Wednesday, June 30, 2010

Today has been a good day from start to finish. It started with Adam using the toilet instead of his diaper for the first time and ended with him sleeping in his big boy bed...something he hasn't done in months! In between those two events, I felt like I was able to juggle all of my responsibilities and manage life as a mother of two. I read books to Adam and watched him color while nursing Levi. I took Adam outside and carried Levi in the Moby wrap (I'll try to get a picture of that soon). We even played in the sprinkler (with the baby monitor close-by) during one of Levi's naps. I have been worried about how to make sure Adam gets the attention he needs, especially when Levi needs to eat, but it all seems to be working out well. I know we'll have our good days and our bad days, but I just feel so good about it all today.

So after Adam used the bathroom, I gave him a plastic gold medal to wear around his neck and a whistle. We've been working with him to blow his nose, and that must have been what he was thinking about when I told him to blow it b/c he held the whistle to his nose and actually blew the whistle with his nostrils!! A moment good enough for America's Funniest Home videos! He is something else!

Monday, June 28, 2010

If you're wondering about why the blog keeps changing in appearance, I am working to change the layout of the blog and upload larger photographs. I haven't had time to finish figuring it out, but I am not going to bed tonight until I am done with my writing project for work. I will reward myself with some time to play on the blog. Check back soon to see if I figured it out!

Levi turned one month old yesterday so I did his first picture with the big bear. I took Adam's picture with this big stuffed bear every month through his first year and hope to do the same with Levi.

Friday, June 25, 2010

Levi's evaluation with First Steps went so well today. I can hardly believe I was nervous about these lovely, caring, professional people coming into my home to see what they can do for my sweet baby boy. One of the ladies has an 11 year old with cebral palsy and is still doing therapies with her daughter, so she has great parental insight and made me feel very confident in her sincerity and interest in Levi. Little man slept the whole time they were here, so there were a few things they weren't able to observe about him. They mainly asked us questions about his motor development and got all the paperwork filled out. We will meet again in a week to see what they came up with and work with them set goals for Levi. They were great at listening to our concerns and answering questions. We mainly wanted to be sure that we can get him what we want him to have, not the minimum that he qualifies for. I was concerned that if he met minimal goals that they wouldn't do more with him, but they said WE can set his goals and those are the things we will get help with. Music to this mama's ears!

Adam chomped on his finger or a teether most of the day, had a drippy nose, and was not his typically happy self. A whiney "Mommy, hold you...Mommy, hold you" was his anthem for the day.

Both boys are sleeping right now, and I have 2 hours until Levi needs to nurse again. I am gonna spend a little time with hubby and get more done on my project for work. Then time for some shut-eye.

Connie is spending the night again, and I am so grateful. This morning I was up at 6am after feeding the baby, Adam was rustling around, and she whispered to me, "Get some rest." I went back to bed, closed my eyes, and suddenly it was 8:30am! Those few hours have meant the world to my sanity lately, but I have got to suck it up and get my act together. I haven't had to face the reality of having a toddler and new baby b/c of the wonderful help we've had since Levi was born, and I feel lazy & spoiled. I will soak in every moment of extra sleep I can get tomorrow before she goes home and hopefully draw strength in the coming days by knowing that I didn't have to start this new chapter of motherhood as early as I should have. I got an extension by having another mommy in the house to help out while Wes was at work this summer.

Thursday, June 24, 2010

My main goal today was to make progress on a project for work, and since Connie is here to help out, I was also able to take Adam swimming for a few minutes. What's even better than having a pool?...Having friends that have pools! (Thanks, Brooke!) Of course it started to thunder just when he was getting comfortable in the water, but we still had a good time together.

Levi is 4 weeks old today. That is hard to believe. I find myself hanging on to him and snuggling more than I did with Adam. I was very determined to make sure Adam slept in his own bed, and I was a spaz about not letting him fall asleep while being held or even when he was in his swing b/c I didn't want to have to rock him to sleep or have him sleep in our bed with us. It paid off b/c Adam is so easy to deal with at bedtime and naptime now. It is just funny that I am not that way at all with Levi. I am all too aware that he will grow so fast and be a big boy in no time. I want to soak in every moment of babyhood before it is gone. Of course, now I am listening to him cry through the baby monitor b/c no one is holding him. (Yes, I stopped typing to go check on him :) He is starting to wind down now. Hopefully he will be asleep soon so I can get some rest, too.

The past month sure has flown by, and I think Levi is already starting to change our world for the better. He has already brought us closer to friends and family. We appreciate so much the visits from friends and the help so many people have given us. Just having someone to play with Adam, take him to the library, or get him breakfast so I can rest makes a huge difference in my day and gives me some time to think. Without support like that, I would be so overwhelmed and exhausted right now.

I stretched out Levi's night time feedings last night. He has gained plenty of weight, and the doctor said once he started gaining, he'd be able to hold his own and would be fine. I didn't let him go more than 4 and a half hours between feedings since it was the first night. He also took a bottle for the first time today. I'm sure that sounds surprising from someone so determined to breastfeed, but he needs to be able to take a bottle when I travel to do seminars, and I will be speaking in Lexington in 3 weeks. I am glad my first trip won't be far from home, but he will still have to take several bottles while I'm gone. We gave Adam one bottle every week to get him used to it and to make sure he could transition back and forth. He did great. Hopefully Levi will do the same. Connie said he took the bottle like he did that all the time, and he nursed well at all of his feedings. I am still frustrated that I can't throw that shield out the window, but he does go without it some every day.

I need to stop writing and get some sleep! I will post more tomorrow! By the way, Levi is sleeping quietly now.

Tomorrow is our big day. At 2 o'clock First Steps will be here to evaluate Levi and get us started in the world of therapies.

Meredith took this sweet picture of Adam holding Levi's hand the other day when we were in the car. Priceless!

Wednesday, June 23, 2010

I was able to weigh Levi today (a friend who works at the health dept. met me up there to use the baby scale), and he was 7 lbs. 3.5 oz. I am so happy to know he is gaining well! What a relief! He was a little over 22 inches long.

Levi had a rough day yesterday. He seemed to have a tummy ache and was difficult to soothe for a good part of the day. He did great last night though, which I was very thankful for. Today he had his first bath and seemed to like it just fine. Right now he is enjoying his swing and trying to decide if he wants to fall asleep or not.

Adam spent the night with his Grams & Grandpa last night. I was super exhausted, and Wes had to go to Cincinnati for a principal's meeting, so my in-laws came to the rescue after lunch. Adam didn't look back on his way out the door and was ready for another adventure at their house. He was really working to put words into sentences while talking yesterday. He even said, "Scuse me please" when he wanted to squeeze past me once. He was wanting me to feed him rather than use his own spoon at breakfast and said, "Mommy, do it?" So we're going backwards on feeding and moving forward in speech. I guess I'll take what I can get!

Monday, June 21, 2010

Happy first day of summer. Levi & I just got back from our nightly walk. I guess can make it sound like it is routine for us, since we've gone 3 nights in a row.

Little man has been eating pretty well lately and hasn't even had to use the shield for a few nursing sessions, which is great progress. I am reluctantly letting him use a pacifier. He really seems to need one right now. I did some reading and found that it uses muscles other than what are already used for nursing, so it can actually be good for him. He has nursed well since using it, and I consulted with a friend who is a speech pathologist who agreed that it could be a good thing if used on a short term basis. Adam never wanted one and could never keep one in, which was fine with me b/c I am just not that big on pacis.

Adam has been a hoot lately. When I was changing his diaper before his nap, I was telling him it was time for him to lay down, & he closed his eyes and went, "Konk-shoo...konk-shoo" like he was snoring! We ran to Lexington today to get a few items returned, and he held Levi's hand most of the time we where in the car. Meredith & Bri came along since I can't have Levi exposed to public places yet. Mer would sit in the car with Levi listening to a favorite CD while the rest of us went into the stores. They are such sweet, helpful girls, and I love being around them. They are so good with Adam, too.

Wes has been super-helpful with the boys and around the house. I have been better about asking for help, which is what the problem usually is. He is always happy to help. I just forget to ask and try to do everything myself b/c I'd like to do everything myself if I could. It is a matter of facing the fact that I CAN'T do it all that changes things and takes a load off of my shoulders.

I forgot to follow up on my progress with First Steps (the state program that will provide therapies for Levi). The woman that called back was super nice. She took my information and had someone call me to set up a home visit. They will be here Friday. I am so happy to get started early for his sake. I am just afraid it will be emotional for me. I have been doing great but don't think it will feel good opening that door. So far I've been able to enjoy his beauty and sweetness without confronting the challenges.

Saturday, June 19, 2010

I took Levi for a walk tonight and enjoyed it so much. Adam had already gone to bed & Wes laid down early b/c of a headache. I put Levi in the Moby wrap & put the dog on her leash. We walked about 30 minutes. I loved having that little boy so close to me as I walked through the neighborhood watching the sun go down. All through the day, I wonder what he will be like as he grows. I am certain he will bring lots of laughter and fun our way.

Can anyone tell me the secret to being able to post comments? I have had a few people unable to post and wondered if there is something I need to tell them to do differently. Let me know...and thanks so much for taking time to read the blog. It means a lot to me!

Friday, June 18, 2010

I haven't had time to do much posting lately. I am working to give Adam as much one-on-one time as possible and resting when I can. Levi is already blessing us with new friends, and we had a wonderful time meeting a new family today. I had a good check-up with my doctor and got the okay to start using the jogging stroller (whoo hoo!).

Aunt Tammi got some great family pics for us tonight. I enjoyed cropping them and looking closely at each one. I am so thankful to have some nice photos of all of us together.

I have lots I want to say but need to feed Levi again and get some shut-eye. Let me just say that I am happy and blessed with a sweet family and look forward to all that's ahead of us.

Monday, June 14, 2010

We have had an uneventful couple of days around here. Besides nursing baby every 3 hours around the clock and keeping a toddler under control, I'd say things have been pretty normal. :) We've had some friends visit, some meals brought over, and some phone calls with special people who mean a lot to us, and lots of hugs and kisses and snuggles with two very important little boys.

Aunt Tammi is visiting for the week, and we love it when Aunt Tammi is here. She is so great with Adam, looks for ways to help around the house, & gives great advice, too. I am so lucky to have her & my mother-in-law helping so much when I need them. I joked with Connie (my mohter-in-law) the other day that if she would continue keeping my kitchen looking so nice, I'd just keep having grandbabies for her!

I called "First Steps" today to get started on whatever therapies Levi may need and was told that it is probably too early to start because Levi is so young and that someone will be calling me back. I was warned that this would happen and am preparing for what to say when my phone call is returned. The program is free of charge and is through the state, but it sounds like I will have to really push to get Levi's needs met. I was prepared to be an advocate for him when he started school. I didn't think I'd have to start fighting for him at 2 weeks of age. The advocacy adventure begins!

I found some neat websites today with fun T-shirts, etc. that say things like "I have designer genes" and "Real friends don't count chromosomes." I got a kick out of looking at them.

Something that people may find interesting is that there is a test that can be done during pregnancy to determine if a genetic disorder is likely. You can have an amniocentesis done between 15-20 weeks of pregnancy. The test increases risk of miscarriage and does not tell you for sure if your child has Down Syndrome or not. It just tells you if it is a possibility. My doctor said that many women have found out that their child MIGHT have a genetic disorder and have worried themselves sick and then had a perfectly healthy child. What amazes me is that 84-91% of women who find out that their child MIGHT have Down Syndrome have an abortion. It is sickening especially b/c many of those people may have had perfectly healthy babies with no genetic problems at all. And I think that those who did have babies with Down Syndrome missed out on the life lessons that child would have taught them (lessons that they obviously needed to learn if they were that petty and selfish).

I opted out of the testing during both of my pregnancies b/c we knew that we would never even consider terminating a pregnancy, but I can see now the benefit of finding out ahead of time just to prepare yourself for the possibility. It was such a shock to deliver this baby and immediately think that something wasn't right. It was hard to hear the pediatrician tell us a few hours later that he thought Levi might have DS. It was hard waiting to find out what the test results were. I don't know if it would've been better to know about the likelihood ahead of time or not. I just wonder...

Friday, June 11, 2010

Levi had to have blood taken again today at the doctor's office b/c his thyroid numbers were off, but the doctor said it is common & just needed to be checked again. I've read that it is also common for people with DS to have thyroid problems, but I am trying not to worry.

The good news is that Levi did gain some weight. He is now 6 lbs 10 oz (still not up to his birth weight of 6 lbs 13 oz), so he is gaining a little over half an ounce a day. The bad news is that we still have to give him formula twice a day. I am just sad that my breast milk isn't enough for him right now. Our next appt. is July 22. Hopefully at that point I can just nurse him from then on out.

On the way home from Lexington, Adam quietly reached over to hold his baby brother's hand and didn't let go until we got home. How precious is that?!

Thursday, June 10, 2010

So, what do you know about Down Syndrome? Not much? Me either. Here are some basics from the National Down Syndrome Society (taken from

"• Down syndrome is usually caused by an error in cell division called "nondisjunction." Nondisjunction results in an embryo with three copies of chromosome 21 instead of the usual two. Prior to or at conception, a pair of 21st chromosomes in either the sperm or the egg fails to separate. As the embryo develops, the extra chromosome is replicated in every cell of the body. This type of Down syndrome, which accounts for 95% of cases, is called Trisomy 21.

• Down syndrome is the most commonly occurring chromosomal condition. One in every 733 babies is born with Down syndrome.

• Down syndrome occurs in people of all races and economic levels.

• The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.

• People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.

• A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.

• Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.

• All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.

It should be referred to as Down syndrome, rather than Down’s syndrome. While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage in the United States is Down syndrome. This is because an “apostrophe s” connotes ownership or possession. Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it."

So there you have it, Down Syndrome 101. I will share more with you as I learn more myself.

I got in touch with a parent from the Down Syndrome Association of Central Kentucky today. She has a 4 year old girl with DS who is already reading! I am going to meet her at her house next Friday. We had a great talk, and I am looking forward to our visit next week. She gave me some leads to get started with physical and occupational therapy through a state program that Levi automatically qualifies for and has given me insight on how to go about getting EARLY intervention started and fighting any suggestions of waiting until he is older to get started. I am already thankful for our friendship and her support. I look forward to meeting the other parents in the group, too. Monthly meeting start again in September, but they will have some other functions this summer. There is a picnic this Sat. but we aren't supposed to have Levi out and about yet. Too bad we'll miss it, but there will be plenty more activities to attend in the future.

Adam is spending the night with Grams and Grandpa tonight. I felt so bad about him leaving b/c I feel like I can't give him the attention he needs right now, but he had a blast and was happy to leave us to go see his beloved Grandpa. Before Connie was even ready to leave, he was walking around the house, waving both hands in the air, saying " you" to me & Wes. He was ready to go! I am so glad he has such a great relationship with them and has bonded so well. It is good for him, for them, and at times like this, it is good for us, too!


Wednesday, June 9, 2010

It's a rainy day, so I brought out some of Adam's toys that he hasn't seen in awhile. We've been playing cars and coloring with Grams. Adam even decorated the envelopes of our thank you notes with beautiful, colorful swirls. Grams & I got some pics taken before nap time. Whoo hoo!

Tuesday, June 8, 2010

Levi slept well and was more alert during the day today. Hopefully that will continue. I am pretty tired because I am supposed to wake him up every 3 hours even at night to feed him until he gains weight. I had only been letting him go 4 hours, but what a difference it made. I feel super tired today, even though I got to go back to bed after his 6 am feeding b/c Connie was here to help with Adam.

Adam has been doing well with all the change in his life but was acting out a bit today. He is learning when my hands are too full to follow through. It is upsetting because he has always been so obedient and happy to help. Today he didn't even want to clean up, which is not like him at all. Ahhh...the adventures of being a mother of two. I will get used to it and learn what works for him. He just caught me off guard today, and I was tired. He was tired, too. He took an early morning nap, slept well at his afternoon nap, but still went to bed early and fell right to sleep. I think I will get up with him tomorrow to spend time with him and nap while he is asleep so we can start the day with some positive attention for him.

I have been feeling pretty good mentally and haven't cried once since we found out Levi's test results, but I go back and forth in my thoughts. Yesterday I kept thinking about how special Levi will be to us and what fun we will have as a family. I saw him as a wonderful gift. Today for some reason, I keep wondering, "Why me? If only 1 out of 800 or so babies are born with DS, why me? Did I do something wrong?" I know it is illogical, and that I didn't do anything wrong, but keep wrestling with the thought. I do need some rest. Hopefully that will help me chase away these negative feelings... that and some snuggles with the tiny little life that I have been entrusted with.

We are looking into the Down Syndrome Association of Central Kentucky's parent groups. There is a group for parents of 0-5 year olds that meets monthly. I sent an email to get details. I think it would be great to meet some families and make some friends that also have children with DS. Siblings are welcome and they provide child care during the meetings. Of course, we can't take Levi for awhile, but it should be fun. They even have groups for siblings, which might be a great thing for Adam when he is older. I feel ready to take the plunge and get plugged in to the Down Syndrome community. I want to give Levi the best care he can get & show the world how cool he is going to be!

Monday, June 7, 2010

Levi didn't have to get a blood test today for jaundice b/c he was doing so much better that the doctor could literally see it in his more yellow in the whites of his eyes. The bad news is that he only gained one ounce since our last appt. I now have to give him the high calorie formula through a syringe for 2 feedings each day. We are using the syringe to make sure Levi will still nurse. It is easier to drink from a bottle, and a lot of babies don't go back to nursing after taking a bottle at such a young age. I've read online that many babies with Down Syndrome are "lazy nursers" anyway, so I don't want to take the chance, and the doctor seems to agree. We see the doctor again on Friday to see if Levi gains any more weight. The doctor said he is just burning all the calories he takes in while nursing, which makes this mama sad, but we will get there. Once he starts gaining some weight, everything should be fine & we won't have to do all these crazy feedings. I will be so happy to get there and be able to provide him with what he needs just by nursing him.

I asked how long before we should take Levi out and about & when we could bring him to church. Two months was the answer. A little longer than what I'd hoped to hear, but good advice that is worth taking for sure.

The back yard is full of fireflies softly floating all around. I love summer nights and look forward to many fun times with my boys out in that yard.

Got some pics of big brother lovin' on little brother yesterday. Too sweet!

Sunday, June 6, 2010

Levi had another good night, and I am feeling pretty good today. I even plan to go to worship tonight. Adam & Wes went this morning. A friend will pick us up, and Adam & I will go tonight while Daddy & Baby Levi stay at home together.

Levi hasn't been nursing well at his late morning and early afternoon feedings, but he does great the other times. I think he is just sleepy that time of day, but I do everything I can think of to wake him...even torturing him by wiping his back with a cold wet wipe. It took an hour, but I got him to nurse for a total of 25 minutes. I changed his diaper to help wake him up today and told him, "Now don't you poop. Mama just put a clean diaper on you." (He is already notorious for going through 2 or 3 diapers at a time b/c he likes to go as soon as you get a clean diaper on him.) So, he obeyed & didn't poop, instead he immediately peed big time. The puddle underneath him was as big as his body! Hilarious!

Wes said people at church were asking if the baby is okay. He just says, "Yes" with a smile. I said, "Well, you may want to clarify." People knew about the chromosome test & I'm sure that is what they were asking about. Wes just smiled and said he didn't need to say anything more because "He IS okay." I love that man!

Saturday, June 5, 2010

Last night was Levi's best yet. He ate well and went 4 hours between feedings, so I got 3 hours of sleep in a row...two times!! I actually woke up feeling a little rested.

Today Levi got to meet his aunts and uncles on Wes' side of the family. We had a great time together. Adam loved having a big audience to entertain. I am so grateful to be a part of such a great family. It feels like we are friends more than relatives, and that is something to be very thankful for.

Connie (Wes') mom has been such a huge help to us. She was here with us the days leading up to Levi's birth to help out and to care for Adam (knowing that Wes & I could be running up to the hospital at any moment). She & Randy cared for Adam while we were in the hospital, and she was here up until yesterday helping out around the house and caring for Adam while Wes & I got back on our feet. I am so blessed to have her for a mother-in-law.

Yesterday, we had several guests and another yummy dinner brought in for us. Friends from church are bringing something every other day for a little while. It is so wonderful to have a break from cooking while I get rested up.

I am really looking forward to having some energy and feeling like I can handle my daily responsibilities again. I am anxious to start exercising & especially can't wait to use the double-jogging stroller! Just being able to pick Adam up again will be great. He is so sweet to use his step stool to do things now. He likes to take it in to Levi's room to check on his baby brother in the crib since I can't lift him up to see in. He saw Levi's belly button yesterday and got really upset b/c it looks like it hurts. He also freaked out when he saw Levi nursing. He was pretty worried about his mama when he saw that!!

Thursday, June 3, 2010

At Levi's doctor's appt. we found out that his weight was the same (6 lbs 9oz) and his bilirubin went down, but still isn't low enough. I will have to supplement his feedings with a high calorie formula, and we will check his numbers again at an appt. on Monday.

The doctor also told us that the chromosome test came back. Levi does have Down's Syndrome.

We went to the hospital from the doctor's office to get an ECHO cardiogram. He said that the technician wouldn't really be able to tell us much, but that if she called in a cardiologist, that would be a bad sign. The technician was so kind and thoughtful. She said, "I'm a mom, too." She kept telling us how good things looked. We gave her permission to have a student observe, which was cool for us b/c she went into detail telling the student what she was looking for and what she saw. No cardiologist was called into the room, and the doctor called us later in the day to confirm that the technician was happy with what she saw and that everything checked out fine. A cardiologist will still have to look over the images and will touch base with our pediatrician later.

We are fine with things and want everyone else to be fine, too. No sympathies or, "I'm sorry"s needed. There is nothing to be sorry about. God has blessed us with a beautiful new baby boy that will bring us lots of laughter & love.

I just ask that everyone try not to say things to make us feel better. That is what is hardest to deal with right now. It makes me feel like people are disappointed with who he is or that we are disappointed. We aren't. Telling us that we are the right people for this to happen to is hard to hear, too. I know people mean well, but I don't want everyone to act differently than they would if we had a baby with perfect health. I remember so many people asking if we wanted a boy or a girl. That conversation usually ends with the phrase, "As long as they're healthy." I often thought, "Well, really that doesn't matter either."

Thought I'd close with the words from a bumper sticker we saw the other day..."My kid has more chromosomes that yours." ;)

Tuesday, June 1, 2010

Levi's bilirubin was up a little today but not enough for treatment. His weight was the same as yesterday & the doctor said that the more his liver processes, the lower his bilirubin count will be. He wants us to offer Levi more milk through a syringe, like we were and feels like things will improve. We go back Thursday. So when he is one week old, he'll be going to his fourth doctor's appt.

There are about 12 pediatricians in the group we go to, and I enjoy seeing different people. All the doctors are very good. We have seen three different doctors the last three days, and 2 of them have said they just don't see it (meaning he doesn't look like he has Downs). It is confusing and I don't know what to think about it...actually I don't really want to think about it. It's all very confusing and once I get thinking about it, I can drive myself crazy looking him over and wondering if this is a sign or that is a sign. The doctor that recommended we get the test said, "In my heart of hearts, I think we need to continue with the testing." Like he was certain. The doctor today really looked Levi over and said he just couldn't see it. So I don't know what to think. I guess I just don't need to think right now and just enjoy each day as it comes.

Levi & Adam are both napping right now. How fantastic is that?!?! Adam was thrilled to see his little brother when he got home today. He showered him with kisses and tried to help me burp him after his feeding. He is already a great big brother, and I am so proud of the loving little boy he has become.

Now it is time for mommy to nap...