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!
