Thursday, September 30, 2010

Sunday, September 26, 2010

Club Foot

Along with spina bifida, Ruth was also born with bilateral club foot (meaning she has club foot on both feet). Club foot can be isolated, but it is also very common to see with spina bifida, so it may be a result of nerve damage.

According to Wikipedia:

A clubfoot, or congenital talipes equinovarus (CTEV), is a congenital deformity involving one foot or both. The affected foot appears rotated internally at the ankle. Without treatment, persons afflicted often appear to walk on their ankles, or on the sides of their feet. It is a common birth defect, occurring in about one in every 1,000 live births. Approximately 50% of cases of clubfoot are bilateral. This occurs in males more often than in females by a ratio of 2:1.


Ruth will see an Orthopedist at Scottish Rite Hospital towards the end of next month for evaluation and treatment. Treatment often entails a series of whole leg castings to bring the feet back in their proper position. We are also doing, and have been since shortly after her birth, range of motion excercises to hopefully help.

Our 2nd daughter was born with bilateral club foot. She was diagnosed at about 16 weeks in utero. She was seen at Scottish Rite twice, but beyond range of motion excercises, no treatment was required. She is now 7 years old, and one would never know!

G's feet - 2 weeks old
Ruth's feet - 6 weeks old


We do expect Ruth will require treatment, her club feet seem more severe than our other daughters were, and also because of her having spina bifida. But she does have good range of motion in her feet now, and we are hopeful her treatment/castings will be short!

Thursday, September 23, 2010

2 Month well-baby Checkup

Ruth had her well baby checkup at the pediatrician today.

Stats:
7 lb 7 oz
19 inches long
36.5 cm head circumference

The doctor was happy with her weight gain, and also very happy with the amount of movement she has. She is still not on the charts in weight or height, but they don't adjust for being premature. Head circumference is holding steady at about 10%. Yay!



She also got a couple shots, and a oral immunization against roto virus. Still waiting on hearing back about getting her immunized for rsv.

She goes back at 4 months old - not again for 2 months unless I have concerns! Of course, she has appointments at other places just about every week until then.

Wednesday, September 22, 2010

2 Months old!

Today marks 2 months since Ruth's surprise birth!


Ruth is doing good, getting bigger!  Her little personality is coming out more and more, and I even got a brief real smile - no it wasn't gas!! 

Things have been pretty calm around here, not too many appointments or obligations, just getting back to normal around here.  Her sisters are just facinated with her, everytime she cries they want to know "what she wants".  She has definitely found her voice, she has no little danty cry.  She is also fond of being held, not too crazy about the baby swing, but does seem to enjoy tummy time with a couple toys to look at.


Since my last medical update, Ruth has only had one appointment and one lab.  A couple weeks ago she had her first appointment at Scottish Rite Hospital in Dallas, which will coordinate the majority of her spina bifida care.  It was mostly a get to know you appointment.  They checked her over, seemed really happy with her leg movement.

"She will walk.  She will even run, I just can't tell you how fast."

The doctor also explained her MRI results to us, which I never really got anyone to go over them with us in detail at UCSF.  She has considerable hydrocephalus.  He showed us her scan, then a normal scan, and it is definitely considerable.  The good thing about that, is it's not getting worse.  Her head circumference has been growing normally, and she's not showing any of the symptoms.  We will continue to monitor her closely for the next year for signs she may need a vp shunt, but we are hopeful that is one thing she can just skip!

She also has a tethered cord, which means the end of her spinal cord is attached to scar tissue around the area she had her surgery.  It should be loose at the end, and end a bit higher up on her back.  That is another thing we will have to watch for symptoms (deteration in areas such as bladder/bowel, or her club feet).  If it becomes symptomatic, she will need a surgery to release the tether.  Until then, we just watch.


She goes back next month for a gauntlet of appointments.   Nuerosurgeon appt at Children's hospital, to establish care - at the moment she isn't needing his help.  Urology, Ortho (for her club feet), and Spina Bifida appts at Scottish Rite.  All spaced about 1 week apart.  It is a bit of a drive, so I'm hoping that as she gets older we can have some of these appts on the same day...

She has her normal well baby check up at the pediatrician tomorrow.  I am curious to see how much she weighs now - I can definitely tell she has gotten bigger.  She is filling out the newborn clothes a little better now, and has outgrown most of the preemie outfits.

Sunday, September 19, 2010

Due

September 19th, 2010.  Today was Ruth's due date. 

This date gave us a countdown many times this past year.  Around 40 weeks ago her little life sparked and we found out shortly after we were due.  Around 20 weeks ago, we found out we were expecting our 5th little girl, and she would be facing the challenge of spina bifida.  Around 16 weeks ago, Ruth and myself underwent a very risky fetal surgery as part of the MOMS trial in San Francisco, to close the lesion on her back.  Around 9 weeks ago, I went into early labor and Ruth made an early appearance in this world.  Around 5 weeks ago, Ruth and I flew together on an airplane back to Texas, back home, and Ruth met her sisters for the first time.  This past week has been a lot of reflection for me.  My other four girls were born around 39 weeks gestation.  This week would have been a lot different had things been different.  But this week was extraordinarily ordinary!  Ruth fits into our family like she has always been part of it, and we feel complete with her.

Wednesday, September 15, 2010

Newborn Photos by Tracy Autem

I just love them!  Thank you so much Tracy!

She was about 7 weeks old when these were taken.






Photos by Tracy Autem - check her out!  www.tracyautem.com

Monday, September 13, 2010

6 weeks Photos

I'm a little behind on posting these, but I thought they were worth sharing.  They are from the Friday before last, Ruth was just over 6 weeks old.



Hello Everybody!

For her first month of life, Ruth met her parents, and both Grandmas.  She has been busy meeting everyone else since then!  Here are a few "meeting" photos:





Ruth is looking forward to meeting the rest of our friends and family soon!

Sunday, September 12, 2010

Sneak Peek

Tracy came over last week and took some newborn photos of Ruth. Ruth decided to be very clingy (of course) during that time, and cried anytime I tried to set her down. But Tracy was very patient, and I know she got some awesome photos! She gave us a sneek peak the other night on Facebook, so for the benefit of those not on Facebook here they are:



Can't wait to see the rest!

If you live in the DFW area and want some professional photos taken, check out Tracy's website at tracyautem.com and lightlyphoto.com. (She also took the photos of Ruth's homecoming)

Thursday, September 2, 2010

6 weeks old!

Ruth is now six weeks old, and doing great! 


She is doing very well, doing everything a baby should do (eat, sleep, dirty diapers).  She is getting more reactive to us, but since she was born early, she will be delayed somewhat on the social milestones (smiling, etc).   She will do a lot of that stuff more in line with her due date, not her birth date.

We finally resolved our "catheter situation".  Our wonderful insurance case manager got on the phone and got the company to get things moving.  I also found a local medical supply company that was kind enough to give me a couple days worth to get us by until the shipment arrived.  Nicole also sent us some of her smaller size that she isn't using anymore (thanks Nicole!!).  So now we shouldn't have to wash and reuse catheters any longer, thank goodness!

Ruth also had her ophthalmology visit last Wednesday.  The main purpose of the visit was to follow up to look for ROP (preemie issue), since the vessels in her eyes were not mature at her last exam.  Everything still looks great.  We will follow up in one year to check for spina bifida issues unless something comes up before then.

VIDEO: Ruth @ 6 weeks old