My Sweet Evelyn.

Yesterday was a truly emotional day for me. As you know, if you've been reading, that baby Evie isn't gaining weight. She is teeny for her age and I've been worried for about 6 weeks now. Well, yesterday was her big day.

We visited the doctor and I was prepared with questions and research and had my brave face on knowing that I may have to fight for answers. See, I wasn't going home with a simple, "she's just small", without a reason, a test, a diagnosis, something. Of course the nurse calls us back and does all the normal baby check things. Weight, height, head circumference and then a plethora of questions. She writes down all my concerns, charts Evie's growth and gets quiet. Next it's the Dr.'s turn. Dr. Ulrich is normally running late, today was no different. He comes in and asks why we were visiting.

I tell him my worries, I think it went something like this (holding back tears): My baby, she's not growing. She's four months and still in 0-3 clothes, size 1 diapers and they are both too big on her. She smiles, she looks at me, she wants to be strong and hold herself up. She spends time on her tummy but can't sustain very long. She eats a lot, 60z of milk every 4 hours, cereal twice a day. I don't know what to do. My hair is falling out and I cry about this. I am worried."

He is looking at her growth chart and says to me, "you're right, she's stopped growing". Showing me the growth chart he explains that at birth Evie was in the 90% and she is now between 5-10% (he said probably about 7%) for her age. He then explains if she would have stayed on a healthy weight gain since birth she should be about 75%. Her head and length are normal. He then starts testing some other things. He checks out her soft spot, looks good. Presses her belly, she farts, we both giggle. Her strength isn't where is wants it. He then checks her reflexes and gets very quiet.

He looks at me and says, "I think we need to test her for a few things." My heart drops. I am happy he is recognizing that there is an issue but I am again so scared. "We're growing to draw her blood and see how that comes out. We'll do a CBC (blood cell count), an ANA (to see if there is inflammation somewhere we can't see or feel), a thyroid test, and a few others." Gulp, "Okay". It was all I could muster out. "Then," he says, "I am going to have to see a specialized Pediatrician. Today. He works with babies just like Evie who are either premature or not growing as we expect. He is a great doctor and he'll know best what our plan should be". "Okay", I say again.

I then asked the question I really didn't want to know, "What could be causing this?". He starts, "Well, it could be thyroid, milk allergy, reflux, or something a bit more serious." Like what? "Cystic Fibrosis or a heart issue". I feel sick and he sees this. "By listening to her heart I've pretty much ruled out a heart issue. Cystic Fibrosis is rare, 1-3000 babies are born with it". He then goes on to explain to me that CF isn't something he is going to test for right now because there are so many other things he wants to rule out first but that Dr. Elaghaly (pronouced Al-leigh) may run more tests.


Fast forward 2 hours (after Evie gets her blood drawn and smiles during the entire thing, I have a complete meltdown in the bathroom, I call Bill and try to tell him what is going on and I drink a coffee so fast it makes me ill). I am now sitting in the waiting room of another Dr. The nurse comes and gets me and brings me into the room. Again, asks me a million and two questions. I get Evie naked and she runs a few tests. She informs me that Evie has been running a low-grade fever for her last 3 appointments and although she doesn't feel warm to us something is causing this fever. She then tests to see if there is the proper amount of O2 in her system. She passes!

The doctor comes in and gets right to business. He listens to her heart and lungs. Asks me if she is always congested (she has a cold) and tests her reflexes. He asks me something I knew would come up but was hoping I was wrong, "Does anyone in your family have any problems?". I explain to him that my cousin has spineabifida, my mom has this my dad's side has that and I had cancer. He then flat out asks me, "anyone have CF?". Not that I know of. He tells me that he is going to have to run some urine tests.

He places a catheter in little Evie and takes some urine from her. He tells me to hold tight, get a bottle ready and he wants to see her eat. So I get her dressed, make a bottle and we feed Evie. He thinks she is latching great, eating fine and her little bit of congestion doesn't seem to be slowing her down. He watches her burp and agrees we get a little more than normal out when she burps but that it isn't anything to be super concerned about. He leaves. I cry a little but hold myself together.

He comes in. All the initial tests have come back (there are still a few out) and her liver enzymes are high and her glucose is low. He tells me, "I think she is malnourished." I gave him a look and said, "I feed her. Six ounces. Every 4 hours."

He explains to me that he isn't concerned I am not feeding her. He is more concerned that she is not absorbing the nutrients in the milk. Basically it's going from mouth to diaper with little being taking in. This explains the super full diapers, the concentrated urine and her size. He puts her on this UBER expensive formula and tells me we need to feed her every 2 hours and wake her at night to eat. He tells me he doesn't expect that she will gain a huge amount of weight right away but that he would take 8 0z. (Yeah, me too, that's about all she's gained in 9 weeks)

So although we are still without firm answers as to why she isn't absorbing or whether it's something more serious or not, we have an answer. I purchased two cans of this crazy formula and then read that it's ONE DAY worth of bottles. Wow, good thing I love this baby because 1 month of formula is almost $1000! We started the regiment last night and at first I think she loved eating every two hours but after about the 4th feeding she was refusing to take her bottle. I called this morning and they said, to first try pushing it out to 3 hours and if that doesn't work lower it to 4 oz. but every 2 hours again.

Please say a prayer her tests for CF come back negative. This is an awful disease and I don't want her to have to deal with it. Please, also pray, that she gains weight and grows out of this deficiency. I know God has this all under control.