Wednesday, July 30, 2008

Free Milk

I know this is strange, but another heart mom had success doing this on her blog, so I am going to try. I have a very full freezer full of breast milk that will expire before Mason will ever use it. He nurses exclusively now and wont take a bottle. But I pumped and froze my milk for several months before he was just nursing. I am about to donate it to a milk bank in Denver, but I'd rather it go to a heart baby or preemie etc... whom I know really needs it. Please post a comment if you or someone you know could use my "mommy milk".

Miserable w/ Fever Still & 8 mo. Old Today

It's now been 10 days that Mason has been miserable w/ this yucky fever. We are not sure what is causing the fever though!! The speculation is still that this is an awful virus. We went to Primary's for his 7 week post op clinic yesterday, tuesday, and we met with a new cardiologist, Dr. Pilcher. He is an Electrophysiolgist, who specializes in heart kiddos with arythmias. He was very nice and very thorough.

He is quite concerned about the fever, and how miserable Mason has been feeling. So he ordered an echo, to make sure there wasn't any fluid or infection around his heart. His heart function is fine and no fluid! That was good news.

Then he ordered more blood tests. And that was the sad part of our day. It took over an hour to draw Mason's blood. Finally by the 5th poke they had enough blood. (Cardiac kiddos do not have good profusion , thus very difficult to get their veins to cooperate.) They needed quite a bit more that last week's tests, because they are going to culture the blood now too. Usually I can get through those awful blood draws without tears, but yesterday Mason Kept looking into my eyes crying in pain like he was asking me "why are you letting them do this to me?". That's when my eyes began to fill up w/ tears and soon the lab techs brought me tissues, cuz I was crying along with Mason. I know he does not like green scrubs for sure now!! I kept saying to myself "its okay to have a sad day."

The Dr. told me if his level of infection was worse than last weeks numbers then they would admit him to the hospital! But, his CRP level was about the same as last week, not worse at least. S0 now they will culture his blood for 72 hours to try and figure out what this infection is. They couldn't do that last week because he had already started antibiotics for the "not really" pneumonia. We stopped the antibiotics on Saturday though cuz he was still fevering and obviously they were not helping the infection at all.

We are home at least, but he just is not feeling well. He is 8 months old today! Hard for me to believe. He weighs 12 lbs 10 oz. Yeah! Every new ounce is great. No new tricks yet, because he just has not felt good enough. Hopefully we will get him rolling around more and sitting up real soon. He is still a miracle each and everyday. Please pray he can get over this fever/infection soon ! Thank you so much, Summer

Saturday, July 26, 2008

Thank Goodness it's not Pneumonia

Sorry I have not updated about Mason. He has been so fussy that I have not had a spare minute. This post will probably take me all day to complete! Two days after being on his antibiotic for the possible infection in his lungs I decided to take him into Cardiology at Primary Children's, because he just seemed so miserable & still fevering . I needed to make sure for myself that this was not a heart issue.
The Cardiologist that saw Mason compared his chest x-ray from Monday with his other recent xrays he's had at each clinic at Primary's. He did not seem to think there was much of a difference and that there is a shadow on his left lung in all of them (probably his pulmonary artery ) that may have appeared like fluid. Especially if the radiologist at the AF hospital wasn't able to compare it to his other x-rays. Needless to say, I was glad he does not have pneumonia.
So what IS wrong then? His O2 sats were fine, his chest x-ray was normal and his heart and lungs sounded great to the cardiologist. So, that should rule out symptoms of a heart problem.
But the Dr. definitely agreed with me that he was not feeling well at all. He then sent us to the lab for blood work . The results showed an elevated CRP level (which indicates infection and/or inflammation). With that, the Dr. said to keep giving him the antibiotic, but that we could not culture his blood to find out what type of infection because he had already been on the antibiotic for two days. This would cause inaccurate culture results.
He seems to feel a little better today, but still fevering. So most likely this is viral, and the antibiotics are not helping! Poor little guy. Something that would be minor for the rest of us, is so hard for him to kick. Hopefully we are on the upward swing of this roller coaster loop. He feels all your love and prayers and hopefully will feel all better real soon

Tuesday, July 22, 2008

Under the weather

Mason has not been himself all weekend and then came down with a fever Sunday night (well actually 2 am Mon. He wouldn't go to sleep at all!) And at times through out the weekend when he was so fussy I had to give him some extra O2. Long story made short....after going to the pediatrician Monday evening and his ears and throat looked fine (we had also gone in Friday, with nothing found, and no fever yet) we headed to AF hospital for chest x-rays and an EKG. Boy are we spoiled at Primary Children's. It took us 4 x as long to get those tests run at AF! Anyways, at 10pm we got a call that he has some haziness on his left lung, possibly the beginnings of Pneumonia. So he needed to start on antibiotics right away. And what do you know, the only pharmacy still open was 30 min. away. Even our very kind Pediatrician looked through all his cupboards at home, and the nurses checked the office, for a sample to get us by until the morning. But no such luck!

He seems to feel a tiny bit better today, hopefully we caught it in time. He just does not have much of a reserve to fight this. So please say a few extra prayers for little Mason.

Also, Mason's heart buddy Teagan went in for his Glenn surgery today. We are praying all will go well

Thursday, July 17, 2008

Count Your Bessings

Mason has curly hair and I love it!!!

Mason's Aunt Bridgette gave us this sign to hang by his crib.

I truly count Mason's life as a double blessing each day. I love this sign. We also hung it on his hospital crib while he was there for his 2nd surgery. Everyone passing by commented on what a beautiful quote.

As an update: Mason had his 6 month shots (at 7.5 months old) on Tuesday. He weighed in at 12 lbs 1.5 oz and 25.5 in. ! Yeah! Dr. Whiting was pleased w/ the weight gain and I am too of course. Heart Babies can gain weight exclusively nursing ( especially if they want to nurse every 2 hours round the clock like Mason)! Not that I haven't tried to add fortified bottles, but he is way too picky and way too smart. The bummer was the 104 fever he got that night from his shots (Oh was he fussy!). I just chalked it up for another sleepless night with Miracle Mason.

For the love of Mason, here are a few of my blessings:

*Miracle Mason joining our family (that counts twice!)

*Mason loves to be cuddled (at least he'll cuddle even if he doesn't like to sleep)

*Mason loves to nurse (learning how to nurse at 3 months old is amazing, especially
for a heart baby)

*Mason's beautiful smile

*Mason's adorable curly hair

*Mason loves to babble ("talk") to his family

*Mason rolls over from tummy to back (first time was 2 days ago)

*Mason is so loved by his 3 brothers and 1 sister (they shower him w/hugs & kisses)

*Mason is 7 1/2 months old! (recently there have been too many heart babies who've gone home to Heavenly Father.)

*Mason is a fighter

*All of the prayers & priesthood blessings given on Mason's behalf

Mom and Dad love you Mason!!

Thank you to all our family and friends who continue to pray for our Miracle Mason.

Saturday, July 12, 2008

Crazy Times

Mason continues to do well at home. And he is happy if he is being held (usually by me), nursing, or swinging (but he'll let you know when he needs to be held again after about 10 min!!) . What a little spoiled stinker, but oh how we love him. He is so happy to be off oxygen during the day, me too, and during the middle of the night he usually manages to get it off somehow. He hasn't turned blue on us (and his sats are okay), so I think he's fine without it at night also! I'm just following doctor's orders. We've been going out for walks and he loves to be outside and see what's going on.

The week got quite crazy when I got a phone call from Ammon's preschool teacher (by the way Joanna you are so great). Poor little guy was puking at school! So. then I had to borrow a neighbor's car to go pick him up. Sammi (my awesome helper) was at the dentist with my other 3 kids with the Suburban and Mark was at work. And to top it off, Ammon had to miss out on 7 peaks waterpark that day. Sammi and her family (Our sweet neighbors the Sneeds) took my kids and Ammon had to stay home with Mason and I. So then I spent the rest of the day cleaning up throw-up and "the other stuff" too, cleaning carpet, sheets etc while holding Mason and trying to comfort Ammon. And the germephobe that I have become went through a whole container of Lysol wipes! Mason would not do well if he caught whatever bug it is! Hopefully Ammon does not have that awful chrypto parasite from swimming.

Also, some how that day I packed Katlin, Preston, & Braiden's suitcases for their trip to Cali to stay with Aunt Tiff and Uncle Preston. They are going to surf camp next week in SanClemente, my old tromping grounds. I am so jealous. I was just too scared to take Mason that far from his doctors and Primary's this year. There is always next year. Mom loves you K, P, & B! Have so much fun! You guys deserve it. You are such good helpers at home.

Once again, I am so grateful for life, especially Mason's!

ps. We are planning a fundraiser run called "Miles for Mason" tentatively set for Sept. 27th. I will post more details soon and info about volunteering. Just a little "heads up".

ppss. I have several cans of that expensive Progestimil formula that Mason will not touch and I can not return it. Does anyone need it???

Friday, July 4, 2008

7 Months Old , Post-op Clinic & 4th of July

Happy 4th

Ammon(3yrs) & Mason(7mo.)

"I am 7 months old!"

"Yeah! No more O2's."

This last Monday June 30th, Mason turned 7 months old! What a huge accomplishment. 7 months ago today, Dec. 4th 2007, Mason was by far the sickest child in Primary Children's PICU. That day we were not even sure his body would recover enough, from his "crash" the day before, for the Dr.'s to operate on his heart in attempt to save his life. But he fought to live! And now two operations later is a happy, babbeling, little 7 month old! Believe me, I still have sad moments, wishing he were a healthy baby with a normal heart, but am so greatful for all the miracles that have touched our lives and kept him here with us on earth still today. I now could not imagine my life without him.

Wednesday, July 2nd, Mason had his post-op clinic at Primary's. Bonnie, the N.P. for the Cardiothoracic team, was happy to see him doing so well! He weighed in at 11lb's 10 oz, which is great for him. His oxygen saturation was around 82 at room air (which is good for a HLHS baby), so he is off O2 during the day! Yeah!!! They said to have him sleep with O2 at night just for extra support for the next month. He also got the steri-strips off of his incision and it looks pretty good. So, he finally got to take his first real bath since surgery. And he got the okay to go swimming. My other kids are very excited about this. Maybe next week we will see how he likes the pool ( at our neighbor's house). Thanks to awesome neighbors. Public pools have too many germs! I asked about his "not wanting to sleep" issues and the Cardiologist said he's definitely not ready to "cry it out" to learn to go to sleep by himself. He said his little heart just could not handle that yet, reminding me what a huge surgery he just had 3 1/2 weeks ago (and his 2nd in 6 months). His answer was "just spoil him for now". Like I already don't! I guess Mason and I will catch up on sleep someday. Do you other HLHS heart babies not sleep well either?

Today, for the 4th of July, Mason and I (and Ammon for half the day) have had some quiet(well at least the other half of the day was quiet), and bonding time! Mason just is not ready for crowds yet. The slightest cold or tummy bug would send him over the edge. By my choice, this was the first year in 15 years I did not run the Freedom Run in Provo. I ran my own "treadmill 10k" while Ammon and Mason were still asleep, with the baby monitor right at my side ( Okay, so I am a worried mommy: but with great reason). Mark, Kaitlin,Preston, Braiden and many cousins ran the 10k, 5k, & 1 mile, in my place, and had a great time! Next year hopefully we can all go down and run. It has been a hot, but beautiful day! HAPPY 4TH TO ALL!!

One last thing! Thank you to Kaylynne for my awesome massage last night. She is a sweet friend/ Great Massage Therapist who gifted me a massage when Mason was born and I finally was able to sneak away! It was a much needed hour to myself.