Tootsie Toughpants and AFOs

11-20-2011

Wow! It's been a month since I last updated Rachel's blog. Between working full time (and averaging 18-22 hrs of overtime), chasing Breanne and Alicia, taking care of Rachel, doctor appointments, Steve's school schedule and the never ending pile of laundry- I am lucky to turn my laptop on once a week (I am Starbucks' best customer- Steve too!). I can hear my knitting needles weeping in the craft room from loneliness. Some days I get home from work around 2 am, shower and get into bed by 3 am and up by 6 am to change and feed Rachel, get the girls ready for school and off to doctor appointments with Rachel, maybe eat lunch and then off to work again. One day I will look back and wonder how I did it. Running on love for my family and peppermint mochas. Enough about me . . .

Rachel is 14 wks old. I look at her and think she is so big but yet so little. Yes- we are still wearing newborn size diapers and most of her newborn size clothes still fit. I am guessing she weighs around 8 and half pounds currently. We completed 6 weeks of cast changes and she now has tiny AFOs. (picture coming soon of AFOs on her) She is to wear her AFOs for 14 hours a day. She will need to have the surgery to release the tendons in her ankles for the clubfeet. Her orthopedic doctor will need to put her under for the surgery so we have opted to wait for her to get alittle bigger- possible surgery in spring. Due to her size she is also very difficult to catheterize- we have been given the okay by her urologist to wait to start the ditropan and catheterizing until she is alittle bigger.

I have nicknamed her Tootsie Toughpants at the moment. Rachel has no problem expressing her displeasures. We are working at trying to get her to comfort herself and to fall asleep in her crib or bassinet. She loves to be held and snuggled and lets you know how displeased she is when we are not holding her. (I am running past episodes of Nanny 911 in my head- yikes! I refuse to be one of those moms that still have to hold their 5 yr old to get them to sleep)

First Spina Bifida Clinic Day and more cast changes

10-13-2011

Rachel is now 7 lbs 1 oz and 18.75 inches long.

The images are from this week's cast changes. Rachel's feet are getting straighter with each new set. This week her feet looked slightly swollen after the casts were removed. She was very crabby during the application of the new set and was kicking her legs around. She ended up with cast plaster all over her clothing and belly. No amount of Sweet Ease on her pacifer was going to please her this week. It seemed to have been crabby baby day in the ortho clinic as the other babies were crying too. That was on Monday.

On Tuesday we had our first Spina Bifida clinic day. It wasn't too bad- we arrived at 8 am and were done by 11:30. We saw the Urologist, clinic dietician, the rehab doctor, social worker and another lady who helped us sign up for some study programs. They place you in a clinic room and all of the people come to see you which is nice.

The results of her renal ultrasound showed normal healthy appearing kidneys. Her VCUG showed no reflux. Yeah for 2 out 3 tests! The urodynamics came back with bladder pressures in the 60's range and one peak at 109. Her spincter does not relax and allow her to urinate at a normal pressure - instead it waits for the pressure to build up. Over time this will cause thickening of the bladder wall and her bladder will not grow as it should and it will also cause reflux and damage to her kidneys. She is also experiencing bladder spasms. Her Urologist would like us to begin catheterizing Rachel every 6 hours and will be starting on Ditropan BID next week. We were given this week to practice getting comfortable with catherizing Rachel before the Ditropan begins. She is so tiny we are starting off with a 5 french foley and then we have size 6 also. The size 5 is like the size of a spaghetti noodle. Even though I have cathed adults- a wiggly baby is definetely a challenge at this point. I am confident we will get a system down and it work out okay. I am curious if she is too young to be started on a cranberry supplement as the cathing is going to put her at great risk for UTIs. We have a pediatrician visit next week so I will explore that idea with her.

One of the studies I signed Rachel up for is being done at the University of Wisconsin Milwaukee campus. It is testing both babies with SB and without SB on the use of treadmills for strength training of their legs. They have shown that both babies with and without SB will move their legs on the treadmill the same way and are researching if this could be a new treatment option for SB babies developing leg muscles. I am curious about this one- it sounds interesting- my shorthand version of the brochure does not give it any justice. I will keep everyone updated on this one. I am not sure if Rachel qualifies right now with her casts on ?????

8 weeks old and cast changes

10-6-2011

This week's images are from Monday when Rachel had her second set of casts removed and the third set applied. There was more of a noticeable difference with her clubfeet this week. We are scheduled to have a new set of casts applied every Monday for the entire month of October. I am happy to see this week's progress. She does not seem to mind the having the casts- she still kicks her legs up in the air- future Rockette dancer in the making. I continue to do CSM checks on her toes with each diaper change. I do have to agree with the other moms with kiddos getting casted for clubfeet- bring with extra clothes and wipes to clean up your little one. The dry plaster leaves a trail of dust behind - they do put a protective sheet over your little one but the dust gets everywhere. The wet plaster can get on your little one's clothes and in their diaper, on their belly and ect- good to clean off as soon as possible. For those who are not as familiar with casting- with using both fiberglass or plaster casting material the casts will get warm as the material hardens (takes less than a half hour) but afterwards will feel cold and damp until dried- usually a few hours. Also the cast saw removes the cast by vibration- it does not cut the skin- although if it is left in one place too long it can cause a burn and is noisy. Rachel usually sleeps through the cast removal and the cast spreaders seem to be about as big as she is.

Rachel had her urology testing done this morning. She had a renal ultrasound, a VCUG and urodynamics. We will not know all of the results until Tuesday when we have our first Spina Bifida clinic day. We do know from the VCUG though that there was no reflux into her kidneys and she was able to empty her bladder on her own. The results from the urodynamics will indicate her bladder pressure and if she were to need to be straight cath'd. They had to use a size 5 fr foley on her for the testing since she is so small.

We are having good results for diaper rash/open area prevention using Antimonkey Butt powder following by a layer of Antimonkey Butt cream. I have only been able to find it at Walgreen's so far. Needless to say, I bought out the shelf of it yesterday. Both are priced at $5.49 which is not too bad.

7 weeks old

9-28-2011

The first two pictures are from a few weeks ago during and after Rachel's first "baby tub" bath. She loves being in the water and is looking forward to when she can have a "baby tub" bath again.

Last week she had head and hip ultrasounds done. Her head ultrasound came back normal- her vents continue to measure normal with no signs of hydrocephalus. Yeah!!! Rachel's neurologist gave her the thumbs up and she does not need another head ultrasound until December.

The ultrasound of her hips did not contain as good of news as her head ultrasound did. Her hip dysplasia is worse than what was originally expected. Her hips are riding along the posterior edge of her pelvis. Her "german tourist" brace did not make any improvement in her dysplasia (which I kind of suspected would be the case). Her ortho doc discontinued the brace and we are going to revisit her hip issues in the future. (She is going to be following her daddy's road with hip issues) The ortho doc started Rachel with her first set of casts for her clubfeet. I think the casts almost weigh as much as she does. As heavy as they are - she still kicks her legs up in the air and holds them there. On the bright side her quads and knees appear to be quite strong. Yesterday she had the first set removed. Her ankles were more flexible than what they had been but within minutes her muscles pulled her feet back into the starting position. She slept through the application of her second set of casts. Her ortho doc is planning on four more weeks of casting and then we will evaluate her progress. She is most likely going to need to have surgery to release the tendons at some point. In the picture of Rachel in her car seat with her first baby doll, she has on a pair of aloe infused spa socks over her casts. They keep her toes warm and are so much cheaper than buying baby leg warmers- at $3 a pair (Walmart) you can't go wrong. I tuck the tops of the socks over the top of casts also to prevent rubbing and to keep any tinkles or poopsies from getting into her casts. Needless to say- she has a few pairs- right now she is wearing stripped ones that look like candy corn.

I was able to meet another mom at the casting appointment. Her very adorable baby girl Gabby also has spina bifida and was getting her clubfeet casted. They are located in a town near by our town.

Rachel is now up to 6 lbs 4 oz. She feels so big in comparison to how small she started out. She frequently makes big toothless smiles and makes noises like she is trying to laugh. I wonder what she is thinking. I think we may have another class clown in the family.

5 weeks old

9-15-2011

Rachel is doing well. She has increased her feeding amounts to 2.5-3 oz per feeding (about every 3.5-4 hours). We can tell she is gaining weight and growing. I can not get the straps to attach anymore on her German Tourist Outfit (yes- I will be calling her ortho doc for them to reevaluate the size of it- she currently has the preemie size and is probably ready for the newborn size). She is now able to fit into newborn size clothes- yes they are still alittle big but she will be able to wear then for awhile. I had a hard time trying to find a fall jacket for her to wear- everything I found was sized for 3 months and looked like it was made for a giant baby. Her cheeks are getting chubbier and she is now finally starting to grow buns (I am sure she will be mortified when she is older that I wrote that). In the middle picture that I posted- to me her facial features look similar to a picture that my mom has of me (only in mom's picture- I am about 6 months old around Christmas time). The beautiful dress Rachel is wearing was kindly knitted by our neighbor Bev and we absolutely love this dress! I will be saving it for her for when she has her own family. I have one blue knitted dress that my Grandma Scherer knitted for me when I was a baby. We can't seem to figure out her hair color- today it looks reddish, other times it looks brown and in some lights it looks blondish--hmm . . . . . Her eyes are still a dark blue but I am not sure how long it takes for a preemie's eyes to change. I remember it took Alicia almost a year before her eyes finally settled into hazel.

First Pediatrician appointment

9-6-2011

Rachel had her first pediatrician appointment today. She now weighs 4 lbs 10 oz and is 16 inches long. We do not know what her beginning length was but I do not imagine it was that much shorter than her current 16 inches. She checked out well at the pediatrician's. No immunization though until next month's appointment. We are to continue on with Rachel as we currently are. She is still to receive Neosure as an added supplement to the EBM until she gets alittle bigger. Her bottom looks great- I highly recommend using Triple Paste to others battling diaper rashes. You can find the Triple Paste at Walmart in the baby dept by the other diaper creams.

I am not sure if I had previously mentioned that Rachel's name was biblical and translates to sheep- which are symbolic of God's children. We feel truely blessed by how well she has done with the fetal surgery and there after. Thank you heavenly Father for laying your hand upon our daughter.

She's home!

9-5-2011

We were able to bring Rachel home on Saturday. She just made the 4 lb weight limit of her car seat. She is sitting on a blue foam ring to avoid pressure on her lower back during the drive. The nurses also rolled up two blankets on each side of her for extra support. It was hard to find car seats rated for 4 lbs and up in our area- we had only one to chose from at the Target in Menomonee Falls. (For others with preemies the brands Safety First and Chicco make the 4 lb car seats). She tolerated the ride home with no problems (even with Breanne and Alicia in the back seat with her).

We have a ton of doctors' appointments coming up this month and next month. I believe the first two are with Neurology and Orthopedics. She will be having an ultrasound of her head and her hips again.
All of her head ultrasounds have been normal so we are hoping to have dodged the bullet for a shunt but I know it is still early. Hopefully her hip ultrasound will show some improvement in her dysplasia.

Rachel has been feeding every 3 1/2 hours and has been taking in an average of 45-50 ml at each feeding. She rarely spits up which is a great treat for us as both Breanne and Alicia use to spit up nonstop. (We had stock in the Hoover steam vac carpet cleaner back then-lol) I think she has spit up twice so far- the first time landed on the wooden floor in front of us and had our black lab Dixie (10 yrs old) running for cover. Dixie runs for cover if Rachel cries at all. Dixie also hides under the table while Rachel gets her diaper changed too and sighs deeply like she is missing out on her sleep too. Maybe Dixie is having flashbacks of when Alicia was born??? Lucky on the other hand growls whenever Rachel cries- I am worried he is going to come bite in me in the pants when she does. (He will grab your clothing with his teeth if Breanne or Alicia squeal when you are playing with them or if you try to carry them around- very protective watch dog)

Rachel has adjusted well from her quiet hospital room to a house full of noise from her sisters, dogs and parents. She sleeps right through it all - I am hoping to push the bassinet in by my treadmill and get her use to the noise it makes. I had been running 2.5 miles when I became pregnant and am desperate to get back to running again ( I am sure with the all the bed rest and surgeries it will take me some time to get there).