Happy Anniversary Matthew Charles

Today is the one year anniversary of our youngest child, Matthew Charles, coming home. In a lot of ways it feels sweeter and more emotional than the day they were born. Looking back now it's unbelievable he was so small and so sick. We had no idea those first few weeks how serious the situation was when they were born. Matthew spent his first 6 days of life on a ventilator in this position.


This was my first time holding Matthew, August 8th, one week after he was born. I remember it well, I was given the option of holding Matthew or Jackson, and I hadn't been able to hold either at this point. They were only a week old but I remember thinking "wow, already having to choose one kid over another!" I decided on Matthew because I had spent the least amount of time with him. The first two weeks he rarely opened his eyes, spent his time eating and sleeping, which proved to be a smart decision later down the road!


Matthew growing and getting stronger! This was end of August, about a month old, just about to start bottle feeding. He was still in an incubator to help him maintain bottle temperature so we were only allowed to "open him up" at feeding time, every three hours. We had a 30 minute window to touch him and snuggle him before he had to be bundled up and put back inside to stay toasty warm. My mothering consisting of taking his temperature, changing his diaper, hooking up his feeding tube, and sometimes giving a quick bath.

Beginning of September brought bottles! We would work so hard (and him too!) on getting him to eat from this bottle. Every feeding we were allowed 5 minutes and after that he had to go back into the incubator and take the food by tube. It was an exhausting process for all of us! Required full concentration to keep him awake, make sure he didn't choke, make sure he kept breathing and to get that nipple in his tiny mouth. Matthew finished his first 2oz bottle on 9/6 but then would randomly stop breathing or just decide not to eat anything so he wasn't classified as a "bottle feeder" until September 21st.


The last few weeks of September were so frustrating for us! Matthew would be so close to discharge and then stop eating. He would eat so great but then stop breathing for a few seconds and we would start all over again counting down to discharge. We spent a lot of days like this ... me staring at him, willing him to please just eat, please just do what he was suppose to do so he could come home. Me calling the NICU after every feeding to find out if he finished his bottle...it was a very frustrating experience and we were exhausted from the roller coaster!


Finally the long awaited day! Sixty days after his birth Matthew was ready to come home! I realize that everyone is nervous to bring their baby home, but living in the world of premie/NICU stays is very different. You go to the hospital pregnant, you come home not pregnant and with no baby. You pump, you do baby laundry, you race to the hospital to be with them but can't touch them or hold them, and then as they grow you still can't pick them up without permission or make any decisions for them. You sit in the laundry room and smell their laundry because it's the closest you can get to them most hours of the day and you miss them dearly. Time after time you think they are coming home, you get yourself ready, and then it doesn't happen. You get the absolute answer the morning of discharge around 10am after the doctor has made his rounds. And the answer comes - he can go home - and you are scared to death and feel completely unprepared and kinda want to ask are they sure?? Maybe they (and we) need one more day??

The first days at home with Matthew were amazing - we stayed away from the NICU and gave him the time he deserved to adjust and be with us. He slept right beside us in the bassinet the first few nights and no one slept. But there was so much joy and sweetness. A dream that started so many years ago had come true - one baby home....two to go!

Little Neva

Our little Neva (also known as Diva-Deeve, the princess, buttercup, lady bug, rotten, and delicate flower) is growing up. It's almost like she woke up one morning with a huge personality and it hasn't stopped growing. She makes us laugh, roll our eyes, and gives us glimpses of the girl she is going to be. Of course we are feeding into all of her "rotten-ness" by spoiling our girl as much as we can and imparting important life lessons - which is why she got to ride in the cart at Target instead of the stroller with the boys! (This was her first trip to the promise land known as Target - we spent a lot of time in the shoe department - like I said, important life lessons!)

Neva can do a lot of things now, when she wants too. She can pull herself up, crawl, jabber jab all day, hold her own bottle (she only gets one these days), and attempt to take steps while holding our hands. Our favorite thing about her right is that she tries to repeat everything we do (I am sure this will come back to haunt me one day soon). She blinks her eyes slowly in response to a wink. On command she can cough, clear her throat, sniff over and over, cross her fingers, and stick out her tongue. Once when Matthew was sobbing over something she stared at him and then mimicked his cry. She is obsessed with noses. She waves goodbye. She is starting to share her cheerios, but most of the time she snatches them back. When she gets excited she flaps her arms, kicks, her legs and screeches something that sounds like "nnnnaaaa nnnnaaa naaaaa" and I reply "Nana's not here, I wish she was too".

A vivid memory of mine is Granddaddy teaching me how to tell if a watermelon is ripe. You thump the melon, if it makes a certain sound it's ready to eat. Once after a huge dinner Neva's stomach was poking out so I thumped it, told her she was ripe, and she laughed so hard. Now after almost every meal she pokes her stomach out real far and I thump it - then she tries to thump it but it's really a harsh pat to her rib area. I love it, every time I feel Granddaddy right there with us laughing too. I cannot wait to tell her that story and I know this is something we will do forever. Well, as long as a girl will stick out her stomach and let you thump it.

The sweetest thing Neva does is give kisses. Her kisses consist of leaning into our mouths with her lips parted for a split second OR keeping her head perfectly still as we lean into kiss her. These kisses are on Neva's terms only though. You may be granted none, one, or ten, it's all up to her. If she isn't in the mood or has lost her patience with our need for affection you get a harsh hand slapping your face away. Maybe she is teaching us life lessons?!!?

Brian and I am making an attempt to have 1-1 time with the babes lately and when its mine turn with Neva we go to the bedroom, shut out the boys, and have girly time. It includes things like playing with all of my jewelry, playing with my scarves, and playing with (cleaned) makeup brushes. We also play a one-sided game of dress up where I force her to put my stuff on that I think she will look cute in. Again, I am sure this will come back to haunt me one day but right now it's just so much fun.

Incase you were wondering why would we call our daughter "rotten" see the above picture. What do you think she is doing?? Resting? Crying because she got hurt? Crying because she is tired? No, this would be Neva after deciding she just cannot crawl anymore and needs someone to pick her up and carry her to her desired location - most of the time the high chair. It goes like this: she crawls a few feet, looks up crying and reaches her arm out, sits up and cries, throws herself belly down on the floor and continues to cry. Sometimes she goes for the face smooshed into the floor cry as well. Repeat this about 57 times and she still hasn't made it out of the playroom. At this point Matthew has devoured tons of cheerios and is tired of his "appetizer" so we end up going to pick her up. The whole time in my head I hear a voice saying "Don't give in, don't give in.... you are giving in....this is the beginning...this is how she gets spoiled...you just spoiled her...." but whatever. I tell myself that 14 months is too young to be spoiled right? She isn't playing games, there is a real reason that she cannot crawl that far. She is tiny for her age, she was a premie, she needs me....one day I won't be able to pick her up...

Let the fun begin!

Surgery day!

Tuesday was a big day for the big man - back in the OR for an airway checkup, reflux testing, and an overnight stay at CHOP. The full force of the anxiety, nerves, and worry hit me when I opened my eyes Monday morning but I kept reminding myself that it could be worse, there are lots of parents who are dealing with much worse, and regardless of what they find it is not going to take away his huge smile and happy life...it didn't really work well though! Finally I went to the old stand-by "this isn't about you Melissa, Jackson is the one going through this and doing the work, you are only his cheerleader on the sideline".

I tried to keep my dramatics in check, we have done this 5 times before, but this time was different. He is my baby now, he lives in his home with me, he is a happy little boy who in my eyes is healthy and just fine. This time I was handing over my happy, healthy baby to a surgeon, not walking down to the OR with a team of NICU nurses and a very sick little boy. All of this experience brought back a lot of very bad feelings, even down to hearing the sounds of the monitors and alarms again.

Jackson knew none of this and was happy as a clam all morning even when they gave us the purple gown for him to wear. He pulled all of his usual hospital tricks, not allowing them to get his blood pressure, kicking too much for his monitors to work, smiling and luring all of the nurses in with his sweet self. He tolerated my squeezes and got lots of playtime with Elmo in his big bed. (He looks so big there right? But too tiny to be in that hospital bed!)
It was over in about 90 minutes and the surgeon was very pleased with the results. All 4 of Jackson's issues have either improved or stayed the same. He has less swelling, less irritation, no scar tissue or permananet damage was found. Dr. Javia stressed that more than anything else Jackson just needs time to grow and get stronger. He was so pleased to tell us that right now he thinks that Jackson has a chance to outgrow his airway problems and could avoid reconstructive surgery. We have a few things to work on at home but mainly our babe just needs time! We won't get the results on his reflux testing for a couple of weeks so will update on those at a later date.

Our little man had a hard struggle with recovery and we ended up spending a very long afternoon and night in ICU. When the rounds of morphine and respiratory supported started coming it felt as though we were back in the nightmare of months ago. By Wednesday afternoon he started to really perk up and we were able to get him back home! However we learned a lot of important lessons on what Jackson needs and how to best help him through these procedures. Life is back to normal now though and he is back to his happy loving self!

Thank you to everyone for your support, it means the world to know that so many people are pulling for him on days like that!