2 Months Old

Our Nora Juliet is two months old today! Every day I get with her feels surreal. I still can’t believe she is here, in the flesh, healing our hearts and reminding us every day of God’s love and redemption.

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  Her first pair of real shoes

Nora smiles all the time and has almost doubled her birth weight.
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Her blood counts have remained good since her second post birth transfusion a couple of weeks ago, so no anemia for now. We found out about a month ago that Nora has a dairy allergy which was causing her a lot of gas and belly pain. She also had a rash on her face, blood in her diapers and she stopped gaining weight. I cut out all dairy from my diet and now she is doing great! Everything has cleared up and she is such a happy girl. I thought cutting all milk, cheese, butter and bread out of my diet would help me lose some baby weight but so far I haven’t lost a pound. How is that possible? Oh well, these extra few pounds are a sweet reminder of the fact that I was able to get pregnant and carry my baby to term- such a miracle.

Over these past couple of months my mind has often drifted to the people who played a part in getting Nora here. I have wanted to write this post ever since Nora was born, but honestly, I have been overwhelmed by the task. There are so many people who helped us along the way on this long, stressful journey of ours to get Nora here safely. The fact that Nora is ALIVE is nothing short of a miracle. Obviously, God is the only one who can perform a miracle, and we are so thankful that He did for our baby girl. We know, though, that He did not act alone. From the beginning it was clear that God was inviting many other people to help Him perform this miracle, to be a part of something incredible. I just can’t seem to find the right words to express how grateful we are for all of you, and because of this I have postponed this blog post longer than I should have. I don’t think any amount of time would help me find the right words, so I will just do my best.

There is one man that God used the most and without him Nora would not have survived. Dr. Ken Moise is responsible for the life saving treatment she received. Because of him she was able to have the plasmapheresis and IVIG that protected her from my antibodies when she was most vulnerable (10 weeks- 24 weeks gestation.) Dr. Moise knew exactly when Nora needed blood transfusions and performed FIVE intrauterine blood transfusions (with the help of several other doctors) on Nora. It was his idea to have me take phenobarbital at the end of my pregnancy to prepare Nora’s liver for after she was born. The phenobarbital is one of the reasons why she spent less than 24 hours in the NICU and did so well after birth. Dr. Moise was always patient with my anxieties and doubts during my pregnancy and he answered all of my (many) questions without complaint.

After Lucy died I emailed Dr. Moise with questions about my antibodies, about what happened to Lucy and the possibility of future pregnancies. Even though I wasn’t his patient and he had no idea who I was, Dr. Moise emailed me back and even called me after Lucy died to discuss all of my questions. He is the most caring, generous, humble and knowledgable doctor I have ever met. Thank you, Dr. Moise, for giving us our Nora.

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There is another doctor who played a major role in Nora being here. After we lost Lucy, every doctor we talked to told us that any other kell positive babies conceived in the future would die in my womb. There was only one man who gave us hope for the future, Dr. John Owen at UAB hospital in Birmingham, AL. After getting Lucy’s autopsy results and my placenta analysis results back a month after Lucy died, he called me and told me not to give up hope. He thought that if we got pregnant with a kell positive baby, she might have a chance at survival. Dr. Owen was the only doctor to ever tell us that we could have a live kell positive baby. He gave us the courage to try again and the hope that kept us going. Without that phone call, I doubt we ever would have tried again naturally, and our Nora would not be here. Dr. Owen also was the maternal fetal medicine specialist who treated Nora and me for the first 17 weeks of my pregnancy here in Alabama. He went out of his comfort zone to try a new, “experimental” treatment (Dr. Moise’s plasmapheresis and IVIG protocol) even though he wasn’t sure if it would work. He also worked very hard to get our insurance to cover all of these expensive treatments.Thank you, Dr. Owen, for giving us hope to try again and for giving Nora a good start.

There were so many other doctors, specialists and nurses who treated me during my pregnancy and Nora afterwards that played a part in saving her life. It was definitely a huge team effort that spanned several different hospitals and states. I am still in awe when I think back to the very beginning of my pregnancy and remember the countless acts of kindness these medical professionals showed me…the nurse who held my hand when I was having my port put in and told me to think about my baby girl, that’s who I was doing it for (before we even knew it was a girl) and the home care nurse, Cristie, who took care of Asher, bought us meals and cleaned my house while she was giving me IVIG treatments, the doctors and nurses in the plasmapheresis clinic who told me they would be praying fervently for my baby, all of the staff at The Fetal Center in Houston, who treated me with so much kindness and empathy and patience, Dr. Adler, Dr. Chwe…I could go on and on. There are too many to name, but I am thankful for all of them.

The Ronald McDonald House in Houston played a major role in getting Nora here, I don’t think we could have done it without them. I moved to Houston on March 3rd and came home on July 23rd and there’s no way we could have afforded a hotel for that amount of time. The RMH truly was our home away from home. The staff was so kind and accommodating. The volunteers were amazing, bringing meals almost every day and creating fun activities for the families. These past few months could have been some of the worst we’ve ever had since our family was often split up and our baby’s life was at risk and I was constantly having appointments and treatments, but because of the RMH it was probably our favorite summer ever. The boys talk about the Ronald McDonald House with nostalgia and they miss the friends they made there. Josh and I miss it too and we will never forget how they cared for our family during a very intense, stressful time.

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Our first night at the Ronald McDonald House. Asher was exhausted and crying when we arrived and they gave him a little pack of cars to soothe him. It put him at ease and he cheered right up. Now he asks me on a regular basis when he will get to go back to the RMH.

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Our “backyard” while we were at the RMH. The boys loved it.

I also have to thank my amazing mother, who came with me to Houston and lived there with me and Asher most of the time, even though she has a job and a very busy life of her own. I will never forget the sacrifices she made for our little Nora. My sister, my Dad and my best friend, Shelly, all helped take care of Liam while he was in Tuscaloosa without me. There are so many people I want to thank, too many to name here on my blog. If I tried, it would take me weeks to write it all out (and let’s be realistic, Nora doesn’t even give me time to shower these days.) Anyway, to all of the people who played a part in our miracle and who made sacrifices for our family, who prayed for us and encouraged us with your words, who donated money, bought t-shirts or sent sweet gifts, who offered to help and showed us hospitality, thank you, from the bottom of our hearts. I am in awe of the goodness and love we’ve been shown. And wasn’t she worth it all?

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Second Post Birth Transfusion

So, last week Nora was on the verge of needing a blood transfusion and the doctor wanted to wait eight days before checking her again.  We ended up calling the hematologist and telling him our concerns about waiting so long. He wasn’t defensive or condescending like some doctors in the past have been when questioned. He answered our questions and when he didn’t know the answer he simply told us he wasn’t sure. We appreciated his honesty and humility so much. He took our concerns seriously and told us we could bring her in any time for a blood check if we felt nervous. This put us more at ease.

The doctor ended up being right, Nora was ok waiting the eight days until her next check up. On Wednesday I took her in for her weekly blood work. Her hemoglobin was eight and her hematocrit was 23, both transfusion level. Her retic was up over two, which was great since she hasn’t had much of a retic at all. The retic shows whether she is making her own red blood cells or not. Since it went up from 0.11 to over two we know that her body is starting to to make blood again. Unfortunately, her bilirubin went up too, which shows us that there is red blood cell destruction happening. Apparently, my antibodies are still circulating in Nora’s blood and killing any kell positive blood that she makes, which is why she needed another transfusion. The doctor decided to just do the transfusion that day so it was a LONG day, but we were relieved that Nora was getting the blood that she needed.

The nurse had to put the IV in her head again since her veins are so tiny and difficult to access. She was such a brave girl and didn’t fuss much at all. Besides when she got her IV, she was a very cheerful baby and all the nurses wanted to hold her and cuddle her. Here she is right after they put her IV in.

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The transfusion went well and Nora seemed perky and pink afterwards. She will continue to be checked weekly by the hematologist. My goal is to have her completely over the antibodies by Christmas. Right now that seems like a long way away but in the grand scheme of things it’s not long at all…a very small price to pay in order to have our baby girl here with us. This past week was exhausting. All of the school year activities have started back and I feel like we are constantly on the go. We took Nora to church for the first time last Sunday and she did great! She was quite overstimulated by the loud music and flashing lights and people all around, but it was so fun to have her there with us.

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Here are a couple more cute pictures from this week. Thank you for all of your prayers and continued support. I’ll try my best to keep you updated!

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Asher collected some toys and stuffed animals and told me he wanted to have “play time” with Nora in her crib.

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“Say owl, baby Nowa, say owl!”