Thursday, December 14, 2017

Who’s ready for 2018?

This girl!

What a year. Really, thinking back, I can’t believe that we started this year with an incredible trip to Rome…had our kids blessed by Pope Francis…I even climbed 463 steps to the top of the Duomo in Florence while 14 weeks pregnant. We really couldn’t have kicked the year off in a better way. Thank God that happened though, I don’t think I would’ve made it through our family illnesses and Owen’s predicament without it!

I didn’t want to blog recently because I didn’t want to, I will just complain a tiny bit (sorry Pope Francisand then move on. I spent the better part of November on the phone trying to get Owen scheduled for his next sleep study (this is an instrumental test to see if he is still having apnea spells while he sleeps, but without the oxygen support). I won’t get into the details but it started with me thinking I was losing my mind because of the miscommunications between offices and then ended me breaking down in tears when, AN ENTIRE MONTH LATER, he was finally put on the cancellation list.

The break down really was just culminating from a month of frustration and then finally joy because he was finally on the list. But then it happened. Through my tears, I was telling my sweet boy he was on the list, and he gave me a smile. And then another. I have been waiting so long for my sweetie to smile at me…it was a great message from God through Owen saying, “hang in there mama, it’s all good!” He is still pretty stingy with those smiles (Luke was too) but we get them more and more. And that makes everything ok!

Fast forward another week and he is officially scheduled for his sleep study. So please, prayers, good vibes, whatever you got, we will accept and God willing we can leave the oxygen and equipment in 2017 and start fresh in 2018!

Being a parent certainly has its ups and downs. Even if you are not a parent, life in general has its ups and downs. But if there is anything I’ve learned from the downs this year it is that the ups make up for them. And as low as some of the lows were this year, I wouldn’t trade them for a thing. Suffering is part of life and I will accept what is given to me and make the best of it. I remember singing Adele’s version of “Make You Feel My Love” to both Millie and Luke as babies. I sang it to Owen in the hospital and really, no words ring truer as a mom…

I'd go hungry; I'd go black and blue
And I'd go crawling down the avenue
No, there's nothing that I wouldn't do
To make you feel my love

I could make you happy, make your dreams come true
There's nothing that I wouldn't do
Go to the ends of this Earth for you
To make you feel my love

Merry Christmas everyone. Many blessings for a happy and very HEALTHY new year!!

Things I am grateful for this day:
1) Our health insurance
2) Hearing "I love you" from my kids. It is the BEST!
3) The song "Feliz Navidad." It just inspires so much joy and dancing in our household.

Thursday, November 9, 2017

Simple Things

We have an incredibly beautiful maple tree on our front lawn that happens to be within view of our large front window. Yesterday after the temperatures dipped down, the leaves started falling off the tree. There was no wind to knock them down, little by little they just fell from the tree. Normally this is not something I would take notice of but there was just something very peaceful about watching the leaves fall. So what did this mama do? I put down a "picnic" blanket, got our breakfast ready, and Luke and I ate breakfast while watching the leaves fall.

Normally my constantly moving mind and body would think this was an absolute waste of time and I could be doing a million other things. And part of me wanted to be aggravated because I literally raked the entire front and back lawn two days earlier (yeah yeah, I know there are more leaves to fall and rake). But something has finally snapped within me - something telling me to stop and smell the roses so to speak. I have been getting lots of sleep - this little baby has been amazing and I am getting almost 7 full hours of sleep a night. I don't think my mind is truly resting though, and it probably hasn't since we stepped back into the hospital five days after Owen was born. But, now, the simple things are what are helping my mind rest. Here are some recent examples:

1) Kids: we want to be super heroes. Me: great - here, let me pin some towels on your backs as capes. Me...gets to enjoy watching kids run around as super heroes with towel capes. Provides tons of smiles and exercise.

2)  Me...forget dishes for now, take extra half hour to hold Owen and watch his cute little sleepy faces.

3) Me before - we only have 30 minutes to go outside, rake leaves and jump in them...forget it.

In other news...Owen has officially been at home longer than his stay in the NICU...woohoo! Things are status quo, we have some more doctors appointments coming up for him but nothing that is going to be any big reveal as to what's going on. He's getting cuter by the minute...and was possibly the cutest sleepy pumpkin for Halloween...

Things I am grateful for this day:
1) The simple things...and those things that give my mind a little rest.
2) Public officials voted into office who will bring about necessary changes and not play into fear mongering.
3) The PT and OT who are taking care of my little sweet one. They really are great and are helping Owen in so many ways!

Tuesday, October 3, 2017

Two Months!

Big boy is two months old!
Where did Millie go?
Again, I think some will disagree with me for saying this, but if you had the opportunity to walk in my shoes for about ten seconds over the past few months, you would be hard pressed to find a reason not to believe in things/people/messages put smack in your face for a reason. I may not be getting specific answers to my prayers, but I sure am getting messages that they are being heard!

We had some heavy-hitters over the past couple weeks in terms of Saint feast days...Padre Pio, Vincent de Paul, Therese of Lisieux, Archangels, Guardian Angels. I feel like the timing couldn't have been better to carry us through these first couple weeks home.

Things have gone smoothly for the most part. I definitely could've done without the cold that Millie brought home from her first week of pre-school, which took down her, Luke and Matt (who never gets sick) and eventually me this past weekend. Thankfully it went fairly quickly and I was able to keep them away from Owen for the most part. I'm pretty sure I washed every blanket, sheet, pillow case and stuffed animal in my house after that.
I literally want to smooch him all the time!
Owen too  😉😉

This week begins a six-week time period with lots of follow up appointments with the doctors he saw in the hospital and lots of nurse visits to the home for PT/OT. Will we get answers? Maybe. Is my son getting better? I think so. He certainly is as cute as they come. And he's sleeping longer at night which mama definitely appreciates (and needs!).  He also sleeps like a champ through the chaos that ensues with his older siblings. And he loves his bath and reading books before bedtime. His big sister is a huge help and loves to feed and hold him. And his big brother talks about playing tennis with him all the time. (He also talks about getting a car wash, which we have never done with him, just to give you a flavor of what random things he talks about in general. It keeps us smiling). So, amongst the ups and downs, we are doing well. And we are joyful 😄

In the early mornings of the feast of St. Vincent de Paul I had this little quote pop up on my twitter feed from famvin:
Usually when I read these quotes and reflections I take some time to ponder what they mean in my life. This one took no time at all - my little masterpiece, baby Owen - is what I'm being called to work on right now. That and how that little masterpiece fits into the bigger masterpiece of our family of 5. I have thought many times of how disconnected I have been over the past few months, and have felt terrible many of those times. How I've had conversations with people and failed to ask how they or their family is doing. How the normalcy of play dates and running my kids around has ground to a halt. Maybe I'm forgetting what it was like two or four short years ago what life with a newborn was like - and maybe I thought since I already had two kids I'd somehow have these mommy super powers and be able to keep status quo while having a newborn. Either way, it doesn't matter right now. I just want to say to all of you I'm sorry for the times I have spoke with you and didn't ask how things were going with you. Even if I don't ask, I promise I am praying for all of you, your families and whatever is weighing on your heart. Right now, I am busy working on my family masterpiece!

I could go on and on with little things put in my path over the past few weeks but we will keep it short today. I'll leave you with some Kari Jobe and my list of things I'm grateful for!

Things I am grateful for today:
1) The bright sunshine and mild temperatures that have returned this week. Jeans and t-shirt weather is by far my favorite!
2) Owen successfully adjusting to life at home, setting his own schedule and allowing our chaotic household to heal him.
3) Being able to focus on my masterpiece and still being able to eat. Ever thankful to all those bringing us meals, it has helped us so much.
4) I can't not put this one every time - so grateful for your continued prayers and messages of support. I know someday this will be a distant memory. But, in the meantime, know you are lifting me up every day.

Tuesday, September 19, 2017

Here we are, home again, around the flower pot!

The title of this blog is in honor of one of our favorite bedtime books...10 Shiny Snails. It is a tale of 10 snails who "go out to play one night" and how after having their own adventure they eventually wind back home again together, 'round the flower pot. In a way, I feel like this is what happened to our little family. Each of us has had our own adventure with some really fun days and a few scary days but now, we are all HOME!

Our sweetie came home this past Sunday after 42 days in the NICU. He still needs oxygen support to kick those apnea spells, but, we are making progress and it was enough for us to bring our boy home! It was equally as exciting and frightening leaving the hospital.

Frightening because...there is still a lot of questions as to what happened and why which remain unanswered; he is on a monitor at home (that could literally wake the dead when it does go off) but he had a nurse that was awake with him at night; navigating through the house with 50ft of tubing without tripping on either that or a toy that was not put away; even after having two kids you still have that moment of - oh crap I have to raise this tiny bundle into an acceptable human being.

Exciting because... he is healthy enough to come home; I don't have to drive to the hospital each day leaving my 4 year old to cry and tell me not to go; I can eat my own food and stay the heck away from the vending machines and their tasty Twix and Kit Kat bars; I only have to wash my hands (what seems like) 50 times a day versus (what seemed like) 100 times a day; we can finally take him on walks outside and get him on his playmat and all the other baby toys; and let's be real...Dorothy said it best...THERE'S NO PLACE LIKE HOME!

I actually didn't cry leaving the hospital like I thought I would. I think a combination of the above exciting/frightening overcame me, but also the bonds we have formed with some of the staff there are going to be lifelong. These people really become like part of your family - and how could they not? They have seen and cared for my sweetie more than anyone so far.

Some fun things/tips of the trade I learned while at Women's and Children's Hospital:
1) The aforementioned twix/kitkat habit that I picked up - fyi - it is cheaper to buy them from the vending machines than from the cafeteria.

2) I repeatedly heard Brahms's Lullaby playing, which I thought was either in my head or someone's cell phone ringer, even though I had heard it many times before (thinking I was losing my mind). Two days before we left the hospital I finally asked someone if I was losing my mind, to which they responded no (thank God) and that every time a baby is born, they play it on the loud speaker. It's pretty cute. But my vote is some good dance music to play when a baby is born in the new hospital.

3) The first patient/visitor elevator goes really fast - so fast that I'd feel dizzy every time I'd get off. Thing is you don't want to wait for another elevator because it may be awhile. Luckily, this will probably not be an issue at the new hospital.

4) I now know more NICU medical lingo than I'd ever care to know. If you ever need a rundown on blood gases, NIV, Q4, desaturation, or a myriad of other things, I'm your girl!

Life is good. God is good. Here's to this new adventure!

We always put him down one way and find him completely rotated shortly after.

Our favorite play mat!

Things I am grateful for today:
1) Baby snuggles in the privacy of my home, in a comfortable chair, with nothing to do except love on my little sweetie. And hopefully take a nap. 

2) The absolute generosity of not only my family and friends but of complete strangers that I have met over the past 6 weeks. We are so so grateful for everything you have done for us.

3) My baby boy - for his growth and increased strength, for his ability to remind me of how fragile life really is and how truly blessed I am no matter what challenges we face!

Sunday, September 3, 2017

One Month

This reflection for Living Faith that was exactly what I needed to hear this week...
"Even hope is not just a breezy wishing for the best; it is an act of will - a decision to look for the movement of the Spirit, no matter how dark things seem." Reading this was like a slap in the face for me...with all the unknowns and the few setbacks we have had with our sweet baby boy over the past week, this was such a good reminder that my faith, love and hope need attention too. They require work, labor and endurance. Wow. Thank you to Karla Manternach for writing something I needed to hear!

Oooh my sweetie. We are still in wait-and-see mode, which I am ok with right now. It seems as though the doctors are moving away from suspecting there is anything major going on with him from a metabolic or genetic standpoint which is great news. But, he still has a few spells during the day and night where he stops breathing. They have improved from a few weeks ago but are still occurring, which, they need to stop if we are going to take him home. So, your continued prayers are appreciated! In the meantime, he is busily eating, gaining weight and is as cute as they come.

Things I am grateful for today:
1)  The many emails, texts, phone calls from all of you expressing love, support and prayers. They all help me in ways you cannot imagine.
2) Our family. Enough said.
3) Snow being the worst "natural disaster" we would have to deal with in Buffalo. Prayers for the people of Houston...I can't even imagine what they are going through.

Thursday, August 24, 2017

Just Breathe

Just breathe my sweet, just breathe…something I whisper to my son each evening before I leave him for the night. Something simple enough, something we all knew how to do from birth, but my son occasionally just stops breathing while he sleeps. We hope and pray whatever is causing it will heal or maybe he will just grow out of whatever it is, but for now, breathing support, constant testing and evaluation by doctors, and a lengthy stay in the Neonatal Intensive Care Unit is my son’s life right now. That, and lots of kisses, cuddles, songs and books being read to him by mama & dada.

I used to pray for patience all the time. Patience in dealing with my two-year-old who has found his feisty nature and early (and likely life-long) love of annoying his older sister. Patience in dealing with my daughter who found her “stomping feet” when she’s angry and who sometimes I feel like is a 13-year-old in a four-year-old’s body. In my previous blog post I talked about waiting as patiently as I could for my latest child to arrive and how he was taking his sweet time entering the world. Boy, did I get what I asked for…and in abundance.

There are things I have learned having a child in the NICU for the past 2+ weeks:
  1.  If you don’t have patience you will go crazy. Like literally, out of your mind bonkers. Things take time, tests take time, and there are so many babies there that need attention that the time you do have to speak with the doctor is a precious moment. My prayers were answered…I received my patience and it is one of the things keeping me sane while we wait wait wait for answers.
  2. Probably the most unnatural, most torturous thing I have experienced in my life thus far is leaving my newborn infant son in the hospital, mostly during the overnight hours. I just carried him for 42 weeks, brought him home for three days and then had to bring him back to the hospital. It is not really possible for me to stay with him overnight, and I need to be present for my other kids so it is something that tears me apart every day – leaving one child to be with the other two and vice versa. It is just such an awful feeling. So now I pray for strength…strength to endure the heartache, strength to be the mama my toddlers need and strength to have a clear enough head to be the voice my sweet baby boy needs.
  3. I am so grateful for having full-term, high-weight babies. While I may not feel that way during delivery, I am quick to forget the pain and am so happy to have my big babies. Within the past week, we have had two preemies come in the same area as our sweetie and wow – having a 1.5 lb. baby – I can’t even wrap my head around it. All I can do is pray for those sweet little babies and their slow but steady growth.
  4. All NICU nurses need to be canonized as Saints. Seriously, day in and day out they are dealing with some of the most fragile lives, and the gentleness and care they have shown those babies and my son has not gone unnoticed. If you know a NICU nurse, give him/her a big hug and say thank you next time you see them!
  5. How hard it is to communicate with everyone about what's going on. Especially when there has really been nothing new to report. Sorry if I missed telling anyone about what's going on, it has just been hard to keep up. 
So, amongst the chaos is my beautiful little boy who really is as sweet as they come. He only cries when you change his diaper and has been more awake/aware lately which helps mama more than he could possibly know. Please keep my baby boy in your prayers – we eagerly anticipate the day we can bring him home to start his journey as a part of our fun-loving, faith-filled family!

Things I am especially grateful for today:
  1. The support of our family and friends…those caring for our kids while we are at the hospital, those cooking us meals and just providing general support while we navigate these tumultuous waters.
  2. My husband. He is a rock – and the reason I can breathe most days. He, in some way shape or form, has showed me on a daily basis why we were brought together and will be together for life.
  3. All the people offering prayers for our sweet baby boy and our family, and those sending positive vibes our way. An extra shout out to our Vincentian family and faith community of St. Gregory’s – I feel your prayers and love surrounding us on a daily basis and am so very grateful for that!