Tuesday, August 31, 2010

A ton of bricks

I visited my local OB department on Saturday. I was looking for a Haberman bottle and my mother-in-law thought to try there. They had one.

I knew the nurse working, so I brought Cal in for his next feeding and we tried out the bottle. As I mentioned before, it did not all of a sudden work wonders. I was there for a couple of hours. The nurse, patient as can be, asked me "What are your goals?" I tried to answer. I was exhausted. I turned to her and asked "If you were me, what would your goals be?" I wanted out. I wanted someone else to take over and direct this show.

It was a hard week. I suffered many negative feelings. In hindsight, it was part of the grieving process, perhaps anger.

There were two, maybe three times when thoughts and pictures tried creeping in my mind; like flashes of lightening. The one I remember was down stairs in the boys' bedroom at bedtime. It had been a hard day. For a brief moment, I wondered what Calvin would be like without Ds. "Out!" I told those thoughts. I couldn't go there.

If you've ever suffered a loss, of someone you've loved, you know those flashes and their dangers. I felt I was suffering something fierce. I found myself wishing I wouldn't have had him. I didn't want to do this anymore.

I felt as though I was literally carrying around a ton of bricks; on my shoulders, in my brain, with my feelings. Those ton of bricks make it really difficult to move forward. How could a person possibly persist through life at a decent pace with weight like that? This is why I asked that nurse to take them from me.

Tonight I asked God to take them from me. No, I asked Him to throw them and shatter them. He did, tear by tear. As the tears streamed down my face, I felt lightness. I felt free. God answered my prayer.

Friday, August 27, 2010

Figuring out Feedings

I have been riding that rollercoaster I spoke of a week ago; up and down, up and down. I was so, or too, excited about switching Cal to thin liquids. Joe and I tried throughout Wednesday night and into the next day and were finding a) the nipple on the bottle is too fast and b) Calvin was consuming 1.5-2 ounces max. This just wouldn't cut it. I was bummed but knew I could try thickening with psyllium husk powder and fortifying with formula powder. However, Karen Hurd did not think the formula was a good idea. It would be too concentrated. The cardiologist mentioned this, too. I did finally get to speak with Karen.

I told Karen Cal has been consuming about 14 ounces a day and she was satisfied with that but knows he needs more calories (Joe did the math with what she told me for carbs, fat, and protien and came up with about 400 and the 14 ounces straight is calculated to be 280, so he needs about 100 more). Karen said to add 1.25 tsp of light olive oil to 5 ounces of breastmilk. Plus we are adding the psyllium (no/very little caloric value). I definately have questions about this but told Joe last night that I want to give her an honest try and do as she suggests. I trust her. My issue is that 1/4 of his calories are from light olive oil, which means a lot of fat. However, she must know what she is talking about and maybe Cal will slowly increase his volumes and we can decrease the oil. Time will tell. Insert realization: with the concoction of formula and rice cereal, about half of calories were coming from the rice, which is carbs.

As I mentioned, we decided to add some psyllium incase he is aspirating and that is why he did not consume many ounces (however, I don't think I gave it enough of a try because of the nipple being too fast and him seeming overwhelmed). I traveled to Indigo Iris in Amery to pick up the psyllium. I tried it when I got home and added more and more. Well, it needs time to thicken. Insert second realization: nothing is simple right now.

Grandma Jo Jo came up yesterday and we were talking about all of this. The public health nurse was on her way out to weigh Calvin. When I told the nurse about what we were feeding him, she questioned whether or not the psyllium would be too binding and pull out too many nutrients. As Jo Jo and I were discussing this I recieved a phone call from Dr. Laughlin. I told him about the updates since Tuesday. He thought the question the public health nurse proposed was a good one and he said to use less psyllium. Well, that jived with Karen's suggestion of 1/2 tsp per 5 ounces (I was having to use double). So, I started mixing the food up a whole feeding early, so it has about 2.5 hours to absorb the H20. That did not go well, so we're back to just about 1/2 tsp per 2-2.5 ounces. That seems to be working and he is getting in 2 ounces per feeding. I did get a chance to ask Karen and she said it is not going to bind to the nutrients.

Dr. Laughlin agreed with the cardiologist about Calvin being ready for thin liquids. He said he thinks Cal is scared. I tend to agree as I notice I'm scared, too. When I watched him with the thin liquids, I was scared of seeing him shut down like I did in the NICU. That is why I feel better about thickening some now and slowly thinning out. In the meantime, I am got a hold of a Medela/Haberman bottle so that I can work with Calvin on the flow and he does not become overwhelmed. I'm not seeing any huge improvement, so we'll stick with the thicker food for now. I know I need to be relieved that we can do that much for him. But, a large part of me is pretty sad about not being able to nurse him right now. I do not feel as connected to him as I would like and as I was with Evan and Nolan.

I appreciated Dr. Laughlin's call. He had many words of praise for the work I am doing with Calvin. He said I am being logical and competent. He also told me to keep up the muscle work and I'll be going back in on Monday morning to see him.

As I said, I have been on an emotional rollercoaster these past few days. I think we're stable with the feedings right now and we have something to work with for a while and we'll see how he is gaining weight and so forth. I have been satisfied with it so far.

Wednesday, August 25, 2010

What a day this has been, what a rare mood I'm in...

It has been a wonderful day and I'm on cloud 9! I'm trying to take it all in and ignore the part of my mind that is telling me that it has not all proven to be successful. Well, I'm going for it!

I started out with a pediatric dr. appointment for Calvin. This was not necessarily positive. The dr. did not impress me and was someone who did not individualize my son and work with HIM. She also said "they have large tongues" (something I'm sick of hearing). Well, who are we then? Us without Ds? I know I have a large tongue because it's usually hanging out of my mouth, and the dentist did say I have something going on with my tongue that he's never seen before (nothing that we figured out though). Anyways, the same dentist, Dr. Laughlin, said that Calvin's tongue is fine and did not think it was too large for him. Another myth and generalization. I wonder what people with Ds would say to generalize us?? Also, I asked about the feedings and my determination to get Cal on breast milk. She took no responsibility and told me to talk to the dietician from the NICU. Well, I'll be searching for a dr. who will treat Cal as an individual and will get me answers. I'll get back to that later.

After that appointment, Auntie Katie (who so graciously drove so I could pump, and held Calvin and entertained me and the nurses, and so on) and I went and had lunch at Culver's and had to get to United in less than 30 minutes. I told her to drive efficiently, she told the nurse on me and said I told her to drive fast! ;) Don't tell Katie, but that is what I mostly meant - okay, she'll know when she reads this! When we got to United, we had a chest x-ray done and saw Dr. Sutton, the cardiologist. Another dr. was in there to observe and listen. I love that, because they are taking the opportunity to learn. "Use us to learn!" Things still look pretty good. The x-ray shows and enlarged heart still and one other thing I don't remember but I think about the lungs. However, these things were supposedly better than the last x-ray, so Dr. Sutton was not concerned. I asked if that would look "normal" before surgery and he said probably not. I really like Dr. Sutton. I trust him and he treats Calvin as an individual and is willing to work through things. I told him about my desire to get Cal on breast milk. (No luck talking with a dietician from Children's - left a message after 3 transfers). He said that since everything looks good and Calvin had the tube in his throat during the study, to try thin liquids! He said "we can always go back to what we were doing". Yay!!!

Calvin was up in weight to 8.25 lbs and 20.5 inches. Both are 50th percentile for his age on the Down syndrome growth chart. This was determined at the heart clinic because when this was done in Hudson, the pediatrician said he was in the 10th percentile. I asked her if that was on the Ds chart and she said "No, we don't have that". What?! That is ridiculous, that should not be the case. This was another reason I was not impressed with the dr. visit. I know some of you may think I'm being too harsh or picky. I'm not. I HAVE to be Cal's advocate and I do not believe the medical community knows everything. God knows everything, I do know that!

Okay, back to the day. For Cal's 6pm feeding, I gave him 2 ounces of thin liquids and he sucked it down just fine and maintained his latch. I did put him in a football hold because the slowest nipple was still fast and his eyes got large when he was trying to handle all the food. He seemed relaxed on his side. (He has also taken a liking to a certain nipple, for the MAM bottle) He is doing wonderfully sucking. When we went to the dentist yesterday, he did much better! He also kept the pacifier in his mouth for 15 minutes of the drive today. I realize I have more to say that I'm capable of coordinating right now, and I apologize. I hope you're following along, if not, sorry.

After the dentist visit yesterday, I called a nutritionist, Karen Hurd. The dental office referred me to her to help with figuring out the feedings and how to thicken breast milk. What I found out from her was pretty amazing. We had a phone consultation tonight at 6:40pm. I spent 85.00 and it was worth every penny. She said to thicken breast milk with 100% natural psyllium. 1/4 tsp for 5 ounces would make it honey consistency. However, we agreed not to do that yet and we'll consider it if Cal's feedings drop or it seems he's aspirating. She figured out he needs 20+ ounces of breast milk per day (I'm pumping about 48). She did this by figuring out all the amount of fat, carbs, protein, and H20 that he needs. She also told me that cow's milk can contribute to aspirating. So, I'm supposed to avoid it, AND that is what formula is made of. Hence, the formula could have been contributing to the aspirating!! I do need to ask her how that is so, and I will. I just have had a very busy day, as you can tell since you're reading a book. Well, we are now going to be feeding Calvin about 3 ounces of breast milk per feeding (7 feedings) and we'll see how he does with getting that in AND gaining weight. Time has yet to tell how successful this will be.

Karen also said that a reason he might not have eaten much in the NICU is because he was fearful of the whole situation. She said that sometimes not enough credit is given to little babies.

Karen said she thinks we're doing the right thing and to keep working with Dr. Laughlin. No problem there! I pray that I'm helping Cal the best way possible. God bless.

Monday, August 23, 2010

Another one bites the dust...

I thought of Calvin (and you) when I read this:

"For I know the plans I have for you (Calvin),' declares the Lord, "plans for welfare and not for calamity, to give you a future and a hope." Jeremiah 29:11

The most important thing I have learned to this point is, that we're not in it alone (as mothers and fathers). We have a Lord who has a plan and we have to trust and most importantly (which is the hardest) rest in knowing that, allowing Him to carry us (and our kids) day by day.
"Lean on, trust in, and be confident in the Lord with all your heart and mind and do not rely on your own insight and understanding." Proverbs 3:5

A sweet friend emailed that to me. I have so many of you reminding me to be easy on myself and I have calmed down since this morning. I feel guilty and pray Calvin knows I did not abandon him during his early days. So, I will put all of this energy into holding him and loving him so much that he should never know the difference.

Birth to Three was out and we will work on the IFSP next week. The OT and I had a good chat about the feeding issues and we came to no answers but some possibilities. We decided to talk to the pediatrician and cardiologist on Wednesday about a plan to switch to breast milk and Simply Thick. We will do that for a couple of weeks and slowly start thinning out his food and see how it goes. We will monitor him and have his lungs listened to as often as we can. I believe in my heart of hearts that he will do fine on breast milk and Simply Thick. I thought about the swallow study and a couple of things came to mind: he was sleepy during the study and the tube was in his throat. So, I'd like to believe he can do better now, it has been 3 weeks. The Birth to Three gals were impressed with Calvin's head holding and back arching. He can almost roll over. (People with T-21 are more flexible than us 46 chromosomed relatives.) BUT, we are also watching him for reflux, which could contribute to the arching. The OT said she's never seen a baby with Ds arch their back that much (far) at this age! However, she said she's not sure if it's good if it's a sign of reflux.

We ended the day on a pumpkin note. One of Joe's giants went down yesterday. It cracked open at the blossom end. It weighed 1,152 lbs! I think he can still count it as the largest pumpkin he's ever grown! Great job, Joe! We look forward to October's weigh-ins. Enjoy the pictures.

What is that I hear about people with Ds always being happy?!

Dentist visit

If you haven't yet, watch the first video on the link regarding John Garrick.

I took Calvin to the dentist this morning. I have been on fire ever since. I have regrets about how Calvin was handled after his birth. I did during his birth with those tests, WHY did I let them take him from me right away and put him in the NICU and DISCOURAGE me from holding him??? "It's hard on him to be taken in and out of the isolet" they'd tell me. Well, knowing a bit about pyschology and attachment and bonding, I knew deep in my heart it was all wrong. I should not have shoved that feeling away. I did so I could get through those times.

Here's my main issue with how things were handled. Supposedly Calvin had low blood sugar so they shoved the tube down his throat and fed him formula. Insert questions: "Is it normal to have low blood sugar following birth?" "Shouldn't he try to nurse right after birth?" Well, I didn't even get to hold him more than a minute for roughly 6 hours. Meanwhile, he was force fed food through a tube. Insert another question: "Shouldn't he at least bottle feed and in a day if he hasn't eaten, THEN consider the tube?" I tried nursing and for those first 2 days he did. Not much, but he did. Add in time and more insults (blood tests, strangers-nurses and doctors and others, echocardios, chest x-rays, various bottle nipples, and the list goes on and on). Radiation and formula and A LACK OF A MOTHER! It's no wonder he didn't nurse. He felt rejected by his own mother and his throat was nothing to trust. And he's considered "retarded", well, I think I am the slow one to learn, but not any slower than the people working in the NICU.

Do I discredit everything they did? No, but I'm not sure much of that stay was necessary. He could have had his meds regulated from home with a visit to the doctor. He could have been tub fed AFTER he was not gaining weight or eating properly. It's all crap now and I regret my lack of knowledge and dismissal of my feelings.

I have been realizing all of these things have contributed to Calvin's feeding issues. The dentist pointed out some issues with Calvin's throat and his cry and the way he breathes. He noticed right away that Calvin does not really cry. I thought it was because he was content. But, when he does cry, it's not really a cry, it's a scream. The dentist, Dr. Laughlin, was able to get him to cry by stimulating his mouth while pinching his nose shut. He sounded like a newborn crying! It was great (except that it points out his lack of it over the past month - Note: he sounded like that when he was born, before the NICU insults). Dr. Laughlin said the tube in the nose through the throat is a huge insult to the throat. He is trying to protect himself. I truly believe that this has led to the majority of the aspiration issues. Warning, there will be some swearing going on here. There was so much bullshit given to me in the NICU. "Children with Ds have large tongues and that is why they don't suck well, blah blah blah". I'm here to squash most of the bullshit beliefs people have about people with Ds, including myself. I should have known when one of the nurses went on to say something about "normal children" (by the way, I left after that and cried my heart out). Oh, guess what, the SLP in the NICU told me... lots of babies in the NICU aspirate and are on thickened food! WOW, is that just a correlation or could there be something they are doing that is contributing to that, like...oh, a tube down the throat? Or, lack of bonding between parent and baby? I get that sometimes it's not medically possible to have as much bonding (being held) but with my little Calvin, it was. He did not need any intervention besides the feeding issues.

I know what some peeps will say to that though and it goes like this: "Children with Ds (or any child in the NICU?) have lower muscle tone and that is why they can aspirate." I'm just not sold on this explanation.

Well, I guess I have said what I need to at this point. Check out the video and you'll see what we've done on Day 1. I'm going back tomorrow morning. In the meantime, I will be stimulating and gaging Calvin (don't worry, it's to help him get over the fear that is the same as you and I would have if someone was starting to put their finger in our mouth and he should start using his throat as it should be). I will also be gently massaging his body and his throat. I don't know what it's called (yet), but that hard part in the front of your neck, that moves when you swallow, is soft on Calvin. I bet yours is hard, as his should be. We have a lot of work, but I'm not giving up and I'm determined to see things change. It is not okay and I wish I would have held on tight to Calvin and not given him up to the NICU so easily.

Saturday, August 21, 2010

Special needs; Cut!

I was tempted to delete the last post. I realize it was only 1.5 hours ago, but I have spent those 90 minutes reflecting on what I wrote and have have my eyes opened up. First of all, I remembered something I read in Martha Beck's Expecting Adam. First of all, I should say when I went to look up this quote, I opened up right to the page (312) and started scanning the exact paragraph it was in, no kidding. Anyways, here it goes:

With Adam, I had more fears than usual to plague me during those long, long nights. The problem was that it was impossible not to fall in love with him. It is a frightening thing to love someone you know the world rejects. It makes you so terribly vulnerable. You know you will be hurt by every slight, every prejudice, every pain that will befall your beloved throughout his life. In the wee small hours, as I rocked and nursed and sang to my wee small boy, I couldn't help but worry. Will Rogers once said that he knew worrying was effective, because almost nothing he worried about ever happened.

Beck goes on to say that what she did worry about did in fact happen, but that is not the point here. The point is, worry does not actually have any effect on the outcome. So, that leads me to the conclusion that what I will learn from being Calvin's mother is a lesson in letting go. I know it will take a lot of work and many reminders, especially for me!

God is Good. Joe is on his way to Madison with 3 of my brothers. They are going to celebrate the remaining days of their friend Seb's bachelorhood. I have little doubt that a) there will be lots of loud banter b) lots of beer c) lots of laughs and d) a very tired Joe. I am happy for him to be 33 going on 22. I am also feeling good about the boys fighting less this morning than other mornings. And finally, Nolan needed his diaper changed and when he saw me with the diaper he came over and laid down. That is down right a working of God! If you know our Nolan, he is not a force easily reckoned with. I will end with a couple of pictures of Calvin's more active tummy time this morning.

You might notice the 2 scratch marks on the poor boys temples. We are not practicing lobotomy, but rather futile attempts to completely eliminate harm caused by his big brother Nolan.

Special needs

I am already learning that as a parent of a child with special needs comes my own special needs. I need a shorter 'to do' list, more emotional support than usual, more time to tackle the extra 'to do' list for Calvin, and on and on. I am listening to Nolan whine in the bathtub. He is in there with Evan and (drumroll please) they are fighting! Wow, if only that were something new. Again, I am left wondering how my parents did it with 7 kids and so many of us so close in age. No wonder they ignored so much tattling!

Well, back to the special needs bit. I have been having a few hard days. I know I'm not supposed to for this reason or that, but I just am. What I mean by that is that when we tell one another what is stressful, we tend to say 'don't worry about it' or something of the like. I promise right now I will try not to ever respond that way. Cripes, I am worried about it! I am worried about money, time, whether or not my youngest will nurse or quit aspirating in the next 3 years, how I will feel when I see other kids his age doing things he cannot, or what I will say when someone is insensitive to the whole situation. I am having a moment of feeling very alone. I'm sure I have on the blinders a bit here but I am looking around wondering who can truly relate to what my situation is and I am reminded that it is indeed my situation. However, I can pray, I can talk to people I feel will provide me with some of that emotional support thing, and I can pick up my head and take a step forward.

And that my friends, is what I am going to do. Right now anyways. I'm sure I'll have to go through the steps again next time! Thanks for listening, it's time to mix up a bottle of solids for my 4 week old...

Wednesday, August 18, 2010


Life in our household is like riding on a roller-coaster - it can be thrilling or it can make you sick. I feel like I'm trying to avoid getting sick.

I've noticed lately the similarities between Calvin and my dream baby. When I was prego with Evan, I'd picture holding this baby and rocking him/her to sleep. I'd imagine simple baby things. Well, I didn't get simple baby things with Evan. He was one high-needs baby. Come to think of it, he still is in some ways (like insisting on which shirt he's going to wear, or what the bedtime routine will be, etc.) Okay, now that I wrote that, it just seems like he wants control! Anyways, back to the dream baby. Well, I'm getting that with Calvin. I get to brag here: he would probably sleep through the night (we set an alarm to feed him), he can fall asleep on his own, he rarely cries, he's cute and cuddly, and he's bottom-line a baby. Don't get me wrong, there are a few things that are not in my dreams. Not nursing is one of them. I'm going to get more serious about working on this with him. I'm not sure where we'll end up, but I'm going to try.

Calvin went to the doctor yesterday and was up to 8lbs. He is doing well. He sees the pediatrician again next week along with the cardiologist. Birth to Three will be out on Monday to do his OT and Speech evals. I think that about covers it. It's time to go feed him. Here are a few pictures to tell about the week (I thought I'd spare you the sight of Joe's new stitches though. I'm calling him Franken-Foot because that is where they are...part of the roller-coaster ride that makes us sick!)
It was brought to my attention that we have a nest in one of the tomato plants. A weird part of me was caught up thinking about my own vulnerable being in the crib - my own little helpless baby Calvin.
Another one that could have made us sick...Nolan fell and hit his forehead on the wooden edge of a glider. I could literally watch his forehead grow in the few minutes that followed. Not good!
It can all be balanced out with a bit of excitement and positive news. I finally have a niece on the Sykora side! Welcome Olivia! Here is her proud papa holding the 2 newest additions to the family.

Friday, August 13, 2010

Home Sweet Home

We are loving having our family all home together. It is so much easier to feel connected to one another when we're together and not running around like a chicken with our head cut off (I'm so glad I missed this experience as a kid - thanks Mom and Dad for ending the chicken phase prior to my long-term memory establishment, that would have been nothing but nightmare precursors). I have obviously been busy, since I'm just finally able to get to posting an update. Calvin has been very easy, but Nolan and Evan have not! Ha Ha! It can be pretty stressful but I've been here, done that. I'd say going to number three has been a breeze compared to going to one and two. As a co-worker put it: "Having one kid is like 'holy crap', two is like 'holy shit', and three and four are 'no big deal' " - they have four, so he must know what he's talking about. By the way, sorry for the swearing, he said it, not me!! Well, it has been busy. It takes about a half an hour for Cal to suck down his food, then I pump, and sometimes I do both at the same time. Then I usually have to rein in the other two who are fighting or crying or hungry or...well, you get it.

We had quite a few visitors this week including Public Health and Birth to Three. We weighed Calvin on Wednesday and he'd gained 4 ounces since he left the hospital, passing his birth weight! Birth to Three came out yesterday and we got paperwork started for now. Calvin will have an IFSP (Individualized Family Service Plan) written up in the next few weeks. In there will be details of his goals and service plans to meet those goals. As of now it looks like he'll have Occupational Therapy (OT) and Speech contracted out through Children's Therapy Center out of Amery. I'm not sure how often yet, that will be part of the IFSP work-up.

I have been feeling okay this week as far as Calvin's disabilities and health issues go. It felt surreal when Birth to Three was out. I'm usually on the other end of the equation, the one helping provide services to children and families. I have thought on numerous occasions that part of God's plan is to give me experiences to better help others through empathy. However, I looked at Calvin today and realized the thought that he is here to fulfill some need of mine is not the right way of looking at him. He is not here just to fulfill something for me, he is here for His plan and to live his own life. Does that make sense? I just do not want to get caught up thinking about what Calvin will do for me, it is so much more than that, just as with all people in our lives. As one of the SLP's at Children's put it: "God has big plans for him" and we know God's plan is perfect!

I'd like to recommend a book: Expecting Adam by Martha Beck. My new friend (yay!) Heather gave it to me after having Calvin. She too has a child who has Down syndrome and a repaired CAVC. People like Heather and so many others are the true blessing behind having my sweet Calvin. I am blessed. We all are.
Evan and Nolan were very excited to have their brother home. The first thing Nolan did was fetch Calvin a book and a doll pacifier (we had just been telling him that it is for babies, since we got rid of his mid June).
Evan loves to hold Calvin. He also thinks Calvin should be awake all day when we are!
Another moment of asking Nolan to smile for the camera.
Tummy time is tired time. Calvin does a pretty good job getting his head up and around for a few seconds. It is hard work!

Monday, August 9, 2010

Family fun and then some...

Guess what? We are taking Sweet Baby Calvin home today!

Joe and I came over on Saturday and he had his feeding tube removed and we were told Monday was a possible discharge day. Of course I was excited but did not want to get my hopes up either. I did not come over yesterday so the attending doc called me with an update. She said he had lost 2 ounces, so I was bumming thinking it would affect the discharge date. But, here we are, loaded up and waiting for his case manager to come in with scheduled appointments and meds. Yay! I am excited and nervous, too. I (okay, Joe too!) have a huge responsibility here. The cardiologist stopped in and gave me a short list of "ifs" to call in about (like sweating during feedings, dropped feedings, labored breathing) He said surgery will likely be between Thanksgiving and Christmas. I'm hoping these next few months go quick so we can get him "fixed" and ready to live his life with more vigor. Calvin is very sleepy and is only awake enough to eat (for the most part). Any-who, here we go! On to the next chapter. Oh, I have to admit, as I was walking down the hall here I thought "That wasn't so bad, I could do it again". I don't want to though, atleast not until surgery.

Evan and Nolan love Cousin Nevaeh's new ride! Nolan also loves Nevaeh's new hair bling! He gave us all a good laugh, what a kid. I cut his hair last night so no up-dos for him for awhile.

Thursday, August 5, 2010

New test results

Joe and a few others went to see Calvin today. The reports are that the feedings are going really well, he passed his hearing test with flying colors, and passed his car seat test (sit in it for an hour and monitor stats). Hey, maybe we're getting ready for a car ride home?? Hopefully!

Unfortunately I found out why Evan was laying around all day. At about 3, I looked at him and noticed his demeanor was just too off. I kept asking if he felt fine. Of course he said yes, over and over again. Well, I touched him and could tell he had a fever. Seriously?? Now I'm hoping it is not going to get back to Calvin. I will be praying at every moment I can.

After he had some Motrin, we headed outside to clean up a keyboard for him to practice his new piano skills. He wanted to ride his bike (which he had us take the training wheels off about a month ago). I took him out to a small hill in the grass and told him to pedal. Well, OFF he went, over and over! He laughed the whole way. What a delight. After some harvesting and bath time, he exclaimed he was no longer sick! I wish! Motrin is sure misleading isn't it?

Lazy Bones

I am home for the first time in 13 days. The older boys seem to be enjoying it. Evan has been laying on the couch all morning - an unusual occurrence. They have been so busy these 2 weeks. Evan started piano lessons on Tuesday and even though he said "that doesn't sound like much fun", he did in fact enjoy it. The boys went to pick carrots and potatoes at Deb's house (when in reference to piano lessons, sounded way more fun to Evan).

Calvin is still in the NICU but hopefully not for long. Cal had his swallow study on Tuesday morning. I realized on the way to Radiology that I was not sure if I wanted him to be aspirating or not. If so, we'd have an answer, but if not, we wouldn't have to mess with a solution. Well, he aspirated the thin liquids right away. This explains why he wasn't eating, it was a miserable experience for him. When we aspirate, we choke, turn red, cry, and leave the room to cough our heads off. Babies who aspirate a lot do so silently. The SLP then tried Simply Thick, a gel that can be added to breast milk. Here's where the worst news of the week is: he aspirated this as well. He didn't quite as quickly and did just slightly, but it's not safe. Then the SLP tried rice cereal and he did fine with that. So, the verdict is: no breast milk for now. I was crushed. I didn't even want to post the results until today. It was like the diagnosis of Ds and CAVC all over again. Disappointment after disappointment. My baby won't nurse and cannot have what I'm pumping. It's very unfortunate because he needs all the medical help he can get, and formula is not as helpful for him. BUT, I am getting to where I am accepting it, only because I have to. When I mixed up a bottle yesterday, I wanted to throw it and refuse to do it, I was soooo angry.

The swallow study will be repeated in 4-6 weeks and many people on staff at that hospital reassured me that he should at least be able to graduate to Simply Thick by then. I am pumping and freezing in the meantime. The good news of this is that he is bottling pretty successfully as long as he doesn't tire out. He does not seem to have much more energy than what it takes to eat. Once he bottles 100% for 24-48 hours, we'll be home. I hope that is soon, but again I have pushed my sights out another week.

The ECG (echocardiogram) showed the PDA closed and that his heart looks as "good" as it did when he was a day old - positive news there. Other than that, I don't think there is much else to report. Hopefully the next time I post we will be ready to come home. I sure am sick of all this and more than ready to introduce Evan and Nolan to their baby brother. He sure is sweet.
Aunt Doopie ("Pee Pee" as Nolan calls her) visited last week!
Finally, some eyes wide open!
Funny faces!

Monday, August 2, 2010

Manic Monday

Okay, it's not really manic, but that sounds better than this! Things are not improving around here for little Calvin. The SLP came in and said not to give any more bottles until after the swallow study, which will not happen until tomorrow morning now. It's a tad bit frustrating because it keeps getting pushed back. It is set up for 8:30 am, so I know it will happen. Calvin's chest x-ray from this morning shows fluid in the lungs so he started the blood-pressure med. He had his first dose 30 minutes ago. The attending dr said it could take up to a week to "work". Cal will have another ECG to make sure the PDA (Patent Ductus Arteriosus) has closed. That is open with all babies so it's not an issue unless it has not closed yet. I think they want to see that things have not gotten worse. After that, the cardiologist will be in with results and we'll talk some more. Poor Calvin. It really hit me this morning how hard the heart defects are on him.

On a more positive, and entertaining note, here are some pictures from last nights' adventures in the garden. Joe's giant pumpkins are doing awesome and the garden looks great. He does such a good job. The boys love it out there and eat lots of veggies because of it. Nolan enjoyed the footlong cucumber. I'd wished I had the camera when I looked over and it was hanging out of his mouth as his hands worked at something else. He does that a lot; uses his mouth as an extra hand! So fun. I can't wait to introduce Calvin to the garden!

Evan's good at posing for the camera!!
Nolan say's "cheese!"