Our Summer...

Okay, I know I'm a little behind on updating. I've had several emails asking when I'm going to update next so I'm finally doing that.

We are having a great summer. We took a week off over the 4th of July and spent some quality family time around home. Matthew is doing great. He is finally sitting up on his own. He is rolling all over the floor and he just started getting up on his knees and rocking a little. Where has time gone? He is growing up so fast! His 2 bottom teeth are so cute. He loves showing them off. We think he is working on those upper ones now because his gums are swollen and he chews on everything.

Taylor is a huge help with Matthew. He admires her so much. He is constantly watching her and wants to be right next her. The cutest thing is to see them playing together. She loves to cook with her play dishes and Matthew eats everything she cooks. He sits right in the middle of all of the dishes and Taylor serves him. She also loves reading to him. We love listening to the stories she tells him. She has a very vivid imagination. Bath time is also a big hit in our house. They love to play in the tub together, sitting and splashing.

We went to Wildlife Prairie Park and the kids loved it. Here are a few pictures and a video of our fun day.

Taylor's backyard sprinkler fun with her cousins Jordan and Brandon...

July 4th was so much fun. Craig's brother and his family came over and the dads camped outside with the kids. I stayed inside with Matthew (I'm not much for tent camping!). Aunt Patty decided to stay inside too.Taylor enjoyed it so much that she keeps asking to do it again. We had a camp fire and we enjoyed some fireworks that daddy and Uncle Chad displayed for us.

Matthew was very cranky for a few weeks and was having some screaming episodes at night. I called his cardiologist and he wanted to see him. They had some concern with the coarctation of the aorta. Matthew had an echo done and everything came back okay. Matthew is so much more active now so having the echo done was very interesting. Thank God for Gerber Puffs. He ate half a bag and we dipped his paci in Sucrose (sugar water - one of Matthew's favorites in the PICU). Dr. Hasselman decided to run some lab work while we were there to make sure his medications aren't damaging his kidneys. They came back fine too. We are leaving him on his blood pressure medication awhile longer before we start weaning. He is still running on the high side. All in all, we are assuming the fussiness is from teething. Matthew doesn't have any tolerance for pain, but then again who can blame him after everything he's been through.

All is well in our family. We're just enjoying our summer and some great family time. Thanks for keeping up with our family progress. Matthew is doing well and he is has joined his sister in being the highlight of our summer!

Matthew Has A Lot To Say . . .

Matthew is growing and doing well. He talks all of the time and is so much happier! He sleeps through the night and has finally started a morning routine that is like clock work. I'm still working on a routine for the afternoon. I'm all about the schedule (it works best for the kids and me).

I have one more week at home and will be heading back to work 3 days a week the following week. Hopefully, Matthew will adjust to the new routine and take it easy on his sitter. We have several doctor's appointments next week and Matthew will finally start on his immunizations. He had his last RSV vaccine today and was released from Home Health Care. One less thing!!!

Matthew's personality is really developing. He is so funny. He talks and talks and talks (I have no idea where he gets that trait) and loves chewing on his hands. Taylor is his main source of entertainment and she can get him to laugh quicker than anybody. His new thing is to blow bubbles and make a funny noise while doing it. He is so interactive and we are enjoying every minute of it.

Matthew is a Momma's boy and I love it. Taylor has always been a Daddy's girl so it's nice to have my time too! Sorry for the lack of updates. We are enjoying the quiet time and living a normal life again. I will update next week after all of the doctor appointments. By the way, Matthew hit 13 lbs today and we felt like throwing a party. What a milestone!! He will be back on the charts before we know it.

By the way, Craig and I have volunteered to answer telephones for the Children's Miracle Network telethon that will be aired on NBC in June. Matthew will probably get to sit with Mom during the TOUCH hour which is for all of the heart kids that have stayed at the Children's Hospital in Peoria. We will be providing some information on how you can help make the telethon a success for us very soon.

Have a great day!

Home Again...

We just wanted to give everyone a glimpse of how Matthew started his day today and an even better glimpse of how his day ended. It's a pretty happy ending.

Matthew will be 4 months old tomorrow and we're happy to say that we got him home from his fifth and hopefully final stay in the hospital this afternoon.....for another 2-3 years anyway. As Amy mentioned before, the charting, measuring, weighing, monitoring...it's all done. Yeah!

We are still going to provide very regular updates on Matthew's blog, but we're also going to try to live some sort of normal life for a while and just enjoy a very smiley Matthew. From the day we got him home after the first surgery, the second surgery was never far from our mind, but surgery number three is so far away that just maybe we will be able to not think about it for a while. Instead, we will do a little day dreaming about what kind of plans God has in store for this little boy as he grows older....we have a feeling it's going to be something special.

Thank you all so so much for the prayers and support over the past four months. They have meant more than you will ever know.

Restful Sunday . . .

Matthew had a pretty good day. He is no longer on any pain meds except Tylenol. The only thing going through his IV is fluid to keep him hydrated. The highlight of our day was seeing him smile. We haven't seen that beautiful smile since he was being wheeled into surgery. It melted our hearts to see him finally feeling better. He is still uncomfortable when he is being held so he would rather be in his bed. Matthew spiked another low grade fever this afternoon. His blood work came back okay, but we are still waiting on the cultures.

Matthew is still refusing to eat. He seems to have a sore throat so we're not pushing him. He has done this to us before. Deb, one of Matthew's nurses, reported to Dr. Fortuna that Matthew wouldn't eat and asked his opinion. He answered by saying, "It's Matthew, he will eat when he decides he is ready." All we could do is laugh because we know exactly what he is saying.

We are hopeful that tomorrow bring lots of eating, no infections and some quiet rest. Sunday has been a great day and we are ending on a high note with that beautiful smile!

Crazy Day . . .

Wow, what a week. I'm not even sure what day it is. Craig has been doing such a good job keeping the blog updated, I've been able to focus on taking care of Matthew. We came home early tonight to get some much needed rest. Matthew had a good day overall. His vitals look great and he seems to be recovering very well. This recovery has been hard to watch. He is in so much pain and wakes up screaming every 2 hours. His voice is very hoarse so when he cries he doesn't make much noise, he just turns red and his blood pressure and heart rate go sky high. It is so hard to see my baby in so much pain and there is nothing I can do to fix it. He looks at me with those big blue eyes and is so confused as to why I'm not picking him up and cuddling with him.

Matthew was given a bottle of sugar water to see how his stomach would handle it. Nurse Practitioner, Kelly, helped as we fed him. Matthew loves Kelly!

Matthew was given a bottle this evening and he ate 3 oz, what a champ! This seemed to relax him and he was sound asleep when we left.

Thank you so much for all of your prayers. God has been so good to us. The next few days will be tough for Matthew so please keep those prayers coming. We truly feel blessed knowing that we have all of you praying so sincerely.

Love, Amy

Thank You...

Hi Everybody,

We're sorry we haven't been updating as much lately. This time it isn't because things have been crazy, it's because things have been going so amazingly well. As we mentioned before, Matthew gets to skip his next appointment with his heart surgeon because he's doing so well. He's actually slept all night a few times now and when he doesn't he usually just takes a quick bottle and goes back to sleep. No more inconsolable crying fits. He still fusses 4 or 5 times each night (Dad usually doesn't notice) but will usually go right back to sleep once we help him find his pacifier. At his last appointments his Doctors briefly toyed with the idea of taking him off of one of his blood pressure medications. In the end they decided not to take any chances but just being at a point where reducing meds is being discussed feels like a blessing.

Amy just finished her third round of antibiotics for a lingering sinus infection and is finally feeling better. Taylor is just starting round two of antibiotics for the same thing. Some how (by the grace of God) Matthew has managed to stay cold free this winter. We believe wholeheartedly that this is because of the faithful prayers everyone has been sending up for us. We're especially grateful for our church family at Richland. We haven't had an opportunity to thank you for the meals, gift certificates, cards, reading material and many prayers, but it hasn't gone unnoticed and we will be eternally grateful.

As March approaches we're getting more and more nervous about Matthew's next surgery. Although we've loved him from day one, now that he's feeling better we're able to witness his personality and we're getting more and more attached to this very smiley baby boy. He loves to be talked to and rubbed...pretty much any attention we're willing to give him he's happy to accept.

Please continue to keep Matthew and our whole family in your prayers. We're taking one precious day at a time and we're trying not to look too far down the road although we still know what is just around the corner.

Love, Craig & Amy

P.S.
By the way, we've heard from a few different people that they have considered putting comments on our blog but haven't for one reason or another. Please do. The encouraging comments and helpful suggestions have been great and we can't wait to read the next one.

Momma's Boy...

Mommy Rules!

Medicine Time...

Matthew only has one medicine that he truly likes and one that he truly dislikes. In fact he would probably rather have us squeeze mustard into his mouth than take his Prevacid. Otherwise he just furrows his brow and chokes it down like you see in this video.

A night in the life of a sleep deprived Mom who also happens to be fighting a cold....

8:00 pm Bedtime for Taylor - Book reading, prayer and kisses

8:30 pm Matthew gets a bath, a shot, 3 medicines and a bottle

9:30 pm Matthew goes to bed

9:45 pm American Idol on DVR

10:30 pm Sanitize 15 medicine syringes used throughout the day, and clean up kitchen

11:00 pm Make sure all feedings, poops, pees, medicines, weight, oxygen saturation and heart rate monitors from the day are documented correctly. Make sure we have all medicines needed for next day.

11:30 pm Matthew takes a bottle

12:00 am Bed time

2:30 am Wake up to crying Matthew. Rock for 5 minutes. Put pacifier back in mouth. Put Matthew back to bed. Document in chart that Matthew ate 4 ounces (even though he didn't eat). Dad hears nothing.

2:40 am Back to bed

3:30 am Wake up to crying Matthew. Feed him 4 ounces. Put Matthew back to bed. Document nothing. Dad wakes up, thinks to himself that it must be Moms turn and falls back to sleep.

4:00 am Back to bed

5:30 am Wake up to crying Matthew. Rock for 5 minutes. Put pacifier back in mouth. Put Matthew back to bed. Document in chart that Matthew ate 4 ounces (even though he didn't eat). Dad hears nothing.

7:00 am Dad wakes up to crying Matthew. Tells Mom he'll take this one. Feeds Matthew a bottle. Pats himself on back for doing such a good job.

7:30 am Moms gets up to feed Taylor, gives Matthew shot and medicines and prays for opportunity to take a nap some time during the day.

8:00 am Discussion with Dad regarding how many times Matthew ate during the night. Chart says he ate at 2:30 and 5:30. Dad says he ate a 3:30. We laugh it off and go on with our day.

Feeling Good...

Matthew is 2 weeks old today and he decided to celebrate in style. The ventilator has been out for about 9 hours now and he's still going strong. He appears to have the energy to continue breathing on his own. Coming off the ventilator also means he will be sedated less and will be awake more. He was awake for a solid hour this evening and was very interested in everything his Mom had to say. We were able to interact with him more in that one hour than we have in the past 9 days combined.

But, Matthew's congenital heart disease will keep us humble ...around 5:00 tonight Matthew had to have a pacemaker attached to his heart. This is a relatively common event and thankfully they had left the electrodes attached to his heart from surgery so all they had to do was plug it in. He's a pretty relaxed boy from a heart rate stand point and they don't like babies in the PICU to drop below 110 beats per minute. There have been a few times over the past few days that Matthew's heart rate has dropped to the mid 90's. When it happened again this afternoon they decided it was time to connect a pacemaker to ensure he stays at or above 110 beats. This shouldn't be too much of an issue. Hopefully he will be able to come off the pacemaker before he comes home.

This wasn't a bad day though...this is definitely a day we are celebrating.

Cuddle Time...

Friday was a wonderful day. The feeding tube came back out early in the day and he ate very well for us at the 3 feedings we were there for. All of his stats continue to look good.

We were finally able to talk to the surgeon (through polite persistence - Thanks for the suggestion Danielle) and set up a time to meet with him Saturday morning to go over the details of the surgery. At this time, surgery is scheduled for 7:30 am.

We also got to hold Matthew for the first time since he's been in the NICU. Once we got him in our arms we wanted to hold him forever.