GI doc and Pediatric Surgeon

"Do you ever feel like a plastic bag, drifting through the wind wanting to start again? Do you ever feel, feel so paper thin, like a house of cards, one blow from caving in? Do you ever feel already buried deep, 6 feet under screams and no one seems to hear a thing? Do you know that there's still a chance for you? Cause there's a spark in you, you've just got to ignite the light and let it shine. Just own the night, like the 4th of July, cause baby you're a firework, come on show them what you're worth. You don't have to feel like a wasted space, your original, cannot be replaced. If you only knew what the future holds, after a hurricane comes a rainbow. Maybe your reason why all the doors are closed, so you could open one that leads you to the perfect road. Like a lighting bolt, your heart with blow and when it's time you'll know. You've just got to ignite the light and let it shine. Just own the night like the 4th of July"

Katy Perry

I absolutely hate blogging when I don't have pictures to post at the same time, but oh well. The camera is downstairs and I'm too worn out to go down there. sorry!

Yesterday I took Kaleb by myself to see his GI doctor. The reason I added in there that I was by myself is because this is the first appointment where we didn't both go. I'm not upset about that, I know these are going to be happening more often now that I go back to work on FRIDAY (ewww). Kaleb is a really high needs baby and that makes appointments alone very hard. Kaleb began screaming as soon as we walked in the door. The secretary made a comment about Kaleb not being happy today, made a sad face, and then closed the window to the desk so she didn't have to hear it. I was early so I decided to go ahead and feed him, but of course the nurse came early to get us. I get up, with a baby laying in my arms, I put the bottle against my chin to hold it in his mouth all while pushing the stroller as well. The nurse asks if I need help, of course I say I'm just fine [dumb idea]. A few seconds later Kaleb spits the bottle out and spits formula all over my face. The nurse looked disgusted and said, "Ohhh my". Clearly she didn't have children. I've realized that after two children we have lost all sense of humility. At an appointment last week we were in a waiting room of MANY families, we thought Kaleb pooped so Dennis picked him up and held his butt to his nose for quite a while. I just remember thinking we would have never done that with Nolan but when you're a parent you understand those things and I even feel a connection with other parents when I see them doing odd things like that in public.

Back to the appointment. After Kaleb spit on me, I realized he also had a pretty huge shit in his pants. [Great]. The nurse told me I could change him in the room and when I did she looked grossed out. Yep she definitely doesn't have kids. Then she went to measure his head and got grossed out by the dry skin on his head and asked what it was and if the pediatrician had seen it. I just thought it was cradle cap so of course I got freaked out that some nurse is showing concern over this [what the hell is on my baby's head??]. When the doctor came in he said, "Oh it looks like Kaleb has some cradle cap, do this, this, and that and it will get rid of it for good". Well if there was any doubt that the nurse didn't have children, now we know for sure she doesn't. I would probably be willing to bet she doesn't even have a nursing degree either.

The doctor did some things to Kaleb and said he thinks that he has anal stenosis. I am so tired of hearing about some type of stenosis or another. Stenosis basically means something is constricted. That would then cause pain when trying to poop. Great! I have an answer! The doctor sent us straight over to a pediatric surgeon to have a procedure done (called "dilating"). I just knew it would be positive, we would get our answer, and fix it. No such luck. After a painful procedure for Kaleb and traumatizing for me (having to watch that...yuck) the surgeon said he doesn't think Kaleb has anal stenosis. Damn you. I wanted to slap him. He had a small concern that maybe he couldn't find it so we are being sent to get an ultrasound of Kaleb's ass, which I guess will be next week? Even though we didn't find anal stenosis right away he did manage to tell me Kaleb has an umbilical hernia and fluid around his left testicle. Thanks doc. I came here for ONE purpose and now you are telling me there are even more problems with my poor baby. Not to mention he also looked sort of frustrated that our cardiologist isn't downtown next door to the children's hospital. He feels that all of our doctors should be in the same area. Most of them are, but that's the NICU's doing when they referred us to this cardiac doctor, which I'm pretty sure still sends kids to the children's hospital for any surgeries needed. On top of everything else this surgeon told me my son has plagiocephaly (flatness to his skull) and torticolis and told me how to treat those conditions. Thanks...I already know.

The only enjoyable experience that I had at the surgeon's office was being in the waiting room with a couple and their 6 week old baby. The dad was completely annoying but I made a mommy connection. I pulled out our pampers diaper holder thingy ma-bob (I'm sure that's the correct name for it) and the other mommy said "Oh hunny look she has our diaper holder thingy ma-bob". Oh my goodness! We have the same diaper holder thingy ma-bob...instant connection! I could tell they were new parents because they had humility. Their daughter kept crapping and they had about a 10 minute debate about where they should change her diaper. "Should we ask for the bathroom?" "Should we go out to the car?" "There's a private little room attached to the waiting room we could do it there". "Who's going to change her??" They decided on the private little room next to the waiting room which was open and I could hear the dad talking so loudly about his daughters poop and farting. If it were me I probably would have just changed Kaleb's diaper on one of those chairs or the table holding the magazines in the middle of the waiting room, it would have been an excellent changing table. They were nice though. We talked about having the same carriers and other random parent things.

Lets talk about Pompe's disease now...alright? You should ask me what the results of Kaleb's blood test were. Guess what? I don't know! They were supposed to come in on Monday, I've called daily to our genetic counselor with no return call. Last night Dennis emailed her and what do you know...she emailed us back this morning. She said there was some issue with insurance so now we won't get the results back until NEXT Monday. Well that's nice, do you think you could have called us to tell us that? This isn't like a blood test to see what your iron levels are. Sort of important. I've even been having nightmares about the results of the test (2 exactly), it's totally messing with my mind.

On top of everything else I'm still having issues with anemia and severe hot flashes. I'm embarrassed to go out in public because I'm going to be sweating and people are going to think I'm weird. I went shopping last weekend and at the register I had a hot flash, I was sure the cashier thought I had somehow stolen something or had some type of shenanigans going on. I've had hot flashes since the day I came back from the hospital. I told my OB about it so he tested my thyroid, yet it's normal. It's not normal to wake up with your pillow SOAKED every morning. I normally have to turn my pillow several times throughout the night because one side will get completely wet so I have to turn it over (yeah...gross...so what?). I can't wear my newly colored hair down anymore because it gets completely soaked in a 15 minute period, so gross. And I am so pissed. What the hell is going on with me? Not to mention the anemia crap is getting worse. I almost needed a blood transfusion in the hospital and my levels haven't gotten much better even with iron supplements. And now I'm having other issues that make anemia even worse, takes me back to right before my Endo surgery in 2005. I called my nurse this morning, her voice mail she has 48 hours to call people back. Screw that. Call me back! I get dizzy often and really shaky. I have no clue what's going on with me, I know I need to take care of myself but it is so hard to do with a toddler and a newborn who is not only colicky but has so many medical appointments. I do workout on my Wii Fit a couple times a week and I try to eat as healthy as I can but it's still really hard.

Sorry for all of the "blah-ness" in today's post...just going through a lot I guess. I know we are doing everything we can for Kaleb and doing the best that we know how to at this point in time. Oh and sorry for the few random cuss words...it feels like a good day to cuss. :)

Some good news....

I have lost 36 pounds since I had Kaleb, just 8 weeks ago!

Too many...

I've come to the conclusion that baby K has way too many doctors. At this point some of them are all running together and over lapping each other. One doctor will say one thing, and the other says not to do that one thing. I don't know who to listen to anymore. I am helplessly confused at times. Baby K met with his geneticist last Friday, it went alright I guess. After the appointment we were in the waiting area getting ready to leave and this lady came out of some room and asked excitedly if I was Erin. I said yes and she introduced herself as Cathy. Cathy is a lady I had been talking to on the phone recently to set up Kaleb's developmental assessment at the NICU follow up clinic. Why is she at the geneticist's office? Monday came around and we went to the NICU follow up clinic for his developmental assessment. We met with Cathy who took us back to a room and we met Lisa, occupational therapist. She said that there was a physical therapist, ARNP, and our geneticist who would all be with us during this evaluation. Why was my geneticist coming here? Apparently my geneticist just started up the NICU follow up clinic. This entire meeting was extremely confusing and aggravating. There were four professionals in the room with us and they were all talking at the same time to us. The PT was trying to teach me infant massage while my geneticist is telling me about something else, and then the ARNP is asking me medical questions about my son...you have all of his charts...READ them. I told the PT that Kaleb was already in PT, she asked with who and I told her the name of his therapist. She continues to tell me how she works with his therapist and will talk to her about this assessment later on. So why am I here again if you are associated with the PT we are already doing?? Kaleb cries a lot...well maybe not a lot...maybe more like ALL OF THE TIME. So of course once they started messing with him he became upset. At the end of the assessment I asked how I could get a copy of their report, no one knew. Then the PT asked if I wanted her to go over their assessment with us...ugh don't you think that would be important? So instead of going over the actual assessment she just tells us that my son is only working on a level consistent with a 16-20 day old infant, when he is really 7 weeks old. How did you come to that conclusion? Seriously? They told me not to worry because when a baby is fussy they don't score very well. So then why are you assessing him?

Other than a whole big mess of confusion Kaleb got his blood test for Pompe's disease on Monday. Our geneticist told us the results should be in within 7 days and to call our genetic counselor for the results, they can't call us when they get those VERY IMPORTANT results? Whatever.

Can you tell I'm being cynical?

On Tuesday we met with our counselor, I cannot stand counseling. But I must say this lady is amazing, I absolutely adore her. It's less like counseling and more like a family member. She has children with special needs which is why we were paired with her. It's SO nice to talk to someone face to face that has been through such similar experiences with two of her own children. Her insight is that of a parent who has been through scary surgeries, unknowns, and being around friends and family who do not understand. She has great tips and talks to us about her experience. I hate those counseling sessions where all the counselor says is "I hear you saying that hurt you"..."how does that make you feel?". Ugh, puke. I look forward to seeing her every week, so glad I went through with the counseling.

On Wednesday we went to see Kaleb's neuro-surgeon. He basically said that Kaleb's head is REALLY flat, actually his head is flatter than 90% of children. That's just great. But you know what is EVEN better?? Apparently most insurances do not cover helmets, and therefore parents normally have to pay $2000 for the treatment. (update: it looks like Dennis' insurance may actually pay for this treatment). I really liked our neuro-surgeon. He is from Dallas and graduated from UT and is extremely nice. He actually sent us an email from his personal email with an attachment of his note and assessment of Kaleb that went into the chart. What a great idea, more doctors should do this. It would definitely help parents that really need all medical records for their kids due to their kids having so many specialists. Anyways, more than likely Kaleb will not see him again and we need to decide by 6 months of age if we want to do the helmet, if so we contact a guy that our doctor works with to do the molding and follow up appointments.

Next week Kaleb has his OT evaluation and then I go back to work on Friday. Oh and we just found out today that a spot came open for Kaleb at UCP (special needs school). We were not going to be able to get Kaleb in there until June but one of the infants left the program so he can start next week when I go back to work, hooray! Kaleb can get all of his therapies there and they have experience with children with special needs and medical issues.

I've got to get off of here and get to bed. Kaleb is finally sleeping, which is very rare for him. I've gotten very few hours of sleep in the past 48 hours, Kaleb has come to the realization that he just does not want to sleep if we are not holding him. He has also been screaming in pain again and we cannot figure out what the problem is. Thank goodness for all of Dennis' help this week. I would have gone mad if he wouldn't have helped out so much!

PT and Baby K's faves

This afternoon we had our first physical therapy appointment downtown near the children's hospital. Kaleb has been referred for weekly PT due to Torticollis (he has right torticollis). Basically, Kaleb's muscles on his right side of his neck are really tight and pulling his head to the right side. Kaleb's therapist's name is Kendell and she is pretty great. Our sessions are 30 minutes long where Kendell does exercises with Kaleb and then teaches us how to do those at home. In case you don't know Kaleb as well as some, he hates most things. PT is no different. He screamed at the top of his lungs throughout the entire session. Kendell said she is going to work on some newborn massage techniques with us next week to see if that will help calm him down, because at this point he hates anything that has ever comforted a baby...at this point I'm willing to try anything. On top of Kaleb's feet exercises that we do during diaper changes (well most of them anyway) we also now have other exercises to do, diaper changes are going to start taking a very long time. :) Anyways, Kendell seems positive that Kaleb's torticollis will easily be treated with weekly PT.

We didn't have any other doctor appointments today, hooray! We did however speak to the nurses at our Pediatrician's office and the nurses at my OB's office. Kaleb finally got authorized to see his neuro-surgeon which we scheduled for next week. Then I got blood test results back from my OB telling me that my iron levels have gotten worse (I almost needed a blood transfusion after Kaleb's birth) and that my thyroid levels are just fine. That might seem great to most, but I was sort of hoping that something was wrong with my thyroid. I know it sounds terrible but it would explain my insane hot flashes and my inability to ever produce enough milk to feed my children (can you tell this really bothers me?). But nope, my thyroid is just fine. So yet again I feel like a complete idiot because I havent been able to breastfeed my kids, FAIL! I guess I'll get over it at some point, but it is really annoying.

Kaleb has definitely shown his personality in the past 6 weeks. 

Here are some of his likes and dislikes (mostly dislikes). 

--> K loves to eat, if he could eat every hour he would (and sometimes does)

--> K  likes to be swaddled very tight and put in his auto bouncer although this doesn't always work

--> K sleeps the best at night, sometimes up to 6 hours at a time. 

--> K very rarely sleeps during the day

--> K likes to be held, mostly with his head arched back

--> K snores anytime he falls asleep, loudly. 

--> K hates car rides, if it's anywhere near his eating time

--> K hates to swing

--> K sometimes like his pacifier

--> K cries for several hours a day, usually he gets so upset he forgets to breath and we have to blow in his face for him to catch his breath. 

--> K seems to do better on days we have multiple appointments, maybe he likes to get out of the house

--> K doesn't like to rock, be sung to, be held, be swaddled, be bounced, or anything if it is anywhere near eating time. Don't mess with his feeding times! 

--> K likes to smile quite a bit which makes everything in the world better

--> K hates bath time and diaper changing time 

--> K is very particular about everything in his daily life and has such a strong personality. I just know it will help get him through the difficult times. 

I ♥ you baby K

Pompe's Disease, GERD, and Milk Protein Allergy

I came to win, to fight, to conquer, to thrive 

I came to win, to survive, to prosper, to rise 

to fly 

I am finally ready to blog about our appointments on Monday...they took a lot out of us and I haven't really wanted to talk about it with anyone. But here I am-- ready to move on, blog about it, and choose to have a positive attitude.

Dr. Barlow
Cardiologist
Monday morning we went to Dr. Barlow's new office which is MUCH closer to our home and we like the office MUCH better. Every cardiologist appointment begins with a quick EKG by one of the nurses. Then we go to the ultrasound room where Dr. Barlow completes an echo-cardiogram on Kaleb. This wasn't really a problem the first month because Kaleb was sleeping all of the time, but this time around Kaleb has been crying literally for almost an entire week straight and very rarely sleeps. He did pretty well during the test until the end but was mostly able to be calmed down by his pacifier. Dr. Barlow asked us if any doctors had suspected Kaleb having something called Pompe disease. We said no and asked about it. He said that Kaleb's EKG showed a short PR interval (one of the electrical currents in his heart) which is a sign of Pompe's disease. He then explained that Kaleb had other signs of the disease and wanted our geneticist to test him for it. He told us that the disease causes the heart to grow thicker and thicker and the only way to fix it is a heart transplant. Dr. Barlow did not tell us much else about it and repeatedly reminded us that he is not saying Kaleb has it but just to check it. I didn't understand Dr. Barlow's hesitance to talk much about the disease until we went home and read about it-- infantile onset normally results in most babies not living to see their first birthday-- GASP. Not to mention it doesn't only affect the heart muscle, but the rest of the muscles in the body as well. We thought we were past the possible fatal disorders and diseases. Dr. Barlow said he would call our geneticist to talk to her about his concerns and make sure she gets the testing ordered when we meet with her next week. Other heart issues-- All babies are born with a PDA, which is an extra valve in the heart which closes up a few days after birth. Kaleb's never did. During the echo the doctor said that he couldn't see the PDA anymore (finally! success!) but then he moved the wand basically to Kaleb's throat and of course it was still there. We have to go back when Kaleb turns 2 months old and if it is still there at that point Kaleb will need surgery to close it, FAIL! Also, Kaleb still has his ASD, which is a hole in his heart. This is the least of everyone's worries, if it isn't closed up by the time he is 4 or 5 years old he will need surgery to close it but most of the time these holes close themselves up. Oh and on top of all of that Kaleb is missing his Right Superior Vena Cava (SVC). Apparently this is a major part of our hearts, while he was in the NICU the cardiologists noted that he did not have this SVC but during our first appointment with Dr. Barlow he thought he saw a very small one. Well this time around, there wasn't one. It looks like Kaleb's heart has completely re-worked itself without the right SVC being there. At this point everything is working like it should by using the left SVC to pump blood, I'm sure this will be a bigger issue later on but right now not a huge concern.

Monday evening I was pretty upset, I know at this point not to worry so much over possibilities and unknowns but it's really hard for any parent to do. The thought of losing your child is unexplainable and most parents never have to know what that feels like, but we do. Tuesday morning Dr. Barlow called me and told me he had been doing some research since he saw us yesterday and found some research that links children that have a short PR interval with a missing right SVC. Therefore, the short PR interval may not be linked to possible Pompe's disease in Kaleb. However, he was only able to find this in two children...which in the world of rare disorders and diseases is actually a lot. He still wants Kaleb tested because if we don't and Kaleb does have Pompe's disease then there is basically not going to be anything anyone can do to fix it. So hopefully Kaleb's missing right SVC is causing his short PR interval and NOT Pompe's (damn you Pompe).

I must say, I have so much respect for Dr. Barlow. He listens, asks questions about all of Kaleb's conditions, funny at appropriate times, down to earth, and comforting. He's already called our Geneticist and is just waiting for her to call him back.

Dr. Peppy
OB
This obviously isn't a doctor for Kaleb but I just wanted to post this here so I can remember in many years what an amazing man Dr. Peppy is. Dennis and I are so thankful for having found him, he truly was a rock through my entire pregnancy and was always there for us. He always gives me hugs, holds my hand, and on Monday actually said "love ya" to me and called me a friend. His nurses are amazing as well and know us by our first names. This was my last OB appointment so I won't see Dr. Peppy until my annual this year, which I look forward to because these people are amazing. He has been the only professional who hasn't made me feel nuts for not being able to breastfeed or even pump as much as I could. He knows the stress I am under and when I asked him about me possibly having post partum depression he told me absolutely no way and it is due to all of the things we are going through right now. He made me feel completely not crazy. I've been pumping milk for Kaleb but have always struggled with low supply (even with Nolan) so when I told him Kaleb only gets about 4oz of milk a day from me, Dr. Peppy told me I could stop doing that because that is just causing more stress and depression. It was almost like I needed someones permission to stop. It was amazing the crap I would put myself through just for a mere 4 oz a day, I have been much happier since I stopped pumping. I have more time for other, more important things now!

Dr. Marcus
Pediatrician
Monday afternoon we took Kaleb for his one month well-child check up. Kaleb had just been in the office to see Dr. Marcus 9 days prior to this appointment when the doctor told us to take Kaleb to the ER due to projectile vomiting. Apparently during those 9 days Kaleb ONLY gained a damn ounce. Dr. Marcus was worried about this but believes it has been caused by GERD (reflux) and Kaleb having a milk protein allergy. The doctor checked for a poopy diaper to check it for blood (that you can't see) and we remembered we had one in the car from Kaleb pooping right before the visit (yeah, being a parent is gross at times okay? shoot me!) so Dennis ran and got the damn poop and what do you know, the test showed a large amount of blood in the poop (THAT YOU CANT SEE...I wasn't just letting my child bleed okay?). His poor intestines are being attacked-- milk protein allergy. Not to mention the terrible rash over his entire body, poor thing. Kaleb was put on a new formula (which is basically double the price of normal formula, Alimentum) and was given 9 days to put on weight. If Kaleb has not put on an adequate amount of weight when we go back in 9 days then he will have to go to the hospital and have a G tube (feeding tube) put in so that he can gain weight. Once we got home and started the new formula it was a HUGE difference, and at some feedings Kaleb didn't even spit up at all (he is also on reflux medication now) and the rash was already looking better, oh and that damn colic that was making us do crazy things (like putting him in the stroller and walking up and down the street at 1am and when that didn't work rolling the stroller back and forth over our brick laid driveway to see if the bumps helped him stop crying...it didn't) is FINALLY better. We are all sleeping a little better and not ready to pull our hair out, thank goodness. Things were going well then he started spitting up again and the rash is back. He isn't spitting up AS MUCH, but still enough that it is sometimes concerning if he just spit up all of his food that he just had. He has also gradually been more and more fussy again. Dennis tried to weigh Kaleb last night on our baby scale at home last night but Kaleb wouldn't hold still, it looked as though he may have gained a few ounces already so I'm hopeful still! On top of everything else Dr. Marcus gave us a prescription for physical therapy already for Kaleb and diagnosed him with Torticolis (the muscles in his next are shorter on one side so they pull his head to that side which makes it hard for him to hold his head any other way but to the side). Apparently this is emergency physical therapy so we will be getting in soon with Arnold Palmer hospital for that to start soon. Also, we got a referral to a neurosurgeon for Kaleb due to an abnormally shaped skull, I'm telling ya...the doctors just keep piling up. A neurosurgeon....REALLY? Anything for my little man though...his poor skull!

And then the next day we had to go back to Dr. Marcus for Nolan's 18 month check up...we've really got to coordinate appointments better! Nolan is fine and perfectly healthy and right on track for development. She wants him to have another hearing test due to him having some speech limits, but that's it! So nice to have an "easy" appointment for once!!!

In between all of the appointments on Monday, Dennis and I had lunch at Lime, I absolutely love them! Not to mention it basically the only "Mexican" food around here AND they have an amazingly strong frozen wine margarita which comes in a HUGE cup...that really helped to take my mind off the junk that we found out at Dr. Barlow's office. ;) Thank you Lime!!

Hello? Kaleb? Are you there? (This is the way his head always turns, due to the Torticolis)

Me, Kaleb, and the most AMAZING OB ever...Dr. Peppy. 

Happy Birthday Kaleb

Kaleb turned one month old on Thursday, January 27th! When Dennis came home he surprised me with Happy Birthday balloons for Kaleb and a big piece of chocolate cake, complete with one candle! I know it may seem silly to actually have a small celebration for your child being one month old but for us it's very meaningful. In August we were told that more than likely Kaleb had a very serious chromosome disorder that almost always resulted in death soon after birth (Trisomy 18). I got an amniocentesis and waited for nearly a week before we got the results. It turned out that Kaleb did not have that disorder but another chromosome disorder that was very concerning but more than likely he would live a long life. For those days before we got the results we were terrified. We had to prepare ourselves for the fact that we may need to plan a funeral for our baby. Parents normally don't have to think about losing their child. We celebrated the fact that there was a close chance that Kaleb would not have made it to his first month birthday, but he has! So many times parents take the time they have with their children for granted, I know I'm guilty of doing that with Nolan even though I tried very hard not to. I am so thankful for every day that I have with Kaleb.

Happy 1 month Kaleb ~ We love you! 

 Thanks to Dennis' co-workers who got the balloons for us and wrote on them! 

 Yummy cake, thank you Daddy! 

 Nolan helped celebrate! 

<3