Monday, June 27, 2016
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 :)
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 :)
Thursday, June 16, 2016
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
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
Tuesday, June 14, 2016
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
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
Thursday, June 9, 2016
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!
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!
Wednesday, June 8, 2016
Friday, June 3, 2016
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
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
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