One Week Down...

Okie dokie ladies and gents...sorry it's been so long since my last post about Natalie. It was much easier to post while Natalie was in the hospital!

After a long couple of days for Natalie in the hospital on Wednesday and Thursday, she really started to do much better, and by Friday morning, we were confident enough to take her home. At the time, she was not eating much...or I should say, she wasn't eating at all. I guess it really didn't surprise me because she wasn't a big eater before the surgery, and with all of the pain and drugs, I wouldn't feel like eating, either!

When we got home on Friday night, we tucked her into her little hospital bed in the living room. It's the perfect size for her and it fits just right by the picture window so she can feel the sunlight while she recovers.

Under the covers, you can see that she has quite the cast---it's called a spica cast that goes from her ribs to her ankles, with an opening for a diaper and a bar to keep her legs apart. That bar also comes in handy for picking her up and holding her.

I know it looks uncomfortable, but Natalie seems to be handling it really well for the most part. She actually really loves sleeping on her side, so this position is very good for her---she usually sleeps the best when I get her positioned this way. I've learned the fine art of pillow sculpture to help keep Natalie comfortable.

One of the most difficult things is keeping her moving around. We can't let her sit in one position for too long so she doesn't get sores underneath the cast, so I move her from front to back and side to side every couple of hours. Of course, she moves around more than that because I hold her quite a bit or put her in her modified wheelchair, but this also means that she needs to be repositioned at night. Needless to say, I feel like I have a newborn, because I'm waking up four to five times a night to make sure she is repositioned! She enjoys tummy time quite a bit, which is strange, because she has never liked it before.

Pain management and feedings are the most difficult aspects of this whole rehab...at least it is for me. Nat is on hydrocodone, which helps with the pain, but also makes her sleepy. It's my goal to make sure she has as little pain as possible during this recovery, but she has been so reluctant to eat as well. Keeping her sleepy means she isn't interested in food, but she needs that food to stay healthy! She's slowly requiring less and less pain medication and her appetite is reappearing, so I will continue to pray that her little tummy can handle all of this.

So, it's one week down and three or four to go. We won't know until Dr. Haasbeek tells us---and our first appointment with him is September 8th. Hopefully she heals well before then and he can give us good news about when her cast could possibly come off. Thank you for your patience and your prayers!

Melissa

Natalie's Long Night

This morning; Natalie's eyes are open, but she's very groggy!

It was a long night last night for our little peanut, Natalie. It's a tricky situation trying to control her pain without putting too much medicine into her system and causing her to have breathing problems. Last night, she received morphine nearly every hour on the hour, along with a dose of Valium to relax her muscles. At about 2 a.m., we got a little concerned that she was just getting too much morphine and that there had to be another option--so the pediatrician on call was alerted to the situation. It was about then that Natalie started to calm down and she went to sleep. Luckily, she didn't require the morphine for another three hours, so we're hoping that's the corner she needed to turn to have a more relaxing Thursday.

Right now, she's resting peacefully in her hospital bed. The plan is to stay another night, until we really feel she's comfortable with the medication and has a little less pain. She hasn't eaten anything since Tuesday night, so I'd really like to get some food in her tummy today.

It's Daddy's birthday today, he's 30 YEARS OLD! Hopefully Natalie feels much better today, I think that would make him happiest of all.

Please continue your prayers for Natalie as she is really struggling through her recovery.

Thank you! Melissa

Prayers for Natalie

Natalie really needs your prayers right now! Please send your prayers for Natalie's pain to lessen. She has been given a steady dose of morphine for the past few hours, but eventually it wears off, and we need the pain to go away. Too much of this medicine can cause her to have breathing problems, so we can't over-do it.

The afternoon has been long. She came back from the PACU very tired and groggy, and eventually started fighting the cast. Of course, the tightening of those leg muscles is causing her pain, so she's basically either sleeping or angry right now. I would give anything to take this pain away, but I can't---so I will continue my prayers! Thank you for YOUR prayers!

Natalie did get a big surprise this afternoon, as Grandpa Jim made the drive over to visit with Natalie for a few hours. Thanks, Grandpa!
Grandma & Papa Miller and Grandma Lori also visited for a while this afternoon, but it's been touch and go for a while, so it was a very sad visit for them.

More later...

Surgery is Over!

(Natalie, pre-surgery)

We just heard from the nurse--Natalie made it through surgery with flying colors. What a relief! They are putting on her cast as I type this, then she will spend a short amount of time in the recovery unit before heading up to her room to be with us.

Thank you for your prayers, please continue those prayers as she recovers and is at high risk for contracting pneumonia. We are also not sure yet whether she will need a blood transfusion. Everything looks good so far, though!

I mentioned this on facebook, but I'll also note it here: her nurse during surgery is named Cheryl, the same name as Natalie's big sister in Heaven. Cheryl is her guardian angel today. :)

If you have any special words you'd like to share with Natalie, post it in the comments section here and I will read them to her today. Thank you for all of the love you have shown for our Sweet Natalie B!

Here We Go!

Natalie this morning before surgery; this is a teddy bear she received from the hospital

Natalie was just wheeled into the operating room about 30 minutes ago; we are hoping to get a call soon that surgery has begun. After that, we won't hear anything for a couple of hours.

Nat had a great morning, she was happy and alert and had lots of smiles for us. She then fell asleep as soon as she was laid on the bed to be transported. We were so happy that she was so relaxed!

We had a long conversation with the doctor, the nurses, the anesthesiologists...everyone involved in the surgery. They were all so wonderful and caring, that our minds were put at ease--at least for a little while. The nurse taking care of Natalie has worked with Dr. Haasbeek for years and she said she's happy she could be in the room since they make a great team. One nurse commented, "He's the best," referring to Dr. Haasbeek. Isn't that nice to hear? Natalie deserves only the best.

I'll update more later. Prayers for Natalie!!!

Packing Our Bags...Again

Pack, unpack, repeat. This seems to be the recurring theme for our family these days. Tonight, I'm packing our bags for a trip to Grand Forks. This trip won't be as fun-filled as the last, but it's one we can't avoid. Natalie has surgery on her hips Wednesday morning in an effort to create better joints for her and hopefully reduce any pain she is having and stop her from having any future pain. Take a look at the previous blog post if you need more information about what will happen on Wednesday.

Right now, Natalie needs your prayers. Tonight I will pray for safe travels, a comfortable car ride for Natalie, safe surgery, Natalie's doctors and nurses, and comfort in the weeks following the surgery. As always, I put my trust in the Lord--He will get us through this no matter what happens.

I promise to keep you updated throughout the week. A new feature on this Web site is email subscription to blog updates. Sign up if you'd like to keep up-to-date on what's happening and be notified by email.

Thank you all for your prayers for Sweet Natalie B!

Hip Surgery

Today was a very long day for Natalie, her mommy and her daddy. As many of you already know, Natalie will soon have surgery on her little hips; here are the details.

A couple of weeks ago, at a horse therapy session, Natalie's physical therapist noticed a popping in her right hip. She mentioned how she hoped it wasn't causing her any discomfort, but she was really happy that day, so we thought nothing more of it.

Then, all last week, I noticed Natalie was become more irritated during the day than normal, and she was having trouble falling asleep at night. My first thought always turns to seizure activity when Natalie's attitude changes. Then I realized that she would have trouble falling asleep, but once she got to sleep, she would sleep all night. In the past, seizure activity has caused restless nights for Natalie. That's when I remembered what her physical therapist had said about Natalie's hip popping. I turned Natalie over on her other side to sleep that night and she fell asleep so quickly, I immediately felt guilty for causing her pain up until that night.

The next day, we took her to her pediatrician in Minot, and x-rays confirmed the dislocated hip. I may have explained this in her last post, so I apologize if I'm a bit redundant, but because Natalie doesn't walk, she doesn't get the weight-bearing on her hip that the rest of us do. The socket for her right hip is virtually non-existent, and because of that, her hip bone has slipped out of the socket area and up. It's likely been like this for quite some time, but recently became irritated for reasons unknown to us.

So, today Natalie, Perry and I drove to Grand Forks to meet the only pediatric orthopedic surgeon in North Dakota, Dr. Jeffrey Haasbeek. Within moments of examining her, he knew she would need surgery to fix her hip. I have to say it was quite a shock, and I started crying immediately. Natalie has never had a true surgery, and I was living in this fairy tale world where I assumed she would never need surgery in her lifetime.

At first, I followed along and agreed that it was the best route, but then of course we began questioning the need for something like this on a girl who has already been through so much in her nearly five years in this world. The doctor assured us that if it were his daughter, he would have it done for her. It would likely cause her pain in the near future, if it isn't already, and later on in life, it's not as easy of a problem to fix.

The procedure is called a femoral osteotomy, and she will have this done to both hips since her left hip is also at a greater risk of dislocation. Natalie has been doing well since last week; she hasn't been upset or irritated. Dr. Haasbeek agreed that allowing her to go on vacation at the lake and then doing the procedure after was a great idea. She will be uncomfortable for a week or so after the procedure, but will also be in a cast from her waist down for four to five weeks in order to create the pressure from the femur into the hip socket.

The surgery is set for August 24th in Grand Forks. I ask you to please pray for her as this is a 2-hour surgery and carries risks with it, especially since she is handicapped and more susceptible to pneumonia.

I started this blog post last night, but was interrupted by Natalie--she wanted to snuggle. I've done lots of thinking about this, and I'm sure I will do much more until surgery day. Being Natalie's mommy is many things: joyful, frustrating, rewarding, challenging. Going through something like this is frustrating. We've seen Natalie nearly die---she had a horrible NICU journey. She's battled seizures and blindness. Watching a beautiful little girl like this have to take on such incredible challenges is certainly the hardest thing we'll ever have to do as parents. I wish I could take it all away, and I ask God all of the time why she has to endure this. I pray for her constantly and hope that she is truly a happy girl despite all of the hardships she faces. Seeing her smile is always reassuring for us.

So, again, I ask for your prayers for Natalie. Of course, we will keep you updated on everything going on in her life and will bring a computer along with us to the hospital. Thank you for loving Natalie.

Dream Catchers / My Poor Baby!

Tonight was Natalie's last night of Dream Catchers. It was her first year playing on the team, and she had a grand ol' time. She was so cute out there, wheeling around the bases with her head tilted back, smiling. It's such a great thing Michelle has put together for kids with disabilities--we can't thank her enough. Here she is accepting her award. I'm so proud of her!
Natalie was really happy tonight...lots of smiles and eyes wide open.

Rounding third and heading for home!

We have some sad news to report, I'm afraid. Natalie has been acting strange the past week or so. She isn't as happy throughout the day as she normally is, and has trouble getting to sleep at night. I always worry that this is due to an increase in seizure activity. However, at last week's physical therapy session, her physical therapist mentioned something about Natalie's hip popping a bit and she hoped it wasn't causing her any discomfort.

So, last night, I tried turning Nat on her other side before going to bed. That did the trick; she relaxed and went right to sleep. So, today we got her in to see her pediatrician, who ordered an x-ray. It showed what we had suspected...she has a dislocated right hip. It's a little hard to explain, but since Natalie doesn't walk, she doesn't put pressure on those hip joints. That pressure creates the cup-shaped socket for the end of her femur to fit in; but in this situation, that socket is basically flat. Her femur is pushed out a bit and that is what is causing her such discomfort.

We are waiting to hear back from a doctor in Grand Forks who will be caring for Natalie. We're not sure what he will recommend at this point, so I'm not going to speculate. I hope that it's an easy fix and we can manage the pain with ibuprofen until it is "fixed." Our poor little girl is such a little trooper---I feel horrible that I didn't figure this out before last night. Please pray for her speedy recovery! She was really happy tonight, so please know that she is not in constant pain with this hip, I'm sure it just bugs her at certain times depending on how she is positioned. We'll let you know more when we know more!