Thursday, June 14, 2012

Adjusting at home/ Doctor visits

When I sit down to write in the blog, I want to write everything out.   I realize that I don't have time anymore to really do this and feel discouraged that I'm not keeping it up.  I want to remember how things went during this time and how she progressed.  The only time I'm really in front of a computer is when I'm pumping.  With only one hand to type with, it doesn't really work.  I haven't really found a good time slot to sit and type.  I want to enter something every day, but have almost felt so far behind and missed writing so much that it's hard to know where to begin and so I don't type again...  I guess I just need to settle for short posts these days.  I can easily add 5-10 sentences on a facebook status, but when I pull up the blog, 5-10 sentences doesn't seem to be enough.  I feel like I need to write more.  Maybe if I settle for what I can handle right now with my schedule and just post short notes, I'll feel better.  Just sorting out my thoughts...

We've been home for more than a week now and doing well.  She seems to be doing so much better overall.  She's starting to get into better sleep/eat/awake patterns.  Granted it's every 3 hours so I still feel like I get so little done in between.  Oh well, seasons come and go and change before you know it.  This season will be over and then I'll miss it... ok, maybe not, but you know what I mean.  ;o)

I woke up Monday morning the 11th throwing up.  This went on from 7am until 1pm when Samuel started in on the party.  Lowell stayed home to take care of Cayla as I stayed away from her and wore a mask.  I wasn't sure how I'd feel by Tuesday morning when Cayla had 4 appts. at Cleveland Clinic, so Lowell took Tuesday off and went to all her appts with us.  It was good he did.  He got to meet Dr. Gurd and to see Cayla get her cast taken off and a new one put on.  This is her last cast, but it will stay on for 3 weeks.  They also fitted her for her braces and shoes she'll wear as soon as this cast comes off.  I mentioned Cayla's spine to Dr. Gurd and he said he's looked at it and plans to discuss it with us when we get through the club foot casting and on to just braces.  He asked if we'd seen the x-rays of her spine and we hadn't, so he pulled it up on his computer.  He said that a typical spine looks like little rectangles with 2 circles under them.  Like the side view of a child's wagon.  There are supposed to be 2 circles between each vertebrae (you know, I really hate trying to describe stuff I know I'm not getting right, but oh well...) and there is one spot on Cayla's mid to lower spine where it looks like a disc is missing on one side. Well where this is, has caused the 2 vertebrae to touch and almost fuse together, thus causing a fanning out effect on the other side and causing her spine to curve.  This is also where 2 ribs have come out of that same spot and instead of being separated like all the others, are fused together.  I had never seen or heard anything yet about any of this, so it was very interesting to find out.  He said he'd go over what they might be able to do with her spine at another appointment.  So, that will be apparently be next on the list of things to correct on Little Miss Cayla Joy.  We did run her up to 12th floor to get her weighed with no cast on, and she now weighs 8lbs. 15 oz.  :o)  She's doing good at chunking up for surgery.  There's no set weight she needs to be at before her 2nd heart surgery in mid September, just that she steadily gains weight between now and then.  She's doing fine.

We then took her up to see the dietitian/nutritionist.  She increased her intake slowly over the next 2 weeks from 1.75 oz. every 3 hours to 2 oz. every 3 hours.  She doesn't eat much, but she is eating fortified breast milk which is fattening her up pretty good.  I have to add a whole tsp of Similac Advance to every ounce of milk.  I think it sounds like a lot, maybe it's not, but it's really upping her caloric intake. She's not done as well with bottle feeding since we've been home this second time.  She literally just poops out after 25-30 ml of milk and just can't seem to get herself to take anymore.  So the rest is given by the NG tube in her nose.  The first week we were home, it didn't take her long to be able to drink all 45 ml from the bottle.  She still only does bottle feeding every other feeding to give her a chance to rest in between.  It really is hard work for her to bottle feed.  They call it aerobic exercise for her.  Although this afternoon for the first time since we've been home this 2nd time, she took 45 ml in about 5 minutes.  She did spit some up about 45 minutes later.  I don't know.  They aren't really worried how she's getting the milk, just that she's getting it.  So we'll keep working away at it.  She is also able to still breastfeed randomly which is good. 

Our last appts. were back at the Children's Hospital building with the cardiologist and had some blood drawn.  Dr. Erenberg checked her out and said that her heart, incision, and overall appearance looked great.  We will go back in 3 weeks when she gets her last cast off and then will have an echocardiogram and set a date for her heart surgery.  Since her first surgery was so much easier than the expected Norwood, this 2nd surgery, the Glenn (I think that's what they call it), will be more invasive and involved than her 1st, where usually it's not as bad as the 1st.  But the success rate is still around 95% for this one, so we'll see.  Right now and for the next few months, she shouldn't have any major health issues and be a somewhat normal little baby girl.  We did take her to church for the first time last Sunday which was so exciting to show my sweet little girl off.  :o)  She did great.  Right now the worst thing she's dealing with is a really intense diaper rash that we hope to have the pediatrician give us a prescription for something stronger tomorrow.  It looks bruised and slightly bleeding.  Dr. Erenberg gave us a prescription yesterday, but it's not working, so we're hoping Dr. El Gammal can give us something that will. 

In another post, I'll have to write about Dr. Freedman the neurologist and share his letter he sent us.  He is the first doctor to give us a complete report that covers all diagnoses from all specialty doctors in one report.  He was very thorough and gave us many words to look up and see what they mean to know exactly what Cayla is up against.  I've been wanting a report like this to really be able to see what all is really going on with her now that they've had time to do their reports.  He is also the first one to mention her nose again, since Dr. Rajabi mentioned it back a couple of months ago, about it not having a tip or something like that.  So far she looks pretty cute with her nose the way it is, but maybe she'll grow and it won't... I don't know.  Just one more thing to have to look at.

Tomorrow, Thursday, I have 2 appointments.  The first is my 6 week check-up (even though it's now 7 weeks) with Dr. Rajabi to tell me I need to sleep and drink more... :o}  He doesn't usually do appts. past delivery since he's a fetal care specialist OB/GYN.  But since my OB/GYN here in Ashtabula got fired, I mean, is pursuing other interests, I've been told to finish this one up with Dr. Rajabi and find a new one in town.  They say the one that's replaced her is really good, but I don't think I really need one any time soon at this time, so that can wait.  My 2nd appt. is at CC with Dr. Magnuson, another surgeon.  This is the surgeon that is going to operate on her little bottom in November.  This is the first appt. we've had about this, so we'll see how bad it is and what they can do.  You know, Cayla didn't have to have the Norwood heart surgery since God placed her aorta on the "wrong" side of her heart, but she sure seems to be making up for it with all these other anomalies going on.  I believe she has been clinically diagnosed with the DiGeorge Syndrome, which is what is possibly behind all the issues she has.  Who knows?

Next week, there's no Tuesday casting, but I think Thursday is Cayla's 2 month checkup with her pediatrician.  She will get vaccinations then too.  Not sure what she really needs or not with her heart and weaker immune system.  Still researching this.  Any input would be great!  I know many have opinions about immunizations, but I feel like I don't have a choice since I don't want to risk anything with her.  I know some vaccinations lead to autism and other problems, I just need to look it all up and figure it out.

Well, dishes didn't get done, or laundry, or washing of syringes, etc. because I've been writing here.  So, maybe I can just add some quick notes here and there over the next weeks.  As far as a prayer request right now, it's my time in God's Word.  I have to admit that it gets pushed aside for "more important" things.  I do pray for people and situations as I hear about them and whenever God brings them to mind, but I need much more than that.  I am trying to work up a schedule to make sure everything gets done that I want to get done.  Also, I saw today a post on fb that a little hypoplastic left heart syndrome baby that Cael's mom knows, died yesterday, I believe.  I cried and went and got Cayla and just held her.  I am so thankful for all God's done in her life already.  She has many hurdles to cross, but they don't appear life-threatening.  God has worked great things out for her and I praise Him for all He's done with her life so far.   Thanks for the prayers and I look forward to posting some more much shorter posts.  I'm off to feed Cayla again. 

1 comment:

  1. We're praying for you guys and sweet little Cayla often, Linda! You're doing such a great job being her mommy! <3 you!

    Kari & Aaron Birchler