Lots of milestones for Julia

The last few weeks have been huge in terms of Julia's development. She's tracking objects and people with her eyes, grasping toys, and of course she's still smiling. She even has begun to parrot us, sticking her tongue out to mimic us, laughing, and lots of baby talking sounds. What will be her first word?

Please enjoy this video made from clips over the last month. 

As always, much love to everyone out there, a special comforting wish for all our family in Arizona. 

Auntie Val, We can't begin to tell you how much you mean to us. Kisses and more kisses. Big drooly kiss from Julia. Heavenly kisses from William.

All our best,

Liz, Tom, Julia, and ^William^

Julia's 3 months old

How the heck did that happen?

We knew these good times would go by quickly. But you never really get it until it happens.

Julia's been doing well. Our last meeting with the hematologist was very promising. It appeared at that time, that Julia could possibly be on her way of "outgrowing" whatever it was that caused her such harm in utero. But more recently, her last blood test didn't quite follow the same upward (happy) trend we were used to seeing. Sooooo we are still in this waiting game of trying to figure everything out. 

It would be so so so amazing if she just got better. We shall see. 

We know you all keep thinking of us and we very much appreciate it. Also, the gifts we received are so much more than we could have imagined. Thank you to everyone! Julia loves all her presents :)

Will update again,

Liz and Tom

Julia at Fenway Park!

Last week we had the opportunity to take Julia to her first Red Sox game. She may have been the tiniest fan there. As we were walking down Lansdowne Street we looked at each other and smiled. Again it's hard to explain these feelings, let's just say it felt incredible. It was another event we once thought impossible. Hard to believe it was actually happening. We always dreamed of taking William there. Auntie had an outfit made especially for him, it's now in his memory box. He wore the hat the day he was born. While still in the womb, we did bring him to the park once. It was a very happy day and we are thankful for that. Here's to another happy day with our Julia. If William could have been there, he'd be right there besides us. We think he still was.

Special thanks to the newlyweds, Laura and Kevin, for making this event possible :) Congratulations on your marriage. We are so happy for you.

More thanks to Auntie Shirley and Uncle Bob for Julia's red sox outfit, which we dressed her in and that she promptly peed all over. Maybe she'll wear it longer next time. 

Sharing clips below. 

xoxo,

Liz, Tom, Julia, and William

Julia's 2nd Month

Julia is two months old today.

Over the past month we have settled into home life quite beautifully together. We adore the heck out of this little one. We made room for her in our apartment by selling a bunch of our furniture (who needs a dining room table anyway) and buying us some baby stuff. It's about time.

From as far as we can tell, Julia's doing really well. She's growing and growing. Today she weighs 8 lbs 6 oz - That's about 2nd %ile for 2 month olds but 47 %ile according to her "adjusted age", go Julia :)

We check her blood counts regularly at children's hospital and she is a trooper. We think the blood draws affect us more than her. Julia is very lucky to have an Auntie who is also a pediatrician. We call her super Auntie. Auntie has given us plenty of advice on how to make the best out of each doctors visit.

The last time we checked Julia's blood we got some good news. See, Julia receives type O blood for all of her transfusions even though her own type is A. After the last transfusion she was typing as O. But the last blood draw she typed as A. The fact that she is typing A means that she is making blood cells. And this is very good in and of itself. The problem is that under a microscope, her cells appear small and "emptier" than usual, meaning they aren't the greatest looking red blood cells. We don't really know if her cells will be able to handle the demands of a growing Julia yet. But we will continue to monitor and keep you all updated. For now we are just glad she has the ability to create red cells.

Please enjoy another video full of her second month memories!

xoxo
Liz and Tom

That smile

it's contagious, isn't it?

One month old

Julia is one month old and will be surpassing her due date (June 30th) this week. She's growing well and feeding better. Now that we are home we are actually getting better rest than when she was in the nicu. Home life with baby Julia is all we've imagined it to be.

It's a whole new world for us now with our daughter.  Exploring the city together is so much fun. We feel like we are seeing everything for the first time with her. It's awesome.

Julia's blood count is dropping again. Her first hematology appointment since being home is tomorrow. Will update again.

Enjoy her latest video :)

Bringing Julia home

Bringing home a newborn baby is always cause for celebration. But when you go through a pregnancy after loss and then get to bring your living baby home - well there really isn't a single word that captures all those feelings, all those feelings we just felt. We brought Julia home. We brought her home!

We did it. Julia, William, and us. We all had our part but if it wasn't for William we'd never had known what we knew to help Julia so early on. William - we love you so much.

Please enjoy a video of Julia's last day in the hospital and her first ride in the car home.

Today, we went to the pediatricians and they say she looks like a healthy little baby with an anemia problem that we will just have to figure out. And that's certainly another cause for special celebration.

We feel like celebrating every single day.

Cheers,
Liz and Tom

Julia's first transfusion after birth!

On Saturday we decided to transfuse Julia. Her blood count had been hovering a bit low for over a week and it was time. You may wonder why we waited this long knowing she was anemic.  We wish the decision, like many decisions we've made along this road were easily explained. But they are not. We are constantly challenged with making choices that could affect her health in either direction. Sure, it wasn't a life or death decision, but still these things weigh heavy on us.

One thought has been that her and William's blood disorder may be fetal specific, affecting them more in the womb than out. This would be a very very good thing.

But we just don't know for sure yet.

What we do know is that Julia's count was normal at birth but has since decreased.  There is a normal physiological response to being born where baby's blood count drops, and it is seen especially in preemies. The first question is: is Julia's blood count decreasing due to her anemia or to this natural "dip"? And the second question is: how will she eventually respond to this dip, will her bone marrow kick into gear and start making effective blood cells? The latter is something we thought was impossible before her birth.

In a few months we will intentionally let her count dip again to see how she responds. But for now she needs new blood to feed better and grow.

It's day 3 post transfusion and she is bright eyed and more energetic than ever. She's pulled out her ng tube and the nurses decided not to place it back. If she continues to feed well by mouth we get to go home. You guys, we may get to go home this week!

Tears and more tears of happiness.

Enjoy her latest video, we don't want to jinx anything but this could be footage from her last weekend in the nicu.

Xoxo,
Us

Julia's third week

Julia has surprised everyone once again. We have postponed her transfusion twice now because her blood count has leveled off and has been stable. We've been told that her number, while still a bit low, isn't low enough to significantly impact her growth. Tomorrow we check again. Each time we check, she loses a little bit of blood, so we are trying to space out the sticks.

We've almost given up trying to make sense of it all. On one hand, there's frustration of not knowing what's going to happen. On the other hand, she's doing just fine - our little nicu rockstar - living and breathing and happy.

We have noticed that Julia has become more tired this week. Sometimes she falls asleep during feeds and requires her NG tube for feeding. Her fatigue could be due to her anemia or just prematurity catching up to her.  Even though she's 3 weeks old, she should still be in the womb for 3 more weeks. We are constantly reminding ourselves how well she's doing despite her anemia and being born 6 weeks early.

Please enjoy another video of our little trooper!

Precious moments

More precious moments of our Julia bear :)

Julia's second week

Julia's blood count has been trending down over the last week. She has a big group of hematologists from the children's hospital who follow her every day. She's their tiniest patient. Only time will tell how her ability to make red blood cells will react to this drop in hematocrit.

Despite this news, we are still remaining positive. She hasn't shown many clinical signs of her anemia yet so we are holding off on transfusing.  She appears healthy and well, she's a bubbly baby that smiles often and loves cuddling. A few days ago we heard just how powerful her lungs can be when her cry reached a decibel we haven't heard before. Burping did the trick. You would really never guess just how sick she was in those early days in utero with how she looks and acts today.

Julia's had quite the journey so far. The tears in our eyes well up often. We have been allowing ourselves to truly imagine a life with her. And it feels good. The nicu is a tough place to be sometimes. We can't wait to go home.

We hope the best is yet to come.

Enjoy Julia's second week of memories,
Xoxo
Liz and Tom

Julia's first week

Julia has progressed very very well during her first week in the nicu. Someone needs to pinch us again. We are in awe of her and so so thankful. She continues to breathe on her own with no problem at all. Her heart rate has been stable too. It's all about graduating in the nicu and this week Julia graduated many times. Recently she graduated out of her isolette into an open air crib and has been able to maintain her body temperature. So far so good, folks.

Her hematocrit (the proportion of red blood cells in her circulation and a marker for anemia) has been surprising normal and has remained stable since birth. This is reassuring yet perplexing given how her hematocrit was always really low in utero. Her hematologists are working hard and following Julia every day as she grows. They will be her "go to" doctors moving forward. There will be lots of blood tests in her future, but she's a trooper and they haven't bothered her... yet.

Her neonatologists think she may be able to go home earlier than expected, all she needs to do is work on feeding and remain stable in other areas of prematurity. It all depends in Julia.

Please enjoy her first week of life's memories in this movie we made. We are savoring very single minute we have with her. Taking nothing for granted. She's our whole world, her and her brother.

Xo
Liz and Tom

Julia , our one week old little bundle of joy.

Cutie bear

A little about Julia

Julia loves to be cuddled and held. She was first brought to the "critical" nicu bay for her first four days of life. It was the same room where her brother lived part of his life. We feel that William was watching over her, soothing her little soul and making her feel right at home. She was very content in that room, as were we.

She breastfed hours after birth but would not take a bottle so a feeding tube was placed that supplies her meals directly into her tummy. We are working on breastfeeding before and during feeds so she can associate the feeding reflexes with a full stomach. it's going well. She's required very little help in terms of breathing on her own. Her stats are consistently within target range. She has remained in an temperature controlled isolette until she can hold her own temp properly. She requires light therapy for jaundice. Notice how yellow her coloring had been? Her blood counts are currently not a concern but are checked every few days. Her hematology team remains puzzled but have an ideas of what may be going on. If they are right, it could be very good news but the consensus is that we still have to take it day by day.

It didn't take long to realize that her needs were changing, from concern over her anemia and more critical care of prematurity to where we stand today. On Sunday, she was stepped down to the section of the nicu that houses lesser critical babies. Here she can grow and hopefully hit all her milestones, like feeding by mouth, holding her own temperature, etc. Yesterday, she was completely weaned off her sugar water drip and the bulky IV in her hand came out. Another step in the right direction.

We had a meeting with her doctor and social worker and will have another at the end of the week. Everyone remains amazed by how well she's doing. We are shocked. Really, someone pinch us. It's like a dream. It's a lot take in. We are riding the wave but it's a bit hard sometimes to allow ourselves to be happy. We know this may sound strange despite how well she's doing. But it's been a long pregnancy with lots of up and downs. We don't quite know how to handle good news anyone. Her primary neonatologist actually used the word miracle to describe her birth and health status. After William died, we didn't really believe in miracles anymore. But Julia may be helping us to believe again.

Thank you for all the prayers and well wishes. Julia has had visitors every day, she loves meeting all of her biggest fans.

She's changing every day, too. Enjoy these precious moments with us, video below.

Xoxo
Liz, Tom, William, and our new cutie bear, Julia

Julia's birthday video

Julia's first auto awesome video

OverJoyed

Julia Joy miraculously entered the world on Thursday, May 19th 2016 at 11:17am. 

She weighed a hefty 5 pounds 3 ounces and measured 18.5 inches long.

She took her first deep breath and then we heard her cry. And then we cried. Tears of Joy.

Seconds old

First photo with mommy and daddy

First photo with William :)

Hello world :)

Taken at 22 hours old. Our mini bear, Julia content in daddy's arms giving the camera a wave.

A lot of Joy

We. cannot. get. enough.

Julia has done very well for her first 20 hours of life. She's been breast feeding and breathing on her own. Her heart and lungs are doing a perfect job so far keeping her oxygen levels in normal range. She has a tendency to pull her IV out but doesn't cry when they place a new one in.

Julia's anemia is much better than expected and she has not needed a blood transfusion. It's almost unbelievable. We have no explanation yet. This little pixie has all her doctors stumped.

High five, Julia.

Her big brother's spirit soars all around her. Little William, looking out for Julia - it's so precious to witness all this Joy.

We love you, William - best big brother ever.

In daddy's arms 

In her isolette, a small feeding tube was placed down her nose into her tummy for added nutrition because she wasn't interested in the bottle during last feeding, very normal for 34 weekers. We are very very thankful that she had been receiving donor breast milk through her tube to supplement feedings until my milk comes in. She loves breastfeeding and we will be trying again today :)

Happy birthday, Julia

Julia's here and she's exceeded all expectations. Today is a dream come true. Someone pinch us.

More photos to come...

Julia nice and content after sucking on her milk on a stick

The night before Julia was born

Tomorrow is the big day. We are so thankful for making it this far. Julia will be born at 34 weeks exactly and that was our goal. We've loved being pregnant again, this time with a little girl. Every kick has brought us happiness. We've watched her grow and gotten to know her through her scans, 50 scans to be exact - that's what you get with a very high risk pregnancy.

We've thought we lost her twice. Then we watched as she kept growing and getting better. We don't know what will happen tomorrow. Nor what will happen months down the road. But for us to be imagining the future is something to hold onto.

Please be thinking of Julia tomorrow.

Things to pray for:

That she lives.
That her heart beats well.
That her lungs are strong enough to breathe.
For a successful post birth transfusion.

We can't wait to meet her and share more with you.

Xoxo,
Liz and Tom

Julia during her last scan, she doesn't seem too happy to have her photo taken! We love you Julia!

Julia's 4th IUT

Julia had her 4th intrauterine transfusion 2 days ago and she did very well. She may have tried to grab the needle a few times :-o curious little baby! But our doctors stayed calm and transfused the full amount of blood she needed, which was a lot more this time around. She is growing so big. We are already very proud of our little bear. Grow Julia grow. Julia's heart was monitored for several hours after the transfusion and everything looked great. A follow-up ultrasound this morning confirmed she is still doing well. 

We are so thankful to be 30 weeks pregnant! Baby Julia weighs over 3 pounds. Her next milestone may just be her birth in 4 weeks time. We won't have a scheduled date for a while since we are still taking it day by day. It gives us reassurance to know that preemies born at 34 weeks are nearly as likely to survive as if they had been born at term. Of course, we are still very very very nervous how she will respond to life outside the womb, how her heart and lungs will manage given her anemia. We still have no clear prognosis or diagnosis, it's hard to process the unknowns. We try to live in the present.

Please keep thinking of our sweet girl, more updates to come, this next month will surely go by very quickly for us, 

Liz and Tom

Happy girl after her transfusion

Just because

Another great ultrasound for Julia this morning, she was sleeping but still scored 8/8. You go girl ;-)

She finally moved a bit so her placenta no longer blocks her cute face. It is now wrapped on top of her head. We think she looks like William, those cheeks.

Have a happy weekend, everyone,
Liz, Tom, William, and Julia

Julia Joy, 29 weeks 2 days

29 week update

Julia is doing good, everyone.

Her anemia seems to be under control and her heart is responding very well. Last Friday, for the first time Julia's heart appeared to be normal in size (it's always been large just like William's). AND there is no longer any fluid around her heart. This is very very good news. With her heart functioning appropriately from the transfusions, her other organs are able to get the oxygen they need to develop and grow. She has come such a long way. We really can't believe it.

Julia continues to do a fantastic job on her ultrasounds. The sonographers examine a bunch of variables in a test called a biophysical profile (BPP). She has scored an 8/8 every time :)

Keep it up, Julia Joy! Your big brother must be looking down so proud of you.

Next transfusion is sometime next week, please be thinking of us.

Love,
Liz and Tom

From ultrasound last Friday, her placenta is hiding half of her face.

Back home, still pregnant :)

Let's see. So much to update.

First, Julia is doing well :)

Julia had her 3rd intrauterine transfusion about a week and half ago. It went very well. No complications during the transfusion and none afterwards. It was the easiest one so far. To be honest, we were not comfortable with announcing the transfusion ahead of time. We are just so happy to update now that we know it went well. 

Julia's heart was monitored for 2 hours on the labor & delivery floor after her transfusion and looked great. We continued to be monitored around the clock back in our antenatal room later that day. Julia's pre-transfusion blood count was better than anticipated. This means that we can go even longer between transfusions. Next one is slated for about 3 weeks from now and it could be our last before we deliver if her blood count and health is better then expected again.

Last week they let us go home. Julia kicked butt on all her non stress tests and biophysical profiles (two measures of health for babies). Her amniotic fluid levels are back to normal and doctors are confident that the rupture may have sealed. Plus I have no signs of labor and no signs of infection. We booked it out of there and have been living it up at home since.

We are almost 28 weeks now and Julia has no signs of heart failure or hydrops. Next check is later this week.

So much has changed over the last month. We hope this update provides some insight into what we've been through. More and more, we are feeling a mix of heavy emotions. In particular, grief is hitting us hard, but we've come so far and we are feeling that optimism again. Maybe, just maybe everything will work out. Maybe she'll survive. 

Thank you for all the cards, flowers, food, gifts, thoughts, prayers - they brought a smile to our faces in the those scary days in the hospital and kept us busy :) We really can't thank you enough. 

Love,

Liz and Tom

Julia giving us a little peak.

Playing a game in the hospital.

Julia's first Easter egg :)

Good news and bad news

The good news is that Julia is OK. She is kicking around in my belly as I type with no clue what has been happening over the last week and half. This makes us feel good.

The bad news.
Shortly after publishing the last blog post, my water broke. That night we went to bed still in awe of having gotten through another transfusion and somewhat lulled into dreaming it would all work out. Then I woke up to my water breaking and in an instant everything changed.

We flew to the hospital, trying hard to avoid the potholes along the way. Tom ran a red light. Our doctor quickly confirmed the diagnosis: pPROM (preterm premature rupture of membranes). Julia was 23 weeks 2 days gestation - a period of time where some hospitals wouldn’t even try to save her. Luckily, ours would. Even more luckily, they didn't have to.

I was immediately admitted, hooked up to IV, pumped with antibiotics, consulted by the NICU team (same NICU doctors as with William, can you believe it?), anesthesia consults, tons of MFMs, residents, fellows. We couldn’t think straight. We were told the odds of survival were not great, only ~20% of babies survive at that gestation, not to mention that our baby had an underlying disease. It’s impossible to really explain how it felt. We had come so far to protect her from the anemia and now we were faced with losing her to prematurity. Labor usually occurs within 24 hours of your water breaking. So we waited. I laid on my hospital bed and didn’t move.

I never went into labor.

I’ll spare you all the details - but things are looking much better than last week. I have been stable for the last 5 days. We are almost 25 weeks, where her chance at surviving birth has now jumped up to ~70%. With each day, she grows larger but she also grows more anemic. Our immediate concern is infection and premature birth. But she will need another transfusion in ~2 weeks, so that will be a huge hurdle.

One day at a time. We are trying to harness the power of positive thinking. We've done enough negative thinking and don't have the capacity for it anymore.

Please be thinking of Julia, she's so strong, more updates to come,

Liz and Tom

Julia's transfusion

Julia did very well during her second transfusion. Her blood count was indeed low again but the doctor's were able to transfuse some nice donor blood without complications and get her count up to normal.

We are so happy she made it through another transfusion. Once we get through the next ~24 hours we should be able to breathe a big sigh of relief.

She's kicking me as I type :)

Thank you for the wishes today,
Liz and Tom

Julia's bump and her lamby toy

Big day tomorrow

Julia's MCA's have been trending upwards, today's ultrasound showed the highest reading since her last transfusion. Our doctors have decided to check her blood count in order to assess her anemia before things get worse. Unfortunately, the only way to do this is to sample from her umbilical cord and of course, this is quite a scary thing. Based on her count, the doctors will decide whether to transfuse or not.

We knew this day would come and feel confident in our doctor's ability and Julia’s resilience to make it through alright. We are so thankful for getting more time in between the transfusions than anyone anticipated. Every day we've had with her is a blessing. The positive note here is that Julia appears to be much stronger this time around compared to last transfusion. But fingers remained crossed.

We know you are all thinking of her and sending prayers. Please keep Julia in your minds tomorrow afternoon especially.

Much love,
Liz and Tom

Enjoy more photos of our cutie pie :)

Julia Joy, a few weeks back

We caught her smiling for the camera!

Julia's ECHO

Donate to Noah's Jump Rope for Heart ~ extended deadline is this Friday!

Julia's ECHO went well today. This was her second one and she was a trooper. Her heart appears structurally normal, so reassuring news there. There is a small amount of fluid around her heart, it's called an effusion and she's had it for a a few weeks now. Fluid accumulation in a baby is never good (William had it too) but we are keeping a close eye on it. In theory, this fluid should lessen and disappear after transfusions. So, lets hope it does just that. Julia's heart is contracting well and the output looked normal today - this is the most reassuring news.

We are checking Julia quite often. We think she is doing excellent, given the situation. Go Julia!

We are once again overwhelmed by all the well wishes, emails (that still remain to be answered), gifts, and texts. As always, we appreciate your support. We have been so emotionally and physically drained and are just now catching our breathes, but will try to update the blog more often.

xoxo,
Liz and Tom

Enjoy some ultrasound photos of our little girl :)

Here's Julia, just 22 weeks 5 days old

She's yawning or eating, little mouth open

Leg and foot pushing up against my belly :)

Hand over face, silly baby

Rare Disease Day

First, quick update on Julia:

Today's scan was good, as in there was no bad news. Julia's condition remains stable and we are happy to have been able to wait longer between transfusions than expected. We will take a close look at her heart tomorrow with a specialized test called an echocardiogram.  Tomorrow's ECHO should give us an idea of the severity of her anemia and how it's affecting her heart. It will also check her heart for any defects. Fingers crossed.

~~~~~~~~~~~~~~~~~~~~

Today is Rare Disease Day.

And get this...
I scored a free hot cocoa and cookie because of it. They were delicious and Julia kicked me perhaps in delight, so I think she liked them too. But forget the cookie. What's incredible to me, is that the company giving them away (a cookie truck) was parked only just steps away from my building. And I just so happened to have walked by at the right time. And they were doing this good thing in support of rare diseases. And both my babies have a rare disease. Crazy, right?

It was one of those times, you know, that you get the feeling the universe is trying to tell you something, that the Big Guy upstairs is giving you a nudge, that your angels are making sure you know they're there - and they get it. Sometimes I feel very alone and frustrated that my babies carry this rare unfortunate disease. Then something like this happens and I realize, once again, I'm not really alone.

It's nice to see that there are people advocating for increased research for rare disease and coming together to support this cause. Even the pope made a special blessing today for those affected by rare disease. I hope this post spreads the word further.

I feel all the love you've sent my way, thank you.
Liz

Julia's belly bump and my free hot cocoa for Rare Disease Day

Giving back

Thank you for all the prayers and support.  Elizabeth and Tom really appreciate all the love you have shown them over the past month.  Many people tell me they feel helpless and want to help.
After the first transfusion Lizzie really started to feel stronger kicks from Julia.  She told me she wanted to find the donor of the blood and hug them.  Donating blood would mean a great deal to both Liz and Tom right now.  Liz will be going for another interuterine transfusion this week.  These transfusions are providing the only chance our Julia has.  Below is a link to help you find the closest blood drive.

Red Cross - Give Blood

Noah also is raising money for jump rope for hearts again in honor of William.  Please consider donating.

Noah's Jump Rope For Heart Page

Ultrasound photo of William

Glimmer of Hope

Liz wrote an amazing post about "hope" back in September.  It is truly amazing how powerful hope can be.

"Hope is the only thing stronger than fear."

Hope helps us through our darkest moments and it has been a constant theme through both of Lizzie's pregnancies.  Lately we have been hoping for answers and last week we FINALLY got some.  A hematologist in Boston has been reviewing William's information and he believes he has some insight into the type of anemia shared by both William and Julia.  It appears to be a very rare recessive form of fetal anemia.  This physician has only seen a handful of cases in his career.  The doctors believe that fetal interuterine transfusions may help Julia's anemia.  Each transfusion comes with risks.  However, we have some hope which is more than we had a few weeks ago.

Lizzie had the first IUT (interuterine transfusion) Monday and it well very well.  Julia was pretty anemic and she got some fresh blood which she desperately needed.  Yesterday we found out the MCA is improving.  This is wonderful news, however, there is a very long road ahead.

With this successful transfusion behind them, Lizzie and Julia will be undergoing more transfusions.

This "glimmer of hope" has dissipated some of darkness of the emotional storm Liz and Tom have been enduring these last few weeks.  This alone is reason to be grateful, have faith, and continue to pray.
Keep the prayers coming and thank you for all your love and support.



Julia Joy 20 weeks.  She is kicking Lizzie hard and getting stronger from her transfusion. :-)

"Hope is putting faith to work when doubting would be easier." Thomas S. Monson

Julia Joy

Julia Joy is 19 weeks old.  She is kicking Lizzie daily and is about the size of a heirloom tomato.  I can't really begin to explain how much this little girl is loved already.

Liz and Tom have just received news that Julia appears to have the same condition as William.   This rare form of fetal anemia is still leaving the finest doctors at the Brigham stumped.  Liz had a scan Monday showing an enlarged heart with fluid developing around it.  This appears to be a more aggressive form than William had since she is showing symptoms earlier in gestation.

The prognosis is poor, however, Lizzie and Tom won't stop fighting for their daughter until they leave every stone unturned.  Nothing is without major risks at this point so now they are weighing all the risks of any procedure.

This news clearly is devastating to our family.  It's seems almost impossibly unfair for Liz and Tom to have to go through this again.  We appreciate all the prayers and support you have shown our family.  Please continue to pray and leave comments on the blog.

Liz and Tom are devoting all their attention and time in an effort to determine the next best step. This is an extremely stressful and difficult time and although they love you all, the best way to show your support is to leave messages for them on the blog.  They are just unable to reply to texts and calls right now.

Below is a picture of Miss Julia Joy

A year of grief after the loss of our baby

There is just no way but through.

Over the past year we experienced all the “firsts” without William. Through this blog, we’ve touched upon some of them. They say it is the hardest year to get through. Of course, if you’ve been following our journey, you may have witnessed some of our experiences from intense pain and heartbreak to slowly finding joy again and healing. We are sort of astonished that it’s been one year without our little guy. We never thought this is where we could be.

In the beginning of this year, when we thought of William we usually imagine his cute little smirk. But there were also heart wrenchingly sharp images that made their way into our minds. We wish they didn’t. Watching our baby fight for his life, the look on the NICU resident’s face when we gave the OK to stop resuscitation. Handing our baby to the nurse and watching as she left with him in her arms, knowing we’d never see him again. They are seared into our minds. Even auditory triggers, the monitoring noises from the NICU when we were losing him. The long beep on his heart monitor that followed. The decisions we were faced with in the days after his death. The image of his little white coffin, the feel of it - covered in soft embossed felt - it is something we will never forget.

But we’ve found that if we push these sharp images to the back burner, there will be more room to remember him in all the beautiful ways in which he existed.  The feel of his head on our lips, the touch of his back, the clench of his hand around our index fingers, the way he would kick the moment we started reading to him in bed while pregnant. These are the memories we push to the front and try and focus on when remembering our sweet William.

Many friends and family have stuck by our sides this year. Some relationships have lifted us up in ways we never expected. Some of you simply have the capacity to deal with it. Call it courage, call it empathy - we call it love. We feel extremely lucky that you all have stuck with us and it is so heartwarming to hear that you have been strengthened through William’s story.

We have also turned to God this year. He’s the main reason we believe we’ve healed the way we have. Yes, we still have questions, but we are learning to focus not on those questions (why, why, why) - those are the questions that will only haunt us. We instead give it up to God. Even if we did know why, would it make us feel any better? Would it change the fact he died? We know he is with God and that brings us peace and comfort when sometimes nothing else can.

Over the past year we sold our house and moved closer to the city, setting off on a fresh start. We traveled too. All we wanted was to run away and we were set to make it happen. The more we tried to escape it all, the more we realized that grief follows you wherever you go. And comes back with a vengeance crashing over you like a wave. You cannot escape it. We found that out time and time again. No matter where we were, whether it be on a train, in a cafe, on our hotel's balcony, we could be swept up in tears anywhere.  We're learning to live with grief and even embrace it as it becomes a part of us.

We remember thinking, after a long trip to Europe, that maybe we’d come home and it would all be a dream, a nightmare we would wake from. The hospital would alert us they have William, safe and sound, there was some sort of confusion, they were terribly sorry, and we could pick him up. We’d strap the carseat in, go get him, and start our lives up again, the lives we should have had. Ridiculous, we know. That’s how this year felt sometimes. Totally, impossibly, unbelievable that he wasn’t living anymore. That we never got to bring him home. That his outfits remain unworn. His little feet never even touched the ground. Yesterday, we baked a birthday cake for our baby knowing he would never be able to sink his fingers in and make a complete mess.

Somehow we find solace by facing these truths and are discovering a newfound courage to accept them and move forward toward a bright future.

Over the past year we loved hard. Each other, our family, friends, especially our William. Without knowing what tragedies someone may be experiencing, we have tried to be kind to everyone we met and treat others as we wanted to be treated. We’ve noticed how much we have grown this year. In ways we feel ancient having experienced this loss we were never prepared for. We’ve also noticed a change in all of you. The way we are able to slip his name into conversation during family gatherings - it speaks volumes.  We were so afraid he wouldn’t be considered part of the family or that people would forget him. We know now this could never happen. You guys won’t let it. We want you to know that your thoughtful actions never go unnoticed. Thank you.

Happy 1st Birthday, William

Dearest William,

We would have given you the whole world. But instead you have the entire universe at your fingertips. How we wish we could come visit you in heaven, give you kisses and big hugs, play together, open presents and eat cake. We will someday be together, William. For now we feel your playful spirit soaring all around us. We’ll have cake down here and sing to you, our child. So many people who love you are also thinking of you today, you are so special to us and make us so happy. We love you very much.

Happy Birthday.

Love, 
Mommy and Daddy

Giving Thanks

This is technically William's second Thanksgiving. But his first in heaven.

This year we give thanks for our sweet William, he has enriched our lives and made us so happy.

Happy thanksgiving,

Liz and Tom

Halloween in Heaven

We woke up this morning like usual, thinking of William and wondering if someone up in heaven would dress him up for his first Halloween, whispering to whoever was listening to take photos.

This time last year, William was growing well as evidenced by my swelling belly. We'd sing to him, one of our favorite songs - this little light of mine - but instead of "light" we'd sub in the word "pumpkin". Amidst the news from the doctors that there could be something wrong with him, we were still optimistic everything would be OK. And so we dreamed of his first Halloween, dressing him up in costume, thanking our lucky stars that it all turned out OK. Those were the days.

We still dream about dressing up future kids and cannot wait till we have that opportunity.

For now we send all our love up to heaven and wish we could send his R2D2 onsie up there too.

Happy Halloween, little one. We love you, pumpkin!

Xoxoxoxo

A Candle for William

We love lighting candles for our William. It's a way to honor him and there's just something so comforting about having that small flickering of light in our home. It's a symbol of the heavenly presence that surrounds us whenever we think of our little guy.

Over the summer, we were given the opportunity to reserve a perpetual candle for William at our local shrine, Saint Anthony's. How exciting, a candle that is lit all day, every day! The candle is located next to the Mary, Mother of God statue in the chapel. We've found that visiting his candle is a nice way to check out of the bustle of daily life and check in to see how he's doing in a nice, peaceful, sacred place. There, we can also ask Mary to send our prayers to heaven through the perpetual burning of William's candle.

PRAYER TO

MARY, MOTHER OF GOD

   

Holy Mary Mother of God,

Never was it known that anyone 

who asked for your protection, 

implored your help,

 or sought your intercession

Was left unaided.

Inspired with this conconfidence,

I come to you,

O Virgin of Virgins, my Mother,

To you I come.

Before you I stand, sinful

and sorrowful.

O Mother of the Word Incarnate,

Be open to my petitions,

And, in your mercy, 

hear and answer me.

Amen

Visiting his candle really does light up our lives. If you visit the city, we'd love for you to stop by the shrine to see it. You'll find it in the top row, right in the middle above the kneeler.

xoxo,
Liz and Tom

Mary, Mother of God Shrine, Boston MA

“…The people who walk in darkness will see a great light. … 

Those who live in a dark land, the Light will shine on them.” 

-Isaiah 9:2

William's candle shines bright :)

William's Mementos

Along this road of life after loss, we've accumulated messages and gifts from family, friends, even people who we've never met but were moved by William's story. It's pretty amazing. Our goal this month is to revisit all the beautiful cards and small tokens that have brought us comfort over the year. They mean so much to us.

You may wonder how we are doing. And it's easy for us to say "OK" or even "good" because sometimes it's just easier than explaining how we really feel. Most of the time there aren't any words but something has to come out. As we come closer to William's 1st birthday/anniversary of his death we feel like we are where we should be. It's hard to say we feel good, because well... sometimes we don't. Some say that you never really get over losing a child, you just learn to live with the pain. We find this to be true so far. We miss him everyday. But he also brings us happiness everyday with his cute little grin :)

We are moving forward and it just seems like it's time to reflect and continue healing.

The most important message for this post is to THANK YOU for all the support.

A collection of mementos to remember William, some gifted, some bought, all with love. A football toy, handmade burp blankets, personalized candle, angel ornaments, jewelry, rainbow art, handmade star, and many more beautiful gifts! 

Autumn angel I bought and wanted to share!

A special gift from Aunt Anne & Alex on display in our favorite part of the house, the kitchen.

Originally a baby shower decoration, I always thought I'd have this "twinkle twinkle" print on display in his nursery. For now it brings a little sparkle to my nightstand.  

There's actually more gifts stored away or in use around the house.  His most precious items have been carefully placed in his memory box and some in his special basket. We're looking forward to sharing these most special items with you when the time is right. 

Hugs,

Liz and Tom

William's corner in heaven

We've been meaning to share this poem for a while. It's been on our fridge since the week we came home from the hospital. We were at out lowest during that time. The poem came enclosed in a beautiful card from a family member, one of the first cards we received. We had no idea how many cards would follow...

This poem has helped us imagine a happy William up there with other babies... an angel band. And it reminds us of how far we've come since leaving the hospital without him.

The poem reads:

To Mother and Father

(on the death of a child)

There's a corner up in Heaven

Where the little babies play,

And our Blessed Mother watches

All throughout the livelong day.

They're a happy lot, these babies,

Sure the reason's very plain;

For they've missed the world's contagion;

Came unscathed, without its pain.

'Tis an angel band, they call them.

And you both shall blessed be:

You're the parents of an angel,

Cause your baby's there you see.

Yes, and smiling down upon you

With an innocence sublime;

Waiting, watching for the parents

They will meet in time.

May you never be rebellious.

Rather looking to that Day --

When your little guardian angel,

Will come and lead you on the Way --

With faith that falters not,

Clasp each other's hand,

Pledge yourselves to meet your baby

In that better, Happy Land.

William in Mommy's arms

Yesterday, I took a lot of time to just be with myself and feel William's spirit. I took a long bike ride, listened to music, and I colored. It felt really nice being able to have some William time and express emotions in a different way.

While I was coloring, I took special attention when working on William's body. With each stroke I thought of the day he was born and how he laid just like that in my arms. It was the best feeling in the world. When I colored his hair, I remembered how the winter sun poured in through the hospital window and lit up his golden blond locks. I just kept kissing his head. I drank him in. The way he scrunched his nose and how even his eye brows were blond. Small patches of peach fuzz dotted his entire body, like on both sides of his back right below his shoulders. Our little lion cub. He had perfect feet with tiny little toe nails. And his hands, they were also the cutest tiny hands we had ever seen, his creases matched mine. I remember kissing his eyes, his nose, his mouth. 

I used to think I may forget the way he looked to me. It really scared me. Yes, we had photos - that I'm hugely grateful for - but those were moments captured in time. I wanted to remember it all. The way he felt when I touched his skin, the warmth we shared, the way his baby scent made me drink him up, the weight of him, the way he melted our hearts. Now, I understand that I could never forget. These details are ingrained into my memory. 

So I'm sharing this beautiful image, a little tribute to me and my William, I'm happy that every time I think of him I smile. And I'm wishing everyone a nice day. 

xoxo, Liz

William in Mommy's Embrace

~ Thank you to Carly Marie for sketching this memory and sharing ~