Surgery and The Final Stretch

This past week was a very eventful week for Natalie.  She made some improvements, fell behind in some areas, and stayed the same in others.  As far as her feeding (from the bottle) she has fallen behind.

We had hoped that she would learn to drink fully from her bottle before she came home so that she could avoid having to get a "G-Tube".  "G-Tube" stands for "Gastrostomy Tube" and it's simply a small tube that is inserted into the abdomen to deliver nutrition directly to the stomach.  It's essentially a feeding tube that goes straight into her stomach instead of through her mouth.  These tubes can be inserted temporarily or permanently.  In Natalie's case, the doctors think that she will eventually learn how to fully tolerate her milk via bottle feeds but she will need the G-Tube for a time until she learns how to eat on her own completely.  So with this prognosis, her doctors recommended that we go ahead with the G-Tube surgery so that she could leave the NICU and work on her feeding at home with us.  We went ahead with the surgery on Friday.  She went through surgery great and she recovered like a champ.  She is already eating through the tube.  Joanna and I got to give her some of her feeds through the new tube this afternoon and we'll learn all of the ins and outs of the tube tomorrow with her nurses.  The type of tube she was given is super easy to use and a lot less scary than we originally imagined it would be.  It's a tiny little white circle called a Mic-Key button that is about as big as a penny in diameter and it sticks up about 1/2 an inch from the left side of her belly.  It has a little opening in it where we plug in the tube containing her food and then it simply pumps in.  So far, so good.  

Since she now has the tube, her doctors will now evaluate exactly when she can come home.  They are projecting that she will be with us at home by this Friday.  We hopeful that they are correct in this projection but we'll find out for sure later this week.  

Also, i'm not sure if it was mentioned in the last post but both of Natalie's feet and legs have been casted in hopes of straightening them up.  Like we mentioned before, they thought she had clubbed feet, then they didn't, then they did, then they didn't.  Well they decided that regardless of whether her feet are officially clubbed or not that they need to be corrected so that her hips, knees and feet would align correctly as she continues to develop.  Her first round of casts come off on Tuesday and they will assess if she'll need more casting or bracing or anything else like that.  We'll keep you updated on that.  These casts aren't very comfortable as they impede her ability to lift up her feet like she did while she was in the womb (aka up around her head).  So it hurts her to keep the m down all the time but she is getting used to it more and more.  Her occupational therapist and some of the nurses attribute her lack of eating from the bottle directly to the discomfort of her casts.  I tend to agree with them as her feeding did drop off the day that they were put on.  I confronted the doctors on the decision to cast her and they said that if they didn't cast now then they would have to perform surgery later.  So they basically told us that her feeding would probably increase anyway so it would be in her best interest to start correcting her leg/knee/feet alignment ASAP.  So we agreed to let them keep the casts on.  Prior to that conversation I was ready to cut off the casts myself :-)

Also this weekend they decided to do a few more tests on her.  They took a small piece of muscle from her thigh for a muscle biopsy.  This tests the complete makeup of her muscles in hopes of finding out what might be causing her weak development.  One of the things that this biopsy will look for is Muscular Dystrophy.  If it does turn out to be MD we found out that MD has a HUGE spectrum of possibilities. On one end of the spectrum is very little effect on the body to severe physical limitations on the other.  So we're not even going to speculate on any of that until we hear back from the biopsy.  Also most of the metabolic tests will get back this week.  So far, all of the other tests have come back negative or normal still.  So we're just waiting on the rest.

Her vitals are still great.  She is barely even being monitored anymore and she is showing good signs of growth in this first month.  We can finally see all of her face now that her oral feeding tube has been removed.  She continues to become even more beautiful every day.  She's a very petite and dainty little girl but she's tough.  She's gone through a lot already and she continues to impress us with each new challenge she faces.  We hope to have her home this week so that we all can find some sense or normalcy.  I'll be sure to let you all know the specifics this week in regard to her NICU discharge.

Thanks for reading and being a part of the process with us so far.  We appreciate you all and can't wait for all of you to meet our little Natalie.
      

Natalie's Progress

Last post I talked about how Natalie's story was not one that could be easily interpreted.  As we enter into our 3rd week here at UNC that fact still holds true.  So far the doctors have run many tests including MRI's, Ultrasounds, Blood Tests, Urine Tests, and Metabolic Tests.  Every test so far has come back as negative or normal.  This is still good news.  Yesterday our doctor told us that if the last few remaining tests come back negative or normal then we'll either have to assume she is slow in developing and she will simply grow up OR we will be able to determine what might be wrong with her as she continues to age. Basically what this means is, the doctors can't figure out why she has some issues and they have run out of tests.  So the update as far as her overall well being is still, unknown but positive :-).

As far as her everyday accomplishments she is doing awesome!  Joanna and I have been able to feed her bottles to supplement her regular feeding tubes meals.  She still has a weak suck but it is improving as each day goes by.  Her nurse is very excited because when she first met Natalie she looked at her and thought "this baby sadly will always be fed through a tube because of her lack of ability to suck".  However, Natalie takes over half of her food via bottle now and her nurse says that she has never seen such a strong willed baby before.  Natalie is determined to eat and that is great!  She gets tired feeding and rarely makes it through a feeding session without falling asleep but she fights as hard as she can.  Also, she is steadily gaining weight.  She just broke the 6 pound mark.  She is gaining at a normal rate and should continue to do so especially as she is taking the bottle.  Another concern with the doctors are her hips and legs because she was so oddly positioned inside of Joanna.  She was in the breach position but her legs were WAY up around her head.  Therefore, she was so used to having her legs up there that it is hard for her to move her hips and legs down in a normal position.  So today they are going to put some casts on her feet and part of her legs (I think) in hopes of this allowing and forcing her hip muscles to relax and position normally.  We don't know how long the casts will be on though.

Other than these things she is a typical baby girl.  She looks around and stretches and grunts like most 3 week old babies.  She still doesn't cry much but I'm just going to be thankful for that at this point haha.  As far as when she will be able to come home, the doctors told us that when is considered stable and her feeding increases enough then she'll be able to come home.  Well she is now considered "stable" and they started her feeding evaluation on Monday and they said next Monday (the 13th) they will be able to give us a more realistic timeline as to when we can go home with our little gal.

We're thrilled with her progress and hope she continues to exceed all of the doctor's expectations.  She still might have some issues but we are so, so, so happy to have our little girl. Thanks again for all the prayers and kind words. I haven't been able to post many updates because there is only one computer available at the place we are staying and it gets shared between 30 families haha.  I will keep you all posted though :-)


P.S.- The head Neonatologist said that she was the best dressed baby in the NICU.  Mainly because of all the dresses that her Daddy is picking out for her to wear :-)

And sorry for any typos. I'm sleepy haha.