A Year Ago This Week. . .

One year ago this week, Aaron and I were in Seattle seeing the perinatologists and pediatric cardiologists for the first time. One year ago, we learned about Matthew’s heart conditions, his Down Syndrome, his possible kidney and brain abnormalities, and his two club feet. One year ago, the doctors told us there was no hope for our child – he simply would not live. His defects were unrepairable and “incompatable with life.” And, one year ago this week, doctors urged us to abort our child. When we would not abort, they pushed us to “induce labor early,” to save me from “suffering” through the rest of my pregnancy . . . but so early that our son could not possibly survive.

Thank God we listened to HIM and not to those doctors! We cannot express how thankful we are for our Matthew – our smiling, happy, laughing, playful little Miracle!

Only 3 weeks after open heart surgery, he’s better than ever! His heart healed itself in miraculous and wonderous ways, with surgery doing the rest. It is now working wonderfully! His kidneys and brain never had any problems, and his club feet corrected themselves.  And, he hasn’t needed to be fed with a tube since surgery, because he’s eating well on his own.

He loves to read books, play with toys, “bap” his big brother, roll around, grab his toes, and he really loves his bath! But, most of all, he loves to be held and cuddled, talked to and sung to, and loved to pieces.

Thanks again to everyone who has loved him, prayed for him, and held us up in love and hope for the past year!

2 Weeks after Surgery

Matthew’s surgery was only 2 weeks ago!!  We really thought we would still be in the hospital at this point.  Matthew really couldn’t be doing any better.  He continues to eat well, and he is happy and playful most of the time.  He still has some gas-pain spells every now and then, but they are less frequent and don’t seem to last as long.  Matthew is becoming more and more vocal, making lots of cooing sounds and motor-boat noises.  (The motor-boat makes for some messy meal times!)

He had an appointment with his cardiologist yesterday.  He said Matthew looked great, and cut back on his medications.  He’s still on Digoxin twice daily, but the Lasix and Potassium (the yucky ones) are only once daily now instead of 3x/day!  Hooray!

We went to “Kid’s Castle” today with some friends – what a fun place!  We hadn’t been there before, but we will definitely be back.  Micah had so much fun!  There were big slides, tunnels, and 3 ball-pits (his favorite!).  Micah had never been in a big vat of colored balls before today – what more does a 2 1/2 year old need?  He’s taking a good nap now. 🙂

“That look”

It is really wonderful to have Aaron home this week – we are all enjoying the time together.

I went out to do a couple errands this afternoon while the boys were napping, and a funny thing happened while I was at Costco.  An employee saw me shopping and said, “Now, that’s the way to shop – all by yourself, without the little helpers along!”

My initial reaction was a smile, and I said, “Yes, it is nice.”

Then, I thought, Wait a minute! How does he know I’m a mom? So, I asked him how he knew I usually shopped with little helpers.

He said, “Oh, I don’t know – you just have that look.”

THAT LOOK! What look?  I quickly checked myself for any spit-up on my shoulder or “Lightning McQueen” stickers on the back of my pants . . . nope.  I guess I just have that “mom” look now.

When I came home, the boys were awake.  Micah crawled up into my lap while I was holding Matthew, and we had a good, long snuggle.  Micah looked up at me and said, “Mommy has two boys.”  Yes, Mommy has two boys, and there really is nothing I’d rather be than “mom” right now.

Back in Yakima

We came back home to Yakima yesterday.  It is so good to be home, but it was a little rough getting here!

Matthew has decided that he does not like his car seat, and he screamed all the way from Spokane to Yakima.  We knew he wasn’t in pain because every time we would stop and take him out of his car seat, he would be happy!  We stopped frequently, and took a long break at a park, so it took over 6 hours to get here.  Aaron had to drive separately because we took 2 cars to Spokane.  (We didn’t know if he would have to return to work before Matthew was ready to come home.)  Micah became very frustrated with the crying, and started yelling “No Fussing, Matthew!” to his little brother.  Needless to say, this didn’t help the situation.  We would have had Micah ride with Daddy, but the air conditioning in Daddy’s car wasn’t working and it was over 90 degrees.  We did let Micah ride with Daddy from Ellensburg on, and he promptly fell asleep.  When we got to Yakima, he was absolutely drenched in sweat.  We were all exhausted and went straight to bed!

Matthew had been having some times when he would cry inconsolably after we left the hospital.  We are pretty sure it was gas pains, but he would cry for sometimes 1 or 2 hours.  We have been giving him Tylenol on a regular basis, plus regular doses of gas drops in addition to his other 3 medicines.  It seems to help, as we haven’t had an episode like that for 2-3 days now.

We have an appointment with Matthew’s cardiologist on Tuesday.  We’re hoping that he will be able to stop at least 1 or 2 of his medicines, as it is a lot of meds for the little guy to take.  When we left the hospital, the doctors were pretty sure he would be able to stop the Lasix and Potassium.  We did find that mixing the medicine with pear juice makes it pleasant enough that he will take it, though!

We had a very nice day today – we spent most of the day playing outside with Micah swimming and splashing in his wading pool, then had a nice barbeque with our good friends.  It looks like the official high temperature today was 98 degrees!

8 Month Birthday

Today is Matthew’s 8-month Birthday!

He continues to do remarkably well, still less than a week after surgery.  He spent the day playing, smiling, and wiggling.  We’re not supposed to let him lay on his tummy yet, but it’s going to be difficult to keep him from rolling over!

His “eating goal” is 30.5 oz/day, and the doctors said he may take up to 3 weeks to work up to that goal.  He ate 24.5 oz yesterday, so we’re very happy with that!

Some Pictures

We are really enjoying being out of the hospital.  Matthew slept great last night – he was so grateful to finally have some uninterrupted sleep!  He’s still doing wonderfully well – eating well, getting some peaceful sleep, laughing and playing while he’s awake.

In the hospital the night before surgery:

Last night right after we got home from the hospital:

This morning, I wanted to get a good picture of the boys.  This isn’t quite what I had in mind, but if “good” means “accurate representation,” then these are quite good:

Earlier this week, Micah wanted to wear Bubbi’s reading glasses and “work like Bubbi does.”  It was pretty cute.

Home

Just a quick post – I’m tired and heading to bed.

We are out of the hospital, and very much enjoying having our entire family under one roof.  We were released around 6:15pm this evening.  Matthew is doing well, and seems to be very happy to be out of the hospital.  He really looks great – If you can’t see his scar, you’d never know he just had surgery.

Micah was very excited to have us all home, too.  We had a lot to celebrate tonight.

I will try to post some pictures tomorrow.

Good night!

Going Home

Matthew is going to be discharged from the hospital today.  He continues to do very well, and they have no reason to keep him here!

His heart rate was a little on the slow side, and his heart sounds were quiter than normal, so he had another echocardiogram today, just to make sure everything was o.k. and to rule out pericardial effusion (fluid build-up around the heart).  I don’t have the official word from the cardiologist yet, but the ultrasound tech said that everything looks great!  He said there is no sign of effusion, and his right heart function and pressures actually look better than on Friday’s ultrasound.  Hurray!

We will stay in Spokane for a few days, just to be safe, but it will be very nice to be out of the hospital so soon.  We never dreamed we would be discharged just 5 days after surgery!

Thanks again for all of the prayers, support, and hugs.  We know it is because of all the prayers that Matthew has done so well.

Mr. Hungry Pants

We were mentally prepared for another nasogastric tube or even a gastric feeding tube when we came to the hospital for this surgery. He has never been a good eater and we were told that it often takes a child a while to get his appetite back after heart surgery. We have been pleasantly surprised! Matthew has been eating very well. He is taking more now than he was prior to the procedure – he’s eating better than he ever has only 4 days after surgery! It seems that now that his heart is fixed he has more energy for feeding! Our hopes are up that we can be done with tube feedings.

Mother’s Day and our 6 yr anniversary has been a little unorthodox this year but we have had some time together and will make plans for a getaway for the two of us when things calm down in the future.

If everything continues to go well tonight and tomorrow then the doctors may discharge him tomorrow. We will stick around in Spokane for a few days just to be on the safe side before returning to Yakima. We will update everyone again tomorrow. Good night!

Aaron

Mother’s Day

Matthew is doing really well.  He had a great afternoon yesterday – feeling good, eating really well, and enjoying some visits from friends and family.

He did the strangest thing yesterday, though – something that I can only remember him doing a few times in his lifetime, and every time it has caught me off-guard and surprised me.  He cried because he was hungry!  It took me a while to figure out what was wrong, because he had eaten well only 2 hours before!  I realize that when most babies become fussy, feeding them is one of the first things their mothers try.  But, with Matthew, we have had to coax him to eat, calculating every calorie to make sure he is getting enough, and tube-feeding what he won’t take from the bottle.  He’s never hungry!  Anyway, it is a great sign of recovery, and a great sign that we may not need to tube feed anymore!!!  Hurray!!!!

The night was very much interrupted with breathing treatments every 2 hours in addition to the regular hospital interruptions.  Neither Matthew nor I got much sleep, but Matthew did very well medically.

He’s still eating very well, and it looks like we’ll be done with the hospital very soon.  The doctor hasn’t made it around to see him yet today, but we’ll see what this morning’s chest X-ray looks like and see what he says.

It is very much a Blessed Mother’s Day/Anniversary with Matthew doing so well.  We never dreamed he would be nearly ready to be released from the hospital only 4 days after surgery!!