Some fun things about you from this past month:

• You rolled over three or four times from your tummy to back while we were in Phoenix. It must have been a fluke (obviously you are way young to be rolling), with you just being in the right position or something, but it was crazy to see it happen multiple times. Hasn't happened since though.
• Your little legs are getting stronger. In the last week or so, you are pushing down on them more when we hold you upright, already starting to try to stand on your feet. 
• You like to track our faces or toys as they move in front of your face.
• You really enjoy tummy time.  

• You are seeming to react more when we talk and play with you. You are starting to make little happy faces at us, those smiles are probably going to start really popping out soon!
• You would really love it if we let you sleep on your tummy. If only we could, night-times would be a lot easier! You do not like to be put down in your crib at night.
• You do seem to be a pretty good sleeper though, at least hopefully you will prove to be.  You only want to nurse a couple times a night. I keep waking up though because you keep making noises and I think you are waking up to nurse, but nope, you don't want it. So you are somewhat of a restless sleeper at night. Hopefully we can get these night down relatively soon. 
• You are starting to blow little bubbles with your mouth. So cute.
• You are great at breastfeeding. You were tongue-tied, just like Abby was. But we caught it right away and then got it fixed the day after you were born (thank goodness!). So after a day and a half of pure torture for your mamma, things quickly improved. And once I healed, it was smooth sailing from there! Yay! So nice to not have that worry this time. 
• Oh, and you had your very first Halloween. You were pretty adorable as a caterpillar (and Abby was a butterfly).

It is an adventure every day around here now that we have you. Some days are good days, some are not so good. But every one of them really is wonderful with you here. Thank you for the happiness you have brought us.

I love you my sweet little girl, my beautiful Rua.

Love, 

Your Mamma

And some more pictures!

Just being cute.

This is in your pack n play. Abby really wanted to lie down in there with you.

Rua Mae - Birth Story

Our beautiful baby girl, Rua Mae, was born Sunday, October 5th at 6:11am. She was born at the birth center and everything went smoothly and relatively quickly. We are so excited that she is here and have been loving the time we've had this past week to get to know her and get used to having one other little person in our house.

If you don't like the details of birth stories, you can stop reading here.:) I had been having contractions off and on for about 3 weeks already, sometimes seeming as though they might be picking up and getting more regular, only to die back off for a while. During this time we were having all those NSTs (non-stress tests) and after each one I kept hoping that she would just come before the next test. I had been so sure that we were going to have a September baby, especially since Abby had come a week before her due date. But I guess these things really are unpredictable... 40 weeks came and went and I was getting discouraged  since we kept having to do these extra tests and as each one came out with perfect results, I felt that we were just racking up extra expenses that we really would rather avoid.

Saturday started out with the same sporadic contractions, but as the day went on, they seemed to be coming more frequently. Around 4pm I started timing them and for an hour they were consistently 6 minutes apart. They weren't strong at all and unless I was paying attention, I could easily forget they were happening. I called the midwife to give them a heads up that the contractions were regular, and she said to keep monitoring them and to let her know if we wanted to come in for her to check us.  Since it was the weekend, no one was at the birth center so she would have to drive out to meet us there - a 20-30 minute drive, so I didn't want to ask her to come unless I was sure it was the real thing. So I kept timing. I took Abby to do a quick last minute shopping run, to get a journal for me to write in for the new baby. The contractions were more like 4-5 minutes apart now, still not strong. But it seemed that this might really be it. So I asked Abby if she wanted to go ahead and make baby sister's birthday cake since she was probably coming out soon. Abby and I had decided a while back that we would make a cake when the baby came, mostly as a labor project for myself and because I knew Abby would love doing it.

So we got all our supplies out to make our amazing chocolate cake (recipe here). It was getting late-ish so we just got the cake mixed up and in the oven before finally putting Abby to bed around 8:30. I finished up the cake and Eric I and worked to get things cleaned up and last minute things put in our bags. The contractions were 3-4 minutes apart around this time, but still not very strong. We talked to our neighbors to make sure they would be ok coming over and sleeping on the couch while Abby slept. I finally called the midwife again around 11pm to let her know that the contractions were 3 minutes apart, wondering if I should come in. She said it was up to me. I felt so unsure since I had been having these contractions for so long, it was hard to me to tell if they were any different, especially since they didn't feel very strong. She said she was meeting another client at the birth center around midnight if we wanted to come and get checked then. So we did that.

The midwife checked me and I was dilated to a 4 and 80% effaced. She said the baby's head was really low down, she could touch if when she reached in to check me. But, she said we were still early enough that we could go home and come back when we felt like we needed to. So home we went. I tried to lie down and sleep but that wasn't happening, the contractions were definitely more intense when I was lying down. So I got up and spent most of the next few hours sitting or leaning on the birth ball, walking around, and trying out different labor positions from my pile of books. I made sure to eat and drink consistently (running out of energy with the long second stage with Abby was just terrible, so I didn't want to repeat that). Eric came out and joined me for most of it, though he was able to get a couple hours of sleep in.

At 2 or 3 am, I get a text from the midwife saying that she was back at the birth center and would be all night, as there was another lady having a baby. This meant I could just come in when I felt like we needed to and not worry about giving a whole 1/2 hour notice.

Finally, around 5am I told Eric that I thought we should probably head in. The contractions were finally getting really intense and I wanted to make sure we got there before I felt like I couldn't move anymore. Our friend came back over and we headed out. That short, 5 minute drive sure felt long with having a couple contractions and not being able to move around. Finally we got there (this was 5:40am) and the midwife was waiting at the door. The other baby was already born so we had her full attention, which was great. We went straight into the room where she checked me again. I was dilated 8cm. Yay, almost there! She said I could head straight into the tub whenever I wanted. The warm water sounded great so I went right in. The atmosphere was wonderful. The lights in the bedroom were dimmed, a fire was going in the fireplace, and candles were lighting up the room where the tub was.

After a couple of terribly intense contractions, the midwife said I could push whenever I felt like it. That first pushing contraction was so painful, I wasn't sure I could do this. All I had in my mind was the 7 hours of pushing I did with Abby and I wasn't sure I could do even a fraction of that time. I kept trying to empty my mind of those thoughts and focus completely on getting this little one out. The burning sensation was so intense as I pushed again, and to my surprise the midwife told me I could reach down and feel my baby. She was crowning already! One more push and her head came out. The relief after her head came out was incredible. I felt like I could relax for a minute. The midwife unwound the cord from her neck and told me I could keep going. A couple more pushes and she was out. She came out with her hand up by her head (the hand that was squeezing on the cord and causing all the trouble with our extra tests!). So Rua came at 6:11, just a half hour after arriving a the birth center!

The midwife brought her right up to my chest and I held her close as they suctioned some fluid out to get her breathing better. After several minutes Eric cut the cord and I pushed the placenta out. What an amazing feeling it is to hold a brand new baby like that. So incredible. Here was our little girl that we had been looking forward to for so many months.

As I held her, I looked down a little more closely in the dim lights and noticed her hand seemed a little different. A moment of worry and fear went through me as I asked the midwife if her hand was ok. The midwife just said, 'We'll talk about that later. Your baby is just perfect.' She said it so reassuringly and confidently that I tried not to think about it and focus instead on the beautiful moment. (We'll do a follow-up post on her hands and feet). It was incredible to watch as she almost immediately started rooting and moving up my chest before attaching herself to suck and try to start nursing.

After a few minutes Eric took her for some skin to skin time as the midwife helped me out of the tub and over to the bed. Rua came back over to me and I held her and gazed at her as the midwife sewed up my second degree tear and massaged my uterus. (Ouch!) Over the next couple hours, the midwife and nurse were in and out checking on us and taking temperatures, etc. At about 9am, maybe later, the midwife came back to do the newborn exam. Rua weighed in at 6lb 13oz, 19.5 inches long. Not a teeny tiny baby after all! Just perfect.

Our friend brought Abby over around 8am so she could meet her new baby sister. Abby was a little quiet at first but then climbed right up on the bed to be next to mom and baby sister. My parents dropped in around the same time and after about an hour, took Abby back to our place. Eric and I then got to enjoy the next few hours together with our beautiful Rua. We went home around 1pm.

                                 

I am so grateful that everything worked out well, and that our Rua was healthy enough for us to have the birth I wanted not just for me but also for her.

Pregnancy #2 - update continued

So this is a follow-up to my last pregnancy post. (This is kind of long, sorry...)

On Monday we had an appointment at the birth center as well as our first non-stress test (which the doctor had wanted us to do since the baby was measuring small).  The test showed that baby girl's heart rate dropped after one of the contractions, which is called a late deceleration.  Apparently this is a very worrisome thing. So then we were off to have an ultrasound to measure the amniotic fluid, since if it's low, it could be a sign that baby isn't getting enough nutrients/blood through the cord, or that the cord is being compressed which could cause the heart rate to drop.  But the midwife said my fluid looked great.  So then we had to sit and wait while she consulted with the doctor.

After a while, she called us back and told us to head over to the hospital for an extended non-stress test.  She also recommended that perhaps Eric give me a blessing before we went (it's so nice having a Mormon midwife!), which we did. Eric stayed home with Abby so she could get a nap (we had been at the midwife since 8:30am and it was noon by this time), since we figured I would be there for an hour or two.

I checked into triage and they got me all hooked up. I found a chocolate bar in my bag to eat to try and calm my worries. After about an hour, the nurse came back and said that there was another of those variabilities, and that they were going to do an ultrasound to check fluids.  So, for the second time that day, it was off to get an ultrasound.  Once again, my fluids looked great, but the technician mentioned that the cord seemed up high by the head.  After consulting with the doctor, the nurse said that the doctor was worried that the cord might be below the head which would cause a risk of cord prolapse if the head was already engaged (low down) and I went into labor.  So he was going to come assess me after his office hours to see if this was the case.

I asked the nurse how serious this would be, and she said that it would mean a c-section, that day most likely.  That was a big blow for sure, and I just started crying and wishing Eric was there. While I was waiting for the nurse from labor and delivery to come get me, I started doing a little research on cord prolapse, and sure enough it's not a good thing to have and can be very dangerous for the baby. So I started trying to resign myself to the fact that baby might be coming that day by c-section.

I called Eric and told him to start trying to find someone who could help watch Abby so he could come up to the hospital. Then I got picked up by my new nurse and off we went. I was checked into a room and hooked up to an IV and monitors and told I couldn't eat or drink in preparation for the possible c-section. And then I waited. The doctor came at about 5:30pm and Eric (thankfully!) walked in right after him.

The doctor did a quick ultrasound and then told us that, yes the cord looked like it was up near the head but it wasn't below the head so the c-section wouldn't be necessary (sigh of relief!). But then he continued to say that he felt we should start induction right away. He said that since the baby was small and having these heart rate variabilities, we should get her out right away. He gave us the option of breaking my waters or starting the Cytotec. I felt overwhelmed. This was a ton he was throwing at me. I asked him what would happen if we did nothing right now. He said he wouldn't let us leave the hospital without having the baby. I asked if it would be possible to wait overnight to think about it. He said yes, but seemed very upset by this (but I could see the nurse in the background giving me encouraging faces). The doctor then said,'but then you run the chance of something happening in the middle of the night and us having to do an emergency c-section.' I felt like he was really pressuring me and I did not feel comfortable with him at all. He left so we could think it over for a couple minutes.

After he left, the nurse told me that in the few hours since I had been admitted, the baby's heartbeat had looked great, and that it was perfectly ok for me to ask to wait overnight. She also said that we could always ask for another opinion if we weren't comfortable. She had told me earlier that they had offered to the doctor to have a specialist come and do an in-depth ultrasound and he had declined this, saying he could do it himself. He did do an ultrasound but just a real quick one, with no measurements. So she said that we could always request that this ultrasound be done so the baby could be more carefully measured to see how small she is.

Can I just say how wonderful the nurses we had were? I felt like they were being our advocates the entire time, and helping us know what we could ask and that we did have other options. It was so helpful and relieving.

So when the doctor came back we told him that we would like to wait til the morning and also that we would like to have the perinatologist come do the ultrasound. He again did not seem happy but said he would so see if there was still one at the hospital. After he left, the nurse told us that she felt we made the right decision, that from her observations, we didn't need to rush into an induction quite yet.

A little while later the perinatalogist showed up. He was so great! Eric and I both said after he left that we wished he could be our doctor. He was so calm and personable, I felt very comfortable and trusting in his opinion, something I wasn't feeling with our own doctor. So he started up the ultrasound and doing the measurements, talking to us and making jokes the entire time, completely putting us at ease.

And the results? He said our little girl looked beautiful. She is small, but not too small. He measured her at 16th percentile (10th is where the worry starts). He said the blood flow through the cord was perfect, and the fluid levels were great. He turned to us and said that he knew why we were having those decelerations - the cord was around her neck. That didn't sound good! But then he continued to say that it was very loose around her neck, more like a loose necklace and that this is actually very common. He said you don't need to worry unless it is 3-4 times around, and that with how it is, 99% of the time there is no problem. He said he didn't see any reason why we needed to be induced or why we couldn't have the baby at the birth center. (!!)

Wow.That was completely unexpected! He said he would share his results with the doctor on call for our doctor. So again we waited. Soon the nurse came in with the news - no induction needed, but the doctor wanted us to stay overnight for monitoring. If everything looked good, we would be headed home in the morning. Yay!

By this point my parents were already almost there, which I felt really bad about. But they came anyways. We also had our friends bring Abby up to us to be with us until my parents came, which was great. Abby loved being there with us and it was so great to be with her. She thought our hospital room was just awesome.

After a terribly uncomfortable night, we met with our doctor again, who was back in the hospital.  I was a little nervous, hoping he would go with what the doctor on call had decided. He came in and said, 'looks like we don't need to do an induction!' Good, good. He then told us that he thought that we should transfer care over to him and plan on having the baby at the hospital. I was a little surprised and mentioned that the perinatalogist had said it should be fine to go back to the birth center. He then said that there was a 1% chance, with having the cord around the neck, that something could go wrong. I asked if we had an option, if we could talk with the birth center. He said, yes it was up to us and the birth center but that his recommendation stayed the same.  He seemed very confident that the birth center would stand by his recommendations.

Of course we were so happy that everything was fine with baby! What a relief! And for now, the birth center has approved me coming back to them, as long as I continue the biweekly non-stress tests. Which we have had two of. And so far, things look great!

Baby girl #2 quilt finished!

I knew I wanted to make something special for this little girl and decided to tackle a quilt again.  I made sure to pick one that seemed simple-ish and straight forward since Abby's was super difficult. It still ended up being very time intensive but I really love how it turned out. 

I wanted to go with a different color scheme than pinks and girly colors. So I chose blues and yellows - cotton on one side and soft minky fabric on the back. The chevron pattern was inspired by my sister in law, Lindsay's beautiful quilt that she made for Danny, her newest little guy. I used this tutorial for the quilt.

Some projects

Update: I added links to the tutorials and patterns that I used. Forgot to do that. 

I have been sewing up a storm this past while.  Which is silly since I don't even like sewing that much.  If our friends would stop having babies all at once, I wouldn't be doing any of this. I love the idea of homemade things, and the huge cost savings is attractive too, so I keep sewing....

Here are some things I have made recently.

 My favorite - teeny tiny baby girl skirts.  Love these!  Made some for all the baby girls coming along.  Also made three for our own little girl. Can't wait to dress her in these.  And matching headbands too!  Abby even got to have one skirt of her own to match baby sister.

Here's the link for the skirt tutorial and where I got the headbands from.

Sensory balls and taggies blankets.  For the baby boys, and for my little girl too. Minky fabric on one side of the blanket, with cotton or fleece on the other with lots of ribbon to grab.  The balls have a ball in the middle. Did not follow tutorials for these.  I glanced at a few for the taggies blankets, but mostly just winged it. The ball I based off one I got from my good friend Heidi.  I did find a pattern for the ball here, and then added the ball and ribbon.

(These are for our baby girl.  They match her quilt!)

Sleep sacks.  The biggest cost savings here since I got the fleece on a crazy sale, but the most time intensive for sure. Did not have one bit of fun making these. These were for two special baby boys of close friends.

Followed this tutorial from Make it &Love it.

Apron.  Not for a baby, but for Abby.  It was supposed to be a birthday present but now I think it will be a post new baby present.  There will be a matching one for me when I get around to it.

This apron pattern is great because the neck is stretchy and the waist strap is velcro so she can put in on by herself. Here is the link to the pattern.

Baby quilt.  Yes, I finally finished baby girl's quilt.  And I just love how it turned out.  But I think that it will get it's own post full of pictures. ;)

In progress:
Blessing dress for baby girl.  Clothes intimidate me, so this will be a super simple peasant dress made of pink satin.  Am attempting matching tiny shoes.  Will see how this goes.

This has felt like so much, mostly because I've been making multiples of each.  It has been seemingly neverending.  Why 10+ people had to get pregnant in our ward I the same time, I don't know.