Still Waiting and Worried

Our doctor called last night to say that the test results aren't in yet. The hospital didn't think they would even have them by tomorrow...They will most likely be in my MONDAY!! What!?! So we have to keep doing this...

and this...

ughh and this...

I know it is worth it...

But I am so worried. I feel like we are being tortured, and the more I research the more worried I become. There seems to be a lot of conflicting information about Duarte Galactosemia. Children that are perfect, breastfeed and develop great. And some other stories. Some scary stories. With lots of things to worry about and make me cry. Everyone keeps saying not to worry until there is something to worry about. Yeah right. That just seems nearly impossible at this point.

From most of the information I have found, babies eat a half and half diet. Half breast milk and half soy formula. The problem with that is that Ellie hasn't done well on the soy formula. We are actually switching her today to another hypoallergenic formula. She is spitty, gassy, and waking up from her sleep crying in pain from poop and gas. It is literally ripping my heart out to see.

The doctor told me to nurse her today a few times. Whooo Hoooo! He said that she is not going to end up on an all formula diet, so let's just do half and half until we get the results. He said to still say a prayer that we just got two bad tests. But, we need to be prepared for other results as well.
My Mom and I were just talking this morning about testing and information. From what I have been reading there are probably lots of people that are carriers of the Duarte Galactosemia gene, and were probably fussier/spittier babies. But, they just didn't know why. Do we just know too many things now? Is there a possibility of too much information? Last week Ellie was a picture of sunshine. She was so happy and content. She would nurse and take these great naps. Just settle right down and purr herself to sleep. She was growing and I mean growing. If we didn't have this test none of this would be happening. The doctor still really thinks that she will just drink breast milk and need to be monitored.

I have found a few blogs about this too. One mom has three children that have Duarte Galactosemia. They are great. They are perfect kids. She only had one little post about it. She said that she has it too. It isn't a big deal. Then you read some other things that are much more concerning. Children that have a hard time in school. Is this really a connection? Or would they have had some of these issues anyway?

I just want an answer for now. Let's just start with an answer. Then let me talk to the doctor and experts about it. Just give us the answer and let this mommy figure it out from there.

Needing Some Prayers for Our Little Girl

This is a tough week in our house. We received one of those phone calls on Monday night that every parent fears. Ellie had a positive on one of the newborn state screening tests a week ago. The doctor said the test is very sensitive to heat and it was most likely a false positive. We repeated the test and I was a bit worried but didn't think too much about it. Monday night he called again to say that the test came back positive a second time. I felt like was going to throw up my dinner. I literally dropped what I was eating and threw the rest away I was so ill.

Both tests have said that Ellie may have an abnormal enzyme in her blood that doesn't allow her to process galactose in milk. The term for this is galactosemia, and I have never heard of it until now. It is only happens in 1 in every 60,000 children, rare, very rare. She doesn't have the classic galactosemia, which is good because that is very serious. But, she may have a lesser version called Duarte Galactosemia. This could effect her in a few different ways, but mostly it would be controlled through her diet. We would have to speak with a genetic/metabolic specialist to discuss how we would proceed with her diet.

She had more blood drawn yesterday at UVA and it was sent directly to the Mayo Clinic. This is the only place in the country that does this test since it is so uncommon. We will not know the results until Friday (hopefully!). For now as a precaution we have been giving her all soy formula and I have been pumping at every feeding.

The frustrating piece is that this test is very sensitive. It is mostly sensitive to heat. When it was initially mailed in when she came home, it was 90 degrees here. So, we got a letter saying that there were a number of false positives in the state that week. That they believed our baby to be normal, just repeat the test. In general the test has a 40% false positive rate. So, my prayer is that we randomly had a bad test and now another false positive.

Our doctor keeps saying too, that Ellie is doing wonderfully and isn't presenting any signs to be worried. She is growing like crazy. At her last appointment she had gained 9 oz in less than a week. So, she isn't showing us that breast milk is an issue. Once we looked up information on this, we found a list of lactose amounts. Breast milk has 100 times more lactose than cows milk. Wow! I can't believe that something would be wrong and all she has been having is breast milk. It is all just very confusing. She could just have less of the enzyme, but still able to drink milk and go on with a normal life. There are so many different outcomes. For now we just have to wait. Again.

I am so worried.
I am exhausted.
I am scared.
Chris and I had a good cry about it all last night.

Watching your baby get blood drawn is horrible. After two techs and three tries they were finally successful. I was a puddle of tears, and I just can't stand to see this poor baby endure anything else. I am done with all of it. I just want to enjoy life and our new family of four. I feel like we are being punished in some way, and it just doesn't seem fair. Now we have a few more days to be filled with worry.

One Month Ago...

One month ago you came into this world, and changed our lives forever. You turned our little family upside down with worry and fear. You made me realize how scary and out of control parenthood can feel, and how wonderful and powerful the love of a mother can be. Sweet Ellie you are such a joy!! It is so amazing to have a little girl in the house. The whole family is so in love with you. I have so many hopes and dreams for you little one. I was just thinking today about playing dress up with you, and watching you take your first dance class. I know that those things will be here soon enough. I keep trying not to get too caught up in the stress of these first few months. They will be gone soon, and I will be missing this little baby girl to nurse throughout the night. You are showing us little pieces of your personality. You are trying so hard to hold up your head and turn it to look for daddy or your brother. You definitely know the sound of their voices! I sing "You are my sunshine" to you at night, because you are! I love you sweet Ellie Clare.

Your brother may be more in love with you than I ever thought possible! He has his moments right now, but when it comes to you he is totally in love! He wants to be a part of everything you do. When we go to your crib, he runs up and climbs on the side to say hello. He watches you get your diaper changed, and even brings diapers to me "just in case she needs it mommy." Bradley will sit on the bed while I feed you, and just plain wants a part of the action! Just for kicks I included a picture below of Bradley elbowing Sammy out of the way of Ellie. It was taken at Sammy's party, and the whole family thought it was hilarious. I don't want him to elbow Sammy, but I know he will be one protective older brother and it makes me smile with joy!

Our family and sweet Sammy too!



"No Sammy this is my sister!"

One month Stats:

I wanted to include some of this just for me to remember!

8 lbs. 11 1/2 oz. (the exact weight of your big brother at birth!)

19 inches long

Ellie is in the 50% for weight and the 3rd% for height...one chubby baby! I don't think we have a feeding problem anymore!

I have started putting her in a size one diaper at night because she is leaking through her newborn diapers! She is feeding every three hours during the day. I still sometimes have to wake her up for some of her feedings during the day. Her wake time at home is only about 45 minutes at the longest. Sometimes before her first nap she can only stay up less than 30 minutes.

I have been working on putting her to bed awake....with some sleep props. I have found she sleeps great in her bouncy seat and her swing (turned off), while swaddled! This totally happened by accident, but one day she was so fussy and I had tried everything. So I swaddled her up and put her in the bouncy seat. As so as I turned around she was fast asleep. I think this is because it keeps her upright and reduces spit-up etc. If we are at home, after about 45 minutes or when she seems drowsy I wrap her up and put her in her bouncy seat with the vibration on. If I time it right she will fall asleep without any crying. But, usually she will fuss a little bit before nodding off. I feel like I am doing much better with scheduling with Ellie. At this point with Bradley I was still feeding him constantly, and then nursing him down to sleep. I held him ALL of the time. I remember watching hours of TV while he slept in my arms. When it was finally time to get on a schedule he was a total mess, and it took us a while (and a LOT of crying). We had so many things to break...nursing to sleep, rocking to sleep, and just plain learning to sleep in the crib. I hope she is learning to self-soothe with a little help from the bouncy seat.

The evening time is when things get a bit tricky. She usually feeds around seven. We have started a little bed time routine of bath, a quick massage, and nursing her. Sometimes I can get her down for the night, and other nights are more difficult. More often than not there is quite a bit of fussing from 7-9 or 10 pm. There have been a number of nights when we aren't able to get her back to sleep at all. We have resorted to rocking her for a while, or just letting her be awake while we hold her. Then I will usually try and feed her again at 9 or 9:30 and that will get her to sleep for the night. It is so difficult during those hours though. Bradley is finally in bed, the house is quiet, Chris and I are exhausted, and she is her most difficult. We try to work in shifts of 15 to 20 minutes with her and then switch until it is time to feed again. I am hoping this horrible part will be over in a few more weeks and 7 pm will be her first bedtime, with a dream feed at 10 or so.

Once we get her down for the night she is starting to really figure things out. On a great night (like last night) she only woke up at 2am and then slept until 6:45!! There are other nights where she will be up at 1 am and then 4 and then 7...it varies. I can see the light at the end of the tunnel with night time, and I am hoping by 12 weeks or earlier she will have that part figured out. I can handle fussing during the day as long as we are getting sleep!

Well, that about sums up my feeding, sleeping and nursing schedule. I know it is a lot of details, but I want to look back and remember what worked/didn't work for us! Just in case there is another baby in our future (wink, wink).

Today Is A New Day

Yesterday was a rough day in mommyhood. Thankfully I have an amazing husband that comes home from work early to take the kids on a 'nature' walk. Can you picture Chris tromping around the neighborhood with Ellie in the Eurgo carrier?? Well, he was! I should have snapped a photo, but I didn't have the energy for pictures yesterday. Luckily, today is much smoother. Both children have been great!

Ellie slept for five hours and didn't wake up to eat until 3 am, and was back down until almost 7 am!! I learned my lesson from yesterday, and I put her down for her second nap in her car seat. She slept to and from the little gym without a problem!! Both children were fed and asleep/resting at the same time this afternoon. This mommy is on a roll! I actually ate some lunch in peace and quiet. I know I am going to have to roll with punches these days. Some days will fall together nicely, and other days we will just be off. I am such a routine person, this baby part is hard when there isn't a schedule quite yet. I like to wake up and know what my day is going to be like. Unfortunately three week old babies have other plans!

On to more exciting news....we went to visit our house last weekend!! Of course Chris has been there almost everyday working, and I have been getting updates at home. I was so anxious to get over to see it! The first and second floor were completely framed on Saturday (now the basement and the garage are completed this week). It was so fun to walk through something that Chris and I put together on paper. It is similar to his model, but we have made a lot of changes to the first floor and the bedrooms. Bradley was so much fun while we were there. Even without any walls, just wood, he was able to figure out where everything was. We showed him where his room was and he ran around it so excited!

Here he is on the front porch! It was so weird while we were driving to see the house. I had some vivid memories of going with my Dad to work on our house when I was three years old. My Dad was able to do some work on our childhood home while it was being constructed. I remember going there with him and a pack of bubalicious gum and sitting on the plywood floors while he worked. I wonder if Bradley will remember these moments?!

This is my room mama!

I cannot wait to move in!!

Reality, Just a Dose

As I start the second week with two kiddos by myself, I thought I would just write down some of the things that have posed challenges....

ellie doesn't like to be woken up to go to preschool

next time I am going to nap her in her car seat to avoid 20 minute screaming sessions in the car

I have no patience for bradley when I pick him up from preschool with his 'accident' pants on. then he tells me that ellie goes pee pee in her pants. the teachers say not to worry, it is normal. but, I am super annoyed with him.

there isn't a point of doing on line grocery shopping if the pick-up time hits right when ellie is starving and crying in the car. I should have just shopped on my own. grrrr

bradley watches way more tv right now than I normally allow

getting soaked with spit up down your chest is so disgusting, ewwwww

it seems like I start dinner every night and then ellie is up and hungry. I ate dinner last night while I was nursing her at the same time. that is talent I didn't have with bradley

I just got ellie to sleep and bradley marches in from his room demanding water for his quiet time. grrrr again!!

just a dose of reality! everything seems harder when you are tired, right?!

good thing these kids are cute!!

Rosey

This little girl really makes my heart sing. She is so spunky, fun, and loving. She runs right up to me, "Come Care, Come." When we are on the playground, "No Mommy, Care push me." Her little sentences are so adorable! She has new words every time we see her! I have such a soft place in my heart for this little one. I can vividly remember when she was born, and visiting her in the hospital with Cali.

Look at that little bundle and all of that hair!!

It is amazing how much time and memories have passed between our families. Cali and I have grown so close in the past 3+ years. It is hard to imagine my life without her. She is such a generous and giving friend, and supported me so much in the past month with Ellie's birth and coming home. I hope I can make it up to her some day!

We got to celebrate Amalie's second birthday last weekend (which she shares with my sister...I knew I loved this girl!). It was a gorgeous day, and Amalie Rose was the star!

Singing Happy Birthday!

Waiting on some cake, of course!

Amalie is obsessed with all things "Baby Ellie" right now. She spent part of her birthday parked next to Ellie's stroller just checking her out.

Trying to show me, "I'm two!"

Gotta include the big kids too, and my do they both look big!

Bradley is showing Larken how to play dinosaur. I'm not sure if she is into it!

Easter Bliss or Not?

Just to keep it real...Easter morning was not blissful at all. We were all finally home, but worried about little Ellie gaining weight. Each feeding was taking forever, and Chris and I were pretty exhausted. We woke up Easter morning very excited to see Bradley find all of his eggs and go through all of his Easter basket. We also had our photographer pictures planned for the afternoon, and it was our first full day as a family of four! What more is there to celebrate?

Well, Bradley had other plans for the day. Things were coming to a head with his behavior, and we were in Bradley boot camp to get him back to his normal self. I had laid out this purple shirt and sweater vest that I wanted him to wear...hmmmm it wasn't a hit with Bradley.

We spent 45 minutes and several time outs discussing what was going to be worn on Easter morning. He threw a fit, and I mean crazy fit about the outfit! I felt like so many things were sliding with him. He was confused about all of the changes and people in the house, and was totally taking advantage of the situation. We found that he was bossy, mean, and telling us what to do. So, we laid down the law Easter morning! As you can see Bradley ended up wearing the outfit I had picked for him, but it was not without a fight. Sweet Ellie was listening to the mobile in her crib while her brother brought down the house. Maybe this was the turning point, but it seems like things started to turn around after Easter morning with Bradley. I truly believe that children need/thrive on structure. His life had been a bit of chaos and he was letting us know. Oh, my little head strong boy! Later we were looking at pictures of Easter on the computer and he said, "I told you I didn't want to wear that shirt." It wasn't mean, it was just a statement. I totally wanted to crack up. He sure hadn't forgotten about it! I told him the standard Mommy line, "Sometimes we have to do things we don't want to." Who does that sounds like?

I will always remember our first Easter and holiday as a family of four. But, I also want to remember the 'real' moments too. When things don't go as planned and our children push us to the limit. The rest of the day ended up being lovely, and we got some gorgeous pictures of our family of four. What an adventure parenthood is at times?!

Looking for eggs in his adorable Easter outfit!

Look what the Easter bunny brought us!

Best activity ever! Throwing parachute man off of the deck for hours on end! Great exercise!



Aunt Lindsay and Uncle Tim came over the afternoon to see sweet Ellie! Poor Tim hadn't gotten a chance to even see her yet, except in the nursery at the hospital.

World Wind

It seems that the weeks are flying by now that we are home and are getting settled into life with two kiddos. Or maybe I am just so sleep deprived that the days are all blurring together right now. Ellie is three weeks old, and a little rock star. The doctor came over to check her weight again (yes, he is one of the last doctors to make house calls), and she jumped from her birth weight last Monday, 7 lbs. 2 oz. to 7 lbs. 13 oz. in a weeks time! I was elated! She also stopped wanting the bottle after her feedings, and has just been nursing. That has really cut down on my time spent feeding this little babe!

We have had some REALLY tough nights and some great ones. I guess this is just the unpredictable life with newborns. You know you are tired when you don't clean up any dishes from dinner and go straight to sleep at 7 pm...I did feel somewhat refreshed when she woke me up at 9:30, it is amazing what 2 1/2 hours of sleep will do. I am just looking forward to our first 6 or 7 hour stretch. I will be one happy lady!

I already feel like she is on the go WAY more than Bradley. I don't think I left the house for weeks at a time when he was this age. My first trip out of the house was to the grocery store at about three weeks, and it totally overwhelmed me. This little lady has been to the playground a number of times, the park, preschool, the little gym, explorations studio, birthday parties, my parent's house, and the list goes on. I cringe to think about the time she will be spending in her car seat in the upcoming year. Is this the life of the second child?

Bradley is adjusting really well in the past week now that life has gotten back to normal. In the afternoons I will put Ellie down for her nap and have little play dates with him. Hopscotch is our new favorite game in this house! He even went through the drop off line at preschool this morning for the first time. He was very excited about the whole process! Getting out the car on his own, remembering his back pack, walking in with his teacher instead of Mommy...fun stuff!

I haven't gotten a chance to do a post about Easter or our new house. The second floor is going up as I type this, yipee!! But, I hope to get to that sometime soon...after the baby has been fed, laundry done, wipe containers refilled, trash taken out, being 'at home' is a lot of work! Here are some adorable pictures we took on Easter Sunday just hanging out around the house...

Family!!

Daddy's little girl!

Super yawn! She already looks so much bigger to me!

Dear My Sleeping Beauty

Dear Ellie,

We are so in love with you. Just looking at the pictures of you today, I feel like I have known you all my life. I can't wait for you to grow up into an adorable little girl, and yet I want you to stay this way forever. You are so peaceful and patient. We are tired, like all new parents. But, I am trying so hard to just soak you in. Enjoy the moment. Be thankful for your health. Be thankful for our little family of four at home together.

Your little noises make my heart sing. When you are sleeping soundly you do a little baby purr. It is the cutest thing on the planet. You are showing us little bits of your personality. You have decided you don't like to be swaddled, or bathed, or given a pacifier. You love to be rocked, cuddled, and kissed. When you wake up you do the most elaborate stretching routine I have ever seen. You start with your arms, then you stretch out your legs, and then start the routine again. It goes on for quite some time, and it is the funniest thing.

You love to listen to your big brother when he is around. Every morning he runs into the room and asks, "How is Baby Ellie doing Mommy?" You will forever have someone to watch out for you, beat up bullies, and hold your hand on the way to school. He loves you so much!

These moments pass by so quickly. I know that now from your big brother. I just blinked and he was crawling and then walking and talking. I am trying to kiss you every chance I get, which already feels like too few. I am learning the balance of raising two children. I hope you will understand! I love you so much my sweet Ellie Clare.

Love your mama

These pictures were taken by an amazing local photographer, Amy with Sweet Pea Photography. Here is her blog post about our photo shoot. I don't know how I will ever choose a favorite!!