Pavlik Confusion

I can't explain how much I love my girls. I am enjoying way more than I ever thought I could, bonding with them. I savor the sweet moments when I have both girls quietly looking at each other. I am grateful Ada looooooves being a big sister. Katie is now consistently smiling, my heart does leaps and twirls watching this. My excitement grows as Katie starts to smile at Ada more.

This week a nurse from Riley called. The orthopedist there has a differing opinion than the radiologist here. Riley's opinion is that Katie actually does have hip displaysia and needs a pavlik harness asap. I explained we were told already her hips were fine. The nurse said my concern about the difference in opinion is completely valid and will follow up with the doctor and call me back next week. My heart broke. My sweet girl may have to be put in a harness where her legs are stabilized in a froggy position. I know it's not a huge deal, but I feel horrible she has to go through all this. It's hard watching your child begin the process of development different than what it normally is. It's hard talking with Ada about spina bifida. She's so young. I'm so grateful she is like her daddy and learns well. She is so adaptive to learning all about Katie and she seems to want to know as much as she can.

Daily I find myself dealing with different emotions. My doctor, our friends and much of family says we are dealing with being Katie's parents well. I'm not totally sure what that really means. We arent rejecting her she is our 2nd miracle. She is important and we love her. I'm not flipping out about the whole thing, that would do no one any good. She is alive. 50-60 years ago her likelyhood of living would have been small. I will say it like I have before I can handle her having spina bifida because at least she is alive.

I learned at our last family doctor's appointment that the resident dr that took care of me in triage while in labor was actually quite scared for us. She was really shaken up that night we found out. I am grateful she had our doctor to learn from. He dealt with the emergency really well. I'm also glad to have affirmed that my emotions that night were appropriate and not too dramatic.

After getting the call from Riley this week I called my sister. I cried. I cried because I was confused about the difference of opinion. I cried because I hate that Katie has to go through this. I cried because sometimes it's the only thing that comes out. I love that my sister can pull me up and say things like, "don't you feel sorry for her. she is a strong kid, even as a baby, you teach her to be strong. she doesn't need your pity, she needs your strength."

I called my best friend and cried a bit more. I love that I can cry and say over the phone that it's really hard and she has a calm voice telling me it's ok. 

I know there are going to be even harder moments with Katie's development and being strong just comes with the life, but this week I felt exhausted and fragile. Being honest with myself is knowing that somethings are just hard and it's ok to cry as long as I don't get depressed. So... I am making small good moments into big deals.

We are making tomorrow night a family outing. A fireworks show together, finally some real quality time! We are taking snacks and hopefully creating special memories. I am excited and not letting the thought of a pavlik harness or feet castings or trips to Indy or spina bifida at all bring me down. I am going to enjoy this time together with my adorable girls and hunky husband. So take that Spina Bifida :-P

for more info about things talked about see below...

http://www.hipdysplasia.org/developmental-dysplasia-of-the-hip/tips-for-parents/pavlik-harness-tips/

http://www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.8277225/k.5A79/What_is_Spina_Bifida.htm

http://www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.8270435/

Being Katie's Mom June 16

Things have settled a bit in the busyness factor of life just in time to speed back up again. We have had multiple appointments with our nuerosurgeon who says her shunt is working that way it is supposed to. First Steps physical therapy is underway. No "new" things report.  Our next Riley appointment is in August.

I have really hard moments still when I think Katie will react to her foot being one way or another and she doesn't. It really breaks my heart that she has no feeling from her knees down. My poor beautiful girl. She has no idea what it's like to have her toes tickled and playing 'this little piggy' has a different sentiment than with Ada. I do not waiver on God's goodness. I do not doubt He can heal her but I can't help but still be broken about it. I don't wallow in depression. I don't feel constantly down, but I do feel a huge responsibility to be the best mom I can. I'd be lying if I said I don't have angry moments because I do. I think, "haven't I been through enough??Growing up in an angry home, 2 family murders, an abusive boyfriend and a heartwrenching ministry catastrophe in Florida.. that isn't enough?" Then I have to step back. It really isnt about me and how many things I've gone through. Besides that I get to be the mommy of 2 beautiful children, the wife to an amazing husband, attend an incredibly supportive church and have an amazing relationship with the family I grew up thinking I wanted nothing to do with. I am blessed.

Spina Bifida won't define me or my family but it will create a venue for us to speak with others, a connection with people we never dreamed, It is a constant reminder that lfe is taken for granted and we get to be on a journey that we are not in complete control of. I am grateful for my girls and the man that is my husband and their father.

Riley Trip 1 May 8

What a trip. We started the day out with me a bit frazzled trying to remember everything we had to take. I really thought for sure I had forgotten something but I double and triple checked the bags. A peaceful drive to Indy turned into using my phone as a gps because we somehow managed to get off the road we were supposed to be on. Finally arriving at Riley then we had to figure out where to park and what building to be in. BEFORE we could do that Katie was super de duper hungry. Ah, there's the rub... I forgot the only bottle we had with a ring on it. I had bought more nipples and slipped those into the bag but not the bottle we normally use. Super Jeff daddy to the rescue! Jeff managed to use a multi-tool to create a ring out of a bottle lid. I felt really bad that he had to that and realllly grateful that he could manage it. Not a fun way to start our day and I'm sure I'll find the large amount of humor in all that in a few days.

Once we found the right building and the right outpatient sign in area we got in to see nurses and doctors right away. It was a whirlwind of people, most of which didn't say much new but gave us more paperwork and more "support" information for finances and otherwise. We have a rehab doctor, developmental doctor, neurologist, urologist, a social worker and an orthopedist. Nurses accompany all of those doctors. Thankfully they are working with people here in South Bend and some procedures and follow ups will be done here rather than there. All in all the appointment took about 2 and half hours. We met the Spina Bifida Association representative on our way out and received the date of our next appointment in 3 months.

I wasn't very encouraged or incredibly highly impressed with Riley like many people said I should be. I would much rather be here than to travel. I was actually more discouraged by going there than I have felt this entire time. They didn't have many great hopeful words of wisdom or seem to think she was anything more or less or better or worse than any other child. I got the feeling of indifference from almost everyone. Maybe it's because that's their expertise and it's not out of the ordinary to them. Maybe it's there way of being forward looking. Either way it wasn't what I expected. We have an order to get her hips ultrsound(ed) to make sure her joints are in place correctly. That is the only new thing we have at this point. 

Tomorrow we have more physical therapy and next week is a follow up to make sure her shunt is working correctly.

Attempting to deal April 28

I'm trying to come to terms with having a c-section. I am a huge proponent of natural laboring and delivery. I have done my research and know that c-sections are done waaaay too often and more often than not unnecessarily. A baby can be born breech. However, having a baby breech with hydrocephalus causes extra complications. Ada's delivery was the most empowering experience I have ever been through. I feel like I'm missing something in my life now. I can have a baby naturally and I didn't get to. I won't ever get to again either. (I know there are doctors that do VBACs but my doctor isn't one and after looking into the risks I'm not sure it's worth trying). My decision to have more children is much more serious than ever now. I don't want to willingly walk into a situation where I'd have to have an epidural or major surgery like a c-section. In texting a friend there really is a need to grieve the situation a bit because I lost my ability to do one major thing my body was created for. 

I'm trying to take one day or even one moment at a time in dealing with the current reality of Katie's body. I have much hope for her future, but there are times when I hold her little toes and feet and question what if anything I could've done despite my doctor telling us there was no way to prevent it. I think of the concerns I have for her future but toggle back and forth to the excitement of what it will be like when she does walk. There is a HUGE reason why her middle name is Joy. I will never regret her name choice. She and Ada will teach me much. 

One thing I know God gave me my family. My husband is the greatest man I have ever met. He is calm and handsome and the strongest person I know. I saw his strength during the weakest and most helpless moment in our lives when the doctor said our little baby may not live. I saw his joy and peace in finding out the she is living and is not struggling. I see his beauty inside of his very core of his being as he holds me through each day and depends on our Savior for everything.

I'm learning you can't really "deal" with things that are out of your control. All you can do is embrace the challenge as an opportunity to do as God calls you.

End of Week 1 April 21.

Things are getting easier to deal with, slowly but surely. Katie's surgery went really well on Wednesday. They even put her on her back on Thursday to do a CT scan and she had minimal pain. We still can't hold her and I can't feed her yet but she's getting breast milk through a feeding tube. I am so grateful for the wisdom God has given those in the medical field. Her head did swell 2 cm but hasn't gone up since, this is normal when closing the spinal wound she was born with. They will do surgery on Monday to put her shunt in. That should drain her fluid off her brain and cause the swelling to dissipate. 

The more I heal physically the harder is it not to hold her. I am getting full night's sleep which is different than the normal newborn stage in a family, but I would take those sleepless nights just to hold her. I'm getting to know her personality. They tell me she's "fiesty" I think she's frustrated just wanting to be held and determined to prove everyone wrong. Our doctor will meet with us Monday and several days after that. Hopefully this next week Katie Joy can come home. We already are trying to prepare our hearts to hear all the instructions of what it will be to take care of her. I am finding a lot of comfort meeting the other NICU moms. I am hoping to find some other moms who have children with spina bifida. 

We are grateful beyond grateful, we are being blessed by people all over the place. We have every meal practically provided for us. There is constant family support, the nurses and doctors are really sensitive and sympathetic. We have diapers and formula being paid for, she is covered completely as far as we know for bills so we don't have debt piling at all. We can focus on loving our girls and learning how to bond as a family 100%. It's crazy how many people have said to us that God created us to be her parents and they can't imagine better parents for Katie Joy. I never imagined having a situation like this but Jeff is stepping up in a way that I never would think he would want to. He has been the biggest strength next to Jesus. If we didn't have the hope of glory Christ in us we would be lost. This would be unthinkable without God. Many of my family members who aren't church going or bible believing Christians are seeing us "deal with it really well." but can tell it isn't just our strength there is more to this than flesh and blood here. 

I've said it before and I'll say it again, I don't care that Katie Joy will be different she is alive and I get to be her momma. She is our sunshine and God will use her to bring people to Himself. God is good in every situation, no matter how high or low it feels He is still the great I AM!