Happy Anniversary Neva

Happy 1st anniversary of your homecoming Neva Elizabeth. Yes we are two days late recognizing this, but that's ok because we have had a lot going on lately with family pictures, family colds, and the Miracle Walk.

You were the one that I was the most excited about (sorry boys - this was before I knew how awesome you are!), you were the one that I was the most ready to meet and build a relationship with...and apparently you felt the same way as you refused every medical attempt to stop your entrance into this world. You gave everyone quiet a scare for a bit of time when suddenly no one could find you in my stomach, you and your heartbeat had vanished ... of course everyone knows where the doctor found you and you have the bruises to prove it! My first memory of you is laying in the operating room wondering why it was taking so long to get you out, why didn't I hear you crying, again where were you??? When I finally asked when you were coming out they said "She's been out - look to your left" and I saw two tiny feet surrounded by doctors and nurses. Immediately I went into mom mode and said "why isn't she crying? what's wrong with her?" and they assured me you were fine, just tiny and needing some help at the moment. The black and blue bruises along with how swollen you were broke our hearts. You were the strongest of the three, requiring an oxygen/cpap mask for 1 day and then transitioning to the nasal cannula.



We were able to hold you the evening of August 2nd, one day after you were born. No one was prepared, it was such a great surprise. Nana was there and ran back to the room for the camera as we got setup. Your nurse was from Rockingham just like Nana so they kept chatting away while inside I was screaming "JUST GIVE ME MY BABY!" You were such a tiny peanut, about 2lbs 4oz and felt like nothing in our arms. Like nothing but also like everything. From that day forward we held you everyday.


You moved out of the big room very quickly as you showed how healthy you were. You never gave us any scares like your brothers did, except when you lingered around the 2lbs mark for a few days. You slept and sometimes opened your eyes and gave little cries when you wanted your passie. One of us would be at your isolette and you would start to cry, we would open all of the little doors so we could really hear you, it was the sweetest little kitten cry. We lived for those moments! Everyone told us that we would get our fill of you crying but it hasn't happened yet.

August 23rd, the first time you were given a bottle. Again I can remember it with total detail. I was standing at the scrub sink washing up and Nanette (a nurse I had never met - who would become a second mother to me) yells from your room "Mrs. Groves! Mrs. Groves!! Neva is ready for the bottle and we have been waiting on you!" It was so exciting! I didn't get to give you that bottle, she did it, but I got to sit, watch, and learn. Then as soon as you got it you lost your bottle for a few weeks because you went through this long phase of projectile spit up! You even had a note on your isolette to be careful after feedings or you would get sprayed! The nurses got a kick out of you spraying the doctors during their rounds!


You spent most of September sleeping and growing. When it was time for your bottle you would either sleep through it OR be too busy taking in the world to eat. We named you Nosy Neva (still use it today) because as soon as you came out of the crib you were looking at everything except your bottle. My frustration with you lasted for weeks. At times the nurses did the feedings for me because I would get so upset. You could have been home ONE FULL MONTH EARLIER if you would have just eaten. Towards the end we all agreed that you just wanted to stay and look after Jackson, you decided to let Matthew go first instead.


Your discharge came as a big shock. To this day I believe that the doctors were just so sick of me nagging them that they sent you home to shut me up! The first bottle you finished was on September 28th - only 6 days before you came home. Auntie and Uncle Lenny were here when we got the news. Uncle Lenny stayed home with Matthew while Auntie and I went to get you. We were so unprepared that Dad didn't think he could get away from work to meet us at the hospital. I remember telling him that I had Auntie here to help me, we could only do the best we could and his reply was "Melissa that's not good enough - how many times will I bring my daughter home from the hospital?" As you can see he made it along with ensuring his outfit matched the occasion!


We had just gotten the hang of having one baby in the house and two scared us to death. While Matthew ate like a champ, you were such a challenge. It took so long to feed you, it would run all out of your mouth so we had to take it away every few sucks, you took so long to burp ... but you were so sweet. You have had us wrapped around that itty bitty 2lb 6oz finger since the day you were born!

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!

Come on Irene!

Irene came by this weekend to visit and hang out for awhile...overall I think we weathered her storm nicely! Sometime Friday evening we both realized that we were parents to three babies, one who requires electricity for his medical equipment, and we better get something prepared for this hurricane. I went to the grocery store & came home with chips. Brian came home with a few flashlights and no batteries. That's the best we could do!

Saturday night we had the generator on the porch, everything ready to go, and then I laid in bed pretty much awake all night waiting for the power to go out. It didn't happen until around 6am - lovely. It's funny how light you can sleep and how fast you can go into action mode as a parent. My fears were wasted as the generator worked perfect and Jackson never even stirred.
As the morning progressed we quickly got our priorities in order as you can see. iPhone and coffee were a necessity. Initially I was nervous we would run out of gas so we started trading cups of coffee for extra gas to our friends and neighbors! Later in the day, when I realized we had plenty of gas, you would find me in the same spot with my hair dryer and flat iron plugged in and ready to go. Who knew a generator was SO AWESOME!

Of course we could not keep Mr. Curious away from the window. He needed to keep an eye on Irene, the generator, the red gas cans that were on the porch....this kid notices everything and takes it all in! It was a nice break for us really, instead of entertaining him we just let him stare out of the window.
We lost power for two days and had one tree down. It cracked our mailbox but who cares, we were fine and the basement stayed dry which was another one of my huge fears. The babies were awesome, they even slept until 7:30 Sunday morning. We both felt like we were given something we had been asking for...a quiet, dark day to lay perfectly still and not have anything to do !!!! Which is what I did during every nap and at precisely 7:01pm when the babies were safe in their cribs.

Monday morning we woke up to a cool sunny day and enjoyed a lot of family & friend time. Due to down'ed trees and power lines we were kinda trapped on our mountain so we all chipped in food, drinks and just spent the day together. Just as everyone was loosing patience Monday evening the power came back! We promptly turned on as many lights and tv's as we could and went back to the real world! It was a nice break though!

Mama Bear

(This is a real picture taken from our neighbors camera earlier this week)

This post will cover multiple issues in the last week of our crazy family life! For those of you who know where we live you aren't surprised to learn that we spot bears several times a year strolling through our yard or on the roads. NJ loves their black bears and does so much to protect them. You have NEVER seen a more fired up group of yankee red necks than when NJ is about to allow a period of black bear hunting. Anyway, lately we have had a couple of "too close for comfort" bear spottings. The first came as I was about to stroll down the driveway to get the mail (my only outing of the house some days and I really look forward to it!), I heard a crash in our garage, turned frozen in place to watch a bear stroll out carrying a bag of garbage in it's mouth. I did not know that Brian had forgotten to close the garage on his way to work and I guess the lure of dirty diapers was too much for the bear to resist. I will leave out the dramatics of how I felt but it was very scary and involved my life flashing before my eyes. The bear was happy as can be though, sat on the edge of our yard eating garbage.

After lots of discussion with Nicole we decided to buy some bear repellent and keep the babies closer to home until it arrives, surely they would be safe in the driveway right? A week passes by and in my never ending to-do list researching bear repellent fell way down to the bottom. This past Friday Brian and I were upstairs discussing Jackson's healthcare (more on that later) when I spotted a bear strolling around the front yard. Not too shocking until I saw a cub and then another cub. Even though I have only lived in bear infested lands for a year I know this is not a good situation. I also knew that the house was blissfully quiet - which meant there was no baby inside. I think for the first time my "mama" instincts took over. I ran downstairs taking a quick sweep of all rooms to confirm there was no one inside, checked the back deck through the windows as I ran to the garage, scanned the garage and realized all strollers were accounted for so that meant the babies were somewhere very close to home and in the front yard. As I turned down the driveway (that is miles long it seems - really its crazy long) I saw Neva's toy car and Matthew's walker at the end, empty, with no one in sight. And yes the bears were still just chilling in the front yard eating leaves. At that point I knew the babies were safe, there would be signs if something had happened, but I couldn't find them. Ran down the driveway yelling for Nicole, crying, trying to figure out if she had hidden them in the woods, trying to think like Nicole would think! I saw our neighbors garage was open and it clicked that she was in there with them. As I was running over she came out, we all hugged and cried as she told me how the mama bear had seen them and was not happy about it. That she had started walking towards them so Nicole grabbed babies and ran! Then I thanked her for saving my babies lives and sent her home early figuring she would call to quit at some point that weekend. Anyway...very scary but surprising how clearly you can think in a moment like that. Also surprising how I knew they were safe but that didn't make me feel one smidge better until I laid my eyes on them and saw it myself.

That prompted me to go inside immediately and order my bear repellent. Hopefully we won't run into any bears as angry as the package shows but if so we are ready.

Oh and as a side note, I got a call later in the evening that my order couldn't be shipped to a NJ address. NJ doesn't allow wildlife items to be ordered online. Seriously? This place is in love with their wildlife, whether it be people or animals! So now it's going to SC and then coming my way.

Next, I was also playing the role of a mama bear in the last week. Growing up we were all taught to be nice, it gets you places in life right? Sadly in the medical/healthcare world it doesn't work that way. We have been working for two weeks to schedule Jackson's next GI / ENT appointments at CHOP with no success. They want us to gather tons of medical records, fax over all of his documentation, and then give them two weeks to review before we are offered an appointment. After a few hours of thinking on that I called back to tell them no, it wasn't going down that way, figure out another way to make this happen. Another call from CHOP a few days later and good news! They will gather the paperwork for me and they have secured us a GI appointment on October 25th and ENT appointment on November 7th. I didn't even have to think about that one, my immediate response was no, go back to your scheduler and figure something else out. We will not wait that long for him to be seen. After some heated conversation exchanges I finally said to her what we all know is true "Listen, we spent 4 months at your facility, I know the drill. The mama screaming the loudest gets what she wants. I will be that mama screaming in your ear until I get what I want for Jackson".

Jackson is going to Philadelphia this Thursday (8/25) for his GI appointment and he will be headed to the operating room with his ENT surgeon September 6th, two weeks from today. Some things are worth the fight and the screaming.

Movin' on up!

When you bring home a micro premie baby they are "babies" FOR-EVER. They stay these tiny, under-developed little beings for so long you think it's never going to end. Time flies by yes, but your babies don't change that much. Suddenly our babies have bridged the developmental gap and they are changing every minute of the day. Now when I turn my back for a few seconds not only are they not where I left them, they are in a completely different room....or in two different rooms. Matthew is leading the charge of course but his new little buddy is never far behind. In the last few weeks Neva seems to have began warming up to her little brother. He can touch her, they can sit side by side, they can share at toy with limited screaming. She watches everything he does and tries so hard to keep up with him. Since he has always loved her, he stops to look behind him as he is crawling away to make sure she is following, he gives her huge smiles and sometimes even comes back and waits on her.

Yesterday Matthew reached his biggest achievement thus far in making it to the third step. Part of me wants to see how far he can go and part of me wants to pull him down and immediately put a baby gate up in every room of the house. Right now we are going down the path of no baby gates. Yes I know that that will change very soon but listen people, when you have three babies they have to learn hard lessons early. You do not have enough hands to cushion every fall, to hold onto to each of them as they start exploring, you don't even have enough hands to hold two down while the other tries to find it's way in the world! Our babies have to learn early on that if you fall down it's going to hurt so you better be more careful next time. Of course Brian thinks that their heads and limbs are not ready to handle these tough lessons but he isn't here most of the day so I get to try it my way. I know that soon they will be corralled into a pen but right now I like seeing them become daring and adventurous. It's much better than trying to make them sit still and play with a toy while they thrash about screaming.

Anyway, yesterday I had these two dressed and ready for pool time and they decided to test their wings a bit first. Matthew is working hard at getting up those steps and Neva is not far behind him, always trying to catch him! You can also see our awesome play room! Yes it's right at the front door and the first thing people see but there is no hiding baby stuff in this house. A few weeks ago we put this together and we have taken our living room back! It's GREAT!!