Friday, November 26, 2010

God's wisdom

If someone were to ask me if I thought I was a strong person, I would undoubtedly answer 'yes'. I have never been one to give up without a fight. I do not fight unfair or nasty, I just persevere. I think it is because I have a lot of practice at it, starting as a kid with 6 siblings. It has shaped who I am. It is as if I am looking at a wall and I see a tiny crack. Behind that wall is growth. To me, to grow is to gain. That growth is transparent though, like air. And, you can bet there is another wall there, with another tiny crack.

I will focus on that crack. I will squeeze through it one way or another. I will gather some tools and break it open if I have to. AND, I never want to go through it alone. I want to take as many people with me as are willing. But, they will have to help, they don't just get to come along unless they are children and need to learn how first. The difficult part is sometimes we don't want to go through that crack. Yes, I believe it is a choice. We can choose to sit back and pout or cry or be angry, be we will not get through that wall then.

What is interesting about that is the ones who don't come with me, stay behind and I find it harder to go back and visit them. I'm sure the reverse is true as well. Many people are through more walls or different walls than am I, but we can share tools. That is what a counselor is for, or a parent, a friend, even a character in a movie.

You can imagine why Evan would like the movie "Evan Almighty": Steve Carell's character's name is Evan AND animals come, two by two. It is a good enough movie and I happen to like the wisdom Morgan Freeman shares as he plays God. These quotes from the movie have me thinking this morning:
"Let me ask you something. (Morgan Freeman talking to Evan's wife played by Lauren Graham) If someone prays for patience, you think God gives them patience? Or does he give them the opportunity to be patient? If he prayed for courage, does God give him courage, or does he give him opportunities to be courageous? If someone prayed for the family to be closer, do you think God zaps them with warm fuzzy feelings, or does he give them opportunities to love each other?"
"How do we change the world? One Act, of, Random, Kindness (pointing at A.R.K.)."

Wednesday, November 24, 2010

Another big day

Today is the day. No more bottles and hopefully no more pumping. I'm giving it a go and I'm scared and worried that Calvin will not get enough to eat. However, I am keeping Esther close and reminding myself that there are lots of babies with Ds whom nurse very successfully, and do so right after heart surgery. One mom I've connect with on the online Ds community board (link to right) still nurses her almost 2 year old heart baby with Ds and did so right after the chest tubes came out.

Some babies with Ds nurse fine while most others need help in the beginning. Either they tend to be weak suckers, sleep a lot, aspirate, or tire too quickly. But, for those of us who are willing to stick it out, it can be a success. I was thinking this morning that many nursing relationships end before or around the age Calvin is just beginning. Side note: Calvin turned 4 months old yesterday!

If you have any prayers left for Calvin and I, I would ask that you pray for guidance to help us through this journey. Breast feeding is very beneficial to babies and even more so to those with special needs such as Ds. And, as you know, I want the best for Calvin. Thank you!

Have a happy Thanksgiving - I have to write a list of my thanksgivings...there are so many!

Here are some pictures I am behind on posting: our first snow day 1.5 weeks ago (sounds like we have more coming) and Nolan with his famous fake glasses that he wears so often...





No, I do not encourage this, nor do I stress over it. This is the boy who has eaten his fair share of sand and dirt (amongst other things).

Eating snow was Nolan's favorite winter activity last year and seems to have made a quick return...

The snow was actually like ice pellets and Nolan cried when he was out in it (I wanted a picture of the boys with the snowmen Evan and I made).
Yes, the one on the left is missing a head, it never got one either.



Monday, November 22, 2010

1 week Post Op

Below are pictures of the incision. You may not want to see them, which is why I'm warning you.

What a difference a week can make. I keep thinking it feels like I've brought home a newborn, again. I'm not sure what will change now that Calvin's heart is "fixed". First of all, he is home on some Lasix to get all the excess H2O out of his system. He is not on any pain meds and is doing fine without them. He is back on his NuTriVene D and probiotic supplements as well. We are just getting back to our routine.

That routine feels easier when it comes to feeding time. No more thickening, which meant planning 15-20 minutes ahead of time. Calvin is doing well with thin milk. He does aspirate now and then and cough BUT he can deal with it now. He sounds good. No more hoarse voice either, just a nice loud cry (which goes along with today's pictures).

I was hoping Calvin's sleep schedule would not change much. I expected it to but I have not noticed much of a difference. Of course it's not like when he was a newborn and slept all the time, but it's like it has been in the past month or 2.

The second big change I've noticed, besides the feedings, is Calvin's belly. You may remember this from other pictures. The reason for some of that was the excess fluid from heart failure, which is what the Lasix was/is for. When I changed him this morning, I was shocked to see the difference. The last picture in that 2 month post shows the largest change, breathing. That picture shows retraction, or the indent under the ribs. He does not have that anymore. His breaths per minute has slowed, which is why bottling thin liquids is easier.

Again I'd like to say "thank you" to everyone for your thoughts and prayers, messages, gifts, and help this past week. We made it! Next? Nursing and sitting up... in due time.
These 2 are the day he came home from the hospital.
The spots above the belly button are from the chest tubes and pacer wires. You can barely see his neck, another sore spot due to the tube that went into his carotid artery.


"Mom, do something, I'm not happy!"



Saturday, November 20, 2010

5 days Post Op

...and he's home!

Calvin is fast asleep in his bed so I can play with the other boys.

Here are a couple of pictures from yesterday. I'll take some of his incision for the next post. Doesn't he look so much better without that stuff on his face?
"Later Gator"

4 days Post Op

It is hard to believe Calvin went into surgery just 4 short days ago. He is off all assistance and his pacer wires were pulled. Cal's oxygen saturation levels stayed in the low to mid 90's unless he was kicking around, which then they were in the upper 80's. The cardiologist wants them above 85, so we're good.

The best news of the day (next to his improved chest xray and lack of other assistance) is that Calvin passed his swallow study! Even as I type this I feel a bit of disbelief.

I have not felt sorry for myself for everything that has been given to me with Calvin, but it was hard. It has been a long road and I feel safe saying that now that we/he has seen improvements. Being a parent to a child with extra needs can be draining. However, I don't feel sorry for myself because the next thoughts are: he is so content and easy going, any baby is draining in ways, I love him, etc. So, as you can tell, there really isn't anything to dwell on, but much to rejoice!

Thank you for your prayers. I will be finding out if he comes home today. All that hinges on how he ate over night and whether or not his chest xray shows improvement since yesterday's. The next update I have will likely be to say he is home, how great is that?! Praise God!

Oh, sorry for the lack of pictures, I'm feeling too lazy but I'll get them up when my life is not so busy. I could sure use some sunlight and down time at home. I don't know how I did it with the NICU stay. I never want those days again.

Friday, November 19, 2010

3 days Post Op

I failed to mention yesterday (and cannot remember if I did on Monday) that a fill-in Pastor from the church I went to growing up has come to visit Calvin a couple of times. Those have been nice surprises. I do believe that speaking with God has helped aide Calvin's recovery. I also believe God is really good to focus on when the going gets tough AND progress is being made. God is in Everything. Therefore, I try to give it all to Him. I was not always like this. However, that journey will be another post. It did not start with my experiences with Calvin...

Calvin... Calvin has forced me on my knees however. I make a choice; it's either get up and run, or stay put and let God do the driving. I feel as though I've gotten more stressed with each passing day. I do believe it is because I realize with each day, how blessed I am. I know, blessings do not lead to stress. That is not exactly what I mean. I mean, each day Calvin heals more and more and I know that I am his mom and I should be there for him. However, I know that God is with him always and I find some peace in that. As you can tell, I have a ways to go on this journey, or I would find complete peace in that.

Calvin will likely be coming home in the next couple/few days. He was weaning off of oxygen and working on eating yesterday. Calvin was down to 21% O2 when I left, which is room air. I want that stuff off his face. See in the first picture how that tape left some damage to his poor little cheek? It is that and the other stuff stuck in him that temps me to pull it all out and run with him. I hate that in there. Again, I know he needs it right now.

I was also stressed about the feeds yesterday. He was not eating. He ate a bit over night but not much for me during the day. Well, it was thickened. At about 5:30pm the nurse suggested trying Pedialite. I didn't think he'd take it because it is thin. Well, guess what, he did! He also ate some straight breast milk after that too, totalling 4 ounces! I am pretty anxious to get there today and find out how he did overnight. The nurses and drs are very aware of his aspiration history and are watching/listening for that. His lungs sounded clear after that 4 ounces and he will have another chest x-ray this morning that should show if he aspirated overnight. This whole aspiration issue has been huge on my list of prayers. I pray that he no longer aspirates. Feel free to pray about that, too ;) God, if it is your will, help Calvin so he no longer aspirates. (I like to think God appreciates the simple prayers as much as the more complex).

Finally, Calvin was awake all but about 1 hour. The nurse even said he is one of the most alert babies she has seen. He watches everything. He moved down the hall (meaning he is less intensive in care needs) and twisted his little body to look all around as he was being wheeled there. The nurse thought that was so cute and she called him nosy! This is the other reason I want to take him and leave, he is so hard to walk away from when he's alert and looking around. I want to just hold him and snuggle.

Well, sure was a long update. I'll try to get another one in today, but it might not be until tomorrow. Godspeed!
Just a cat nap.


6:30pm and wide awake all day, but would rather talk to Grandma!

Wednesday, November 17, 2010

2 days Post Op

First, I must say that I am loving blogging. It is fun. I am discovering that we are all more alike than different! I know that is vague. I'll explain another time. Okay, maybe I'll explain now. I have been able to start relationships with other people who have blogs. Comments (you know, that spot at the end of the blog that no one seems to notice?) on some of them are really delayed interactions and I got myself involved in one with her family, one that reminds me of my own - sarcastic, funny, caring, and...funny. I like that. By the way, I do not feel sorry for myself for not getting many comments, but I thought I'd point out that I often hear crickets when I come to check if anyone has anything they'd like to say, even if it's "suck it up Sally". Wow, I'm feeling a bit sarcastic this evening, maybe it's the lack of sleep and added stress.

Okay, next...Calvin. Calvin is 2 days post op and making huge gains. He ate 3 ounces today. No, it was not perfect. But, when I left, he was content. So, I'm taking it and praising God for all He has done for Calvin.

When I got in this morning, I was informed that Cal had a rough night and even pulled his arterial line out (on his right wrist). He had an NG tube in to suck out the bile in his tummy (yuck). He was bloated. Well, the consensus with the doctors, nurses, and I was that he should get off as many meds as possible. So, when I left tonight, he was only on tylenol, lasix, sodium, potassium, and saline solution to keep him hydrated until he's eating more.

The best part was/is that Calvin is acting more like himself. Oh wait, the best part was that I got to snuggle with him for a couple of hours today. Even Grandma Jo Jo had a turn. Tomorrow there will be lots of extra snuggles cuz lots of extra people are going to visit him. Well, maybe just a few. Okay, I can tell it's time to get to bed. I'll post more tomorrow! Thanks much for all the prayers, God is good!

Calvin did not stop as much to breathe while he ate his 2 ounces!
I think he held his head up better than he has yet? Could that be?

1 day Post Op

Joe and I arrived at about 10am on Tuesday. I slept pretty poorly the night before. I really did not have much anxiety Sunday night, but made up for that Monday night. It is just hard to walk by Calvin's room and have it vacant and know he is over an hour away. Plus, I really do not want to miss anything or not be there for him. Yeah, I know, he's fine! But, I would not be doing my job if I didn't want to be with him as much as possible.

That said, I will be bringing stuff to stay tonight (Wednesday). I am thinking it will be another big day. Yesterday was HUGE! When we walked in, Joe noticed the chest tubes were out. Calvin was also starting to come to because he was having his breathing tube removed. In order to do so, he had to start waking up but then we had to help hold his head still so that his movements would not cause more damage to his throat. It was then that I felt he was a tad bit warm. He cooled off by the end of the night though.

Calvin never fully relaxed when I was there. He is definately on pain meds, so it was different than seeming like he was in pain. I felt bad that I could not hold him more.

His catheter was removed in the afternoon as well, so he's down to blow-by oxygen with a nasal candula and a line in each arm; one to a vein, one to an artery, and the line in his neck. I did finally get to hold Calvin at about 5:30 when I tried getting him to take a bottle. He relaxed just a tad bit more but did not seem very interested in the bottle (sugar water). He was just too loopy still. You can tell his airway is/was not the same either with his hoarse cry.

Well, he is doing very well and I am anxious to see what tomorrow brings. I trust God's plan and remind myself of this passage that a friend sent me a few days ago:

"Do not fret or have any anxiety about anything, but in every circumstance and in everything, by prayer and petition (definite requests), with thanksgiving, continue to make your wants known to God. And God's peace (shall be yours,that tranquil state of the soul) which transcends all understanding shall garrison and mount guard over your hearts and minds in Christ Jesus." Phillippians 4:6,7
taking out the breathing tube

he looks alert, but it's a bit deceiving

some of the monitors

Monday, November 15, 2010

What a day it has been

We arrived for surgery around 10am. Calvin was such a trooper on only 2 ounces of milk since 9pm last night. We talked and he listened and talked back. He napped on and off. He did not fuss much, which made it sooo much easier on me. I felt bad that he didn't get to eat and had this day ahead of him. Well, it's behind him now and he is doing well. I am home and going to get a good night's sleep to go back in the morning.

There was some pre-op stuff to do with him and the anesthesiologist and surgeon came and spoke with us around 11:30. Then a fill-in pastor from our church came to say a prayer. He was a nice surprise! The anesthesiologist came to get Calvin and a few of the medical staff said they would take good care of him. That was very nice to hear.

Surgery started around 1:20pm. Dr. Sutton, who was supposed to be in St Paul all week - so a nice surprise, stopped in and said that things were started and looking good but that the surgeon, Dr. Overman, was concerned about the mitral valve. Dr. Sutton said he wasn't but Dr. Overman was. Well, I thought I'd rather hear it the other way around, but my brother Craig had a good point that it is Dr. O's job to be worried about it! That made me feel better. So, at about 3:30 or so, Dr. Sutton came in and said Calvin's heart was beating on it's own and they were working on getting him situated for the ICU. Dr. Overman came in after that and explained some things about what was found during surgery.

Calvin's left ventricle was/is small. It is small due to thick and extra tissue. Therefore, they left a small (2-3mm) opening in between the left and right atrium in order to get the blood pressure they wanted. So, he has a lower blood O2 saturation level. Yours and mine is 100% (should be) and his might be more like 85. That is a bummer for me, but I am holding on to lots of hope that God can improve that if it is his will. Calvin's heart could begin to have an easier time pumping, would thin out that tissue, and the ASD (atrial septal defect) would no longer be needed - so to speak. Also, that ASD could close up in time as well.

We came home to a home full of laughter and food! Thank you Beth, Kristi, Doop, Katie, and Grandma for all of the goodies! I think I ate more than my share of cookies! Less treadmill, more cookies...this week anyways!

God, if it is your will, please help Calvin's heart continue to improve and heal quickly. Thank you for the wonderful team of people whom we placed in Calvin's care today. Amen








Sunday, November 14, 2010

Tomorrow is the big day!

Tomorrow is the big day for you Calvin! I wish you didn't have to go through this. It was hard enough watching your arms be poked on Friday for your pre-op. It makes me feel like a failure. You do not deserve this. However, I am sure that it is not a coincidence that your blood type is B+. It is going to be better real soon. My prayer for you is that you can feel like you should and be off these meds, breath easier, eat more efficiently (nurse and you'll get lots more snuggle time!), and start holding yourself up stronger. You are awesome and Dr. Sutton said you are in the category of kids he expects to do well. I was happy when he said that. I expect that too because you really have done well! You have been eating good but have slowed down now. I'm guessing you won't feel much like eating this week but I'm excited to see if that changes. I think you'll have a swallow study before we leave the hospital. There are lactation consultants there too and they will help you, so let them! I will do EVERYTHING I can for you! Your dad and I will be there as much as we can. We will have to come home and see Evan and Nolan too but it will be very strange not having you there. I'm curious what Nolan will think. He's your buddy you know? Evan is your big brother who will carry you through tall weeds (like he did for Nolan this summer) and Nolan is your big brother who will tell you to try things that I wouldn't want you to! I am proud and grateful that God chose me to be your mom. You know, only 1 in 900 mom's get to have this experience. I feel blessed! Well, I will be saying lots of prayers for a quick and FULL recovery! I love you Sweet Baby Calvin! xoxoxo Mom

Friday, November 12, 2010

PreOp

What a long day. I am exhausted. Joe has been out of town for a couple of days and I've been non-stop. It took too long to get to Children's in Minneapolis. The GPS was messed up (I think I said another word because I was getting impatient) and I finally shut the thing off. It was easy to get there and easy to get out of once we got it figured out. So, now I know. (By the way, I feel in a fog right now, so hopefully this makes sense - I have to delete and delete and delete as I type because my brain is not functioning at even 90%).

So, we get there and meet with Dr. Sutton after doing a quick weight and height check and an EKG to measure his heart rhythms (too lazy to look it up). His weight there was 10.10 and I'm not sure but 1 lb gain in 2 weeks?? Plus, a weight yesterday on a different scale and he was 10 even? Well, the gal said it could be water retention which would be another sign of further/developing heart problems. Okay, that is backwards from my thinking! Anyways, I don't have energy to analyze that. Calvin had another chest x-ray and I'm bummed I never heard or remembered to ask how that was. Then, we moseyed over from the new Specialty Clinic to Children's and had to meet with an ICU nurse to do intake questions and such and go over details. Calvin had blood drawn (an ordeal and I eventually left to get my pump and hoped I'd get back to it being over with, which it was). All his lab work was excellent! Even blood glucose - regarding the Guar in a previous post. Yay! Poor kid was not happy and was very tired. We toured the cardiac ICU and I must say, wow! Much more fancy than the NICU in St Paul. Bigger rooms with a tv and xbox and bathroom. Hmm, I'm too tired. I think that covers it. We didn't get home until 7:45pm - 8 hrs after leaving for the place! This is still surreal to me and it's just a strange position to be in. Who'd have thought that this world is full of stuff such as this?

Wednesday, November 10, 2010

Ice Cream treats

I ran to the grocery store tonight to pick up some goods before Joe left town and the weekend crept in. I went alone and it was a good thing. I have not gotten much of a break from the kids, mostly Nolan and his teething crankiness and lack of naps. You'd think he'd nap considering all this extra outside time and our little morning outing...swimming! I'll get to that in a second, but first, back to the shopping.

I worked my way through Family Fresh (which is nice instead of the Super Walmart I usually go to for a one-stop-shop). It is where Joe and I used to do the majority of our shopping, back in the day, prior to kids. Super Wally opened right before I had Evan. I remember walking through it and calling Joe to tell or ask him something and he thought maybe I was in labor with Evan. Again, I digress.

Well, I rounded the corner of the frozen section, after picking out an ice cream treat for the evenings while Joe is gone (I picked out the 14oz Haagen-Dazs Chocolate Chip Cookie Dough and a Mint, mmmmm). And what to my wandering eyes should appear? ... the infamous frozen snowman and santa ice cream treats, my dear (like my 'twas the night before... reference?). You know those I'm sure. They are sometimes mint flavored and they are in a box. Well, that took me right back to the pre-children days and shopping with Joe. We bought those things even as far back as the college days. Joe and I have been together a long time, 15 years. We used to do a lot of grocery shopping together and when I saw those, I missed it. I missed those days when we were more connected than we are now. We do okay, but it is very difficult with 3 young children.

I love having those feelings and memories come to the surface. I came home with that "old" feeling and I miss that. I miss him. He left around 7:30 and for the first time in a long time, I missed him when he left. I wish that would never fade. I guess I'll have to hang out in the frozen section when I need a boost.

So, as you can tell from the pictures, we went swimming this morning. It was really hot in there and the camera was all foggy. Joe took the morning off and came up with the idea. We need the extra time together before next week's mayhem. Well, maybe it was just practice for the Dells...