Saturday, January 22, 2011

6 Months Old!

So, amazingly enough, I am posting this on the day she turns 6 months!! I can't believe it has been six months since that very eventful day she was born, at 1:50 AM. She has come so far since then, and is doing wonderful.

  • Rolling over, although the braces with the bar on her feet seem to hinder that.
  • Sitting up with support for balance. She has gained some major trunk strength this month!
  • Pushing up with her arms while on her tummy, and even occasionally brings her knees underneath her.
  • Using her hands to grab things and bring them to her mouth, and chews on her hands all the time.
  • Bearing weight on her legs when we hold her up. She has been doing this a lot more recently, I was worried she couldn't feel enough to know to push back against the floor.

    So far, no problems. She goes for a rapid MRI and neurosurgeon appt in Feb to check the stability of the fluid in her brain.

    Back to cathing every 3-4 hours, ditropan 3x day, and a daily antibiotic. The dose of ditropan is double what she was on before, and she hasn't had any wet diapers since. But plenty of poopy ones! We are doing cloth diapers and wipes with her while at home, and it is pretty easy. Saves us a fortune on diapers & wipes, especially since I already had the cloth diapers from her older sister.

    Going great. She is in the brace with a bar between them full time. She gets three 30 minute breaks a day to check for pressure sores, blisters, etc. I try to let her have some free time on the floor without them, so she can roll and move around unhindered. We go back in the beginning of Feb for a checkup.

    Her MOMS teddy bear :-D

  • Back to Cathing

    On Tuesday Ruth had her follow up renal ultrasound and checkup with the Urologist.

    We had an afternoon appointment, and our wait time was non-existent. Nice!

    The ultrasound was first. Ruth wasn't crazy about having to lay there for it, but the technician turned on a T.V. and that kept her distracted. Her bladder was VERY full again, so at the end they had me cath her to empty it, so they could get images of it empty. I had a little more trouble this time, I guess I'm out of practice. The technician was very sweet, and told me I did well. She gave Ruth a toy at the end.

    We went right over to the clinic to see the Urologist. We met another young couple in the hallway, their infant son also has Spina Bifida. It was nice to chat with someone dealing with the same things. Ruth was busy smiling and talking to everyone that talked to her, so she earned herself another toy from one of the nurses.

    We didn't have to wait again, which was nice. The urologist came in, asked how we were. I said great - the last month since we've seen him was very uneventful. No bladder infections or other excitement. He said, well, the results of her ultrasound were a little worrisome. The right kidney had more fluid in it than it did at her last ultrasound. This is the side she also has reflux. He said this is concerning, and he felt at this point she is in the group of babies that he feels cathing and ditropan may help. I was really disappointed to hear that, but also relieved in a way. I've spent so much time worrying that she needs this, and we aren't doing it, worrying that we are causing damage to her kidneys and bladder by doing nothing. He did reassure us that her kidneys look great right now, no scarring and they are growing like they should. He just wants to keep it that way.

    She goes back in 2 months for another ultrasound and checkup. Pray that the cathing and medications improve the swelling, and her kidneys and bladder stay healthy.

    Ruth with some of her loot from the visit. She is just so cute - it's hard not to give her toys, haha!

    Wednesday, January 5, 2011

    She got a Zero

    Ruth had her Ortho checkup at Scottish Rite yesterday.

    We got there first thing, only to be greeted by a huge crowd!

    (Forgive the quality of these photos, I forgot my camera and only had the camera on my phone)

    I soon learned that the LSU Tiger college football team was visiting and signing t-shirts. They were giving all patients shirts, so I got Ruth the smallest they had (which was not very small!). Since I am a big Longhorn fan, not LSU, I really didn't know who any of the players were, so I had a couple ones close by sign her shirt, and then got a big dude to take a photo with her.

    Then we headed back for her appointment. She got a big kick out of looking at herself in the mirror, it kept her very entertained until the doc came in.

    When we first went in for her club feet back in October, they graded them on a severity scale of 0 to 20, with 20 being the most severe. She was graded a 16 at that point.

    They asked if we have any issues with the braces - which we haven't. They took a look at her feet, the positioning and flexibility. She scored a ZERO. Being the BEST SCORE POSSIBLE! Woohoo! We still have to keep up with the bracing for a couple more months just to keep things looking good. We go back in 1 month - I am grateful for at least a break in one of her doctor appointments!

    We then headed down to orthotics to get her braces checked. Everything was good. He told me that since she has such good range of motion in her feet, that helps, since most of the issues (blisters, pressure sores, etc) are caused with there are still some clubfoot issues there.


    I've started this post a couple times, and not finished it. I'm just not sure I have the right words. I believe we had many people watching out for us this past year, and we were placed in the paths of certain people for a reason. One of those, were the doctors and staff early in my pregnancy, the ones that made the spina bifida diagnosis, and helped us get into the Management of Myelomeningocele Study (MOMS).

    My last 3 daughters before Ruth were delivered by a wonderful OB in Dallas, whom I LOVED. After we moved, I felt the drive was too far since I have super fast labors, so as hard as it was to leave my beloved OB, I searched around. Based on some glowing recommendations from some local moms, I found one not too far from me. Dr. Moser.

    I was very impressed with her and all of her staff, so when we were trying to get pregnant with Ruth and got our first positive test, I made an appointment with her again. Everything was looking great. They have sonograms at every appointment (some just to check for a heartbeat), but I loved that.

    I opted in for all the normal blood tests (ones that check for things like SPINA BIFIDA), and everything came back normal. So, everything was looking great when we went in that one day. At 20 weeks. Luckily Matt was with me. We got the big news "It's a GIRL!", but looking at her feet it was obvious they were clubbed. We weren't too concerned with that, having one other child that was born with clubbed feet. But she just couldn't get a good measurement on her head (her head!). So, she called over to the Perinatalogists next door and got us an appointment for early that afternoon. We had time to eat lunch (and try not to freak out), arrange care for our other children, and head back up there. The perinatalogist came in, looked around on a level 2 ultrasound, and said, yep. SPINA BIFIDA. He showed us the opening, which was low, which he said was a good thing. He showed us the signs in her brain, which had caused the strange measurements. He told us about something called the MOM study, which does fetal surgery, and gave us a number to call. Told us to call THAT DAY, because there is a time limit.

    So, we did what we needed to in order to participate in the study, but with one hang up. INSURANCE. The study covers the fetal surgery, but anything routine (like OB care, c-section, etc) is still billed to your insurance. And we had an HMO, with no out of network coverage. We were given very grim odds to get approval.

    But we had someone in our corner. Dr. Moser, and her office manager Paula. Paula, who also happens to have a daughter with Spina Bifida. Paula worked her tail off, faxing records, answering phone calls, and emails, anything she could to help us get there. I honestly think without her help and support, along with a very kind case manager from our insurance, we would have had a much harder time getting our insurance to approve the transfer to SF.

    Since Ruth's diagnosis, I have connected with many other mothers in my position. Many have horror stories about their OB's pushing termination after a spina bifida diagnosis. All I got from my OB and all of her staff, was love and support.

    They followed me during my stay in SF, and the two checkups I've had since coming home, have been so supportive. Ruth is a rockstar there. I don't have to worry about getting a babysitter for her during my appointments, she even got her diaper changed!

    Left to Right: Paula and Ruth (8 weeks old), Paula and Ruth (4 months old)

    I am extremely thankful to Dr. Moser, Paula, and ALL her staff. I am thankful for the Perinatalogists that told us about the MOM study so quickly. I know God placed me at their practice for a reason. It is my wish that every woman facing this scary diagnosis have the love and support I received from my doctors.

    Car Seat Photo

    I love photos like these - to show how far she has come in such a short time.

    The photo on the left was taken the day of her hospital discharge, just 1 day shy of being 1 month old, she was around 5.5 lbs. The one on the right was taken at 5.5 months (yesterday), she is around 15 lbs.

    Left to Right: 1 Month Old, 5 Months Old

    Saturday, January 1, 2011

    5 Months Old!

    So, I'm a couple weeks late posting this (again!)... Fortunately, nothing much new has happened since my last update!

    Ruth has been healthy, no doctors visits since getting her casts off except her monthly visit to get her RSV vaccine. But she was also weighed for the first time since losing her casts at that appointment - a healthy 14 pounds 13.5 ounces, and 24.2 inches long!! My has she grown from her tiny 3 lb 15 oz, 16 inches!

    Here is another "growth" photo - she hasn't been able to fit in her bumbo since before her casts, so here is a before casts and after casts photo. A big change in 2.5 months!

    She is rolling from stomach to back pretty consistently, and has rolled to her stomach in her bed a few times, but never repeated during play. She is getting better at sitting up now that the casts are off, but still needs quite a bit of support. She is also bearing some weight on her legs, which is a big deal for me. Hopefully now that she has full motion of her legs, her strength will continue to improve! She is smiling and "talking" to us, and has given us a few big belly laughs. She is also getting really good at using her hands, grabbing toys and bringing things to her mouth.

    Medical Stuff:

    Ortho - she is done with castings, and is in the braces for approx 3 months. We go back this week for a follow up.
    Neuro - still doing good, no need for a shunt so far! We go in Feb for a rapid MRI (no sedation) and a follow up.
    Urology - no UTI's!! We go in later this month for a repeat ultrasound to see if the swollen kidney is still swollen, and a follow up.

    MOM Study:

    Some rumors have been floating around about the MOM Study (prenatal surgery trial), that they are closing it and opening up the surgery to anyone that meets the health requirements - no more randomization. No results have been published, but rumor has it something may show up in a medical journal this month!! My guess is that since they are opening up the surgery to anyone, that the results must be good! But we will see, I am excited to hear the results whatever they are, so hopefully this rumor is true and we will hear something soon! This study started in 2003.

    My attempts at some artistic photos:

    Great Grandparents D

    We were blessed by a visit from one set of Matt's grandparents - the girls Great Grandparents! I never knew any of my great grandparents, and my grandparents have all passed, so I am so blessed that the girls will know and remember theirs!

    ALL the girls loved the visit - and Ruth was happy to finally meet them!

    First Christmas

    Ruth's first Christmas was a good one.

    We went to Mass early afternoon, and did not get there early enough to sit in the main church. But we DID get there early enough to get a seat in the overflow area, so we didn't have to stand. Ruth was a trooper, as usual.

    Here is my attempt at setting the timer on the camera to catch us all dressed up!

    The sisters all decorated cookies for Santa as tradition in our house, and Ruth joined in by watching from her high chair. I have a feeling next year she will be in the middle of it!

    Grandma and Grandpa, and Uncle Marc came in late Christmas Eve and stayed most of Christmas day with us.

    We had a great, low key Christmas day, full of food, gifts, and love.