schedule for tomorrow

Tomorrow we go in for Darla Jane's cardiac catheterization.  Here is a link with a little information to help understand what the doctors believe the problem is and how they can fix it. We are hoping they are right and that it is an easy (for them) fix.

We are scheduled to check in at 9:00 AM.  The procedure is set to begin at 10:30. The charts have us staying over night for observation and then should be able to be sent home on Saturday morning.  Prayers, prayers and more prayers for this little girl. Although this seems minor compared to what she has been through, it's still kind of a big deal... to her mama anyways.

*update

I talked with Dr. Mart today.  He told me he had talked to Dr. Day who reviewed Darla Jane's previous cath.  Dr. Day had said he saw some places where collaterals were beginning for form so he feels like that is what we are dealing with.  If that is the case, it should be an easy fix for him.

Not the update you were expecting.

                                    

Instead of checking into the hospital yesterday morning, we were checking temperatures.  And Darla Jane's was 101.  She had a fever earlier in the week but we thought it was long since gone. Nope.  It was back and so I called to talk with the doctors to decide what to do. Anesthesia as well as placing the coils (or plugs) being sick, especially with a fever are very risky. So with a unanimous vote we decided to reschedule.   

Not only does she have a fever, but little miss also has been reunited with her dear friend Mr. McNaselCanula.  Who she really was not very excited to see.  She is needing around a liter to keep her sats up.  I'm not sure if it is because of the illness or her heart, possibly a little of both.  But it's back and will be around until she doesn't need it any more.

We took Darla Jane to the pediatrician to see if we could find the cause of the fever.  Official diagnosis from the doctor himself was that she has a "wicked bad ear infection".  We were given a prescription for Omnicef and were told she would be good to go for her cath which is now rescheduled for March 1st.  I just figure it gives us time to get some more prayers in.

It's been a while and now we're back...

Hello.  Were you starting to miss us?? I thought you might be so we decided to come back.  

Darla Jane had an appointment at the beginning of the month.  Dr. Mart wanted to do an echo on her, un-sedated.  Let's just say, it was UN-successful.  Which also pertained to the whole appointment.  Our little miss is realizing that she DOES NOT like to visit the Dr. or anything that has to do with the Dr.  

After the unsuccessful appointment and because of a concern we had with her tiring when exercising and getting a bit blue in the face we decided that a sedated echo was in order. Sedated echo happened, almost 2 weeks ago.  The echo looked good.  No sign that there was anything causing a problem. Dr. Mart asked us to take her blood oxygen level just after exerting herself, like after climbing the stairs.  I did. And I found the problem.  The average population has a blood oxygen level of 95-100.  Darla Jane's normal is close to 80-85.  When I tested her at the top of the stairs. 43.  43!  I freaked out. Called Nathan.  Asked him if I should have her go up the stairs and test it again. He told me no!  If that's what she was at we shouldn't be "testing her".  We decided to just have her climb the stairs once a day through the weekend and see what numbers we got.  So we did.  The highest she was after exertion was 54.  I called her Dr. last week and told him what we found.  He was concerned (and rightfully so!) and advised we get her into the cath lab within the next week or two.  His prediction was that she developed collateral veins.  Veins that form on their own and take the blood supply away from the places that it really needs to go.   In the lab they will put her under anesthesia, run catheters up her arteries to her heart, inject a dye so they can track where her blood is flowing... then hopefully see the problem and easily fix it.  We are scheduled for the cath lab on February 13th.  What a way to celebrate CHD awareness week right? She's excited about it....

I realized it's been a while since I've updated on Darla Jane.  Which for us we are going with the no news is good news idea.  Darla Jane is becoming more and more independent.  She is now up to 6 steps on her own!
And she is also eating a lot more food!  She still is not a fan of anything little or crunchy, but if you give her a whole piece of pizza or a bowl of spaghetti she will down it.  We are still working through her intolerance to milk.  Darla Jane still is drinking the sensitive formula but we are hoping she will grow out of that.
We are still on oxygen at night...however we were able to go a few nights with no oxygen when we were visiting the Brewers in Oregon.  I guess there is something to be said for living at (or near) sea level.
We have just been enjoying summer with the family.  Oregon, Aspen Grove, camping, Lagoon and Heart Camp...we have to get as much fun in before we start our winter lock down.
We will have another cardiology appointment on the 7th of September which will include a sedated echo.  Prayers for a good report.

it's all cool.

Little Miss had her evaluation from Kids on the Move, an early intervention program. In all the areas she was tested she had a minor delay although not enough for needing help. Except for her motor skills. Laura told us that because she wasn't able to get up on her hand and knees, pull to standing or cruse along the furniture it would probably be a good idea to have a physical therapist come and help her a little bit. It may not be long that she needs it, but they are going to be available to us for as long as she needs, to be walking comfortably. Also as we go along with PT, if we notice that she is not developing in any other area we can easily pick up help there too.
I am sure our little miss will pick things up quickly and show the world what a rock star she is. But it is nice to know, that if she doesn't, that we have the resources available to help her where she may need a little extra help.

Go Darla Jane! Go!

shots

one of the saddest things to see on a little one is band aids, from where I they got shots. Even when they are cute band aids it still makes me sad. Darla Jane had 4 shots, it would have been 6 but we decided to delay them longer so that she won't have as many today. Today was Darla Jane's 12 month check-up.

She is ...21 lbs - 76%!!

27.5 in - 4.5% (little miss)

head circ.18 in - 85%

So the short girl can gain weight! And she's got a Brewer/Colton head...poor thing.

We also were referred to "Kids on the Move". An early intervention program that will come and assess Darla Jane's development in all areas and, if necessary, line her up with the therapist that would best be able to help her. I think that as I answered the questions at the pediatricians office and most of my answers to whether or not she could do the skills on the list were "no" we realized that this might not be a bad idea for Darla Jane. Her assessment is schedule for Friday afternoon.