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.
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 :)
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.
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!
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.
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.
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.
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.
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 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.
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 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 :)
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 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,
