"Thankful" isn't enough

To say that I am feeling thankful these days is just not enough. Thankful isn't a big enough word to cover all that I feel. I don't think there are words out there that can explain it.

This fall has been an emotional roller coaster for me. Such amazing highs, such horrible lows, reliving every second of this time last year from their birth, watching them grow, scared for them to come home, coming home, then scared that we were going to loose our boy, then watching him taken away in an ambulance to a place I had never seen. Living life with two small infants at home and one very sick baby three hours away. It was not how it was suppose to be, I wasn't able to soak up Neva and Matthew's first weeks at home because I rushed through everything with them so I could get on the phone with the nurse and talk about Jackson. Or I resented their needy cries because they were home and perfect, why should they cry? Their brother was fighting for his life miles away, he had a reason to cry. I could go on an on...but you get the point. After some time I realized that this wasn't the way to be so I made myself accept our situation and realize that the family I waited years for was here and it was time to be a mom to all my babies, not just Jackson.

This time last year we were loading the car to go to Philadelphia. Our first Thanksgiving as a family was spent in a hotel room at the Crown Plaza just a few minutes from CHOP. Two infants and two adults in a hotel room for 48 hours. We spent the whole time alternating visiting Jackson because I didn't want Neva/Matthew exposed to so many germs. It went something like this.... we fed them at 6am and I ran out of the door, drove like a crazy person and was in the NICU by 6:45. Brian was left to entertain the other two until 9am when I came running back for the next feed. Then we fed them and he ran out of the door until 12pm...repeat repeat repeat. There was a lot of strolling up/down the hallways, looking out windows, sitting in the lobby to pass the time. Our time with Jackson was spent trying to keep him comfortable, watching monitors to make sure he was still breathing, passing him off to the nurse when he wasn't breathing well, watching them intervene with different techniques to get him breathing again. When it was time to leave Friday he had one of his worst "events" of the week and that's how I had to leave him. I waited until we knew he was breathing again and things were fine, then I kissed him on the cheek and left him there. When I look back on those days I do not know how we survived carrying more than the weight of the world on our backs.

Lately I tear up on a daily basis looking at my family. I am so grateful for them but also grateful to be so far from those dark days. One of my favorite things to say is that nothing can be harder than what we have already done and I believe it. If this time last year didn't kill us - NOTHING will!

I have a messy house, I don't have much free money anymore, I have stretch marks and a constantly sore back. I have a to do list miles long that I ignore. But I have such amazing babies. They make me laugh every single day. Our house is loud, active, crazy, and overwhelming. We have nurses and therapists around constantly. And I am thankful for every single part of that. Yes I complain, yes I want to stay bed in the mornings, yes I miss traveling.... but I am so in love with my life now that all of that seems like a distant memory.

Tomorrow I am cooking a massive Thanksgiving meal. We are having a turkey (that refuses to thaw), pastry & dressing (all homemade), green bean casserole, a few other dishes and a pumpkin pie. And it's just me, Brian, and the nurse. Maybe Neva and Matthew will eat some. We are getting our Christmas tree today and will start decorating it tonight. Part of me thinks it's crazy to do all of this, just get a frozen lasagna and make life easy. I can't do that though, this is my family, this is our Thanksgiving, our FIRST Thanksgiving as a family. This is the family I waited forever for and I want to do it right. I want to create memories and traditions for my children starting now. That way by the time they are old enough to remember I will have had enough practice that the meal is actually yummy!!!

For me right now thankful means my heart is bursting with emotion. Sorrow for how bad things were last year, joy, thankfulness, love for where we are now. Excitement and hope for where we are going. When you look at your babies or your family hug them extra hard, for a few seconds try not to take the day for granted, not everyone is surrounded by their families at a table full of food. Even though it was my norm for 33 years, it only took 1 year for it NOT to happen, and I will never be the same.

Love you all!

6 Months (really 8) and a high five!!

Talking (writing) about the babes is my most favorite thing to do. Finding the time/energy to do it at the end of the day is not my most favorite thing to do. That is why the blog goes weeks without an update ... I have lots to say but not so lots of the time it takes to upload a picture, organize my thoughts, etc.

I did not update on Jackson's 6 month anniversary home so I will do it now on his 8 month. Jackson is a living breathing miracle to everyone who has had the pleasure of meeting him. For those of you that remember, Jackson is currently a silent baby but all it takes is one of those huge smiles and a bat of his eyelashes and you are in love. It will amaze you how fast you learn to read his face or eyes and you know without a doubt what he is trying to tell you. He recently picked up a new therapy (occupational) and she was doubtful about his case initially due to the distance to our house and his "rating" (yes the state rates babies) at his evaluation. After their first session together she told me that the baby she saw was not the baby she was prepared for, he was so much more in every aspect that anything that was on paper about him. Then that night she called me from her home to tell me that she could not stop thinking of him and that she knew that God had led her to take his case because SHE needed him in her life. Seriously folks - people are IN LOVE with our baby. Anyway, back to the subject at hand...

Medically Jackson could not be in a better place. He breaths on his own 24/7 which is the best we could hope for at this point. He requires a tiny bit of oxygen when he sleeps but it's nothing to fret over. We are down to two medicines, one to control reflux and one to strengthen his lungs. In September he spent a few days at CHOP and we learned that his airway has grown and is healing itself nicely. The hope that he will not need airway reconstructive surgery is still in sight, his surgeon is very pleased by what is happening. Not everyone gets this hope. If a baby can outgrow the issue on their own most of the time it is by age 2. We will know more this time next year but for now it's out of our heads.

When Jackson came home developmentally he was classified as a newborn. An 8 month old newborn. He had no muscle tone in his body whatsoever. Today he can sit up (not perfectly but I will take it) and hold/reach/play with a toy. He can also bend over at the waist, grab a toy, and sit back up with it. These things are huge steps because he has the weight/body size of a 16 month old, but the strength of a 6-7 month old. If he is holding onto something he can hold his weight on his feet (fake standing). He jumps like crazy in his jumper and he is starting to take small steps backwards in his walker. Again huge. Until two weeks ago there were sentences floating around my house like "maybe he will walk..." now it has turned to "when he walks...". He reaches for toys, he can take things out of a container and sometimes put them back in. And just this week he started giving high five. It was enough for me, Nicole, and our nurse on duty to jump up and down and scream. You have to watch very closely for him to do something, his high five isn't a open handed smack. It's more of a some fingers extended very slow touch of your hand. But that's how he starts things...slow and unsure until he is confident.

Two personality traits are becoming promienent right now and in most ways it's more good news. Jackson is aware of everything around him. If you introduce something new into his world he finds it and is obsessed with it until he figures it out. If he hears a noise in the next room, if he gets a new toy, if a toy doesn't make a noise like it has in the past (b/c the batteries are dead and we can't get around to replacing them!), he picks up on every detail. HUGE PEOPLE. Second, he is a strong willed (we knew this) stubborn little boy taking control of his world. Jackson doesn't have a voice so we have to give him ways of having control. We now present him with two toys to choose from, when he is blatantly "telling" us to stop what we are making him do we stop. We have to respect his world. He knows what he wants and even without vocalizing he tells us. The bad part of this is when it comes to his feeding therapies. Jackson has decided that he is in control and he wants it done his way. AKA - don't try to put something in my mouth, I will do it. His hand/eye coordination is so good now that he can snatch a spoon out of our hands in a heartbeat. He swipes our hands away, he pushes on our hands, anything he can do to be in control of that spoon. (More on feeds in a bit) This is frustrating at times because to better help him we need to be in control. We are working on teaching him "my turn" and "your turn". We do it our way a few times and then he gets to do it his way. We apply this to almost everything in his life these days!

Last but not least...the dreaded feeding conversation. After a boatload of therapists and money spent (all worth it) it has been determined that no one knows why Jackson won't swallow. It seems the functionality is there, he swallowed before the trach, after I combed through every detail of his life, activities, and even pictures post trach we determined he swallowed for a few days after the trach. Regardless when we brought him home he was not swallowing and had such an intense oral aversion that you could not even kiss him on the cheek without a total meltdown. Aversions are not pretty or fake. They are true fears developed inside of a person. It's your brains way of protecting yourself from what you think is painful or scary. This is the hardest part for me as his mom. Jackson was not born this way. Between the months of November - February things happened to him inside/around/near his mouth & face that were so traumatic that his brain believes it has to protect that area now. The first month that he was home he kept his arms bent up to his face, his hands wide open literally covering his lower face from us. Any attempt to move his hand or arm was torture for him. Fast forward to today and we can smother that whole face/lips with kisses. We can put lotion on his face, he mouths EVERYTHING he gets his hands on, he chews his fingers, and we are able to put tastes of foods (mainly yogurt) into his mouth. He moves them around with his tongue and eventually pushes it all back out but he loves it. He will put a spoon so far back into his mouth he gags himself sometimes! We work on cheek, lip, and tongue stretches when he allows. He isn't using his muscles for things like eating or talking so we have to keep them engaged as best as we can. The hope and prayer (that wakes me from a dead sleep at 3am some mornings) is that we just keep going until one day he realizes it's ok to swallow. It won't hurt him. We are realistic though and this accomplishment will be years in the making. Feeding is one of the toughest hurdles to overcome for a small one unfortunately.

That's that. Jackson is thriving at home and so are we. It is hard to always stay positive and see how grateful we should be. There are a lot of "why me" (even though it's not me in pain or working you know?) or "why us" or other pity party moments, I really do try to remember that I have more than so many parents in our situation have. I get to wake up and fight along side of him every morning and many did not have that outcome. In Jackson's short life we have been to the lowest depths and the highest of highs. Regardless I KNOW the dark days are beyond us and though the road is long, it is going to be full of heart bursting moments!!!

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!