HOME SWEET HOME...

The doctors surprised my sister and told her Tuesday that Aiden was well enough to come home! So of course, she and her husband were thrilled at the news! Her husband went to work that day and had planned to take Wednesday off because that was the original day Aiden was possibly thought to be coming home. Well, he couldn't wait to get out of work!

Joe and I (and our kids) picked up Jim and drove him to Children's in Boston to finally bring his son home. My sister and mom were already there. During the ride my husband turned to Jim and asked him, "Does this feel like the longest ride yet?"
Jim said it was much like the first night he had to leave Aiden. So yes, it felt long.

We dropped him off, I stopped by long enough to get some hugs, kisses and pictures (of course) but then my family left to meet them back at their house (for more hugs, kisses and pictures). We got to their house before them and added to some of the decorating Jim had done.

When they finally arrived, we all welcomed little Aiden home, clapped and sang a little song for him. It was such a wonderful, happy day.

Since they'd been expecting to bring him home the next day, there was a little stress from not being totally prepared as my sister really likes to have things organized. Slowly but surely, they will get themselves organized and into a routine. It's just nice that they are all home as a family now and can start working on that.

We got in a bunch of hugs and kisses and helped clean and prepare bottles and organize stuff (or at least acted like that's what we were doing). After we were sure we'd overstayed our welcome, we left happy, knowing that my sister and her husband were finally, finally getting the day they'd been waiting for... bringing their son home.

Today, his brother and sister came over to spend some time with him. They will be back Thursday night to spend the night and we will meet up with them too. Sunday is Aiden's baptism and we are all hoping it is a beautiful day outside. However, what matters is that on the inside, in Aiden's heart, he will be baptized into God's family, a journey I know his mom and the rest of us will support in him. I am excited to be not only his Auntie but his Godmother too!

There are plenty of ups and downs yet in parenthood, but, I think, for now this is where this story should end for the time being. Perhaps there will be a visit from my sister on this page sharing her thoughts, or from her husband. I thank all of you who went along on this journey with us, praying for Aiden and his parents. Some of you know them and us, some of you don't. But we are all God's children and appreciate your care and concern. It is my hope that Aiden will always know and feel the love, support and encouragement that people have to offer each other, just like so many of you have offered during the past few weeks.

Meeting Aiden, Making Progress

Oh Boy! My family has been on the road since Thursday and I’ve had limited internet access and even more limited time to access it. Which is good. Because life is about more than a computer screen and connecting cyber-ly. But it’s also bad because I’m slacking in my blogging duties.

I wish I could’ve recaptured the last few days in as great of detail as I had the first week or so but it will just be impossible to do that at this point. On the other hand, I’m sure all you readers are secretly rejoicing about that! Either way, here’s the update:

Aiden never did get transferred to Newton-Wellsley. They never had an open bed so they just put him in a regular room at Children’s. He is on the same floor but not in NICU… just around the corner. He started out sharing the room with another 11-year-old who got discharged later that same day. I’m sure the 11-year-old was glad for that! Aiden now has a little girl as a roommate. This has its pros and cons. First, at least you are not sitting in the room all alone. The downside can be the alternating fussing of the babies and nurses that come in. If it’s not one baby, it’s the other. At night, this can be particularly difficult to get any sleep. Oh, that’s the other great thing about being in a regular room. One person is allowed to sleep overnight on one of those oh-so-fabulous pull-out chair beds at the hospital. So Aiden doesn’t have to be alone!

Well My sister spent Friday night with him but was so exhausted and in such pain she asked her husband to spend Saturday night. My sister is still recovering from a c-section (It’s only been a little over 2 weeks). She also has a lot of swelling and fluid. She isn’t taking any major pain medication and it’s very painful to sleep to begin with much less in one of those hospital chair/beds.

Anyway, the routine has been to feed Aiden every three hours. Before every feeding the nurses have to check his blood sugar. In the middle of the night both Friday and Saturday his sugar dropped. The first night they were panicked (the nurses) and called a team in right away. It was kind of emotional and chaotic. The second night, when Jim was there, they were a little less flurried because Aiden’s blood sugar had gone up right away after feeding him the night before.

Well, by now it was Sunday, and we got in that night and finally, I, THE MOST AMAZING AND BESTEST AUNTIE EVER, got to meet the little guy.

See, we drove from NYC directly to Children’s Hospital in Boston… of course! The entire way I contemplated what my first words would be to my nephew. Of course they had to be meaningful and profound. Of course!
Well, the minute I saw my sister… she was just in the process of picking up Aiden from his big crib bed… I burst into tears. Of course. My planned little talk to Aiden was out the window. Of course. My sister was sobbing. Of course. It was so emotional and I’m pretty sure the first thing I blurted out was, “He’s sooooo tiny! He’s so tiny!” And then a bunch of crying and slobbering and hugs. I think the first thing I said to Aiden was pretty typical… “Hi baby!” Yes, so profound!

Well, that doesn’t matter. What matters is that Aiden was doing great. He was awake and alert. It was just time to feed him so I got to feed him and whaddya know. He did awesome for Auntie. He drank 56 cc’s, gave me a nice big beer drinker’s burp and a diaper surprise (which I got to/had to change) and then drank 4 more cc’s. That was the most he had taken in one feeding to date. Sure, leave it to Auntie Mindy. She’ll fatten him up! But that’s what he needs to be doing!

So things were good that night. My sister stayed overnight again. Yesterday (Monday) my mom, brother-in-law and I spent the day at the hospital. We had a meeting with the Endocrinologist team at 2. Aiden’s schedule had him eating at 2 also. Well, we got there a little before 1:30 p.m. and I picked him up right away.
“This baby’s hungry now!” I said. And he was! But he was supposed to wait until 2 because of his schedule and because they need to test his blood sugar first. So, at 2:10 the nurse finally came in to check his blood sugar. He’d now been hungry for about 45 minutes. Sure enough, his blood sugar tested low. They wanted to do more invasive bloodwork, for different things including a more accurate blood sugar test.

Unfortunately, the nurse assigned to draw the blood was covering for another nurse and looked more tentative than any nurse I’d ever seen. I mean, I feel more confident in my abilities to draw blood and I’ve never done it before. Without going into details, it was a nightmare to say the least. Baby crying, being held down by five people, numerous failed attempts… Seriously… FIVE people to hold down a 6 pound baby???? It was super emotional and traumatic for everyone in the room and took almost an hour to draw blood. Of all the times poor Aiden has been poked and prodded, this was the worst experience. He didn’t get his bottle until after 3. The attending doctor was in the room for part of the time and I asked him why Aiden has to keep waiting 3 hours if he’s hungry? I didn’t know if that was for a specific reason or what.

Finally, we went into our meeting. The doctors did a great job explaining everything to date. They were a new team. They outlined some of the tests they are doing to rule out any more unusual conditions, none of which they think he has but they are at the point of feeling it necessary to rule out. They also suggested going ahead and feeding him based on his hunger cues but never making him wait more than 3 hours. They also are going to have my sister and brother-in-law learn to check his blood sugar so if there are instances (like if he’s lethargic, not eating well, gets sick, etc.) in which they are worried, they can check it and follow a protocol to get him the right care as quickly as possible.

“So this baby DOES come with instructions,” my mom joked later.

Shortly after the meeting we learned that Aiden’s blood sugar was not actually too low but that the glucometer just misread it. The more intensive test reads more accurately and read it higher. This was great news meaning Aiden’s 48 hour window of stability was still on track and the doctors threw out Wednesday as a COMING HOME day! WOOOOOO-HOOOOO!

It’s a relief but one that still comes with a lot of emotion and tears. My poor sister is just so exhausted and spent. Her husband told me how sad he is that she never got to experience the joy of bringing him home, the celebration of having him. And truly, that is something they are both probably grieving over. After all the highs and lows, it’s just been so hard to be too happy with good news. And it’s hard to think the light at the end of the tunnel will ever shine.

Indeed, at the next feeding, the nurse came in to check Aiden and sure enough, his blood sugar tested LOW… AGAIN! What?! My mom said, “How can that be? Try a new glucometer before you have to go sticking him again.” Because the next step would be to do that invasive bloodwork stuff they had just done a couple hours earlier. Well, the nurse left and sure enough, came back with a different glucometer and guess what? It read the blood sugar at 60! Great! A super number!

“What number is that glucometer?” My mom joked. “Don’t let that one out of your sight!”
And just thought I’d mention, I then gave him his bottle and again, he loves his Dinner Dates with Auntie! Took the WHOLE thing (and gave me a nice big messy diaper surpise again. Not my favorite part but I don't care! I'm just so happy he's healthier.)

So here was sit at Children’s Hospital in Boston, one of the best most amazing hospitals with the best doctors in the world and we’re wondering if they’d just let Aiden eat when he showed he was hungry and checked their equipment first before jumping right into more invasive tests, would Aiden have been spared more days in the hospital? We will never know and we have to just let it go because it’s too frustrating to contemplate how protocol and machines can sometimes make us stupid to common sense.

The good news is my sister stayed overnight with Aiden last night and he’s been doing great since. More good blood sugar readings and he is set to come home Wednesday… maybe even late tonight! Halleluiah…. HALLELUIAH!!!!!!

We are so excited! His baptism is still scheduled for Sunday and we are planning to celebrate baby Aiden’s birth and really try to give my sister and her husband the feelings of joy that should accompany a new baby! We are soooo happy!

Thank you again for all your prayers, support and encouragement. It really has meant so much. So many longtime friends have proven their loyalty to my sister, her husband, my mom, myself…. An amazing group of new friends have emerged showing their true hearts and have just bowled us over with their strength and compassion. It is so true that the fastest way to find out who your real friends are is to see who is left standing next to you offering their heart, their ear, or their hand while you walk through hell.
For those that have chosen to take that journey with us, there is simply no way to express how grateful we are. The strength and support has carried everyone through such highs and lows and has truly, truly made more of a difference than you’ll ever possibly know.

We thank God for you and wish you many blessings in your lives and hope you know that we will always keep you in our hearts and prayers.

With that… today is a day to SMILE and be ever so GRATEFUL and EXCITED! And let me just say, Aiden is absolutely adorably beautiful. So sweet and so tiny. Unless you've actually seen a 5 pound (or smaller) baby, there's just no way to describe how tiny, how almost nothing there is of his fingers and how small and fragile he seems - at first. But bundle him up and snuggle him and he's the best!

Change in Plans, But Not in Mood

Since there were no beds available for the last two days at Newton-Wellsley, plans have changed again. Aiden remained in the NICU at Children's until this afternoon when he was moved to a regular floor in a room of his own. The benefit of this is having his own room, one in which my sister will be able to stay with him, sleep there if she wants, and be in charge of his care basically 24/7 - more like if he were able to be home.

He no longer has the nose tube in and the are working very hard to make sure he eats/drinks as much as he is supposed to. This is what is preventing him from being released at this point. But they truly do have hope that he will be released within days from now.

Here's a message from my mom about all of this:

Auntie Mindy, Baby Aiden graduated today into a BIG BOY ROOM. He is just down the hall and around the corner, but it is the next step towards home. Mommy and daddy are staying there with him tonight. I have the twins. He is being observed around the clock and is doing quite well so far.

Mommy told him to get better so he can come home and meet all his cousins, Auntie Mindy and Uncle Joe. We are praying he'll be here when you arrive. Drive safely and we are all waiting for hugs and kisses in a couple days.

We are so happy to hear the progress and continue to pray for him - in both good times and bad. We also pray for all of his newfound NICU friends who are continuing to strugle, wait, and hope for the health improvement of their own babies; all of whom have their own heartbreaking stories too.
Hopefully, the next time I update it will be to say Aiden is coming home!

Thanks for all of your prayers, interest and cheerleading.

(P.S. My family is in NYC for the weekend and will be meeting Aiden (FINALLY!) this Sunday night, whether that's at the hospital or home!

On the Mend and On the Move...

More Good News about Aiden today! Yay!

But first, what to do with the latest pics we've received? Why, make a video of course, singing compliments of my oldest daughter (and me). Enjoy!



Wednesday night, Aiden's nurse decided it was time to change his IV but she had difficulty getting a new one in. The doctor suggested they leave it out for the time being. Aiden's blood sugar went down but with a feeding it went back up some. It's stablized! On the lower side, but he is good and no more IV! Rejoice!!!!

My sister and brother-in-law met with the doctor again today. Aiden is being promoted! He will be transferring out of Children's to Newton-Wellsley sometime on Thursday. N-W is a Level 2 NICU as opposed to Children's which is Level 3. The new hospital is about 15 minutes closer to home. He is expected to stay there for a week, hopefully less, to monitor his eating. Since he's so little, it's critical they have a good handle on this.

Wednesday evening was also filled with fun first time memories. My sister gave Aiden his first bath. Aiden gave his daddy his first "shower" during a diaper change! I love hearing how much they are enjoying these moments! My brother-in-law is going to spend a much needed day of fun with his teenage twins at Canobie Lake (amusement park). Hope you guys have great weather and a super awesome time!

My sister packed up all of Aiden's things from Children's and said, "I'm not bringing a bunch of stuff to N-W! He's not moving in there!"

The bittersweet thing about Aiden's progress and transfer is leaving the other families in the NICU. They all got so close over the last several days. Here's what my brother-in-law had to say about it:
The only sad part of tonight was having to say good bye to our new friends and their babies. Please also pray for little guys, Elliotte, Jorgan and Gracen. the need all the prayers and love that they can get.

Now, armed with all this good news, in less than 12 hours my family and I will pile into our minivan and begin the 25 hour trek to Massachusetts (with a pitstop in NYC). We should be there by Sunday and hopefully just in time for Aiden's own homecoming!

A Picture is Worth A Thousand Tears

I finally got more pictures of Baby Aiden today! Oh boy, I was so excited. I really, really wanted to see the pictures. Oh but why? Why did I want to see the pictures? The pictures broke me.

These two in particular where my sister is feeding baby Aiden through his feeding tube.

When he doesn't take enough cc's through a bottle, this is what they have to do. Then they have to hold the tube up so the milk travels through the tube in Aiden's nose down to his tummy. They are slowly increasing how much he will take per feeding. Right now he's around 42 cc's. There are 29.6 cc's in just one ounce. This means Aiden is not quite taking 1.5 ounces per feeding right now. The average baby is drinking 2 ounces (or more) at this point. In order to keep his blood sugars stable, they have to make sure he gets enough nourishment. He has had trouble with learning how to even drink from the bottle and then he gets tired and falls asleep, the kind of deep REM sleep that some of us haven't known since infancy. And this other one she is taking his temperature. The thermometer is so huge and all the wires!

And this one, just breaks my heart further. I don't know if it invokes the same emotion in others, but it makes me so sad to see baby Aiden full of wires, tape and tubes. And he even has a shirt on in this one to cover some of all that.

Aiden is just so tiny and helpless. The picture below with my sister, for some reason, really sent a flood of emotions and awareness of the reality of my sister and brother-in-law (and mom's) days since Aiden was born. Spending hours in the hospital, traveling the weary hour (plus) trip to and from Boston every day. The anguish of saying good-bye at night. OH MY GOSH, the pictures are emotional snapshots in time... one after another after another.

Thank goodness today was a Good News Day because despite having a complete and totally ridiculous cry, I can remind myself he's getting better and there is a very strong sense of hope that the scariest and worst is behind him.

In fact, the first call I got today from my mom included the fabulous news that Aiden's blood sugars are up and staying stable longer. They had taken his glucose IV down to 1.8. By this (Tuesday) evening it was down to 1. According to my mom, my sister was literally cheering and dancing (okay, not really dancing).

"Yeah, I was going Woo! and stuff," My sister admitted to me later today. Well, I agree... WOOOOOOO!!!!

Overall, I think they had a pretty good day. Today was also the day they got to dress Aiden for the first time. When you have to wait until your baby is 10 days old to put him in his first onesie, it is a big deal!

Tomorrow, they will meet with the doctor again. Hoping for more good news.

Oh Boy! Thoughts of the Overtired, Overwhelmed & Overthinking Auntie

Just before midnight tonight I was talking to my mom on the phone, who is still out East with my sister, and has been since the day after Aiden was born. We were just talking and sharing the latest details when she mentioned how when they returned home from the hospital last night there were some emotional moments as my sister sat listening to lullabies and talking about which ones she's been wanting to play for Aiden, her heart aching to have to spend the nights so far away from him. She'd already told me about this earlier.



"Mom," I said. "That wasn't last night, that was 2 nights ago."

"No honey, that was last night," she said. I was flabbergasted. Was it really? Hadn't she told me about that a long time ago.

"It's been a long day hasn't it?" She said. Well duh. I didn't go to sleep again last night. Seriously, my head hit the pillow and 30 seconds later my husband's alarm went off. I'm starting to wonder if there is a trigger for that thing under my pillow! But this is a story for another blog.



Yes. It has. It's been a long 10 days. That's how many days Aiden has been in this world tied up to wires and tubes and laying in a bassinet in the hospital. It seems like Aiden has been a part of our lives forever. That has got to sound crazy coming from me since I haven't even met the little guy yet, haven't even felt the warmth of his baby skin or the soft fuzzy hair on his head. If it's like that for me, I can't even imagine what an eternity it's felt like for my sister and brother-in-law... and their teen twins and my mom.



The day Aiden was born, my mom didn't sleep at all before flying out there. I know this because I sat up with her on my couch all night long. When she arrived into Boston, she got a cab and went straight to Brigham and Women's where my sister was. And there she stayed, suitcase and all, for the first 3 days (I think -maybe it was 2... like I said, it's hard to tell when one day stops and another starts). She walked the halls most of the first night there. I think she found a random chair and dozed in it for a bit. Another night, she tried to sleep in a chair in my sister's room. A nurse gently reminded her during the middle of the night that only one additional person was allowed to stay overnight in a patient's room. Of course, my brother-in-law was there too. She graduated to sleeping at my sister's house... on the couch, in a chair, on an airbed.



I think they are all so tired they just crash when they get home. My sister is finding it difficult and painful to go up and down stairs which makes simple daily getting ready tasks a challenge.



On top of all this, I think about the twins. They typically spend one night a week with my sister and brother-in-law and every other weekend. Aiden was born on a weekend they were with them. Their routine is all out of sorts too I'm guessing. I do know my brother-in-law did get a chance to take them to breakfast at Friendly's earlier this week. (I hope he let them order Peanut Butter Cup Sundaes!).



And I'm glad to hear he is planning to spend Thursday with them. I think they might go to Canobie Lake. I'm sure they are missing their dad and feeling the ups and downs of the whole situation in their own way.



I know that my own family has spent a great deal of time communicating with me via customized sign language or handwritten notes as I've spent a lot of time on the phone the last 10 days. I'm fairly certain I've made a meal or two this week but that might even be pushing it. I really can't say enough about my husband. His is a quiet kind of support but it gets the job done. He always gets the job done. There is a real comfort in that; knowing he is there and possesses the strength to keep us all moving forward, especially during times like this. It makes me wonder how people with strained relationships or weaker support systems manage to cope during stressful times in their lives.



There really is so much to think about and all the waiting is like an open invitation to enter the world of, "I Wonder." Because really, when you are completely focused on one thing, such as the health of this baby and getting him home, there is a lot of patience required as you sit in a holding pattern for hours, sometimes days, waiting to see what the next moment will bring. Progress? Setback? Status Quo? You can only keep thinking about the current moment so long. Sometimes it's helpful to let your mind drift a little, even if it's only to weave in and out of all the issues at the periphery of the actual situation you are in; which is your baby is in the hospital.



The thing about the NICU is it's a club. Not exactly a club anyone dreams of joining, but its members share something in common that is only ever completely understood by others that have or are living it too. I've been blessed with four children, all relatively typical pregnancies and births. It's as if my sister made up for all the aches and pains I was spared... and then some. Even with my own experience as a mother, I know enough to know I can't possibly understand exactly what it does to a parent to go through this. I can hear about it, explain it, try to describe it in an attempt to share the emotions with others, but really, we're all just looking in through the window. We can see a lot but we can't make out what's in the shadows of the room or around the corner or behind the curtain. But those other parents can, because they are right in there with them. Literally and figuratively.



The NICU has a bay where the same small group of babies share a common visiting space. In the first days, all you are focused on is your own plight; your own baby. But as the hours turn into days (and for some the days turn into weeks or more) you lift your eyes and suddenly see yourself staring into another pair of eyes filled with the same mix of hope, fear, desperation and helplessness. You are staring into a mirror, but it's not your reflection. It's the mother or father of another baby who is struggling. And you begin to communicate with those eyes that speak the words in your heart that your body is simply too exhausted to voice aloud.



Going in and out of the visiting bay, silent greetings are shared with eye contact, head nods, fleeting tentative smiles. As the whole surreal experience becomes a routine you settle into, you realize you have formed powerful bonds with people you've barely spoken too. But then the conversations begin. Of course, with my mother there at least, conversations would eventually begin. She once made friends with a person who dialed her as a wrong number. True story!



They now count the other parents in their NICU club among their friends. It's funny how a similarly shared experience and simple physical presence (with or without the exchange of words) can bond people together and grow a sense of compassion for each other. They have become cheerleaders for each other and added all the babies and their families to their prayers.



Being in the NICU surrounded by other babies struggling with various health issues is a constant reminder of the gravity of the situation. It's a place where you can see grown men crumple under the weight of the pain and fear. It's a place where beeping alarms and the rushing sounds of nurses stirs a collective panic in the chests of all present. And it's a place where good news for one can inspire smiles and hopes for others.



In my sister and brother-in-law's case, they realize the blessing that while what they are experiencing is painful and emotional, their son's condition is not life-threatening. Unfortunately, that is not always the case for all parents in the NICU. I'm sure that has played a role in keeping their faith and strength going.



That first night Aiden was transferred to Children's she kept asking, "Why me? Why my baby?"

I'm sure there are many parents who are asking those questions and wondering, "What is the purpose of all this pain and suffering?" If I could share my thoughts with parents whose babies do not have the odds in their favor, I would struggle coming up with a way to make it all better for them. I mean how do you? What can you say?



I feel compelled to DO something. But what? What can I possibly do? That is partly why I am puutting together this blog for my sister; to help keep a record of the details and emotions of this time. Even though they are living through it, each day's utter exhaustion is surely wiping away bits and pieces of the prior day's challenges.



I think about how lucky I have been and how easy it can be for me - as well as so many other parents - to take our children's health for granted. Looking in on this window of life in a NICU has reminded me to acknowledge the blessings in my life; to celebrate them. And for goodness sakes, always give just one more hug and kiss to my kids. And you bet I do.



Lately, if I find one of my kids buried in my blankets pretending to sleep so I won't move them to their room, I just smile and snuggle down beside them knowing how lucky I am that I can lie down cheek to cheek with my baby tonight. And when I my kids rush past me, I reach out and hug them just a little more often; and I hold them for a few seconds longer as I whisper a prayer for peace, comfort and courage to those mommies and daddies that might only have a few seconds longer.



If there is any good at all that can come from all the tears of loss shed in a NICU, maybe it can be the sense of honor knowing that one child's struggles served to bring more love into the lives of others.

Daddy Talk...

Here's what Aiden's daddy had to say today. I missed a few things in my update and he shares some poignant thoughts, so I'm sharing them here too:

Just arrived home from Boston. Aiden is still making slow strides. They've taken IV tube from his soon to be belly button and put it back in his tiny hand. Still very hard for us to see him with all that wiring, and little clotted pinholes on his foot that look like tiny red icicles.

But we had a great day feeding him and telling him stories about his
cat and his brothers and sister and other friends and family. It is so hard to walk out of that hospital and leave him behind everyday. I wish this on no-one.

We've met three other great families in Aiden's bay (in the NICU) all with their own stories of heartache and triumph. They've all become our good friends and we'll never forget them or their children.

Okay, I have to go find some Kleenex now.
(Hang in there Jim. Keep the faith and stay strong. Much love from our gang to yours and see you in less than a week!)