Thursday, October 20, 2011

Home Sweet Home

We are home.  Calvin and I got here around 6:30 last night.  I am home from work today to catch up on work and a bit of recovery.  We are keeping him out of daycare for hopefully another week.  I am very gun-shy about returning him because I NEVER want him to get that sick again (I just want to keep him in a bubble, not that daycare is a problem).

His oxygen was up to about 95% by the time we left (an average I'd say).  He is still coughing, but not as much.  He has lots more energy than just a couple of days ago.

I have too much to do so I am getting off the computer and getting the kids some steel-cut oats.  I am then going to order a NoseFrida!   

More to come after life settles down :) Okay, that will never happen...

Tuesday, October 18, 2011

Breast-milk!

This hospital stay has been interesting.  The doctors expressed concern regarding Calvin's size (gasp, we haven't been down this road!?)  Anyways, they wanted to test the calories in my milk.

Okay.

Well, various tests throughout a 24 hour period give my milk about a 21 calorie per ounce average.  I say about because I need to double check on one of the numbers, if it was 20 or 21 or in-between - but the answer does not change the point much.

Formula has 20 calories per ounce unless it is a special fortified version.  And, Calvin is 15 months old.  The milk I produced a year ago would logically have had a higher amount of fat.  That is the typical trend: Mom's store "baby fat" to be used for nursing.  That fat should run lower and older babies and toddlers do not need as much fat.  Our bodies know what to do to not only reproduce but to support what is most nutritionally sound for our offspring.

Anyways, I was relieved to find out the calories.  I figured it was enough, but now I have the numbers to go along with it and support what we are doing. (By the way, this is based off of testing the amount of fat in the milk, not protein or carbohydrates)

The lactation consultant I have worked with was one that helped me when we were in the NICU, so it is neat to be able to be at a different point in the process than we were then.

We started chatting a bit about nursing and breast-milk.  Here are a few things I learned:
  • Some people are starting to consume breast-milk to treat gut related issues like colitis and also some cancer patients are using it for treatment.  
  • There are stem cells in breast-milk!  Very interesting!  I can imagine the potential use could be huge.
  • Research is pointing towards breast-milk being correlated to a gene linked to obesity.  In other words, the milk may trigger a specific gene or the genetic make up could be transfered via breast-milk - I was not clear on that but there is time to learn.   
  • Older babies, 12 months on up, can nurse sporadically.  A mothers milk supply will stay in tact even if the toddler does not nurse every day.
  • If I am healthy, I should be kissing Calvin because when I will create antibodies to help fight any illness he has.  I knew that, but I did not know that my body also receives those messages while he is nursing.  They are also transfered to me through my skin/nipple
  • I asked why I was so sore for a couple of weeks with each of the boys.  She said plain nipple soreness is because they are supposed to be sensitive so my brain registers the nursing and knows to produce milk - part of an insurance policy you could say!
Joe also told me last month that babies do not produce their own melatonin until around 6 months of age.  Prior to that they get it from...breast-milk!

This food was made for humans.  Cows milk?  Not so much.  I cannot wait to learn more!

Update from Calvin

I am sleeping right now.  I have not had much of that.  Yes, I know, I should not be able to sleep and blog at the same time, but I also cannot type either, so you get the idea!
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Anyways, I am still here at the hospital.  I have been getting better but it will take awhile.  Did you know it takes about a month for pneumonia to clear up?  That is a long time!  I should feel lots better though in just a couple of weeks.
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I am now on high-flow oxygen and I like it much better.  It is humidified, warm, and through it I can receive, as needed, saline and albuterol nebulizers.
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I am getting all of this because I was feeling yucky on Sunday night and my breathing was labored (lots of retraction and fast paced) and I was getting really stuffed up.  The doctors took another chest xray.  It was not better, but they didn't expect it to be, they just wanted to make sure it was not worse.

I was very happy to see some people come in yesterday.  I waved and said 'hi' (in my own way).  I was also happy to see some of them go and waved 'bye'.  No, that is my mom's attitude.  However, I am tired of some things here as well.

Like I said, I have not got much sleep.  Well, just as I fall back asleep people come in.  One of the resident doctors came in when I was sound asleep and yanked the tape off my face just to see how I'd do without the extra oxygen.  That made my mom unhappy because I woke up and cried.  I am tired!  She is now going to tell people they have to leave me alone when I am sleeping.  Actually, she has had to do that a couple times already.  She wants it to be about me and what I need, not what they need.  Those things can happen when it works better in my schedule.

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I started this post this morning and it is now the afternoon.  I am with Grandma Jo Jo.  Dad came and saw me for a few hours and Mom went home to be with Nolan.  She is staying home until she sees my brother Evan after he comes off the bus.  She says she misses them too and it is hard to be in one place at a time.

I decided I would take a bottle again today so she could get out of here.  I did not want one yesterday.

I got up at 1:30am yesterday morning and was awake until 6.  My mom was not feeling well so she went home at 2:30 to sleep.  The staff - I think a doctor student - called my mom because I was "inconsolable".  I was tired and needed a familiar face.  So, she came back by 10am.  Then I barely slept all day (again, the resident woke me at 7:30 to look at me!) and finally zonked out at 10pm.  I slept until 3:15am and was up until 6.  Then I fell back asleep until the tape yanking incident.

I am a little better today but I still need oxygen.  I also tire out very quickly and need to lay down and rest.

Hopefully I will be able to sleep in my own bed tomorrow or Thursday!  Thanks for your prayers and support!Photobucket

Sunday, October 16, 2011

Another night...

I am actually in bed before 9 and I'm at the hospital.  I should say "Calvin is actually in bed before 9".  I do not think I have the energy to explain all the details.  I am very wiped out and have another head ache (I do not hardly ever get them).

I thought Calvin had an excellent day yesterday and was hopeful today we'd be home and I'd be in my own bed.  Wrong!

Boy oh boy though.  I was in the shower here and thinking about this journey.  I realize I am a critical person and I was determined to stay thinking about the positives.

I have met some wonderful people, for one.  People with their own great, yet challenging journeys.  One ER nurse told me about losing her daughter just 4 months ago. One week before she was born.  Another nurse shared with me that she has a child with Down syndrome.  A 14 year old who has many challenges including being non-verbal and still needing diapers.

Did that scare me?  Not at all.  If that is what happens, it happens.  Sure I want to communicate with Calvin and see him live a fairly easy life.  Yep, I admit it will potentially, in my self-centered mind, make my life easier as well.  But either way, I'd still love him and I know I would learn great things.  Just like the ER nurse who said she has learned more from her daughter than anything else.

We may be here a while.  Yes, this presents great challenges and commands strength.  I am trying hard to stay positive.  And going to sleep will help.  Another update tomorrow perhaps.

Saturday, October 15, 2011

The Verdict Is In

Bacterial pneumonia it is.  Yes, the initial glance at the xray did not lead the drs to think so but a closer look confirmed it.  Negative results on other initial tests, so he is now on 2 different antibiotics than he was prescribed 2 days ago.  He is doing better tonight, lots of wet diapers and nursing good :)

Update on Calvin

I brought Calvin to the dr on Thursday.  He had a chest xray and blood work to check his white blood cell count.  We left 2 hours later after having another antibiotic shot and a script for an antibiotic called Septra.  The dr thought Calvin had double pneumonia because the xray was cloudy.  His WBC count was only slightly elevated (10,800).

He did not improve at all and in fact seemed to be getting worse Friday.  He was with his grandma and she got him to eat about 8 ounces of milk.  He was lethargic and when I got home from work he was warm.  Checked his temp and it was 99.5.

Earlier I had called the dr to give an update and express my concerns but I had not heard back from him.  I wanted to bring him in but was struggling because the idea was that it was too soon (not my thoughts, but those of who I talked to when I left the dr his message).

The dr called me around 5:30pm and said he looked at the xray with radiology and they thought yes, he has pneumonia.  After updating him, the dr told me to bring him in to the ER.

Did that.  We were in New Richmond until about 8:30pm and were then transported to Children's in St Paul because of this pattern of not getting better and still having fevers (it was up to 101.8 in NR).

Got to St Paul and got out of the ER around 1:30am (moved in to the hospital).  There are lots more details of basically not being sure what is going on.  It is hard to know the full story and relay every thing so many times to people who are seeing him for the first time.

At this point we are waiting to find out if it is bacterial or viral.  I have heard many things, including it is not bacterial pneumonia to it is asthma (with a fever ?!)...

We'll be here a while and I'll update when I know anything.

Wednesday, October 12, 2011

Strange day...

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All of my appointments were cancelled today.

Dentist consult regarding moving Nolan's bottom jaw forward.  Cancelled.

Calvin's therapy. Cancelled.
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Meeting with photographer.  Cancelled.

So, I visited with my mom and sister tonight.  Calvin joined us.
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He has been improving regarding not choking while eating.  However, he has not been eating much.  For example, he had been drinking about 10-12 ounces of milk while at daycare.  Yesterday he took in around 5 ounces.  He nursed better than taking the bottle.  Today was not much different.

Also, he was up a long time Sunday and Monday nights.  2-4 hours each night.

Joe and I put our heads together and figure it could have been the steroid and antibiotic.  His tummy could be upset - he has had a lot of dirty diapers (we are loading him with probiotics).  He was done with the meds and slept great last night; about 12 hours.  He napped today also and I called Calvin's OT and cancelled because we agreed he needed sleep more than therapy.  Also, he has regressed a bit and is not moving around much, just sitting.
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Anyways, I am getting to a point here...He seemed okay until he fell asleep again around 4:30 and slept and slept and was breathing faster.  He fell asleep in my mom's arms and when I took him I could immediately feel the heat.

He has another fever.  I am really bothered.  Calvin will be going back to the doctor tomorrow. This makes me sad, worried, and frustrated.  The poor boy is not getting a break and his development is being compromised.

Expectations

Warning: Boring post ahead!

I tend to have really high expectations.  Just ask my husband.

Often times I am frustrated with him and he will tell me my expectations are higher than his.  Sometimes too high.  This was really eye opening for me.  "Aren't everyone's like this?"  Clearly not.

I have been pretty (okay, very) stressed since going back to work.  I think that being home for 15 months set up some high expectations for what I do here.  I would usually have the housework done by the time Joe got home from work and I definitely tried to have work done prior to Friday evening.  I had these goals because a) I am a goal driven person and b) I wanted the work off our plates so we could enjoy family time - which gave me the goal in the first place.

So, throw in leaving the house for the day and not even getting home until after Joe gets home.  Yep, stress.  Because I am not meeting these expectations.

I was pretty low on Sunday morning.  Partially because I was sick, partially because I had a lot to do at work, and mostly because I wanted to just be enjoying family time at home and not have things hanging over my head.

Well, I went for a run because that usually helps.  It did.  I talk to God the majority of my runs and all of a sudden I thought about expectations and how they are connected to how I was feeling.  "Who says I should be have these things done?"  Me!  Okay, I can take care of that then!

So, my new goal (yes, another goal) is to be very careful with my expectations.  They are healthy when striving for something good/better (like in regards to Calvin) but not when they cross into the zone of  creating too much or repeated stress.

Granted, my brain knows all this, but I honestly need to take time adjusting to actually living this way.  Just like I have adjusted to no dairy and gluten for the past 3 months.  That created stress, but not anymore.  I adjusted.

Saturday, October 8, 2011

I Kid You Not

I am not kidding when I share I was back at the clinic yesterday afternoon.

3 days in a row.  4:30pm, what time is that?  Oh, time to bring a kid to the doctor.  This time, lets bring Nolan and Evan because they have fevers over 100 degrees!

Verdict?  I have scripts for antibiotics because Nolan has one ear that is a little inflamed.  However, I am holding off because I think it is a new virus.

Wait, it gets better.

Joe and I had a date last night.  If we would not have had tickets ahead of time we would not have gone.  So, before I left for the doctor I put Calvin down for a nap.

I thought he also felt a tad bit warm but I'm thinking "no way, he's on an antibiotic".  Mostly I didn't want to believe it.  He slept for about 2.5 hours and Grandma Jo Jo watched him while I took the other 2 in.  When I got back, all 3 were with her until we would get home from our date.

We got home a little after 8:30 (the date is a whole 'nother topic - a good one).  Calvin had a fever of 102.2!  What in the world???

Joe said some medical stuff that translated in my head as "bacterial die-off", "it's a good sign", and something else related to an effect of the shot and oral antibiotic.

I did call the on-call doctor and she said since the other 2 have something going on, we could wait.

As of this morning I want to hang it up and call it all quits.  I feel very bad for the boys.  They have literally had a cold of some sort for the past 6 weeks.  This is strange.  We had maybe 2 all last fall/winter/spring/summer.  What is going on?! I understand it is kids and kids in daycare and school.  But they are miserable and deserve a break.

And so do I.  I would be lying if I didn't say I don't think about resigning from my job.  I'd be lying if I said I do not think about it every single day.

Is this normal?  I am trying so hard to balance and give it time, etc etc.  I am looking ahead at the future of our family and myself.  I do not know what the right answer is.  I pray about it a lot.  Joe and I talk about it and he supports it but wants to give it more time first.

I feel like I am not giving enough of myself to any aspect of my life.  It is partial on all accounts.  And I am stressed.  Hopefully soon I'll find peace with the day-to-day living.  I feel sorry for myself at times and then suck it up and think about how great I have it and how much of a baby I'm being.  That said, it's time to quit wallowing in self-pity and get on the treadmill.  Literally.  Time for a run.

Friday, October 7, 2011

Again, Again, Again, and Again!

Those are the song lyrics floating in my head this morning.

Calvin went back to the doctor yesterday afternoon after another day of still struggling to eat.  Poor guy.

He left with a needle poke and a nebulizer.  The doctor, a different one because I wanted a second opinion, said he is not dehydrated and since he was acting fine we had the option to either hospitalize him or do the treatments at home.  We opted for the comforts of home.

Calvin was given an antibiotic shot because of the double ear infection and how the drainage from his ears and sinuses is causing breathing and eating problems.  So, we did not give him the azithromycin last night but we did give the steroid and breathing treatment.  He is going to have treatments prior to or while he eats because we do not have a mask (should we have a mask??) and he does not want that thing in his mouth.  I plan to hold it by his nose and use a blow-by method.

Colds have another grip on the older two who seem to be back to coughing these past couple of days.  And, I am fighting something.  I took a lot of Vitamin C and an Airborne yesterday and I'd say I woke up in no worse condition.  I call that a success.

Joe?  Of course he is not sick.  I figure he is not the one being coughed and spit on so his chances are pretty slim.  I am grateful to have one less sick person around here to take care of.

Wednesday, October 5, 2011

It feels like fall...2010

This feels like something I would have wrote last year:
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Calvin is now coughing when nursing or taking a bottle.  I took him to a doctor this afternoon.  He has an ear infection in both ears and inflamed lungs.  Soooo, he is on an antibiotic and steroid.  If he's not better in 2 days, he's going back in.

I am doing a lot of pumping and we're going to thicken and mix with food until he is over this.  Still some nursing time but only after I've pumped.
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I have been thinking this feels way too much like fall of 2010 rather than 2011.  I realize again why having a healthy child with Down syndrome really makes it easier to accept the diagnosis.  I cherish our nursing time and admit I feel very bummed about this recent turn in events.

However, I am praying and hope we'll be back on track once this illness is done with.
We had Calvin's IFSP today.  He has met his goals and we have new ones set, including cruising along furniture by Easter time!  I cannot imagine.
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Nolan and Evan are okay, they are fighting the same bug and still coughing.
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Finally, I have been so blessed to have the opportunity to take photos for people.  I feel so great afterwards and I am happy with how that is going.  I am working with a photographer.  He is helping with with the photo-taking and marketing aspects so I can make this official!  I am very excited and just want to keep having fun.  My new business name took months to decide on: My Reflections.  (It does feel a tad strange saying I have a business in the making, but I am very excited!)
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I am going to give it an honest effort and if I only take photos of family and friends, so be it!  I love it so it okay with me.  That said, I am going to work hard to expand and offer services to the local communities as well.
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This weekend we'll be in Stillwater, MN for the giant pumpkin weighoff.  Pictures from that to come.PhotobucketPhotobucket

Sunday, October 2, 2011

I AM: More Than Down Syndrome

It is true, people with Down syndrome are slower to learn than those without Down syndrome. It is true that the definition of 'retard' is to slow/delay. However, 'retard' and 'retarded' is most commonly used to insult people both with and without disabilities. When it is used as a synonym for 'stupid' or 'dumb', the word 'retard' degrades the value of those with disabilities.

Since having Calvin I have become very aware of using the words retard, stupid, and dumb. I spend more time thinking about what I actually mean and want to say then find other words. It actually makes me feel more whole because I dig deeper and look longer at people and situations and give them the words that give them greater value.

Since it is Down syndrome awareness month, I thought it would be nice to bring awareness of this issue and show you what people with Down syndrome are capable of and how much they are loved.

If you want to pledge to stop using 'retarded' in the derogatory sense, visit www.r-word.org and join over 200,000 people who've taken action.



Thank you Shannon (Fiona's mom), Anna (older Ellie's mom), Becky (Kristen's mom), Jaime (Jaidin's mom), Megan (younger Ellie's mom) , Nicole (Teagan's mom), Kristin (Harper's mom), Denise (Stevie Joe's mom), Alyssa (Sam's mom), Leah (Cora's mom), Angelica (Isaac's mom), Meriah (Moxie's mom), Monica (Lilly's mom), Melanie (Kellan's mom), Melissa (Broden's mom), Christie (Joseph's mom), Jennifer (Kennedy's mom), Denise (Maddison's mom), Melissa (Rowenna's mom), Susanna (Verity's mom), Catherine (Nathan's mom), Brit (Katie's mom), and Gretchen (Julian's mom).

Saturday, October 1, 2011

Down Syndrome Awareness Month!

This is as close to an "awareness" topic month I get!

I am not sure I can accomplish the Ds communities challenge of 31 for 21, but I will do what I can to honor and celebrate Down syndrome!

Remember that little baby?  Seems like forever ago.  Red hair and less of it.   
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I love him!  He is perfect and I am so grateful for my son.