Saturday, July 31, 2010

1 week old!

Yes, we're still at the hospital. Calvin's feedings have been up just a tad; 40% yesterday. He did not do a swallow study yet, he will on Monday if things have not progressed. Calvin has also started Lasix, which is a diuretic. His chest xray on Thursday showed some fluid in the lungs, a result of the heart conditions. So, feedings changed (a concentrated formula is being added to the breast-milk so that he can take in less volume with the same number of calories) and Lasix was added. A blood-pressure medication will be started next week if he continues to show signs of increased pressure in the lungs. We are hoping the Lasix is enough. All of this contributes to feeding issues because it is harder for Calvin to breathe. He takes many more breaths than we do in a minute. The cardiologist likened it to trying to drink while running. That is indeed difficult! One step at a time...

Friday, July 30, 2010

Play time

Yes, I got her hair!

Evan struck many poses for me at the park last week. Notice his Mario shirt? He wears that about every-other day.

This is Evan's famous animal face. He likes to hang out in these tomato plants. I actually found him hiding in the giant pumpkins last night. When I called for him, he just poked his head up. I was surprised he didn't get redirected by his father!

What's in here?

Thursday, July 29, 2010

Rub a dub dub, a little boy in a tub

Thursday continued...
Today was bath day for Calvin. We started it at about 11:40, followed with attempts to nurse, and then some bottling. The nurse and I figured the bath would exhaust him but it didn't too badly. He did alright with nursing. He's still in the learning phase so he's not technically eating (the nurse did check by pulling food out of his stomach with the tube and it showed he was getting something in there). We decided to try the bottle because he was alert and he took over half really well! I had not seen him eat well with the bottle until then and I was really happy. This was huge after the morning round of discouraging feedback from the doctors.

Are we there yet?

The answer is 'no'. Unfortunately, feedings have not continued to progress with Sweet Baby Calvin. However, we are going to be trying some new things with him.

His feedings for Tuesday were at 67% and I believe I just understood that they were in the 20's yesterday. Keep in mind the volume is always increasing, so he is taking about the same amount of fluids as earlier, but the percentage is down.

The SLP (Speech/Language Pathologist) was in again yesterday. It is likely that tomorrow morning Cal will undergo a swallow study to rule out the action of aspirating his food. He is not coughing when he eats, but babies can be silently doing so. Today's attending doc does not suspect this is the case but the test will confirm one way or the other. If he is aspirating, we'll thicken his food. We'll go down that road when we get there.

Another thing that will be done for Cal has to do with decreasing the amount of fluids he needs. Since it is likely that his heart condition tires him out, it would be better to not have to take in as much in volume. Therefore, we will add formula to the breast-milk when he is eating from a bottle. This will give him the calories he needs without the volume. It looks like we could be in for a longer stay than hoped for. That is a huge bummer.

The final update on Cal's stats is in regards to his O2 saturation levels. His average stats were down a bit yesterday. I remember hearing the alarm quite a bit more than other days. I have not heard it much today, but that could change. I think we'll be here through the weekend, probably through next week as well. I figure if I expect that, then there will be less disappointment.
Katie visited on Tuesday. She was feeling bad not having come to see him. Many have not been able to get here and there is no reason to feel bad. When I am here, I am working on nursing and the time actually goes pretty fast until I leave for home. Since I have been leaving by 5 there is not enough time for people to see him after work. It is alright. Here are some pictures to help in the meanwhile.

Wednesday, July 28, 2010

Temperature Gauge

Wow, ever wonder what life is really like? Stick the thermometer under life's arm, or better yet, watch the people around you.

It would be false advertisement if I didn't admit that I was feeling a bit worn out today. I feel tired and took a bit of a time to cry tonight. It is hard on this mom to be trying to balance life on the homestead and life an hour away in the NICU.

Stressors filled my mind on the drive home today. I am now renting a hospital grade pump after a discussion with a lactation consultant. "How much will this cost?" "Will insurance cover it?" I'm not sure, you'll have to call your insurance company. "If not?" $59.00 a month. Okay, sure 59.00 a month is not much, but when the pay checks quit coming and numerous other bills start (or shall I say continue), $59.00 is something.

Now, take those types of concerns and add in Nolan's requests for MaMa, Mom, Mommy... He's been crying at bedtime, summoning me when I walk out of rooms, and the like. It's hard to prevent the tears as I write this. I know he is in good hands, but there is no denying its impact on him. Side Note: I tell myself it is temporary, there will be no lasting affects. It almost makes me laugh, too! It is probably quite silly to even stress over it.

Evan has been wild each night. He said to me tonight (during my earlier breakdown), "maybe you should take a break tomorrow". Wow is he right, I should, but I can't. So, we'll keep pushing through.

I took a bath a bit ago and read the second addition of Gifts (mentioned in the 2nd post). One of the stories really knocked me into place. A college aged woman with Ds was staying with another couple and would come home each night and say she had the best day of her life. After repeats of this claim, the hostess asked the woman if she truly felt that when one of the days was really not so well. She replied that indeed it was the best because she was living it. It was after I read that statement that I realized I do not need to worry about the bills that will come. I need to see today for what it is. Calvin is doing well and I was with my boys. Sure I have things to do but when Nolan was still crying for me, I decided to rock him to sleep, even though it took up a half hour of my time.

I found it quite ironic that once again I was watching Evan sleep (finally) and Nolan was asleep in my arms. My thoughts were different than the last time. Calvin is here and we have a lot to be thankful for. I will post an update tomorrow after I hear from the NICU and attending doctors.

Monday, July 26, 2010

Another day in the NICU

Calvin is still doing very good. I am sitting here behind closed curtains, pumping and waiting for the NICU doctor to come in from rounds. I am curious what he will say. I do not have any blood results today. Cal's white blood cell count was down yesterday from a previous test (a good thing), his bilirubin was up from 7 to 10 and I'm suspecting it will be up more today. I will follow up with a post if something significant comes up with with doctor. Cal's O2 is still good and he's doing about the same as yesterday. The feedings continue to be the struggle. It is a combination of sleepiness and poor sucking abilities. I'm hoping to get a consult with speech and I also want to get him to my dentist who can possibly help. (curious? check out this link: there is a neat video under the left tab "Lives We've Touched", Video Testimonials, John Garrick)
Okay, I was just interrupted by the doctor. I learned something about Cal's heart, he has a balanced heart defect (which I had known but not understood). That means the pressure in his lungs is the same as the heart. This could change in the next month to where the pressure becomes greater in the lungs and slows the heart down. I pray it does not. The doctor said Cal is doing better than expected. His feedings increased from 41% to 61% and he said he suspects his stay will be short: days instead of weeks!! He said again that at this point it is the feedings that will keep him here because the other issues will be monitored by his cardiologist. "Hospitals are for sick people" he said, "not Cal".

I feel positive right now. Oh, I asked about the bilirubin. It was not tested today, it will tomorrow. The doctor said he does not think Calvin with need phototherapy because he is getting the fluids he needs and having a good amount of dirty diapers.

Monday: Chrissy came and hung out with us. It was nice to be with her and also to have company. Grandma Jo Jo visited for a while and sang to Calvin (she claims this put him to sleep!). And, Joe suprised us by taking half a day off. He is at work today all day. I told him I'd rather he that he not take a bunch of time off right now and save it for when we're home. I think he's taking most of tomorrow off though because we are meeting with Integrative Medicine here.

Sunday, July 25, 2010

2 Days Old!

Calvin had an excellent night. I was called to the NICU at 1:30 am. He had been awake for a while and the nurse thought I should try breast-feeding. He ate for 5 minutes (I had actually just pumped so he wasn't really eating). That was impressive! The next feeding was all done with a bottle by the nurse because he woke up right before she was going to hook up the tube feeding. She was very impressed again. THEN, I went down at 8 and the NICU doctor was doing his rounds. He said Calvin should come out of the isolate (the warmer, I figured out what it is called). Side Note: Calvin is out of the isolate as of right now and he is keeping his temp up just fine. The doctor said everything still looks great and we just need to get the feedings done without the tube. I tried nursing again and he did for a minute or so. He took the rest of the feeding with a bottle and once again impressed the nurse on duty. He had an excellent few feedings and it shows he is capable of doing it!

Now it is a waiting game to see if any other complications kick in before we can go home. One thing that is showing up is jaundice. He has been really sleepy since that morning feeding and was fed through the tube these past 2 times. However, I will not be discouraged at this point. The attending dr commented on not seeing a baby in the NICU eat so well so soon. I will hold on to that and continue praying for Calvin's strength and energy so we can bring him home!

I will be leaving soon and spending the night at home. It is bittersweet. I am looking forward to seeing the boys and spending time with them. I just feel a bit strange leaving Calvin here - like he's not my responsibility. I will not stress, I will not stress! I have to let go of some of this.

Grandma Jo Jo was able to hold Calvin for the first time. He was so tired out from his morning feedings. I caught him with his tongue sticking out. I'm not sure if that is a Ds look or not (I don't see that much at all) but it does not matter to me. I understand that now. When I look at him I see how his hair was like Evan's. I see how sweet he is. I see that he is completely a person. I see my baby and I know how he is capable of doing things that none of us will ever be able to do. How could I have worried so much? It brings tears to my eyes.

Saturday, July 24, 2010

Sweet Baby Calvin

During our nightly prayer of "Now I Lay Me Down to Rest" followed by "God bless...", Evan would end with "and sweet Baby Calvin that's in mommy's tummy". God has blessed him, indeed. He is doing really well. God has blessed all of us.
Grandma Linda and Grandpa Ray showed up in time for my time to try nursing. Since the nurse was going to take Calvin out of the warming unit (not sure what it is called - too tired to pay attention), they both got to hold him for a minute. This is a sign of how well he's doing.

He is sucking his thumb! Nursing went well for about a minute - improvement since this morning!
Thank you for the flowers Mike and Sarah! The nurse liked them. They make my room colorful.
Grandma Jo Jo and Grandpa Wayne took Evan shopping at the hospital gift shop. Evan picked this ceramic bird out for me. Grandma reported he said something similar to "I love Mom". It was a highlight to see him. I miss Nolan, too!

2 pictures

Introducing Calvin John

He is here! 22 days early, Calvin John has joined us and is doing GREAT! He was born last night at 11:00 pm weighing in at 7lbs 8.5 oz and measured 19" long. He had a good cry and nice pink coloring. He is free of all assistance except a tube through his nose for some feedings. They really push consistent feedings. I have been pumping a lot though I'd prefer just to nurse. He did try to suck but quickly fell asleep. He has been sleeping a lot. The nurse was impressed with his attempts. I hold on to that!

There has been a lot of good news. The cardiologist had a look at his heart and it confirmed what they thought, that he will do really well until surgery. They hope he can go until about 4-6 months, 3 at the earliest. A nurse and an attending dr (not a NICU dr - I don't really understand all of the positions) both commented on his strength and how well he is doing! I just cannot believe he is here already!

I started some slight bleeding at about 8:30 pm last night. Joe had just left for a run with his buddy Chris. Mom and Dad were on their way home from out west. Grandma Jo Jo was with Doopie and Dan and Grandpa Wayne was busy. I panicked a bit. I called Aunt Beth and she and Patty and a few others set out to find Joe and come over to watch the boys. Within 10 minutes Beth came with Joe and we took off. We arrived at United at about 9:30-9:45. I was measuring at 3cm and I knew the contractions were becoming productive. An hr later I decided I'd try pain meds (never had them before). The nurse checked me and I was at an 8 and really thin so she said "sorry, it is so close". So I toughed it out - what choice did I have? My water had not actually broke, something new this round. The Perinatologist broke it at about 10:50 and ONE push later he was laying on the bed!! We did not waste any time! I finally got to see him at about 1am. He was very sleepy and I did not try nursing. I was disappointed because I really wanted to get going on establishing that. But hey, it will work out if it's meant to be. If not, I can pump! I am learning to let go of some expectations and hopes if it means life is less stressful. We can go home 24 hrs after he is eating well without the tube. That probably won't be until the middle of the week, but we'll see! I have said many many prayers to God. I thank Him for everything that has been and pray for the best to be.

I think that is all for now. I will post some pictures very soon.

Thursday, July 22, 2010

Cold Feet

Anger proceeds me as I begin this blog but it's not because of what anyone has said or done. It is my own disappointment in my feelings about having a baby with Ds. I am beginning to get cold feet and I do not like it. Maybe, and hopefully, it is hormonal. Okay, really, it's more than that, it has to be. But, it might not be the reality I'm about to face with my family and friends. It might be this whole body of unknowns. I breath deeper now. Both of my boys are napping.

Nolan has this habit of creating a dirty, stinky diaper at nap time but I've caught on. He was fussing so I headed down with diaper and wipes in toll, ready for attack (it is too much work to walk back up the stairs when I am 30 lbs heavier than 7 months ago). We cleaned up and rocked. He laid so nice and was snoring in 3 minutes. Evan was already snoring. I was able to rock my sleeping 22 month old while watching my sleeping 4 year old. I started to smile, then started to think about Baby coming and the scary, unknown's crept in. Then I was sad. I was sad because I don't know that I WANT this. I don't know because "it" is not here because Baby is not here. I talked to God and found my way to the online group and wouldn't you know it, I ended up here: I am not alone and I know what to do when I am feeling hopeless in raising a child or adult with Ds. God knows the answers, I do not have to. I also do not have to do this alone because of all the friends and family who have graciously shown so much support. Thank you.

Wednesday, July 21, 2010

Perfect 10

I had another doctor appointment yesterday morning. I went in feeling stressed about what would happen if Baby did not score an 8 or 10 (to find out what this means, see previous post dated the 13th). He scored a 10! I know he is a 10, but as I've mentioned, it is important to me that it be reflected. I also find it important that my own health count for something, and it did! I was not scheduled to see the doctor for an OB check up, but since I am over 36 weeks, I should have been. The nurse said she'd run everything by the doctor and if she felt she needed to see me, well, then she would. The nurse came back in and said that since we're doing so good, the doctor did not feel the need to see us. It was then that I realized I am not a true candidate for having my care transfered to this group of perinatologists and I think they know that. However, since the baby has the heart defect, I suppose they feel liable for providing more care. Some women are unfortunate enough to be subjected to multiple biophysical exams each week. I'm grateful just to be getting to the end of this.

I sat with Joe to watch a movie over this past weekend. I was telling him that Baby is definately growing because when he stretches, it is quite uncomfortable. I was running back and forth between the couch and the bathroom. Geez, I didn't think I drank that much water! I learned yesterday that it was not him stretching, it was contractions! I was having that happen a bunch when I was on the monitors and it was recording contractions. The nurse confirmed. I do not remember that happening with Evan and Nolan weeks before birth (but then again, I did not know what was happening). It is a sign that I'm not only getting ready for labor, but that some major pain is right around the corner.

I was thinking about this at the convinient time of 3:45am. I realize I am dreading it more this time around. I know the pain that is coming where as with Evan I had no clue, Nolan I thought I'd superwoman my way through what I knew was coming, and this time I just know what is coming and it is not a fun time. Well, our sweet baby is coming soon and I'll keep you posted!

Monday, July 19, 2010

"How did that baby get in there?"

Sometimes it seems as though there are 50 thoughts racing through my mind, all competing to be the BIGGEST or MOST important. Unfortunately, I've had some days when those BIGGEST or MOST important thoughts are negative. I do not like that. My heart aches. It has been a while since I've thought about what my/our/His new baby will not be able to do in life. Those are the things that are not the BIGGEST or MOST important much anymore. They do not surface unless they fit into a conversation or other thought I've had. They crept in a bit today:

You know what hurts? When I wondered about this baby having Ds, I did not imagine taking pictures and putting them into photo books the way I have with Evan and Nolan. I wondered, "Who will look at these in 30 years?" WOW!!! What was I thinking? HE WILL! Evan will. Nolan will. Who knows, maybe his wife will!!! I will, for sure! What hurts next? His children? Well, probably not. I think there are only 3 recorded males with Ds who have reproduced. Well, it leads to more thoughts, like, "Would I really want my child with Ds to be responsible for a baby?" The answer is of course "no" unless he was normal or high functioning. Well, enough of that. The point is, some things hurt when you are a parent. And, Ds is not the only reason things do not happen in life. I remind myself of that when I go down this road.

There are many things this little boy will be and do that only 1 in 700-800 babies born gets to experience. I do not know what that quite entails, but this is a link to an article that claims it is something not to fear, something special: I do not place all of my faith into thinking that this is something other than what it will be, but I admit that I really want there to be something unknowingly special about children with Ds. Many people say there is. Some parents of children with Ds say that as well, but many say they are children as are their others (more same than different).

Anyways, I think Ds has just gotten smaller for me now. I smile to myself because Joe and I have talked about how it could be that talking about something is a healing process for me. "I don't know Joe, it just is". I think he should be grateful it is free!! Ha Ha. No, really, it is not easy or something just to tease about, but it really does help me. I think that is why being a counselor is fitting for me. Or, why it has become a thing that when Evan goes to bed, he usually needs me to end the night so we can talk. "Talk to me Mom" he says. You know, another thing that came out of his mouth today?? "How did that baby get in there?"

Well, I'm going to leave it at that. How would you answer that question to a 4 year old? I knew it would happen, just not so soon. I guess that's what I get for walking around with a baby in my "tummy".

Friday, July 16, 2010

Adventures in Garden Land

Gardens are a lot of work but they sure bring joy to little ones and their parents who have a new lens to play around with.

Wednesday, July 14, 2010

Hi Joe!

As we were getting ready to leave the house today Nolan got ready to go bye-bye all on his own! He thought it was essential to have on sunglasses.

When I turned off the car Nolan was not happy. He wanted out! "Guck!" "Guck!" As you can see, he is capable of getting out of just about anything, including diapering and clothes changing! Argh!

Evan requested I take a picture of him "this close". When I showed it to him, he said "That's a great picture."

After my day yesterday, I decided to take a walk around the yard this morning. The boys were still sleeping and the weather was wonderful. This is one of the dahlia plants and I'd say it is my favorite. I wanted to take this picture to show Joe because he is out of town for the week. I admit I'm starting to become a bit competitive with him, too. Who can take the best flower picture??? No, the new lens is not here yet.

Tuesday, July 13, 2010

Too much time thinking

I've been spending a lot of time thinking lately. Honestly, I think a lot about Ds and holes in one tiny heart. I probably spend too much time analyzing my thoughts and feelings about "the whole thing". I can't help it and I think it has a lot to do with the due date approaching. I'm excited but have moments of worry, bumming out, stressing... I've spent some time imagining what this situation would look like in my fantasies if we did not have the CAVC and Ds. I can't. I probably shouldn't either. But honestly, I think I'd like that better. I'm not saying I'd like HIM better, I'd like the situation better. It would be familiar and I'd feel like we could adjust and build our life at home. If I was having a repeat of the first 2 boys, I would not have to plan for as much time away, for as many people to insert themselves (Dr.s and nurses), to schedule follow up appointments or current Dr. appointments, and on and on. Right now I just want to scream (and pray) for Dr.s, nurses, and machines to go away so I can have my baby! Sure, there aren't machines hooked up to him right now, but there will be - I can see it! Even if it's just oxygen. Medications (we don't like to take anything unless absolutely necessary). Nurses in and out. Dr.s telling me what is wrong and what needs to be changed. Or, worse, what can't be changed. I want to nurse this baby and I don't want anyone making that difficult for me and him. Honestly, I want to be left alone with some of these things and that is where I want to just have him and bring him home - away from all that. Well, I guess that is where praying comes in. I will do that and I will do what I can to help him be healthy.

I had a Dr. appointment today. I've had one weekly since mid-May. Honestly, it's annoying and in my opinion, pointless (for us and this circumstance). I am subjected to what is called a biophysical exam and a non-stress test. There are 5 different things examined (practice breathing, lg motor/muscle movements, small motor/muscle movements, amniotic fluid, and then increased heart rates during the non-stress test). They are scored 2 points a piece, giving a total possible score of 10. By the way, this just gets me, Baby cannot score 1, just 0 or 2, so why have there be 2 points? Just give it 1!!!! Anyways, Baby Boy has scored very well and missed the practice breathing 2 times and also the non-stress test (nst) portion (increased heart rate) 1 time. He happened to miss the nst and breathing the same day - 2 weeks ago. So, the Dr. wanted me to go in again the next day. Without many details of how I felt, I declined. Mostly it gets me angry because it is not a good test in my opinion. How could it be when he scored a 10 today??? Where is the reliability? Oh wait, there isn't any. Maybe I'm just frustrated because I want to just be pregnant and enjoy this time. I'm sorry to say, but the medical field has not allowed for much of that. Yes, I am grateful for what they do provide, it's just not much on the emotional side of things. The Dr. saw me for 5 minutes (as this is about all the time they spend with me) today during which he told me what Ds is. He was/is a very nice man, but does not understand what it's like to be in my position. I know what Ds is and I already feel like junk for providing the extra chromosome (in so many words, he said "you" had the extra chromosome). Why continue to explain this to me? Do I look or act like I don't understand any of this? I did not say more than "nice to meet you" and this is what came next. I thought more about it tonight and realize the main thing that is taken away during times like this is: I want to just have a baby. He is just a person, a baby, leave it alone now. The scab was in place and the Dr. messed with it.

Sunday, July 11, 2010

Stop and drink the milk from your cereal bowl

The boys are capable of showing me moments that I can choose to enjoy as much as they are. Take for instance, drinking milk from the cereal bowl. In and of itself, it is a simple yet joyful experience, no matter how old you are. When I was about 14, I joined my cousin Cami at her family table for breakfast. Uncle Larry and Aunt Kim were there as well. We were eating breakfast and Kim noticed one of the boys (I believe it was Chas) drinking milk from the bowl after finishing his cereal. She commented something along the lines of it not displaying good manners. In the instant she was saying that, we looked over and Uncle Larry was doing the same thing, at 50-some years of age. It was great! I smiled all over inside and we all got a good giggle over that one. The left over milk is like a special treat after finishing your cereal. It always tastes like the cereal does. Why waste it? Stop and drink the milk from your cereal bowl.

Saturday, July 10, 2010

2 short months ago...

We're coming up on our 2 month anniversary of our ultrasound that has lead us down this path. It was early in the morning when we left the boys with Grandma Jo Jo and headed to the hospital. I had that nervous excitement because we had decided for the first time to find out the sex of the baby. I vividly remember thinking on the way there that I was feeling like that over finding out the sex since everything else was going to be okay. I'm not sure if it was a question in my mind, but probably something most parents feel at 26 weeks of an uneventful pregnancy. Well, time went on and the tech spent A LOT of time on the heart. More than I remembered with Evan and Nolan. I mentioned this to her, asking if it was harder to look at the heart. She replied "yes" but still nothing made me worry until she left the room for 30 minutes and came back in with the radiologist. I told them right away that I was nervous about what was going on. The radiologist calmly told us that they thought something was "different" with our baby's heart. I broke down right away. The heart? That could not be good. What a shock! I pictured the worst, that we would lose our boy. Here Joe and I were just talking about 3 boys! Fishing trips, cars, trucks, BROTHERS! We would have Brother Bear live! Well, another week passed and we were off to see the pediatric cardiologist at United. That was a whole new bunch of shocks. When I explained what we knew about the heart, the cardiologist replied "oh, this is much more complicated". Then I asked if we were talking life and death? "I don't know yet." I could not believe it. How could that be? Well, after some more time, she told us what she saw. Baby was almost 28 weeks, so she said she wanted to see us after 31 weeks, as things are more stable by then. I was very relieved to hear that the heart defect was correctable. Grandma Linda was there because Joe was on a work trip to CA. It's amazing what you don't hear in these types of circumstances. I had no clue what the heart defect was. All I knew when I walked out that day was that the baby had a heart defect and probably Ds. I was crushed. Mom could help me recall most of that visit, even if I didn't want to. I spent the next week looking at Evan and Nolan and thinking about how at one point I wondered if this boy would look more like Ev or Nol. Now I didn't think he'd look anything like any of us. I would sneak peeks at them in the back seat on the way to daycare and be crushed about this life that was going to end for us. Would this boy even know me as "Mom"? For sure there were not going to be fishing trips. Joe and I will be changing diapers at 10. We'll be wiping up faces for years to come. What would he be without Ds? I felt as though something was stolen from him; from us. I did not view myself as a pregnant woman. I didn't think I had anything to plan for. I wished I would have just miscarried. I wished... Those are thoughts of the past, 2 short months ago. Thankfully I have had some wonderful people to give me new thoughts and dreams. Joe told me he was excited. I needed to hear that. I know now that none of those things are reality. Right now many things are possible and I have many hopes. I kicked it into gear and have been taking extra care of this little guy. We have been eating some new supplements and more fruit and veggies (I have not skipped all desserts though, he likes those too!). I decided to keep running. The perinatologist said not to so I wouldn't go into pre-term labor. Well, I thought about this for about 3 days and realized that would have been the same with any pregnancy and I know from experience that this did not happen with Ev and Nol. I ran a 5K this morning, in less than 31 minutes! Well, I think he's happy and going to be as healthy as is God's will. God...I never asked Him to not give me/us a baby with Ds. I asked Him for peace and acceptance. He has not failed! Only one time was I angry at Him with this struggle. And that was in the time I wondered if Baby had Ds or not. That was the hardest time throughout all of this - not knowing. Now that I know and time as gone on, I am so excited!!! I am excited to have someone different around here to challenge us and give us new meaning to life! I will not play the "what if" game, bring it on!

Friday, July 9, 2010

New gadget

If you have some time, peruse through the new gadget on the right, Check out these links:. The first one, "Enjoying the Small Things" is by Kelle Hampton. She is a mother of a little girl with Ds and also a fantastic photographer and writer. We'll see where I go with that gadget, maybe it will disappear over time if I do not have more to add!

Thursday, July 8, 2010

Ultrasound photos

These ultrasound pictures are within the past 2 months. The one of Baby's face was taken the day we first saw the cardiologist. It was such an overwhelming appointment and I was upset about all the negative news of the heart and the question of Ds. The perinatologist came in and was so positive and was just looking at him saying, "he's so precious, look at those cheeks" and on and on. I will never forget her kindness and how much I needed it. The next month is when one person commented on his mouth being closed and not being common with ultrasounds of babies with Ds. I'm not sure if that is true, but his mouth is always closed. We'll see if that continues.

The other picture is of his hand holding his foot. This is one of my favorite pictures.

Look what the heat drug in...

Here are a few pictures from the week. Joe has many dahlia's growing around the yard. This one is from Doop and Dan's wedding 2 years ago. The garden is doing excellent (though the weeds are trying to take over) and we hope to have some huge pumpkins this fall. There's not much to say about the other picture except, "boys"! As long as they are having fun, life is good! Note: They are looking down watching where they are going and you can sort of see their mouths making the motor noise. I hear that about 50% of the day and hear it just looking at this picture :)

Saturday, July 3, 2010

What's a CAVC?

I'll post just a bit about the heart concerns for now. Baby Boy has what his pediatric cardiologist termed a "complete AV canal defect". There are more terms for this condition but we'll call it that, or CAVC. As I mentioned in another post, it is a common defect in babies born with Ds. The good news is it can be surgically repaired between 3-6 months. The cardiologist explained that this is ideal because the tissue is easier to work with than earlier in life and if you wait too long, the lungs can be permanently affected. Here's a link to more information on CAVC:

Our last appointment with the cardiologist went well. She said his heart is well balanced and the diameter of the aorta was good. The full ultrasound also showed everything else looked good. The cardiologist and tech mentioned that if it were not for the heart, they would have never suspected Ds. Hopefully this holds up after birth and he is healthy and strong - especially as he gets through until after surgery and such.

Friday, July 2, 2010

Ds 101 - if you can even call it that!

I think most people know that Down syndrome is a genetic disorder. There are 3 identified "versions" of Ds with the most common (about 95%) being an extra 21st chromosome on all cells of the body (Ds is sometimes referred to as Trisomy 21, or T21). This is what our boy has (an amnio was conducted and "they" looked at 15 cells, all verified that he has the extra chromosome and that it's a boy!). The 2nd type is a mosaic version. This is the occurrence of just some cells having the extra chromosome (for example, the blood cells may contain 2 pairs of the 21st chromosome, and the skin cells may contain 3...). There is also a form called Robertsonian Translocation. This one is more confusing to me at this point. It is my understanding that this usually involves the 14th and 21st chromosome. The chromosome may break and rearrange itself; the extra 21st may attach to the 14th. Again, I still need to understand this one more. R. Translocation may be inherited and parents can be tested to see if they are carriers. There is definitely more to Ds than this, but it may be enough for us to know right now. I can only imagine what we will learn - especially since the science of Ds is growing and changing so much. I admit that sometimes it is hard to read about Ds unless it is people's personal experiences. (Would you want to read information about what is possibly going to be wrong with your child, let alone know that anything is even wrong?) I've been reading a couple of books and recommend them to anyone interested: Gifts: Mother's Reflect on How Children with Ds Enrich Their Lives and Gifts 2. They remind us that people with Ds are people who have a lot to offer to their families and communities. Again, I look forward to learning how this little boy will enrich our lives.

Thursday, July 1, 2010


Here's my ill attempt at creating anything online. I'm avoiding Facebook, and here's my alternative...

As you may know, we are expecting another baby boy soon (EDD 8/14/10) and he has been diagnosed with a complete AV canal heart defect and Down syndrome. I am still hesitant doing any of this online stuff but realize it might be the easiest way to post updates. My current goal is to also provide some education to you about what Ds is. I think the neatest way to learn will be through this experience we're about to have - what better way to learn than through experience! We are feeling hopeful and positive (yes a bit scared/worried.. not necessarily disappointed or sad, though) about what's to come for our family. Here's a picture from last November, much change is to come!