Motherhood

Next Up: Cast Change

Sandy toes, the sound of the ocean waves, chasing wild bunnies and exploring Sea Island had us spoiled last week. It seems, by the day, Adeline gets more and more happy, and she was all smiles as we adventured to a new place. It is such a joy watching her grow up each day and to be able to experience life through the eyes of a child.

Now we are back to reality on this Monday and living in week 8 of the spica cast. Week 8 means we are ready for her next operation. On Wednesday, Adeline will have her “cast-change” procedure. As in the past, she will be put under anesthesia, which means no eating after midnight tomorrow, we will arrive to the hospital and they will take her back for about 1.5 hours to remove her current spica cast (thankfully…it needs to be thrown out!), insert die into her hip and check the stability and placement via an MRI (called an arthrogram). Likely from there they will bathe her (yay!) and place her into a new spica cast for an additional 8 weeks. If we receive a really positive report and the hip looks good, there is a slight chance she will graduate to the brace (called a rhino brace) instead of the cast, but we aren’t banking on that. I am holding on to a little hope, but do not want to be disappointed.

We are looking forward to this operation to be able to see the progress we have made up to this point. This is a big next step, and after this appointment we will have a better understanding of what is ahead in Adeline’s journey. She continues to amaze me, our brave little girl. She has been through so much up to this point, but we are thankful for a God who has this under control and is watching over her every step of the way.

We will share an update later this week!

Much love,
Anna

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Halfway!

As I sit here and write this post, I can’t possibly believe we are halfway through with Adeline’s first cast! How has it already been 4-weeks? Our happy girl is not letting the cast slow her down. We spend our days outside, on her tummy spinning in circles, sitting on the back porch in her spica table, and she is constantly smiling day and night. She is growing so fast too (how do I almost have a 10 month old?!). The cast on her left side use to go down to her ankle, and you can see how her leg has grown because her ankle is fully visible now. Time slow down!

We go in on May 8 for Adeline’s “cast change.” We were told it is very likely that she will be put into a second cast for an additional 8-weeks, but they won’t know until she is put under anesthesia and they can check her hip stability. I have to admit I was a little disappointed. I wanted to hear that the progress was so good up until this point that she would be cast-free and would graduate to the brace. But, I am thankful for her doctor and his conservative approach because after coming this far I certainly wouldn’t want to rush things.

In the meantime, Adeline has warmed up to her carseat so we can go for drives to get out and about, grocery shop and run errands, which has been wonderful. We have had lots of visitors, which we just love, and we are celebrating that this journey has been much better than we thought.

We are gearing up for the weekend and hoping for some nice weather to get outside. Hope you have fun plans too!

Love,
Anna

A 3-week Update

We’ve had a super positive week and tomorrow we will officially be 3 weeks into Adeline’s spica cast treatment. The time is moving along rather quickly, which as I have mentioned before is great for my countdown to Adeline’s healthy hips, but I am also trying to pause and enjoy these days as they happen because everyday is something new and she’s only this age once.

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This past Monday we met with Adeline’s surgeon and had a follow-up x-ray since having her open reduction surgery on March 15. The results were great! He was very pleased with the positioning of her hip and it is in place in the socket as it should be. Now we wait on the socket to form and bone growth to happen in order for her left hip to become stable. At this point there was no bone growth (which isn’t abnormal), but over the next few weeks we hope that will happen. Depending upon how that growth happens, and how quickly it happens, will guide our next steps of treatment.

We go back to Children’s Healthcare of Atlanta in mid-May for her next visit (at 8 weeks). At that time she will be put under anesthesia, the cast will be removed, and the doctor will perform an arthrogram on her hip. Dye is injected into the joint to provide an image of the tissues in the joint to see how her hip (the ball and socket) is developing. We were told that it is very likely she will be placed into another cast at that visit for an additional 8 weeks before being placed into a brace. At this point, the cast for 8 more weeks is what we are mentally preparing for. Of course I would love for her to be cast-free at the 8 week mark, but we have come this far I sure don’t want to rush it, and her doctor knows best. If things are looking good and the cast comes off at our next visit in May, I would rather just be pleasantly surprised.

In the meantime as we await her next visit, we are making the most of this time and enjoying all the walks, tummy time, and spica table fun possible. Also, being able to hold Adeline again this week has made this the happiest week, and she agrees. She has had a permanent smile on her face since Monday bringing me so much joy.

Her personality is contagious and lights up the room. I still can’t believe I get to be her mommy. I am so thankful God chose me. (Although I always imagined her calling me “mama”, she hasn’t figured out the “m” yet and thinks I am her “yaya”. Her new thing is yelling for “yaya” repeatedly over the monitor at night after we put her down for bed. It makes us laugh.).

Until next time!
Anna

What’s Next

The past several days since Adeline’s operation last Friday have been spent focusing in on what is important. We have taken these days to spend family time together and it has been wonderful. This time of year is special and helps me refocus on what is truly the most valuable thing in life. As I reflect upon this year, I realize how much we have been blessed with and it overwhelms me – for the experiences Greg and I have had to travel the world, for welcoming our precious Adeline in June, for the opportunity I have to get to stay home with her, good health and happiness, celebrating a year of marriage, and the list goes on. Today I am also thankful for Friday’s procedure. That may sound funny since it was not successful, and although we did not get the results that we were hoping for, we have so much to be grateful for including the wisdom of Adeline’s doctor and all the other orthopedic specialists who are helping children and adults battling Hip Dysplasia, for treatment options, and for the chance we have to plan a fundraising event in February to raise awareness. A lot of things we never expected have come out of this journey and we know God is at work.

I wanted to share a little more details from her procedure and where we go from here. On Friday Adeline’s surgeon attempted to manipulate her hip back into place without making an incision, in basic terms. For those who like medical terminology, he was attempting to put her femoral head back into the hip socket while she was relaxed under anesthesia in what is known as a closed reduction. Assuming there would be a better chance at movement with her asleep he would make a very small incision to insert dye that would help guide him as he monitored the placement on the screen and if needed, he could clip a tendon to give some more release and make it easier to place (I think I got that description right!). For Adeline, we learned she has a severe case of dysplasia on her left side and her doctor knew pretty immediately it was not budging and the closed reduction would not work for her. There is something blocking the hip from being able to go into the socket; it could be fat tissue or cartilage that has built up in there over time, we aren’t sure. Within about 20 minutes or less he came back to our room to deliver the news and within about 10 more minutes we heard a hungry baby being carried down the hall and Adeline was back in my arms ready to eat.

The next step in her treatment will take place when she is about 9 months old (in March) to give a chance for her bones to mature some more. That operation is called an open reduction. This surgery will be more involved, invasive and take a little longer and simply put, they will put her under anesthesia, make an incision, cut out the blockage and clean out her hip socket, place the femoral head where it is supposed to go and put her in a cast (called a Spica cast). She will be in a cast for about 8 weeks with a cast change after those 8 weeks and another cast for about 6-8 weeks. After the cast comes off she will graduate to a rhino brace for about 3 more months full time then begin weaning out of it.

We feel very content and positive about this outcome. Yes, we would have loved to be able to have her treated sooner and out of the cast, but we know for her case this is the best path forward and will ultimately help her long term. And who knows, once the open reduction happens, her left hip could progress faster than we expect and her be out of a cast in only 8 weeks. We have realized once again what we already knew before, life is full of surprises along the way, and this is out of our control, but we will do what we need to do to help our little girl.

We cannot thank you all enough for the thoughts, prayers, and support. We were overwhelmed by all of the encouraging words through your comments, calls and texts. Thank you, thank you, THANK YOU from the bottom of my heart for the love you have poured on us. We felt wrapped in prayers on Friday.

Wishing you each a very Happy Thanksgiving with lots of joy and love.

With sincere gratitude,
Anna

Adeline’s Upcoming Operation

I have been absent for a little while focusing all my energy and attention on Adeline and I finally have a chance to type what has been on my mind these last several weeks. As I sit here and write this, I watch my sweet baby Adeline fast asleep and a flood of emotions pours over me as I think about Friday. This Friday is our first attempt at correcting Adeline’s hips and we hope the operation proves to be successful. But I can’t help but feel like on Friday that my baby is going to change and that in some strange way I am losing a bond I have with her. If the operation goes as planned she will be in a body cast for at least 6-8 weeks followed by either a cast change at that time then a brace, or, if her hips are progressing well, she will go straight into a brace for another couple months. The cast will cover her legs down to her ankles and come up to her chest under her arms. I sure do hope it is successful, but never in a million years did I think I would be hoping my daughter would be rolled out of an operation room in a body cast. I want this to be over though and the sooner it happens the sooner we know it will be finished. The other part of me is going to long for those snuggles with her cast-free, and bath-time, her favorite time, and naps in the middle of the day with her sound asleep on my chest. I know this is all temporary, but for me, it is a lot to swallow and has just about consumed me since her diagnosis. I truly thank God this is a treatable condition and know I should be focusing on that, but it is hard to think about that in the midst of preparing for what is ahead these next 8 to 14 to 20 weeks. I know the days might feel slow, but eventually this will all be a blip on the radar and we will be celebrating her crawls and first steps in no time.

Greg and I cannot thank all of our friends and family enough for the prayers, kind words, thoughts, and support we have received. Sometimes it is times like this you really do realize all of the love that so many times seems to be absent in the world we are living in. We will be heading to Children’s Healthcare for her operation on Friday morning. If you can, please say a special prayer for Adeline, her doctor and the nurses. But we know she is in good hands because the One that holds her is bigger than all of this.

Will keep you all updated and thank you again for the love.

Anna, Greg & Adeline

Treating the Hip

We have a bedtime routine with Adeline. She eats her last feeding, gets a bath, we read her a book (this girl LOVES to read and cries when the book is over!), and then Adeline and I rock and say a bedtime prayer. We pray thanking God for all of our blessings, for the friends and family we have surrounding us and loving on us, and we pray a special prayer each night together for her hip; for complete healing, for it to be healed with or without surgery, for no pain and for a quick recovery. (I am not going to lie and say we don’t ask for a miracle healing in Jesus name in our prayers, too, and especially as we got closer to the date of her next appointment.)

We had her follow up orthopedic appointment in late September (September 24, Adeline’s 3-month birthday) to see the status of her hips, specifically the left side. Per her orthopedic doctor’s orders, we had given it 2-months to “wait and see” if the left hip would work it’s way back into the socket so that he could either put her back in the harness or put her in a hard brace (and know that it was holding it in the right position).

Leading up to what we knew would be one of the most important doctor’s visits we would have, my prayers got longer, stronger, more emotional. I knew at this visit if she had not showed signs of improvement on her left side we would have to face the reality of surgery. Every morning I would look obsessively at Adeline’s hips when changing her diaper: compare her leg rolls to see if they were even, if her legs were the same length, and if her knees were the same height when bent (all things the doctors check for in infants with hip dysplasia). I wanted so bad to not be able to feel her hip bone out of the socket. I wanted so bad for her to be okay and for this all to be over.

We went in for our visit on that Monday. We were so excited to see her doctor – he has the most calming presence about him, and Adeline just smiles when she sees him which makes her mommy so happy – but it didn’t take a long time for him to recognize the left hip was still dislocated and it wasn’t popping back in. Luckily, Adeline kept her smile on the entire visit, didn’t cry once (I think she liked all of the attention). I loved seeing how strong my little girl was laying on the doctor’s table. It gave me the strength I didn’t have on my own, especially when her doctor confirmed our worst fears and the “s” word came out of his mouth.

We were facing the decision at this point of not “if” but “when”. Adeline would need an operation under general anesthesia as a next step in her treatment process. Because it requires anesthesia, her doctor recommended trying a procedure called a closed reduction at/around 4 months. This is a less invasive surgery basically manipulating the hip back into the socket without an incision, but clipping a tendon if necessary to loosen. Unfortunately, with this operation it is not a guarantee it will correct the issue, and hard to know if it will work until she is under anesthesia. If he is not able to manipulate her hip with this operation, a more invasive procedure will take place when she is a little older (8 or 9 months), called an open reduction.

This was a lot of information to process. Thinking about my child facing surgery at any age is tough, but especially at 4 months; it is emotional, to put it lightly. But we had a decision to make – to try the closed or wait until she is older for the open procedure. There are a number of benefits to correct her hip at a younger age, “sooner the better,” as our doctor put it. If it is successful, Adeline’s developmental milestones won’t be as delayed, babies’ bodies are still growing and developing and that can be a good thing in the healing process, etc. etc.

After reflecting on our conversation with Adeline’s doctor during our visit and exchanging several emails with him too, praying for guidance and direction on how to move forward, we decided to schedule a closed reduction.

Adeline is scheduled for her surgery on November 16. As I (and my husband) prepare mentally, emotionally and physically for this day, I ask you to join us in praying a special prayer for protection over her, for wisdom for her doctor and guidance of his hands, and for complete healing for Adeline. We are still going to continue praying without ceasing for a miracle because we have full faith that God is capable of anything, but we know and are at peace with the fact that He has a plan, and if November 16 comes, and the surgery happens, He has it under control and His promises never fail us.

The Harness

Adeline had an appointment with her pediatric orthopedic surgeon the week after she was born. At 9 days old Adeline was put into a Pavlik Harness. Seeing her be placed in that harness broke my heart. I cried uncontrollably. I prepared weeks and months for my baby’s arrival, but nothing prepared me for this journey. During my pregnancy I dreamed about holding my baby but never in my wildest dreams pictured her with a harness. She was so tiny with Velcro wrapped all around her. It tore me up inside. Hip Dysplasia is usually genetic, but this was not something that Greg nor I had as an infant. Hip Dysplasia does, however, carry other risk factors. And Adeline met all three other high-risk factors – firstborn, female and breech.

Adeline was required to wear the harness 24 hours a day, 7 days a week. We figured out our new “normal.” We learned to change diapers, feed, bathe, and dress her with the harness on all with the expectation she would be in it for about 12 weeks and would be free, healed and in the clear.

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In mid-July, after about two weeks in the harness, we went in for our first ultrasound at Scottish Rite so that our doctor could get a better understanding of what was happening. What we found out was not the news we were hoping for. Our doctor called us that afternoon to confirm our worst fears…Adeline had mild dysplasia of her right hip (it was partially dislocated) and severe dysplasia of her left hip. Her left hip was completely dislocated. We were devastated to receive this report, but still hopeful the harness would improve the angle of both hips and deepen the socket over the course of the next several weeks.

A week passed by and in late July we had a follow up visit to assess her condition. 4 weeks had gone by in the harness at this point. As the doctor did his thorough assessment of her hip angles and movement, he determined the hips were not showing the improvement they should with the harness. It was actually causing more harm than good to her left hip. He had us remove the harness for the time being and schedule a follow-up visit for two weeks out. The idea was to allow Adeline to regain the movement in her legs to loosen up the hips so that they could be manipulated back in. Something was in the way of the left hip from moving into the socket, and the more she could kick her legs, the better the chance of her movement shaving down the blockage (whether it was fat tissue or cartilage) and popping back in.

We went back to the doctor in early August to check up on the progress of her hips without the harness. The right hip showed great improvement, but the left was still dislocated. With our doctor’s recommendation, we decided the best path forward was to “wait and see” and leave the harness off for another short while in hopes it may correct itself. We were to return in September to follow-up with our doctor on the status.

The waiting game was hard, but we learned to be thankful for the harness-free snuggles, enjoy bath-times even more, pray harder, love deeper and trust that the Lord had Adeline in the palm of His hands, He would take care of her and be with her and Greg and I every step of the way.