At this time last year we had just arrived in Houston and we felt so afraid and out of sync. It was a huge transition for our family. All of the normal comings and goings ceased and our full focus was on saving Nora’s life. Liam didn’t get to play soccer last spring, Asher was pulled out of preschool and I quit my part time job to move to Houston. We even ended up pulling Liam out of kindergarten about three weeks early so he could move to Houston to be with Asher and me in May. We had recently moved into our house so we were still unpacking and putting things in their place. We had big plans to plant a garden and fix up our back yard in the spring and summer. Nothing was planted in our yard but by God’s grace and goodness, our little Nora continued to grow.
This year is so different. We have settled back into the glorious monotony of life with three kids and no pressing emergencies. Asher is loving his last year of preschool. Liam is thriving in the first grade and both boys will start soccer practice next week. Like many parents with young children, my house is a disaster, I’m exhausted all the time and I am still struggling to lose the last 15 pounds of baby weight and I’m loving all of it (yes, even the baby weight.) Nora is seven months old and so much fun.
She just started saying some words (although most of it is just babbling) this week. She has been saying, “Hey!” for a couple months but this week she started saying, “Hey Dada” “night-night” and (rarely) “Mama.” Nora is still breastfed and loves avocados, green beans, bananas, pears, peas, sweet potatoes…basically all fruits and vegetables, just like her brothers. She is growing well and doesn’t have any problems with anemia or antibodies. One thing that has concerned me is her gross motor skills (she’s great with the fine motor skills and social development.) She is meeting all of her gross motor skills late. She just now is finally able to sit up on her own but she isn’t even close to crawling. Her brothers did everything really early. When Asher was Nora’s age he was almost walking. At first I worried so much because of all the things Nora has been through…she was exposed to so many different drugs in the womb (all class C for pregnancy) like IVIG, Fioricet, Wellbutrin, Zofran, Phenobarbital, etc. She was sedated and paralyzed five times in the womb and had seven blood transfusions all together. She also battled anemia the whole time she was in the womb and her first few months of life. I was so anxious that maybe these things affected her development somehow but after consulting with our pediatrician and a physical therapist, I now am sure that it’s just because of her personality. Every doctor has said she is doing great developmentally. Liam and Asher were so incredibly active and curious and driven to explore when they were babies. Nora is content, laid back and relaxed all of the time and prefers to sit back and observe what’s going on around her.
One thing Nora HAS officially been diagnosed with is torticollis and plagiocephaly just like her brother Asher was at this age. These are big words and they kind of sound like scary medical conditions but they really aren’t that big of a deal and are pretty common in babies. Torticollis just means her neck is tighter on one side so she tends to turn her head one way, especially when she sleeps. Because she was lying on one side of her head so much, she has developed a flat spot (plagiocephally) on the back of her head. It’s not dangerous at all, purely cosmetic. Nora has been going to physical therapy for a couple of months to stretch out her neck and is now over the torticollis but her head still looks kind of weirdly shaped from the back.
We were given the option of leaving it alone to see if it would round out or trying a cranial band to correct the shape. At first we said we just couldn’t afford the cranial band and it would have to round out on it’s own like Asher’s had. Well, it just wasn’t fixing itself and we started to notice some facial asymmetry so we decided it was worth it to pay for the cranial band. She has had her “helmet” for a couple weeks and we have already seen a lot of improvement in the shape of her head. Hopefully she will be out of it by this summer.
The one thing Nora is a little ahead on is teething. A mouth full of teeth is not a fun experience for a breastfeeding mama, though. Her newest teeth are so hilarious and strange. Here’s a picture of the fangs (up top.)
Every time I get to learn something new about Nora, even the smallest thing like her new funny teeth, or when she is meeting her milestones or what her hair smells like, it feels like a hand wrapped gift from my Father. There are so many things I won’t ever know about Lucy until I get to heaven. I appreciate being able to learn all the details of who Nora is. I love looking up while doing laundry and seeing this…
Pink among all the brown and blue. Right here in the beautiful monotony and busyness of daily life I am surrounded by miracles and they all affirm in my heart, “Yes, He is good. Yes, He is faithful. He fulfills His promises. He makes a way in the desert. He heals the broken hearted. He restores and redeems.”
She’s such a doll!
Your sweet girl is probably thinking “Why bother crawling with I have two big brothers AND mommy and daddy to carry me around?!”. She’s absolutely beautiful.
Sending you wishes for continued joy, good health, and lots of love!
-Another Aug. ’15 Momma ❤
She’s so beautiful. Your story gives me a little hope.
Definitely cling to that hope. Also, come find me on facebook so you can join the ISO group of moms with antibodies (if you are the Rachel from Babycenter.) Many of them have lost babies and then gone on to have healthy rainbow babies
Hi my name is Lisa Reidie I live in New Zealand. I was sensitised to Kell when I gave birth to twin boys who were both Kell + but did not know that at the time. They are 9 now. Then got pregnant with a girl who was also Kell +, she was delivered successfully and is a happy 2 year old today, but not with out significant stress. I am now on a mission to develop or find someone to develop an IgG anti Kell injection (similar the rhesus one) so that my twin boys wives do not have to go through what I went to, and so that my girls boys wives do no shave to go through it either. Figure I have about 10 years to make this happen. Do you know anything about where I could start ? Your daughter looks divine Kind Regards Lisa Reidie.
Hi Lisa! As soon as I found out at least one of my sons was kell positive I felt the same need to find a way to develop an Anti-kell injection like rhogam. I felt guilty for passing down a “curse” to my children and all of the future generations. The good thing is, I don’t think they will need that injection by the time they have their own children. Dr. Moise, who treated me and saved Nora’s life in Houston, is currently working on a new drug to treat these types of pregnancies. The new drug will be given to the pregnant woman and it will prevent any maternal antibodies from reaching the baby. That means the anti-kell antibodies won’t harm the baby and there shouldn’t be any risk of anemia or need for IUTs. The drug is being tested on animals right now and will progress to human trials soon, hopefully. Dr. Moise has put a lot of hard work into this new treatment and seems to have a lot of faith in it. He said by the time he retires (which should be before our kids have kids) he is hoping that he won’t have to train any more doctors how to do IUTs because there won’t be a need for them. Isn’t that exciting?
Hi, wow that’s great news. The Professor in NZ who helped me with Charlotte said he didn’t think anyone in the world was working on it at the moment – so I am so pleased that someone is. That is very exciting news. My boys were born in America – it is so much more advance than little old New Zealand. If you hear any news let me know please.
I was wondering also if you think that having these antibodies in our bodies reeves up our immune system and leads to auto immune conditions ? Do you have any auto immune conditions ?
Appreciate your time in replying
Thankfully these antibodies don’t affect us at all and they aren’t connected with auto immune conditions or anything like that.
Great thanks .. I have sent you a friend re
quest. I stay connected on developments if you hear. Your kids are beautiful. You are an inspiration sharing your story. Lisa
I added you to the ISO moms group so you can stay up to date on any new developments
And thank you for the kind words 😊