8 week checkup

Today we had M's weekly doctor appointment. He's gained 4 oz from last week putting him at 8 lb 14 oz. He has grown a tad longer - 21 inches now. So he's basically the size our girls were when we brought them home from the hospital. And I couldn't be prouder of him! We had to put him on another reflux med - Prilosec this time and it really seems to be working so far. He's not crying as much after he eats and after he spits up or burps.
He decided this past week that he no longer wants to nurse which makes me sad. We will keep trying but I won't push it until after his next surgery. We struggle so hard now to keep track of every ml of milk, every gram of weight gain or loss and nursing (though it was the easiest thing in the world with the girls)
I realized he is eating a lot- 650 ml or 20+ ounces/24 hr is a lot for an 8 weeker. He just burns through the calories because of his heart. He still eats every 90-120 minutes - even at night but I'm afraid to make him go longer. If he eats too much at once he throws up.
So much of our life revolves around feeding Macsen, burping Macsen, changing Macsen, pumping for Macsen then starting all over. My mom AKA Nonna drove down from Canada to try to help me keep up with everything else. It has been so great having her here to take the girls for walks, read to them, wash clothes and help me organize. One of the best things is she just sits with Macsen and gets him to eat eat eat! I told M's nurse in Philadelphia they need to send every interstage baby home with a pulse ox, a scale and a grandmother . . I won't want her to leave when she needs to go back home.
Also today Macsen rolled from his back to his side! At the doc's office. Aaron caught it all on video! It was so great.

Recovering.... Phew

We got our first cold last week... ALL of us. It really stunk b/c we didn't go anywhere except his doctor appts which is where one of the girls picked up a bug. Just a cold - sneezing, sniffling, and lots of snot. We hand washed constantly and used hand sanitizer everytime we touched M but he still got sick :( I was terrified. Stupid little viruses send interstage babies to the hospital. Their lungs just can't take any drama. Even though this was a tiny bug Macsen was still having retractions when he was breathing. I took a quick vid with my phone and within minutes his nurse practitioner and cardiologist in PA were looking at it. They told me to keep an eye on it and if it got worse bring him in to the ER. It scared me because here we are coming from one of the best hospitals in the world... And we are very far away from that awesome hospital.
This week was extra sad because one of the moms I came to know while we were both pregnant for our heart babies lost her little one last week. They were home, doing well then suddenly Anya became unresponsive at home. Less than 24 hrs later she was gone. I cried my eyes out when I read her Mom's account of the day... How she never thought this was it... That they would look back on this day a year from now and say "this was just another crisis we weathered together and overcame." Anya was 1 month older than Macsen. My heart is broken for Karen and sister Emoree.
What makes this so hard is how fast the bad stuff can happen. Looking at Macsen I really don't see him as having anything wrong.. He looks so sweet and perfect ... But inside he has this shunt that looks like a tiny straw - it can clot- he has a patch around his attached aorta and pulmonary artery - it can get scar tissue and become obstructed. I keep telling myself to trust everything will be ok. It won't help anything to worry - it will just make me crazy. That being said I do want an in-case-of-emergency plan. I need to know we can get him to the help he will need in time. We see his cardiologist on Monday and will talk about it with her.
We did go to the park today and joined some friends for a picnic. It was the dose of normal I needed to get my head in a better place. Macsen stayed in his baby wrap and slept the whole time. The girls had so much fun playing and completing a scavenger hunt my friends put together. Hooray for normal! Just what we needed.
Macsen was 8lbs5oz today. A slow gain but he's still gaining. We had to double his reflux meds because he was in a lot of pain. He's doing better but he still spits up quite a bit.
He's all curled up in the crook of my arm - just let out a sweet baby sigh. Time for bed.

Practicing His Vowels

Here is Super M right after a bath. The girls were so excited to tell me -- "See?? Macsen DOES know how to speak! He says Oh, oh... WE taught him that!"

Last week Macsen got the sniffles, and has had a lot of drainage. We debated going to the ER to have him checked over, but his Pulse-Ox readings have looked good and he's been eating steadily and continues to gain weight so.....
Don't fix what ain't broke, right? Biggest downside is not being free to bring him everywhere and SHOW HIM OFF!

What they did to Macsen's Heart

Happy Halloween

  Macsen's first Halloween! No trick or treating for our little SuperMac. He and I stayed home while his Dad and sisters went on a neighborhood hayride. they had a blast and we got to edit some fun Halloween pics. The girls got a huge haul and our oldest actually lost her first tooth. A very big day :)

You're not going to believe this :)

On our journey to CHOP in August, 2 hours into our trip @ our first stop at a rest area in Columbus Georgia our cat Miette escaped. We searched for hours and left with me and my oldest in tears. The 3 year old didn't get what all the angst was about and stated "She's just a cat." Ever practical.

Over the coming weeks Rita, the Welcome Center manager, kept up the search and thought she might have found Miette once - texted us a picture and it was so simialr we almost sent someone to go get her. but she was missing the white nose stripe Miette has.

Cut to 10 weeks later - we have been home for a week and  the girls are walking around sadly saying "I miss Mimi" when they see her favorite sleeping spots empty. We even talked about MAYBE getting another cat at Christmas when BAM! Text from Rita "I think I found your cat!!!" and 3 photos of...........................

MIMI!!!! Aaron and the girls left right away and drove the 4 hour round-trip to bring her home that day. She's skinny and a little beat up - who knows what she was living off all that time- but we are thrilled to have her back. Rita said they saw her wandering around for a few weeks and were able to lure her with food. What an amazing thing! What amazing people to keep looking all this time.We feel so blessed - again. Thank you Rita, Pam and all the employees of the Georgia Welcome Center in Columbus. We can never express how deeply thankful we are for this incredible kindness you have done for our family. She may be "just a cat" but we think she's a miracle too.