Saturday in Miami

We finally found some time to get down to the beach for a bit. It is really nice and warm out today. Elijah loves the ocean! It's so cute how he looks around between the water and the sky and the sand and then squeals with delight. He loves the wind on his face. We felt bad bringing him inside but we didn't want him to get too hot. He's definitely not used to sunshine, being a Minnesota baby.

We had to do laundry at the hotel laundry facilities last night because Elijah threw up twice yesterday. We are thinking his molars are coming in and that may be the culprit (we hope). He had flushed cheeks (before we brought him in the sun) earlier today, but wasn't feeling warm. He was also a bit crabby but then we gave him some Tylenol and he immediately perked up. He has been great since and has been playing and chatting on his bed for 30+ minutes now without a single fuss, so who knows?! Let's hope it is just some teeth breaking through!

Right now Elijah is making a sound that reminds me of an owl I always used to hear outside my window when I lived in California. He's doing it over and over and over. So cute.

I LOVE SUNSHINE! I'm not too excited about getting back to the land of ice and snow.


Beautiful boy at the beach!



Yes, he could possibly be mistaken for a girl (and he was today).






Dan took this photo a moment after I dipped Elijah's feet in the ocean. HE HATED IT. Too cold, Mommy.





Perhaps one of the funniest photos ever taken of Elijah. He obviously did not like the sunglasses.





There is a pretty girl sitting to my right and Elijah is doing his usual flirty thing with her. We're in trouble.


Still flirting.


Thoroughly enjoying the hammock!








Abby could use your prayers right now. Colin, too. Thank you!

Sun!

Sun is so wonderful! Even though everyone around here thinks it's "soooo cold," we are in heaven! It's not quite beach weather, though, but it should be by Saturday. Tonight after my conference, I got on the #4 shuttle that said, "To the Holiday Inn," not knowing there were two Holiday Inns and that this particular shuttle would be bringing me to the WRONG ONE. Don't you think this would be a good thing to tell people? That there are two Holiday Inns? And a different shuttle for each? I was so upset! I called Dan practically in tears once I figured it out. I got back to the convention center (where the conference was held) an hour and a half after I had gotten on the shuttle in the first place! I refused to get on another one so I started walking the 25 blocks back to the hotel. I walked through some shady neiborhoods and got whistled at a few times (gross! who does that?). Dan had gotten our car from valet (it takes forever!) and picked me up ten blocks into my walk. Ug. So now I'm sitting here listening to Elijah cry himself to sleep. Everything just feels "off" right now. Hopefully we can get some good sleep and start tomorrow with some good energy.


My sweetie pie sleeping in my arms at the airport


What is this bright thing that's shining light on my face?


What we will be visiting soon!


Aaaawww, happy boy

Miami baby

We made it to Miami! Our flight was uneventful (aside from a little turbulence..ever since I started skydiving, for some reason I just don't like commercial flying as much as I used to. why is that?). It took us a while to get to our hotel because Mommy was a bad navigator. We finally got to our hotel to find out that the ONLY parking is valet and it costs $18/night! WHAT?! The reason we rented a car in the first place was to save $$ on taxis. Ug! Oh well, I guess we have to suck it up.

Elijah was a very good boy all day. I just can't believe what a well-behaved baby we have. I mean, yes, he definitely had his moments on the plane when he was tired, but for the most part? Unbelievably good! He's sleeping right now and Dan and I are getting ready to watch American Idol with a little room service. We are all going to sleep well tonight!

It's "cool" here today (60's! That's HOT to us!) and all the locals are complaining. I think it's supposed to get nicer, so hopefully we can get out to the pool/beach sometime. Tomorrow morning I'll be heading to my day full of conferences that I'm excited about! The boys will be hanging out and getting into trouble without me.

Thanks for checking in! This internet connection is reeeeeeeallllly slow, so I apologize if I don't get a chance to check up on all of my favorite blogs! xoxoxoxo

O2 looks good!

Elijah's sats were at 74% today, so we are happy with this! Off we go to Florida!

Thanks for checking in on us. Have a good week everyone! We'll try to keep up with everyone while we're in FL, but if we don't, please don't be offended!

Check out my sister Lissa's photos from Elijah's birthday party. Hee hee, so cute.

Blue

We had a bit of a scary experience yesterday. I went home for lunch to get some baby lovin' time and after I had fed Elijah some lunch, he started grunting really hard. We have been weaning him off of formula and onto cow's milk, so I think this has his poor little belly a bit upset. He has never had issues with constipation, but now he's working a little extra hard to push things through. So he was pushing and grunting harder than I've ever seen him push and grunt and then he started crying and acting funny. I picked him up and that's when I noticed that his lips looked a little bit blue. I laid him down to see if he had pushed anything out and his face looked really colorless to me. That freaked me out. I scooped him up and took him upstairs and just cuddled with him for a minute to calm him down. Once he was calm, he looked fine and was acting like his perky self again.

I called the Gman and asked him if this was normal. He said that for Elijah, at this point in the game, it isn't unlikely. If he's working REALLY hard or if he gets REALLY mad, these blue spells are possible until he gets his repair. He said he's ok with it happening once, but if it happens twice, we need to move the cath date up. We are going to bring Elijah in for an O2 check this afternoon, and assuming everything is fine with that, then we'll just wait and see what happens and stick with our March 19th cath.

I was a bit on edge yesterday. I even got up in the middle of the night to check on him and I NEVER do that. Surgery is near! I've even been smelling the hospital lately. That sounds so crazy, but I swear it's true! Today I'm feeling better. Elijah is so strong. He's going to be just fine. We'll just have to keep an extra eye on him when he's over-exerting himself in the next few weeks.

Better day!

Ok, so today was a totally different story. Elijah was happy and rested and a total peach for the entire day! He is still drinking a lot less fluid, but I think that's because he's eating more solids. He can eat SO MUCH solid food. He'll just keep going and going. So now we need to find a good balance so he still gets enough liquids. He suddenly just doesn't seem to be interested in his bottle. At all! And he doesn't have the hang of the sippy cup yet, so it's a bit frustrating trying to get liquids in his belly. He just wants to eat all the good stuff!

Thanks for all of your wonderful, encouraging comments. Kathy, you are right. This IS how it goes when babies are in heart failure. For as low as Elijah's sats are, I can't believe he's as "healthy" as he is. We are really very lucky in so many ways. I have no idea why he's not blue! He wasn't blue a year ago, either, when his sats were running between 65% and 69%. Weird!?

I know that if I called the Gman tomorrow, he would tell me, "I expect him to get more tired and to have a general decline in health over the next weeks. See you on March 19th!" So I think I'll hold off on calling unless something drastic happens.

We got out today and went to the Mall of America to have lunch and walk around a bit. I finally used my Christmas money from Dan's parents and bought a $98 pair of jeans! That's totally ridiculous, but Lucky Jeans are just so comfortable and they fit me perfectly. I hadn't bought a new pair of jeans in three years! THAT'S ridiculous. I'm so bad when it comes to buying clothes for myself. Anyway, Elijah was awesome and chilled in his stroller like a good boy. I love how he always puts his arm over the edge and opens his hand like he's feeling the wind move through his fingers.

Oh, have I mentioned that we're going to Florida this week? WE'RE GOING TO FLORIDA THIS WEEK! We leave on Wednesday and get home on Sunday. I'm going to a work conference and my boys are going to come with me! I'm really excited about the conference I'll be attending, and I'm also excited for WARM WEATHER. This has been one of the coldest winters I can remember in the eight years I've lived here. It's been ridiculous! I will have a little bit of free time, so we plan on going to the beach and soaking in the sun. We have to store up for the rest of dreadful winter. I have to say, though, it was actually very nice out today. It was like 20 degrees! It felt like we were in the tropics.

Here are some cute pics I took today.


I know I'm biased, but is that not the most beautiful face you've ever seen?


Mommy didn't comb my crazy hair today!


There's a funny story behind this picture. The red ball Elijah appears to be eating is a birthday gift from Auntie Lissa (which he absolutely LOVES, by the way) that sings the alphabet when you spin it around. So Elijah has these two other little balls that he loves to hold in his hands. If he drops one, he freaks out and picks it up quickly. He doesn't like to be without them, if they are in the vicinity. So he had one ball in each hand, as usual, but also wanted to spin the new cool ball to make it sing. He looked at each hand, looked at the big new fun ball and lowered his head and tried to spin it with his face so he wouldn't have to drop the littler balls out of his hands. I think I laughed for 10 minutes.






LOOK AT THOSE THUNDER THIGHS. I LOVE IT!


Can I bite into those?

Birthday party!

We had our awesome family and friends over for Elijah's birthday party today. We were so happy to see cousins and grandmas and grandpas and aunties. Elijah was an unhappy boy, though. He hasn't been himself today. He wasn't his usual smiley self during the party and has needed LOTS of sleep today. To be honest, I'm worried. I think something is going on. His O2 sats are low and he's drinking (a lot) less and he's much less interactive than he normally is and his personality is different, so I'm worried. I'm going to call Dr. G on Monday morning and see what he thinks. We were happy to have our fabulous family over, though. Thank you for driving to our house! We love you all!!!!

One-year well visit

We took Elijah to his one-year well visit with Dr. Judy today. It went great! Well, aside from the fact that his oxygen sats are even lower than they were last week (they ran between 72-75% today). That's to be expected, though, because he is growing very fast. My mommy intuition tells me that surgery is NEAR. The G-man told us we would schedule surgery when he dips below the 70% mark and he is almost there!

The aching pain in my arm and back is confirmation that we have a chunky monkey. Today Elijah weighed 22 lb. 10 oz. and was 29.5 inches long. He's in the 50th percentile for both! His head circumference is in the 70th percentile! He's awesome!

We are finally able to get rid of one of his nebulizer medications. Now he will only be inhaling Pulmicort twice a day to prevent lung distress. This is wonderful news. And he gets to start drinking yummy cow's milk (thank goodness, SO MUCH CHEAPER) instead of formula.

Dr. Judy told us not to worry AT ALL about his delayed gross motor development. He is making progress and that is all that matters. Who knows how much work it might be for Elijah to get places on his own. We just don't know how hard his little body is working and how yucky it might make him feel to move around a whole bunch (although from his great disposition, you'd never know he felt yucky). His fine motor skills and speech are right on par, so he is doing very well, considering everything he has been through. Oh and his molars are about to break through the gums!

We met some good friends of ours that we haven't seen in a long time at the Bonfire. It was so good to see them! As always, Elijah was a little ham and was incredibly good. What other baby would sit happily in his high chair for two hours, not fussing once, just eating Cheerios and smiling at everyone who walked by? At the end of dinner they brought out a cake for him. He dug his hands in it and licked the frosting in delight. It was really cute. We got some pics of the lunar eclipse! It's so cool that that happened on Elijah's first birthday. Saturday is the big birthday party! Elijah can't wait for more cake!


He likes you, Neal! You're a natural. I wish we could have seen your sweet baby girl last night, too. We miss you!


AAaaww, so cute.


Jon and Anna, the cutest skydiving couple we know. We miss you guys, too!


Anna is sooo pretty!


Fire!


Mmmmmm, frosting so good

Happy birthday, little one

Happy first birthday, Elijah!

Ever since I found out I was pregnant with you, I have kept an Elijah journal (in addition to the journaling I've done on this blog). I try to write in it often, talking about what we've been up to recently and what cute new things you've been doing. One of my favorite entries I made in this journal was the story of your birth. I thought this would be an appropriate entry to share today, exactly one year after you entered this world. I wrote the entry in March of 2007.

I want to thank you for choosing ME as your mama and for being such a good, STRONG, fun boy for us this first year of your life. You amaze me every single day! Hugs and smooches to you, little one. Happy birthday.

Love, Mama


Your birth
3/17/07

Welcome to the world, Elijah Daniel! You were born four weeks premature on February 20, 2007. The day before, it was a Monday, I had a routine appointment with my doctor to check your growth. We did the weekly dreaded ultrasound and saw that you were still growing very slowly in my tummy. The doctor worried us a bit and told us some scary things to possibly be prepared for. When we got home, I couldn't handle the worry anymore and I did a lot of crying. Daddy did a good job of comforting me, but I know he was really scared and tired of all the worry, too. I had a serious talk with God that night. A very serious talk! I told Him that we'd had enough and that we couldn't take any more of this particular "chapter." I told Him to do something, anything, because I loved you and wanted to know you were going to be safe and I didn't want to feel beat down anymore. Every doctor's appointment we had gone to while I was pregnant brought more bad news. Every car ride home had an even sadder, heavier feel than the car ride before.

Eight hours after my very serious talk with God, at 2:30 in the morning, I woke up abruptly from a strange "punch" in my tummy. The punch was scary. It felt like someone had kicked you around and like you were bouncing off the walls of my insides. It turns out that was actually my water breaking, but I didn't realize this until later because none of the water had come out yet. Then I felt a very intense pain that I thought for sure meant that I was going to be sick. I started heading to the bathroom when I realized it was more than just that. The pain was coming in waves and was very intense. Daddy called the doctor and they told us to come in as fast as we could. On the way to the hospital I continued to have contractions about 5 minutes apart. Ouch! They were painful! At that point I knew that we'd be meeting you in a few short hours. I was very scared and very excited all at the same time.

When we were about 10 minutes away from the hospital, I felt a big gush of fluid soaking my pants. It was my water finally coming out. (Good thing we brought a towel!) By the time we got to the hospital, my contractions were very close together and they were getting more and more intense. I was dilated to 2 cm. Things started to progress really quickly. It was obvious you wanted out. I asked for an epidural to help with the pain, but we had some problems getting it in a timely manner. First of all, none of the nurses could find a good vein in my arms/hands to put an IV in, and an IV line was necessary for an epidural. At this point, I was in more pain than I'd ever been in in my life and I was screaming and asking WHERE IS MY EPIDURAL!?!? Daddy was wonderful. He helped to calm me down (as much as I could have been calmed in this situation) and kept reminding me to breathe. This went on for three hours.

Once they finally found someone who got the IV in my arm, they couldn't find an anesthesiologist. I was told that the doctor was on her way and wouldn't be there for 20-30 minutes. I said, "NO! I can't wait that long! I'll DIE!" Somehow I managed to cope through that last 30 minutes and when the doctor arrived I almost kissed her. I remember telling her how wonderful she was. I got the epidural and instantly felt a million times better. By then, I had dilated to 3-4 cm and then quickly to 7. You were coming fast! We had been monitoring your heart and it seemed like we'd be able to do a delivered birth. In just another little while, I was dilated to 9 cm and they were wheeling me into the delivery room.

Dr. Saul had me push for an entire hour. I remember feeling like I had no idea what I was doing. I had a constant feeling that I wasn't doing it right. Your heart rate kept dropping to a scary range and the doctor didn't like that (neither did I, it was freaking me out!), so after a failed attempt to "vacuum" you out, she called for an emergency c-section. Once this decision was made, I started to get really scared. Suddenly there were about 50 people in the room getting me ready for surgery. Daddy was still doing such a good job trying to make me feel calm. The doctor cut into my belly and I realized that I could feel the incision being made! That wasn't good, so they decided to completely sedate me and that meant that Dad had to leave the room. I was pretty upset about him having to go, but then the world went blank and I was out like a light.

It turns out that your umbilical cord was pretty short, so that's probably why you couldn't come out the natural way. You were born at 9:55 am on that Tuesday. When I woke up I was in a lot of pain and Grandma was holding my hand. I asked how you were doing and she said, "He's perfect!" I had a really talkative nurse who was giving me every different drug under the sun in an attempt to lessen the pain. You had been taken to the NICU right away and Daddy went with you. Later they wheeled me in my bed down to see you. I was very drugged up and feeling loopy, but I'll never forget seeing you that first moment. You were incredible and so beautiful! You had so much dark hair and such a sweet little perfect face. I loved you instantly. I only got a moment with you because I was wheeled back to my room to recuperate from surgery. Luckily, I was able to watch you from my room. There was a camera pointed on you in the NICU that I could watch on the tv. I didn't take my eyes off you. I watched the nurses draw blood and listen to your heart and poke around on you. I sat for hours and stared at your sweetness. Thankfully, Grandma and Grandpa and Auntie Lissa were there with you almost the whole time. Daddy wheeled me down later so I could spend some time with you.

We found out your official heart diagnosis that day. You have Tetralogy of Fallot with Pulmonary Atresia and MAPCAs. Thanks to the MAPCAs, we are able to hold off for a few months on your first heart surgery. That was a blessing that we didn't expect. We also found out that your right kidney appeared to have never developed, so you were operating on just your left kidney. You stayed in the NICU for almost a week and Dad and I visited you every chance we could. Once I healed up enough from my c-section to be released from the hospital, we were by your side constantly.

Little by little, you gained strength and almost all the wires and tubes were removed from you. You got transferred to the ICC, which is a step below the NICU, so that meant you were getting stronger. The doctors performed a lot of tests on you and you were such a strong little guy! You were so well-tempered and you kept showing us over and over that you were going to be just fine. Your one kidney was working great (with a jump-start from a little medication) and your blood-oxygen levels were fantastic, considering your heart issue. Dad and I lived there in the hospital with you and we fed and held you as often as possible. You were such a good baby! A lot of the other babies in that same unit cried a lot. I remember Gage, in particular. He was the screaming baby at the end of the hall that everyone talked about and none of the nurses wanted to get assigned to. The nurses loved being assigned to you, though, because you were so easy and good.

After two weeks of being in the hospital, we were able to take you home. You still had an NG tube (for feeding) in your nose, but we just wanted you home with us. Two days after we got home, we had to bring you back to the hospital because you weren't taking your bottles as well as you had been and you were breathing extra hard. It turns out that you were having congestive heart failure, so they increased your dose of Lasix and that helped out tremendously. Daddy and I were both shocked at how quickly that extra dose of Lasix turned you around. You instantly started eating well and breathing better and we got to bring you home again two days later.

We have now had you here for one whole week and you are doing great! We pulled your NG tube out because you have been eating your bottles like a champ! You weighed 4 lbs. 14 oz. when you were born and as of yesterday you weighed 5 lbs. 12 oz. You're growing so well! Our goal is to get you as big as possible for your first surgery, so weight gain is very good to see. Your dad and I have completely fallen in love with you. You are such a wonderful baby. I thank God every day that it was His plan for you to be here with us right now and that you're healthy and STRONG. Oh Elijah, you are so very strong. Some days I feel like you are light years ahead of us and that you have things completely under control. I love you so much, my sweet little man, and I look forward to living life with you.

Right now you are snoozing in your vibrating bouncy chair. You look so cute in your St. Patrick's Day shirt (from Gina) and wrapped up in Grandma Pauline's blankie.

Love,
Your proud mama

Unwanted club membership

Being a part of this heart world is something that we never wanted. No one asks to be in this club. It's a world filled with uncertainty and worry and panic attacks and hospitals. But under the surface, there are actually perks of being a member. It allows us parents to experience a whole different dimension of life that would have otherwise gone unexplored. In our exploration of this new life, Dan and I have met so many amazing people. It has been invaluable getting to know other families who are dealing with similar issues and it's also very rewarding to be able to lend support to them when they need it. We are now a part of this club that no one wants to be in but at the same time we all love being in because the people we've met are EXTRAORDINARY and they have EXTRAORDINARY babies.

We have received so much love, kindness and support from people who we've never even met. We recently received a Valentine's Day package from Krista, mom of Angel Kate. It was so thoughtful and perfect! Thank you for your kindness, Krista. It has been such an honor to have gotten to know your precious baby girl before she had to go home to Heaven. Elijah adores his new book (and I plan on devouring the candy.....yummmmm). This sweet little book will be our way of having a part of Kate in our house forever.

Another one of my most favorite heart mamas, Samantha, has also been very thoughtful and giving throughout this journey. In addition to being an amazing source of support, she made and sent Elijah an embroidered VERY SOFT blanket a while back and now she's sending him a birthday gift! What a spoiled boy! Samantha, you have been one of my main sources of comfort in this journey.

I love all of you heart parents so much. I don't know what I'd do without you. Honestly. I get overwhelmed seeing the selfless generosity and kind words and encouragement coming from every one of you and I'm so thankful for it. I adore you all and I truly care about and love your precious babies. Thank you for the constant stream of amazing love and support and also for sharing your lives with us.

Ok, now we all need to meet in person! What a perfect excuse to go somewhere warm! Get ready, Kathy and Terri, we're all coming to your houses.

p.s. I just re-read this post and it totally appears like I'm saying that sending us gifts is the only thing that equals kindness. NNOoooo! Not what I meant. I just wanted to thank these two ladies for taking the time to send Elijah a little something, but I most definitely don't expect that in the least. From anyone! Reading an encouraging comment or knowing that someone said a special prayer for our boy or even just taking the time to read this blog is enough for me!


Enjoying the new book before bedtime. Thanks, Krista!


The book is perfect. It talks about how if our little boy weren't a part of our world, we'd have holes in our hearts. Aaw.

So mad at Mama!

Tonight when I got home from work I decided to perform a little test. We have been trying to show Elijah that he needs to WORK to get some things, since he seems so content staying wherever we put him. We can't always just place everything he wants right in front of him. So I brought him to his bedroom and put his play table on one side of him (just out of his reach) and his walker toy on the other side of him (just out of reach), thinking he might make some sort of effort to get to one of them. He looked at each toy, looked at me, gave me a pouty lower lip and started to cry his head off. I finally saved him after about five minutes of this because I only get an hour and a half a night with him the way it is. I'm not going to spend the whole time watching him be so unhappy! It took him a while before he warmed back up to me. He was so mad! Maybe I shouldn't have been taking pictures of his displeasure, either. (Sorry some of these pics are blurry. Our camera takes horribly blurry pics in low light. Arg, wish we would have known that before we spent hundreds of dollars on a camera!)


Mommy, Noooooo! Don't make me work!


I'm just gonna lie here and rest. And cry. This is too exhausting.


Thank goodness Mama rescued me. Sucker!


I'll think about forgiving you.


Here's a tiny smile.


Here's a pretty smile. I love you! Don't make me do work anymore.

I know eventually we do have to let him cry so he starts moving around. He's just so content!

Rambo

Yes, he went to the movie theater dressed like this. That's my hubby! (And no, I was not with him.)





You can see more photos here.

It's Valentine's Day!

Elijah,

Thank you so much for the pretty Valentine's Day card! You are a smart boy. Very creative, too!



V-Day is a very meaningful day. Every year, it is the day chosen to promote awareness of congenital heart defects. This is something we plan to always celebrate and be a part of because we want the absolute best for you and the special heart that God gave to you. V-Day is also important because it is six days before your birthday and anything that is within a week of your birthday is automatically significant. Another reason V-Day is important is because it's a good chance to give extra love and hugs to the people you love. You just wait. I'm going to hug you and Daddy to pieces tonight!

Happy Valentine's Day, my chunky monkey.

Love, Mama


p.s. Some CHD statistics (from Children's Heart Foundation website):

Congenital heart defects are America's #1 birth defect. Nearly one of every 100 babies is born with a CHD.

Congenital heart defects are the #1 cause of birth defect related deaths.

This year almost 40,000 babies will be born with a congenital heart defect. 4,000 of them will not live to see their first birthday.

91,000 life years are lost each year in this country due to congenital heart defects.

The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.

Congenital heart defects occur frequently and are often life threatening, yet research into them is grossly under funded.

In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.

More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime.

There are 35 different types of congenital heart defects. Little is known about the cause of most them. There is not yet a cure for any of them.

In the U.S., twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

The cath lab is anxious to see us

Apparently Dr. Gremmels got to thinking about our little Elijah and decided that it would be best for him to get general anesthesia for his upcoming heart cath. The last time he had a cath without anesthesia, bad things happened. The anesthesia team is not available for us on March 27th, so we had to move the cath date up to March 19th, when they are available. That's like one month away! I suppose this is the time it is supposed to happen.

I realize I haven't posted pics in a while. Bad mama. I will do that soon, I promise. Maybe first I'll post pics of my stud hubby who went to see Rambo tonight with a friend DRESSED LIKE RAMBO. Yeah. So hot. I'm thinking they are being seriously laughed at in the theater right now.

Back to the cath lab

We are set for a March 27th heart cath with Dr. Gremmels. This will be Elijah's fourth heart cath! Dr. G will just be checking the pressures in his heart and taking pictures. No actual work will be done this time (we hope), so we probably won't even have to spend the night in the hospital (we hope).

I can't believe we are on the road to surgery. It's a scary road to be on, as we've been dreading this for quite a long time now, but in a way it feels good. Soon surgery #2 will be behind us!

On another note, we are in the process of doing some transitioning from bottles to sippy cups and from baby food to big people food. Elijah seems totally bored with the bottle lately, but he doesn't have the hang of the sippy cup yet. It's a bit frustrating. He will drink his bottle for a few chugs and then he'll start playing with it or he will just chew on the nipple and not drink from it. It takes forever to get a whole bottle into his belly. I guess I'm not entirely sure how this whole transition is supposed to happen. Hopefully Dr. Snook can shed some light at Eli's 1-year well visit next week. When it comes to solid foods, though, he eats like a little piggy. He loves cottage cheese more than anything in the world. If we have the cottage cheese container anywhere in sight while he is eating something else, he totally freaks out and needs the cottage cheese NOW.

We are still working with him on sign language. He doesn't do the signs consistently yet, but for the past two days, he will usually do the sign for "all done" if I say it out loud. Cute! Things are clicking in that sweet head of his! And as for his tummy time, HE STILL WON'T DO IT. Every once in a while he'll roll to his tummy on his own and stay there for a bit, but if we try to help him roll he will usually refuse it. He knows we're trying to make him do work. Smartypants Mr. Leisure! His leg strength is improving ever so slowly. He cannot stand on his own yet. We're getting there! Baby steps.

Early

I decided that Elijah's nickname is going to be "Earl" (short for "Early") because everything he does, he does early. He was born early, he tried to be born REALLY early, he had his first heart surgery earlier than expected, he goes to bed early at night, he wakes up VERY EARLY in the morning. And now, it looks like his second heart surgery is going to come early as well.

What we learned, after spending hours in the clinic this morning and getting an echo (ultrasound of the heart), is that Elijah is growing very well, so the conduit (acting as a valve) in his heart is on the verge of being too small for him. His O2 sats right now are running between 76-78%, so that's a sign that we are on the path toward surgery. We're no longer waiting to step onto the path. We are on the path! Yikes! We are going to schedule a heart cath for March or April, and based on the results of that, we will schedule his open heart surgery appropriately. It looks like we may be looking at a May surgery. Possibly sooner, probably not any later.

So this is good news. He has no fluid build-up and his heart function looks perfect. He's just a champ who eats well and grows quickly! His weight this morning was 22 lbs., 12 oz. He's huge! I love it! He has gained 4.5 lbs in just two months. Dr. Gremmels said, "This is phenomenal!"

I love Dr. Gremmels. He has to be one of the best doctors on the planet. He always makes me feel a million times better. I wonder if he does psychotherapy as well? Maybe I'll call him when I'm having a bad day and he can help talk me through it? :)

Thanks for checking in on us and for all the words of encouragement!

I almost forgot to mention that the G-man said he would have been completely comfortable allowing Elijah to get his hypospadias surgery tomorrow. Ug! I wish I wouldn't have canceled it. We can't really reschedule now, since we'd be going into March and since we don't want to get too close to heart stuff. Oh well, looks like now we'll just wait till next fall.

Quick update

I talked Dr. G's nurse into getting us in on Monday morning. This makes me feel much better. We just have to have faith that things will happen when they are supposed to happen!

The honeymoon? It's over.

I feel sick to my stomach. We learned some potential bad news this afternoon and I'm just sick over it. We brought Elijah to see his pediatrician because of a rash he has in his diaper region. While we were there, we figured we would get the pre-surgery physical (for his hypospadias) out of the way, which was supposed to take place next Tuesday (not anymore). Well, he didn't pass his physical. His liver is enlarged and his oxygen sats are down to 75%. These things most likely point to heart failure. Either he has fluid build-up, which means a bit of Lasix might help out. Or it could mean that he is outgrowing the shunt in his heart and that the dreaded Big Surgery is a lot closer than we had thought. We have an appointment with Dr. Gremmels in two weeks, so I'm sure we will get a better idea of things then.

We have had such a nice break from heart-related issues for so long now. It's almost like I have convinced myself that Elijah is a healthy baby. He eats well and continues to gain awesome weight and certainly doesn't act like he's sick at all. Today I was jolted back into reality. He IS a sick boy. And he might need surgery soon.

I just don't feel prepared for this, if this is the road we have to go down right now. It's much different this time. Elijah is an actual little person with a personality and character. I don't feel strong enough to face this right now. I don't want to hand my precious boy over to the anesthesiologists and endure it all over again.

But I have to be strong for all of us, especially for our sweet Elijah. He needs a strong mama. And I need to stop being such a whiner. We could really have it so much worse. Sorry for the bad attitude and giant blog rant. I'll feel better tomorrow.

More more more

I know I already posted today, but I have to brag about something, so you have to deal with me one more time. We have been letting Elijah watch Baby Signing Time videos for a few months now. We really want him to learn sign language so we can communicate with him before he can talk. He looooooves the videos. He smiles and giggles and dances and is in total baby heaven every time we let him watch them. So tonight I was cleaning up the kitchen after dinner and Elijah was sitting in his high chair munching on some Cheerios. I started singing one of his favorite BST songs called More More More. In the middle of singing, I looked over and saw our smartypants boy doing the sign for MORE! I started squealing and clapping and yelling YAY ELIJAH! He looked at me like WHAT MOM?! OF COURSE I CAN DO THIS.

I love it!

Healthy, wealthy and wise

If the saying has any truth to it, Elijah is pretty much guaranteed health, wealth and wisdom. He has always gone to bed early and gotten up early, but lately he's going to bed even earlier and waking up earlier. Now, one would think that if we put him to bed later, he would wake up later, right? It seems intuitive, but that's not how it works with him. We have tried that and all it does is make him totally sleep deprived because he gets up at the same time every morning no matter what time he goes down. We have been putting him down for the night around 6:15 pm because he is so completely exhausted by then. He sleeps solid until about 4:30 am and then he's up and talking and playing in his crib until 6:00 am, when we finally get him out. We have a rule in our house that we have stood by since Day 1. We do not get Elijah out of his crib until 6:00 am, unless he's sick or hurt, of course. He knows that 6:00 means freedom, so that is usually when he starts to cry. The kid has an amazing internal clock. So we are wondering what we should be doing differently, or if this is just another sleep adjustment period, which is entirely possible. Tim and Katie, we love the book that your pediatrician, "The Bluth," wrote and we have followed a lot of his principles. According to what he has told you about your boys, would you say we should be putting Elijah down even earlier? What times and for how long do your boys nap?

So with all that said, we have been a bit sleep deprived lately. It's hard not to hear the constant stream of baby talk, grunts and giggles coming from the next room, starting between 4:30 and 5:00 every morning. Last weekend we went to Bemidji to visit some friends so we were able to hear all the baby noises in full stereo sound both mornings since his pack 'n play was a few feet from our bed. However, the lack of sleep didn't matter to us then because we got to spend some quality time with our friends Kendis and Chris. Oh, and Summit the puppy! They live out in the woods on a few acres of land, so it is a very peaceful place. Because we're trying to get Elijah as much sleep as possible these days, we hung around their house most of the time, which was just fine with us. We did get out to see Paul and Babe, though! Saturday night after Elijah went to bed, Chris and Kendis grilled us yummy steaks and then the four of us played Deal or No Deal and we had a blast with that. Thanks, guys, for the fun little getaway. We love your cozy home in the northern woods. Tell Summy that Elijah wishes he could have gotten more puppy kisses.

I had a message on my phone from the hospital this morning, wanting to pre-register Elijah for his surgery. My first thought was, why are they calling so far in advance? His surgery isn't for another couple of weeks! Then I looked at the calendar and realized that his surgery is one week from today! AGGHGhghghhh! We're probably only going to be in the hospital for one night and it should be a fairly standard procedure, but still, the thought of hospital time gives me the willies. I know, I know, I need to stop being a cry baby and suck it up. It will be one more hurdle to put behind us. It will feel really good to get this done.

If you haven't already, please see our information about this year's Heart Walk. We decided to help raise money for this event obviously because of Elijah, but it's a nice way to celebrate Dan's dad's life, as well. He also has heart disease and has dealt with some pretty major stuff. We are definitely a heart family! Thanks for your support in this.

Ok, now for pictures...


Paul's giant legs (look at that sweet baby face)


Daddy and Elijah picking Babe's newly renovated nose


Sweet, spaghetti-stained face


The Portas and Paul


Mmmmmmm...horse with giant teeth tastes yummy