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!)

Monday's Update: Short & Sweet

Aiden is 9 days old today! It has been a good day too. Numerologists sing praises to the number 9. (But I still put my stock in God and the power of prayer). Aiden still has fluctuations in his blood sugars but the lows aren't dipping as low and the length of time he stays stabilized stretches out longer. Yay!

There was a minor issue with Aiden's birth certificate that my sister and her husband had to fix today. Apparently, the hospital listed my sister's first name as Aiden's last name. Oops.

My sister was able to get Aiden to drink about 37 cc's of milk today so he only had to get about 5 cc's through the feeding tube.

My mom called me all excited to tell me Aiden had another little graduation today. (The first was when he moved from an isolette to a regular bassinet.) Today, they took out the blood tube in his umbilical cord. I believe this was the tube they used to test his blood. They are now only testing his blood every other feeding.

My sister is hoping her husband will take a shift at work (this weekend I think, but I'm not sure when exactly). He is struggling with that knowing how hard it will be to concentrate with his son is still in the hospital. He also doesn't want to leave her alone. But never fear, mommy is here. Or well, there, actually. My mom is still out there with my sister and will be for another 2 weeks. So she won't be alone. I'm sure they will figure things out. It is hard to go from such an all-consuming crisis back into your normal routine. There's a bit of a time warp affect and a shifted sense of perspective when your entire heart and mind are focused on one single very important thing (like baby Aiden getting better!). My brother-in-law is a pretty calm, laid-back guy so he's probably better at coping with crisis in general, but I know for me, keeping yourself together while enduring all these ups and downs is so very hard. How can you not just feel completely splattered all over the floor and totally empty... except for the bone-wrenching weariness.

My family and I will be there this Sunday. I'm so excited to see my little Aiden-bug.

Riding the Rollercoaster of Love... & Despair

Now I lay me down to sleep, Jesus please let me go home with mommy & daddy this week....

BABY AIDEN SAYING HIS PRAYERS

During Saturday night, Aiden's blood sugar dipped again. This rollercoaster of highs and lows, hope and despair is truly taking its toll. I could hear it in my sister's wavering voice during our morning phone call today. Aiden is so sweet and tiny and beautiful; she just wants him to come home and "start" their family life together.

The daily commute into Boston is tiring. Anybody who drives the Mass Pike knows it's really not a joyride. My mom said it seems like the drive is getting shorter though; perhaps because they know the route by heart now.

But other concerns are lurking that make peace hard to come by. There is some concern over what parts of the care will and won't be covered by insurance. They feel hopeful they will be able to straighten that out but there is the added cost of driving into Boston, toll roads, parking and eating out so much more frequently.

But I know they'd drive across the earth to be with Aiden if they had to. In fact, there are some mommies with babies in the Children's NICU who live as far away as Los Angeles. My sister counts her blessings in living close enough to an excellent hospital so she can still have her husband, our mom and friends to support during this time of trial.

So the last few days have been a cycle of Aiden's sugars dipping down - usually in the evening hours. The nurses then have to increase his glucose IV. While my sister, her husband and other visitors spend the day with him, he nurses, takes a bottle and gets cuddled a lot. His blood sugar goes up, starts to stabilize and the nurses can turn down his IV. They had it as low as 3.5 today (I am not sure what measurement this is... as in 3.5 ml/per ???? But compare it to just a few days ago when the IV level was at 7 and higher.) I got a very upbeat phone call from my mom today telling me about Aiden's Adventures.

My sister, her husband and my mom spent about 9 hours in the NICU with Aiden today. She was able to nurse him a couple times and enjoyed his increased energy. He is more alert than in the
first few days.

My four kids (Aiden's cousins) made a Build-A-Bear Bunny for him when my sister was pregnant. They brought Baby Bailey the Bunny to meet Aiden today. They took pics (which I don't have yet) but said Aiden is the same length as the 14 inch bunny. Seriously, that is only 2 inches longer than a kids' classroom ruler. When we made the bunny, we put him in newborn fashion clothes that came with two bibs. Aiden is small enough they joked about using one of the bibs for him. My mom also teased about maybe going to buy some Build-A-Bear clothes to dress Aiden.

"We could use the little hole in the bottom for the stuffed animals' tails to put all his tubes and wires through!" She said. They do actually prohibit them from putting him in the cute newborn ensembles that is so much a part of the thrill of a new baby. Just as my mom and sister were lamenting how painful it would be the day they finally remove the feeding tube from Aiden's nose, he reached up with his tiny delicate hand, grasped the tube and yanked it completely out. Just like that. No tears. No coughing. Nothing. Just Poof... "No more tube up my stinkin' nose!"

Yeah, it was a funny little circumstance and they were happy to hear the nurse show up and say, "Well, let's see if we can go without it then." If he could drink enough they wouldn't put it back in. I can't tell you what a lightened heart it gave my sister to see one less wire attached to her precious little handsome. He still has the heart monitors but when he is all swaddled up, you really can't tell and without the tube in his nose.

The evening phone call from my mom and sister shared this fun, exciting news with me. I was so excited to share it with my dad and my husband. No sooner did I tell them, my phone rang and it was my mom informing me Aiden wasn't able to focus and stay awake long enough to drink enough milk. I guess he needs to be taking in about 36 cc's right now (just under 2 ounces) but the nurses could only get him to take about 21 cc's.

My sister is feeling a little (or perhaps a lot) helpless. She wants to head back to the hospital. I know what she's thinking, "I'm his mommy. If I was there, I'd be able to get him to do it." Oh, the pressure and guilt we put on ourselves as mothers; as parents. I worry about her a little because I know she is completely not thinking about her own health and recovery. Thankfully, my mom and her husband are doing a pretty good job making sure she doesn't overdo it. She really needs to take time to rest and put her feet up as she is having trouble retaining post-pregnancy fluid. We all worry if she's eating enough. But again, I know she is doing her best.

Something I thought was really kind of precious and thoughtful of her husband was that he took a picture of Aiden and put in on their laptop as a background and screensaver so my sister can see her sweet baby's face as she pumps.

So for now, it's more slow and steady. We're just hoping and praying that very soon, Aiden will win this race and get to come home.

As an aside, my family is preparing to leave this week for a road trip back east. We are eager and anxious to see Aiden and everyone else we love so much back East. By this time next week the Mateuszczyks will descend upon Massachusetts once again.

Hoping Aiden makes lots of progress between now and then!

DADDY FEEDING TINY BABY AIDEN WITH A TINY LITTLE BOTTLE. IT TAKES LOTS OF HARD WORK AND COAXING TO GET HIM TO DRINK JUST 1-2 OUNCES.

AIDEN'S COUSIN KIMMY

ERIC

MICAELA

A week of emotions, a lifetime of love

A week ago today (Saturday), Aiden was born. It’s been quite a harrowing week but I am glad to report that he had a good day today. My sister and her husband are spending a great deal of quality time both on the Mass Pike and more importantly, at the hospital with Aiden.

Today, Aiden’s daddy’s family – Grandma Shirley, Aunt Sandy and cousin Kimmy – came down from New Hampshire to visit. His Grandma Shirley was down earlier in the week but today, with Aiden gaining more strength and stability, they were able to enjoy a more relaxing visit.

My sister actually held off nursing until today and had a positive experience with it and is happy to know she will be able to start incorporate some nursing sessions into each day. He continues to have a feeding tube in his nose. Also, they will continue to supplement with bottles to try to keep a handle on how much he eats as this is important in how it relates to his condition. Aiden’s progress is basically on a track of two steps forward, one step back right now; meaning, his blood sugars go up, so they turn down the glucose IV. Then his blood sugars stabilize for awhile and dip again, so they turn up the IV. The important thing is his baseline of blood sugars is slowly increasing.

I believe my sister and her husband spent a good six hours with Aiden today before returning home. My sister is still quite exhausted, working on recovering from the c-section and managing her other complications.

Still no word on when he’ll get to come home, so for now, thank goodness my brother-in-law Jim is such an adept driver as they will be logging quite a few miles to and from the hospital. Everybody’s spirits are lighter and there’s been more room for smiles.

It feels like we've lived a lifetime of emotions for baby Aiden in this one week. What I am happy about is having a beautiful nephew to provide with a lifetime of love.

The Journey Continues: I Left My Heart in Boston...

Last night was a really, really tough one for my sister. I guess we knew it was coming. She was finally released from the hospital herself and faced with the experience of having to go back home without her baby. Before leaving though, my sister, her husband and my mom took the long walk over to the NICU to see the baby.

While Thursday morning's report was filled with hope, promise and progress, late Thursday afternoon brought with it another setback. Baby Aiden's nurses tried to turn down the levels on his glucose IV because he seemed to be stabilizing at a reasonable level. Unfortunately, he wasn't ready for that. His levels dropped from the 70's back to the 30's again. My sister was devastated. My mom and dad said she was refusing to leave the hospital. Well who could blame her? Would you want to leave? Where else was she going to go and feel like she was at all in a place she belonged? Having gone through this cycle of good news followed by a setback several times now, makes it that much harder to exhale completely whenever there is good news.

I am realizing this whole experience has brought up memories for my parents as they relive the ordeal they went through when my sister was born. She and her twin were born 3 months premature. My sister was born at 1 pound, 15 ounces while her twin sister was 2 pounds, 3 ounces. Technology and medical advancements have made it possible for so many more little babies to survive. Unfortunately, back in those days, there was no such thing as surfactant and my sister's twin (my other sister) died from collapsed lungs 2 days after she was born. My sister, the smaller and weaker of the two, was fully expected to pass away too. It was just a matter of time. But she fought for her little life.

"We'd hear good news, good news, then days of setbacks," my dad told me yesterday. It was an anxiety-ridden road. This is where faith, hope and character are tested in ways only those who face a struggle like this could fully appreciate.

Needless to say, last night was an emotional nightmare as my sister, her husband and my mom made the trek from Boston to home. The one hour distance stretches to eternity when they can't be with the baby. I think she must feel like he's on the other side of the world.

Even though she was home, I don’t think she felt that sense of, “Ah it’s good to be home,” that comes after a trip or vacation. They called the hospital a few times throughout the night to check on the baby’s progress.

They were back at the hospital today to see the baby and have enjoyed a good amount of time holding him, talking to him, cuddling him and even changing his diaper. Apparently during one diaper change Aiden did what boys do, and continued to “do his business” mid-diaper change. My mom said it had my sister giggling and smiling like nobody’s business. Faced with separation from your newborn obviously instills a deep sense of gratefulness and joy for experiencing the most simple of motherly tasks. I am comforted to hear that my sister is thoroughly enjoying every second she is with her baby.


My mom called not long ago saying that the baby’s sugars are back up and they are trying to turn the glucose IV down again. I guess this is just the process they will be continuing with until they can get him off the IV altogether. He is back to his birth weight after dropping, gaining (too much too fast from fluid and swelling) and so forth. He has also been moved from an isolette to a regular open-type bassinet. They are finding their hope and victory in whatever details they can; cheering each step of progress to keep a positive attitude.

My sister was also excited to be able to try nursing him for the first time today. Those who have any experience with this know it isn’t always easy under the most normal of circumstances, so I’m hoping she has a positive experience.

I’d like to take this time to say, my own personal reaction isn’t really the focus here at all, but I do admit that this has been an extremely daunting week. I feel as if I’m somewhat in another world; as if time has gone on but I’m somewhat standing still along with my family. I realize how I should be feeling gratitude for the health of my own children, and that while I of course love my baby nephew and my sister, I shouldn’t feel so deeply traumatized by this. But I do. And I make no apologies for it. I am blessed to have the ability to fully connect to and plug into what’s going on with people I love. I really don’t know if it helps share their burden or not, but I know that it’s just the way it is and I can’t change it.

I know how many tears and moments of heartache I’ve had this past week. I know how many moments of each day have been spent with baby Aiden and my sister’s welfare as the primary thought in my mind and heart. (All of them). I know that while I can’t say for 100% certain that I KNOW what my sister and her husband are feeling, I can say with all confidence that this is very hard for them. Even knowing that baby Aiden is better off than some of the babies he shares the NICU with, and even though we know in our hearts he is going to make it and what ever - if any - lasting effects may result, right here and right now, this is hard. As simple as they can make life now, the better - cutting away any other distractions.

If ever there was a time to cry, to allow feelings of sadness, sorrow and grief bubble to the surface, now is the time. Nothing good would come from trying to suppress or deny those feelings. They need to flow through my sister, her husband and the rest of us, so they can reach the light and disperse into the air, to be collected by God. I’m sure it’s why each morning we can wake up with a sense of hope. It probably helps that we’ve had almost a week to let this situation settle in our minds and truly become a reality; as does having a better understanding of what’s afflicting Aiden.

For now, we just continue to pray for the baby’s progress and my sister’s recovery – c-sections are major surgery and she’s had complications on top of that, not to mention stress. She's still moving pretty slow, needs rest and as much peace in her life as possible right now. As much as I'd really, really, really like to be there right now, I know that she needs calm - something the addition of other people's presence - my four energetic whirlwind children particularly, cannot provide. I'm hoping that the coming week will bring enough time for her to be ready to face my family at her doorstep.

And since the size and weight of every person’s struggle is largely dependent upon the angle from which others view it, we ask that those of you who pray and have compassion for the struggles of babies and their parents everywhere, to include in your hearts, the babies whose lives are in much greater peril and the mothers who sit by even more fearful and helpless as they pray for a miracle – for the chance to bring their baby home and see him or her grow into a wonderful child of God right here on Earth.

Thursday's Homecoming For One...

A lot has happened in the last 24 hours or more. My sister spent most of Wednesday being tested to determine the extent of her complications. Luckily, they decided she wouldn’t need additional surgery. However, they are still watching her.

Last night they spent time with the baby and felt he was doing better. His blood sugars still fluctuate but don’t seem to dip as low as they used to. They are holding in the normal range (at the low end) longer than they used to.

This morning, my sister called me ecstatic because she was able to feed her son 19 cc’s of milk (1 ounce) from a bottle. This is the most he’s taken in at one time yet. He still has the feeding tube down his nose – which he DID NOT like getting. But it’s there to help supplement his nutrition.

My sister seems hopeful that he is making a good amount of progress. Meanwhile, her doctors told her she could be released today. This is bittersweet since she is looking forward to going home and sleeping in her own bed and working on getting herself feeling back to normal – if that’s even possible after all that’s happened. What mother ever feels completely back to normal even in the most uneventful of circumstances?

“It’s going to be tough and I’m sure there will be a few tears, but we’ll get through it,” my mom commented about my sister’s homecoming without the baby. It’s got to be a very empty feeling in one’s heart and in one’s arms to have to leave the hospital without your newborn baby. My mom experienced this with both my sister and I when we were born, so I have faith she will be just the right person for my sister to lean on today as she gets accustomed to how differently this experience has turned out than how she dreamed it would.

One more piece of information they learned today is that he failed the hearing test in his right ear. He will retake the test in a couple weeks. At this point, this is just another hurdle my sister is taking in stride. She figures she will deal with it once they have re-tested him and know if he indeed has a hearing problem or not.


Another piece of news – for me, anyway – is Aiden’s primary diagnosis has a name: Hyper Insulinemia.


(This is the portion of the blog in which I employ my reporting skills as I share with you far more than you probably care to know about Hyper Insulinemia.)

WHAT IS HYPER INSULINEMIA?

Primary Hyper Insulinemia occurs in 1 in 50,000 live births. It is a rare but important cause of hypoglycemia in infants and children. It is the most common cause of neonatal hypoglycemia that persists beyond the first few hours of life.

Early diagnosis and treatment are essential to prevent seizures and neurological conditions or damage. While it is a condition (that we’ve obviously seen over the last few days) that can be recognized and treated, Neonatal Hyper Insulinemic hypoglycemia is still a severe disease with an important risk to rapidly develop severe mental retardation and epilepsy.

Hyper Insulinemia at birth can develop when the constant supply of high glucose from the placenta is cut off and the newborn’s blood glucose levels fall. This form of Hyper Insulinemia usually resolves after a few days of intravenous drip-feeding of glucose. My nephew is going on 6 days of this treatment. Obviously we do not know yet how long it will take for him to improve but the hope is, once they can stabilize his blood sugar for 48 hours the problem will be resolved. It is rare for it to recur at that point.

In newborns, as long as the blood sugar does not go very low (less than about 35 mg/dl in the first day or so of life, 45 to 50 mg/dl later) and the problem is corrected promptly, there is little risk that low blood sugar will cause brain injury.

Symptoms such as jitteriness or a seizure can be an indication that the blood sugar level has been low and that the brain has been affected (but not necessarily damaged). If a child has no symptoms and is promptly treated, even if that treatment is required for several days, there is little risk that brain injury will occur. Developmental delays could also present themselves depending on the length and severity of the low blood sugar.

Aiden’s blood sugar tested at 14 mg/dl which is considered quite low. I’m not sure how long it remained there; perhaps a couple of hours. It took them nearly 24 hours to get his blood sugar to come up to a reasonable level, and it has continued to fluctuate since. But as far as I know, he did not experience any seizures.
There are several other symptoms of this condition but the related ones I know Aiden DID experience include cyanosis (blue coloring), poor feeding and lethargy.
His additional complications are secondary to this condition right now and will just need to be monitored as he develops.



So now that my sister will be home, new challenges will present themselves as they will not have a home-base in Boston. They live about an hour away. I am not sure how this is going to affect their visiting schedule of the baby or his feeding schedule but I am sure they will figure it out.

I have told my sister several times that having a baby will completely turn her world upside down and her heart inside out. I also liked to tell her that it’s hard enough to bring a baby into this life and try to raise a child when you have a strong, solid marriage, much less one that is rife with problems. Never in my wildest dreams did I imagine she would have a crash course in those feelings. But I am proud of her strength and heartened to hear that during this time of crisis she and her husband have been able to hold each other up and provide each other the kind of love and support that is so crucial right now. I believe the silver lining to these circumstances includes deepening their bond and really bringing together her family.

Wednesday's Developments...

Well, today was supposed to be the big day when Aiden was born. As we are all well aware, he had other plans. What an emotional 5 days it's been.

The meeting with the doctor yesterday brought some relief, for awhile. My mom reported my sister and husband were in pretty good spirits, even spending quite some time with the baby last night along with some friends who came up to visit. But as to be expected, my sister's emotions have been overwhelming for her. Still we spent last night hope-filled that things were going to smooth out here. However, this morning other developments have brought new challenges.

My sister was going to be released today but they've decided to keep her. The silver lining is she will still be in the hospital and closer to her baby. The problem is, her doctor is concerned her health complications may be more significant than they thought yesterday. She will be going in for some tests later today. There's a chance she may need to undergo some surgery. We realize everybody is concerned but for the sake of her privacy I am purposely being vague here. Just know that it is not life or death, but still another emotionally charged complication added into the mix.

The baby was considered born at full-term originally but all of his behaviors are consistent with those of a premature baby. I am still not 100% clear on how significant this distinction may or may not be. I believe there are some tests they can do to determine how far along the baby really was when he was born. Perhaps the due date was incorrectly calculated; although that's somewhat water under the bridge now.

What I do know is he is so tiny that he doesn't have enough energy to be eating robustly. There has been a minor setback with this. He will only take in a little milk and then fall asleep. They have had to revert to feeding him through a tube. With all my experience in painting a picture of emotion with words, I am simply at a loss as to how to describe what it's like to see your baby hooked up to tubes and wires.

So for now, there is more waiting, praying and positive thinking in order. I feel like I've been saying it so much I hope the words don't sound hollow, but THANK YOU so much to those of you who continue to provide support in your own ways.

Aiden's Arrival: Through Auntie's Eyes

The last three days have been a whirlwind for my sister and her husband with the arrival of their son Aiden. His arrival into this world has been wrought with emotions. Here is the story through my eyes:

My sister went into labor Saturday, July 18. Her due date was July 27. The baby was breach so they did a c-section which she was expecting as they knew about the baby’s position ahead of time.
However, when you have a c-section you aren’t allowed to get up off your bed for 8 hours or more. After he was born they showed the baby to her as she was lying on the operating table, as they normally do, but then they took him to the nursery to test him.

Being a full-term baby, his birthweight was low at 5 lbs., 4 oz. His blood sugars also tested low, enough so they considered it critical.
Typically, all the initial nursery care on a healthy baby is completed within 60-90 minutes and the baby can be brought to mom. However, several hours after he was born, my sister still hadn’t been brought her baby. Bits and pieces of information filtered out and eventually at the 8 hour mark, she asked to be able to get up and be wheelchaired to the nursery.

Once there she was able to hold the baby for a few minutes but then his coloring turned grey. After more tests they determined he may have other heart issues that also needed to be dealt with. A number of decisions and plans were made and re-made elevating everyone’s fear level. Finally, they brought the baby in for her to say good-bye to him before transporting him to Boston Children’s Hospital, (a level 3 NICU) about an hour away from where she was. He was hooked up to monitors, wires, tubes, and IV, etc. This was very difficult for her to see as was just having to say good-bye to him. At this point she was told she’d be staying in the current hospital (an hour away) separated from her baby while she recovered from her c-section. Her husband was going to leave also and follow the baby to Boston. After all the stress she was under, we were all worried she might break down.

Meanwhile, my mom and I were still back in Minnesota. My mom had planned to fly out there Tuesday (today) according to the initial planned c-section meant to be Wednesday, July 22. A flurry of phone calls were made between us.

Many Angels on Earth showed up to provide support for her. At one point I spoke to my husband’s cousins who live out by my sister and who happen to be dear friends of mine. When I told them about the recent developments, they said, “Where is she? We’re on our way.” After a long day of their own, they hopped in the car and went to see my sister, who they consider family. We heard they would be able to transfer my sister to a hospital in Boston also so she could be closer to her baby. Despite texting this info to my friends suggesting they needn’t go sit with my sister, they went anyway. Thankfully they took matters into their own hands because my sister ended up not getting transferred for almost 2 hours. They stayed with her until they literally shut the ambulance doors to take her to Brigham and Women’s. Their presence during a very scary time has been an eternal source of comfort for my sister and something I appreciate more than anything. Some people just know when it’s necessary to drop everything and be there for another person no matter what, whether they are your best friend, an acquaintance or somebody you just met. I have the utmost admiration and respect for people who are so giving and compassionate. Not everyone is. Prior to that, the doctor who delivered her baby (and also happened to deliver my first child 10 years ago) provided a great deal of support above and beyond normal expectation under the circumstances.

Back in Minnesota, my mom anguished over whether or not to fly out early. She was having trouble with changing her ticket which became a several hour ordeal causing her and I both to get zero sleep that night. I spent some time talking to my oldest and dearest friend from North Dakota who shared her experiences with four nieces and nephews who spent time in NICU’s and had her sister (who is a nurse) help answer some questions and shed some light on the situation.

With several unanswered questions about the baby’s health, my wonderful husband got up in the middle of the night (okay, 4 a.m.) and got my mom to the airport where she was finally able to get her ticket changed and fly out to be with my sister.

The last few days have been one giant test in faith, hope and love. Many, many hours were spent on the phone encouraging, listening, supporting, praying.One exceptionally moving experience was when I shared the news of my sister’s birth with an acquaintance early on during Saturday before things turned scary. When I updated her Sunday morning about the events of the night before, she shared she had a feeling in the middle of the night that she just had to wake up and pray for my sister and her baby. Her story sends chills up my spine. In my heart, she has moved firmly into the friend category. She doesn’t consider herself an angel but God definitely is working through her to touch my spirit and my family’s. It brings tears to my eyes how much care and concern some people can have for strangers. Every single person’s prayers and well wishes have and do make a difference.

It is now three days later and my sister has had some complications with her own health. The trek between her room is quite far from the NICU where they baby is but she is determined to spend as much time with him as she can. They had a good discussion with the NICU doctor and head nurse today and learned that many of the baby’s health issues have been resolved. They are still concerned about stabilizing his blood sugars. He will likely not be leaving the hospital when my sister is released (which will be tomorrow or the next day depending on if they can resolve her minor complications).

They learned quite a bit more about the circumstances surrounding the baby’s situation. There are more questions to be answered but the good news is he is eventually going to be okay. We aren’t sure when he will be able to go home but he is making progress and that is very encouraging.

I can tell just by talking to my sister she feels more relieved and is feeling much more hope. This has been a difficult and challenging journey beginning with her pregnancy in which so many various little annoyances occurred from terrible morning sickness to trouble hearing the baby’s heart beat to contracting swine flu last month.

It’s been quite an emotional roller coaster to say the least. My sister has learned that she has a family who loves her and will do anything to be there for her in her time of need. She also has friends, acquaintances and even strangers who are investing time into praying for her and sending positive thoughts.

I’ve learned a lot and have been reminded of some really good lessons this past week too.
1) God is always with us. He shows up in the most unexpected places sometimes, which makes him all the more awe-some.
2) It is possible to love and miss someone you have never met to the point of tears as I do my baby nephew.
3) No matter how old you are, there are times when you still really want and need your mommy.
4) Sisters can say and do things for you that nobody else can.
5) In times of greatest need is when your friends will reveal the truth about how much they do (or don’t) care about you. Those that rise to the top are treasures to hold onto forever.
6) Things don’t always go as planned and babies have a mind of their own.

Great big giant thanks to everyone who has taken time to wish my sister and her baby well, prayed for her or spent time refueling my spirit, my mom’s and my sister’s husband’s during this crazy couple of days. Whether it’s been through private prayers of your own, a quick email or phone call, or even a little smiley faced note on facebook, knowing that you are thinking of us and reminding us you have us in your hearts has lightened the load. We probably haven’t been the easiest bunch to deal with the last few days but those of you who haven’t given up on us have our eternal gratitude.