2nd Ultrasound Results 10/29/2012

Today we visited Norah's Orthopedic for another Hip Ultrasound. She was a champ! I had some moments here and there where I would let my mind wander, but for the most part all three of us handled it pretty well.

Here is what we have learned today:

1.) She now has a normal hip according to the ultrasound. The brace did exactly what it was designed to do. The ultrasound showed the femoral head located in the hip socket which is normal and her hip development was better as well. Technically the normal amount of time to wear a brace is 8 weeks, so our Orlando Orthopedic suggested another week as a precaution. What we have also learned in speaking with the Paley Institute is there is a process called Ossification in which the cartilage turns into bone, which has not yet happened. Therefore, we will not truly know what the bone has done until atleast 6-9months of age. At that point, an x-ray will most likely be the most accurate way to show if her hip is indeed "normal" and strong enough to go through leg lengthening. In a nutshell, her cartilage appears normal, the bone however we do not know yet. So the necessity for hip and knee surgery prior to leg lengthening is undetermined.

2.) We discussed her other issues with Dr.Knapp as well regarding her leg. We've come to learn that typically the issues run all the way down the leg beginning at the hip. So in her case, it began with her hip, down to her femur which we know is shorter, down to the tibia which also appears shorter, onto the foot which is slightly smaller and then down to the toes which she has two fused together. I hadn't really tied them all together until today, but now it makes sense.

The leg length difference without her brace as of November

3. Her leg is not as serious a case as it could be. (As far as we know right now) Because she has a femoral head and her knee is in place, it is most likely correctable with leg lengthening. (We knew this) However, what we didn't know, is that it is minimal. In doc's words, "This would be a 6 inch put for Dr.Paley."  Some cases are very complex, Norah's at the moment is not. (Mommy is holding tight onto those statements)

4.) Dr.Paley is a pioneer according to Dr.Knapp. If there is a case that 90% of surgeons would turn away, he is the one that would say "No, I can fix this."  Our doctor feels confident that they can take on Norah's case, however encouraged us to still meet with Dr.Paley in West Palm Beach which we still plan on doing. He reassured us that either location could help Norah and was very supportive of our desire to meet with Dr. Paley.

5.) Shoe Lifts: We learned that some kids prefer them and others prefer to simply walk on their toes. It is all a matter of preference. It is not in the near future for Norah so we won't worry about it. As far as her beginning to walk, the difference will most likely be minimal and the need for shoe lifts if she prefers them will come in the first couple years. For whatever reason, shoes are a really sore subject for me. Maybe it's because little girls love shoes? Or the fact that when I was little I LOVED heels and loved walking up and down stairs to hear the sounds of my shoes clicking. Right now, socks are about all I can handle. It seems to really strike a nerve with me when I look at little shoes.

6.) Norah loves sugar water. :) When she was crying during her ultrasound, the tech (who by the way needed an attitude adjustment) she handed me sugar water to dip her pacifier in to calm her down. It was funny, because I thought, "Um, no she's fine without it, I am not giving my 7 week old baby sugar." Within seconds of hearing that scream, Norah was sucking on sugar water! Later in conversation, my husband explained the importance of having a GREAT experience when you visit the doctor. When you pay out of pocket like we do until the deductible is met, we want  A GREAT EXPERIENCE. When you pay a $50 copay like some, you don't really seem to care as much. Such an eye opener! After spending hundreds on this ultrasound, I really would have liked a technician with a bit more sensitivity and a decent bedside manner.

7.) No big surprise, but we continue to learn that she is the cutest kid I have ever seen in my life and a stinking papercut would break my heart. After walking the halls at the hospital and passing children in wheelchairs and some in casts or braces, I came to realize our life with her and that someday soon that would be us. We would eventually know the doctors and staff by name and where the nearest bathrooms were. I kept dwelling on the fact that this was not my plan for her and that I couldn't protect her from it. I didn't want to have to bring her back there. Kids aren't supposed to be in hospitals. They are supposed to have a couple broken bones from the playground and move on. I wonder what people are thinking of me. What did she do while she was pregnant? What did she eat? Is it in their family history? Silly, I know, but true. Yesterday was a breath of fresh air along with another reminder of what we face. On a more positive note though, atleast they break you in gently...an ultrasound compared to the later procedures is a cake walk. So we have time to prepare...

1st Orthopedic Visit

Norah in her "taco brace"

Pretty sure I prefer what she's in compared to the rest of these!

Taking Norah to the Orthopedic on a rainy morning within 2 weeks of birth was a ride! Both of us nervous on the way there while she slept quietly in her carseat. She has been in her "taco brace" as they call it since we left the hospital and it has been an enormous challenge with day to day things. A piece of advice to anyone breastfeeding a child with this condition....get help fast. Do not wait. I spent two weeks of her life battling with her trying to figure out how to feed her. Basic positions didn't work well, my husband had to stay home with me because it was so exhausting and emotional, I just couldnt go it alone. When anyone would ask, "Why is it so hard?", I found myself busting at the seams thinking, "Seriously?, you have to ask?" People have well-meaning intentions, I just couldn't handle anything at that point. With that said, I had to nurse her in the doctor's office that day. Fun. So this appointment began the 8 week trial of the brace. We would find out later if she had to wear it longer. The purpose of the taco brace is to keep her hips open and in better alignment while the socket and ligaments become more stable. It is supposed to encourage development of the hip joint. A superior hip is very necessary for her future leg lengthening procedures. The doctor did state that he thought her hip damage was minimal and that the prognosis looked pretty good. Some children then go to wearing it part time for another 4-6 weeks after the initial time, but we are hoping this step will be eliminated if possible.

The Beginning...

At the hospital with our angel

This is the start of my acceptance. This begins my journey as a first time mother who was blessed with the most precious gift, a daughter born on September 10, 2012. Her name is Norah. I didn't really think about it through the haze when I laid there and heard the nurse say to my husband, "hmm, I've never seen that before. One leg is shorter than the other. She also has a couple fused toes." All I cared about was that she was breathing after I heard them announce the weight at 5 pounds and 13 ounces.  I spent almost 14 weeks on bed rest after my doctor told us we were at risk for preterm labor due to a shortened cervix. Nowhere during that time did we ever think about what we would face later. Surprisingly, I made it to 39 weeks.  The first day was kind of a blur. When the doctors came into our room to explain her condition, we were both in such a fog. They took her away several times for x-rays and ultrasounds. The Orthopedic doctor came in on the second day to explain what we were facing. Fortunately, he was cautious with his words. I think in his mind he saw two very new, terrified parents and figured he'd keep things vague. Thank you for that. By the third day, he diagnosed her with Hip Dysplasia and introduced us to the hip brace. We really weren't diving into the leg condition at this point. I can't explain the hurt of that day. Getting ready to leave to take her home and hours before, they are showing us how to navigate our way through this brace, all the while she is screaming such an agonizing scream. This wasn't the way I dreamt of bringing home my little girl. I quickly felt the pain and annoyance of that brace. I couldnt nurse her the same way, skin to skin was out the window, she wouldn't be wearing any of the adorable clothes friends and family generously gave to us, every diaper change, every cuddle, I would have to stare at this thing and be reminded of what was happening. I was sad and that sadness changed quickly into anger. Nobody was ever going to be able to understand the pain I felt, and honestly they still don't. I felt responsible, incapable, guilty and fearful about the road ahead. Still do almost 5 weeks later. Because of this guilt and my husband urging me to try to start accepting this, I sought out an outlet. This is it. Writing. Crying. Reading other blogs and other stories of families who have gone through this or are about to has helped. So here we go. This is the journey of my baby Norah's physical challenge with her leg and hip. Maybe this will help this hermit crab Mom attempt to come out of her shell and maybe it will help another family down the road.

2nd Ultrasound for Hip is 10/29/2012

Norah's 2nd ultrasound is approaching....tomorrow. As it nears I get more nervous. This ultrasound will assess the progress of her hip while wearing the hip brace since birth. Since she had minimal damage to her hip and the Orthopedic felt confident that it was not severe, it's very possible that they may take the brace off. Poor little thing has had her legs and hips open 24/7 since birth. Imagine sitting frog-legged for 7 weeks. For a little while, I almost forgot about her condition (somewhat) but as Monday nears I find myself struggling with the tiniest things. My adorable niece had the cutest little silver, sparkly MaryJanes on yesterday and I couldn't help but feel envy and sadness about it. I dread the time when Norah sees a pair of shoes that she won't be able to wear. Of course I plan on buying her THEE most amazing pair of shoes when we do our first shoe lift, but it still isn't the same. Somehow bicycling came up in conversation yesterday with my husband and he said, " You know, I don't how she will be able to ride a bike." All these little things that don't seem to cross your mind right away....well now they do. All I want to do right now is have a pity party and all I can say is if you are a parent going through the same thing with your child reading our blog, let yourself do it. The best thing I have found to help me cope is to release it. Some days I release it in a positive way and I am hopeful and other days I release it with tears and fear. Either way, let it out. I am learning it just isn't possible to be "okay" with it. It's your child. I do believe there will come a time when I am accepting of it, but I don't think I will ever be okay, happy, or over it. For now I am just thankful that Mommy doesn't have to be so strong for her because she doesn't know the difference. Eventually she will realize what she has and at that point I know I will have to be strong for her. Until then....