Rose update, 6/18

Getting an EKG - so cooperative!

Completely pooped on the exam table :(



We had our second visit to the GI clinic today, and were able to get some results from all the tests last week.  Basically, all the extra tests/procedures came back negative for the liver conditions the GI doc was looking for (Alagille's Syndrome & Hemochromatosis).  So that was great.  We had more bloodwork done, and it came back showing that her liver enzyme levels were down, but still not within normal limits.  The doctor ordered additional bloodwork this time around, as well as ordered us to collect a stool sample to bring in... I bet you've never tried to collect a stool sample from a 10-week-old.  *TMI Warning* We can't scrape it directly off the inside of a disposable diaper, so we can either put her diaper on inside out, or put a piece of plastic wrap lining the diaper and collect it from there.  Woohoo!  I tried the inside out diaper, and she peed right out of it in about 5 minutes.  So I tried to finagle a couple of cloth diapers out of some burp cloth/diapers that we have.  That didn't last long.  So now I'm waiting for her to poop into the plastic wrap in her diaper...  Hopefully this next round of tests will give us some good answers.

Unfortunately, she had not gained much weight since her last GI appointment, which is extremely frustrating.  On Friday at the Cardiologist she weighed over 8 lbs, so I was so happy (I was also happy because they didn't have to sedate her and do an Echo, thank god).  But she's back down under 8 again.  I told the dr. and nutritionist that she didn't get quite as much extra formula this weekend, and we're sure that's why she didn't gain the weight.  So now we have to be extremely compliant with giving her milk fortified with formula, or extra formula after she nurses.  Also, we will be giving her a teaspoon of vegetable oil throughout the course of the day, for extra fat and calories.  Funny thing is that we can do olive oil, so I like to think that we're already giving her a good palate.  Never too early. :)

I'm finally having a hard time dealing with this all - at first it was okay and we weren't stressed about it, but it caught up to me.  It's just something we're dealing with and that we all have to get used to.

We also had Rose's baptism on Sunday which was very nice.  It was great to visit with the family afterwards back at our house, and have such wonderful godparents for Rose - Aunt Nancy and Uncle Jim!

So for now, that's what's up with my tiny girl!

So happy!

Hanging out on the porch with Mommy.

Rose Update

So, I got a call back from the nurse.  Most of Rose's tests came back normal (Lipase, Thyroid, CBC, Electrolytes, regular Iron, a couple others), but a couple did not.  Her Liver Function tests showed elevated ALT and AST.  Normal levels are 3-45 and 23-65, respectively; Rose's levels were 165 and 135.  Also, her Ferritin level (stored Iron, different from the other iron level... I'm still researching that one...) was elevated to 487, 62-250 is normal.  Because of these results, we were referred to the GI clinic at Children's to get some more answers. 

We had her appointment at the Children's on Friday.  Following that visit, no definitive answers yet. The GI doc doesn't seem to think it's hemochromatosis (something Rose's pediatrician thought it might be), but he does think there is definitely something going on. He reassured us, however, that though her levels were high for iron and liver enzymes, they weren't through the roof, so it's not as bad as we might have anticipated. But like I said, no answers yet. He ordered basically every test in the book for the next two weeks to rule things out and hopefully get some more symptoms or results to narrow down what it might be. Here's what he ordered:


> More labs - we got the blood drawn Friday, so that's done.

> Spine xray - done Friday, too. Apparently there is a liver condition that presents with odd-shaped vertebrae, so that's what this was for.

> Cardiologist then possibly an Echocardiogram - Some liver conditions have heart symptoms.  Scheduled for this coming Friday.

> Eye exam - Some liver condition has a weird eye issue where a ring of gold will show around the cornea? Who knows.  Waiting to hear back from the clinic to schedule this...

> Liver ultrasound. Makes the most sense why they would order this one.  Scheduled for Thursday.

So we go back to the GI doc on the 18th for results. A nutrionist talked to us and gave a very specific recipe for fortifying the breast milk with formula to get a specific calorie count, as opposed to just giving her an ounce with each feeding. Otherwise, we're basically just doing what we're doing, and aren't supposed to change anything until we hear otherwise. However, a huge bonus was that she gained 5 ounces since Tuesday, so obviously the supplementing is working! The doctor was optimistic particularly about that, because it means her body can overcome whatever is going on, just needs to have enough calories coming in.
 
We're definitely ready for answers, but in the meantime I really do have the happiest little girl to enjoy!

Here we go again...

So, two and a half years ago, I was dealing with a baby whose growth was way lower than average, and we were worried something was wrong.  Welp, it's happening again.  And this time, it's a little more worrisome.  Resources say that breastfed babies should just about double their weight by the time they are 3-4 months old, and that they should gain about 4-5 ounces per week.  That would mean that since Rose came home from the hospital a little under 7 pounds, that she should have gained at least 3 or 4 pounds by now.  Or not.  At her 8 week appointment today, she weighed 7 pounds 9 ounces :(.  The doctor didn't beat around the bush this time, and full out said she was concerned.  However, she's close to 22 inches long, and her head is in the 25% for her age, so the doctor said if something systemic was wrong with her growth, that it would affect ALL of her growth, not just her weight.  Also, everything else with her is perfectly on track (babbling, cooing, eye contact/tracking, head control), so the doctor is still optimistic. 

I, however, was upset in the appointment (first time I ever cried in a doctor's office...), because it's my milk that's not making her gain weight.  And it's surprising because Rose is a serious champ with nursing.  We all joked with Preston that I produced skim milk... apparently with Rose it's super skim.  The doctor wants us to give Rose an ounce of formula at each feeding, after she's done nursing, so that she gets some guaranteed calories into her system.  Also, she had blood drawn at her appointment to run tests to rule out anything else that might be going on.  I have to tell you, it was a rough couple of hours!  I had Preston in his stroller so he was contained while I handled Rose... Well, he can stand up while buckled into the umbrella stroller, so he would stand and drag the thing behind him trying to move around (in any other setting, it would've been comical).  Then, he dropped a little toy car that he had with him, and the phlebotomist almost tripped over it.  Then, Rose (of course) was screaming hysterically as her blood was being drawn, and Preston was "sympathy crying" and holding his ears.  I couldn't manage Preston because I was holding Rose and trying to keep her from squirming.  It was pretty traumatic for all of us.

I count my blessings that being tiny is the only "issue" my children have (so far...), but it still is tough when there isn't much that I can do about it, all the while having people ask me "do they get enough to eat?" "were they preemies?" "oh, you should just do formula."  I'm just crossing my fingers that there really isn't something more going on with my little girl.

In other news, I'm back at work part-time through June.  It sort of sucks, but at the same time I was ready to get out of the house and into a better routine.  Me and the kids were kind of playing each day by ear, and not really on a schedule, and I've realized we're not at our bests when that is the case.  Preston and I get crabby at each other (he's just as stubborn as I am.  I swear it's like looking into a mirror when I see those eyebrows go all furrowed...).  I love my children to death, but I give serious props to full-time stay-at-home parents, as I have found out I'm not good at it.  Part-time sure.  Which is why I think June is going to work out really well - a good balance for all of us.

Now I'm off to get angry at the news, while I watch Wisconsin fail.  Again.