Hannah is 13 lb 1 oz!  I cannot believe how much she has grown!  I mean, she was 12.8 lb when they did her skin biopsy last week!  Crazy, crazy!

Her liver does seem bigger to him, maybe by a centimeter or so.  Her platelets are holding stable at 103,000.  Her spleen is still enlarged at 6 cm. 

He also started her immunizations.  Better late than never.  He did the 3-in-1 shot, but he is going to do this slowly and not do all the 2-month-old shots just yet.  Because her spleen is involved, he doesn’t want to overwork it with all these immunizations, even though he got the go-ahead from the genetics doctor.

New symptom or not…she has this, I’m not sure how you would call it, like an rough-skin patch on both of her ankles.  He termed it lichen-something or other.  I have an email to him asking him for the name again.  So, he wants us to slather them in vaseline tonight and cover it with a sock overnight.  Kind of like Big Boy E’s eczema outbreak routine.  He says it could be something related to whatever she has, or it could be totally separate.

The breathing issue is getting worse, and he wants us to see an ENT (ears, nose, and throat) doctor now.  Not like she doesn’t already have enough doctors already (this will be #6).   He saw the gasping when he was examining her.  It isn’t like she is struggling to breath, because I do look for the signs of that (nostrils flaring, chest retracting, etc).  She just gets so riled up with excitement sometimes that it starts.  But usually, it just happens mildly — that is what he saw. 

He called her a medical mystery.  I hate that.  I called my mom after the visit, and she told me I sounded “deflated.”  Honestly, that was a good description of how I felt. 

Tomorrow is the opthamologist for a retinal exam.  I’m PRAYING they don’t see any cherry red spots in her retina.  If they do find it, it means she most likely does have one of the lysosomal storage diseases (like NPC or Gaucher’s).  If she doesn’t have them, that still doesn’t rule those diseases out. 

I wish we could get something concrete soon.  Off to cuddle her some more…. her smile just melts my heart!

With all of Hannah’s medical appointments and everything, Daddy and I agreed that I would not go back to work yet.  Even though the medical bills are starting to pile in and we had to get Daddy a new car because his 8-year-old car finally bit the dust, we figured we are still going to be okay through the beginning of the new year without me working.  

Truth is, I hate not being around Hannah.  I love rocking her in my arms, having her fall asleep on my chest, seeing her smile when I come to pick her up from her pack-n-play, staring at me walk around the house while in her swing, stroking her face and hair, and just gazing into her beautiful eyes.  I’m not obsessive about it, as I don’t mind letting her stay and visit with our neighbors for an hour or two or hang out with my husband.  But when I do have her with me, I just want to be with her…play with her…hold her.

There are many times during the days that I forget that she is sick.  I have even gotten to the point where I don’t even notice her “tire” anymore (her spleen is so enlarged that it is sticks out the side as well as her liver).  I am always reminded when she has her little breathing episodes, which sound like asthma perhaps (going to talk to the pediatrician about that one next week.)

But I find myself getting caught up in what is going on when there is talk about the future.  When we opened her savings account for college, talking about going to elementary school, sharing clothes with her big sister when she is older.  I find myself freaking out a bit thinking “will she make it that far?”  And then, like now, I get completely crushed. 

I hate that all the diagnoses on the table have the potential of taking her away from me before she has a chance to even become her own individual.  I just keep thinking that it just can’t be possible.  I mean, why would God put us through so much to get her here, 11 years, only to take her away? 

The not knowing what is causing all of her symptoms is the worst.  I feel like I could better deal with whatever it is if I knew WHAT it is we are dealing with.  I hate thinking about the worst-case scenarios because with her symptoms and matching possibilies, they are too realistic and just suck. 

I feel like I can’t treat her normal yet.  I don’t want to put her in her crib in her room yet because I just want to keep her next to me at night, just in case.  She’s almost 4 months old, and I know she can’t sleep in that pack-n-play forever (and the crib won’t fit in our room).  I just don’t want to let her go.  I’m not ready.  I’m so afraid.  I’m just not ready.

There, I said it. I’ve been blowing this off for the past two months, but after Thursday’s visit, I just can’t deny it anymore. Hannah has always acted fine, so in my mind, I knew she was fine. But the truth is, she isn’t fine. There is something seriously wrong with her, and at this point, the doctor’s don’t know what it is. All I know is that it isn’t something very common or easily diagnosed at this point. But finding out what is wrong with her has taken a more prioritized path than it had just Wednesday, before the TCH appointment and noticing her liver has significantly enlarged.

I have a lot of guilt about this…did I do something wrong during the pregnancy? Maybe this is payback for my fear and apprehension about having her when I found out I was pregnant? Is this a result of my pregnancy-induced hypertension?

I look at her list of symptoms — enlarged liver, enlarged spleen, slight anemia, and low platelets. I wonder if there are other symptoms that we are missing? I wonder if since I’ve never done the “newborn thing” that there are things that I just assume are normal in a baby that may be aren’t?

Then I look at my big boy E. He’ll be 8 next month, and his weight has dropped down to 53 pounds, fully clothed, no shoes, and he is of normal height for his age. I know it is most likely caused by the ADHD medication, Vyvanse, since that is a common symptom. We just cannot get him to eat well. I mean, he may have a good-sized meal every once in a while, but even trying to get him to eat fatty and high-calorie stuff like ice-cream, pizza, or cheeseburgers is tough because he “just isn’t hungry.” He has dropped under the 50th percentile for weight at this point, not officially, but based on growth charts online. He has his 8-year wellcheck appointment in the next few weeks, I wonder what Dr. B, our pediatrician, is going to say and do.

Then there is little girl A. My big girl. She is still having pee accidents at home every once in a while. I honestly don’t know if it is regression because of the baby because it really only happens at home, but it has happened on a couple of occasions at school. Never has happened while we were out running errands or going out for a meal or something. She’s 4-1/2 years old now.

Tomorrow is my postop with my OBGYN. Now that I’m almost turning 40, I need to talk to him about a mammogram. I need to make sure I’m healthy right now, especially with everything else going on right now. Oh yeah, did I mention I still have really high blood pressure since giving birth? Last check on Monday was 170/100. Needless to say, I have been a big more diligent on my BP medication. What happened to this PIH supposed to be going away after giving birth?

Tuesday is more bloodwork for Hannah. They are testing for some metabolic storage diseases/syndromes. I hope they find some answers. I love that little girl. She has truly made me so happy, I just can sit and stare at her all day long. My mom asked me if I have gotten bored yet taking care of her all day in and all day long, and honestly, I haven’t. I just love being with her. (Of course, I’d love for her to sleep through the night, but at least we are down to one feeding during the night that I have to wake up for instead of two!).

Today was just a mess…

I left the house at 7:15 AM to try to make it downtown for our 8:45 AM appt for Hannah’s ultrasound and blood flow study. I was SO exhausted, as I don’t think I got more than 4 hours sleep that night before. We didn’t get checked in until 9 AM. However, we were waiting to be called, and Hannah was hungry because she hadn’t eaten since 6 AM. So, I started feeding her.

Finally got called in about 5 minutes after I started feeding her, and the ultrasound technician says that “she wasn’t supposed to eat for 4 hours before her appointment” and that I would have to either wait 4 hours or come back another time! EXCUSE ME! WTH? No one told us that she wasn’t supposed to eat 4 hours before, and believe me, I would have remembered that because she has always gone 2-3 hours between feedings and NEVER has made it to 4 hours!! I was friggin pissed off, believe me. But, what choice do I have? We decided to wait it out.

We still had about 90 minutes left until the 2nd-take of our appointment, and Hannah was absolutely miserable because she was so hungry. I have never heard her scream so much, and it seemed like nothing was consoling her. She isn’t much of a pacifier baby, but at least that helped for part of the time. It was heartbreaking seeing her like that.

FINALLY, we got in for our ultrasound appt, and Hannah was still miserable. The appointment took about 45 minutes, and I have no clue what the results are. I’m HOPING that we find out Tuesday morning at Dr. B’s office because the ultrasound tech didn’t even give me any hints, and I couldn’t even tell what I was looking at.

Tuesday, we have two doctor’s appointments — 8:45 AM with Dr. B for Hannah, and then I have my doctor at 11:30 AM to check my blood pressure (to see if it has gone down or if I am going to be put on more chronic medication).

I fell asleep at 8:30 PM tonight and woke up at 11:30 PM to take over the feedings from Daddy. I just couldn’t keep my eyes open tonight. And now, it is almost 2 AM and I’m awake. Tomorrow should be another fun one!

On a separate note, today was the first day of school for Mr. E (second grade) and Little Girl A (preK), and they both had fantastic days! Little Girl A even told me that she wanted me to pick her up at nighttime so she could stay longer 🙂

Daddy had to go out of town for a big conference on Tuesday, and he won’t be back until Friday late afternoon. Taking care of three kids, especially with one being a newborn and on an every 2-3 hour eating schedule, is just wearing me out!! I cannot WAIT for him to come home tomorrow!! Today is going to be the worst day because they are both home from camp plus it is raining heavily outside.

Hannah is doing well. She has her spleen ultrasound and Doppler study Monday morning at 8:45 AM downtown. I think I have to leave the house at 7 AM to get there in time. Dr. B wants to do a followup weight check and blood work the next day, Tuesday, at 8:45 AM. She’s been eating between 2 to 3 ounces per feeding, sometimes 1.5 oz and sometimes a bit more than 3. However, she has been straining like she is constipated for the past couple of days, so I’m going to see about adding a bit more water into her formula — she hasn’t pooped in two days, which is NOT like her!

I’m LOVING having a newborn. It isn’t that I feel like I missed out with E and A, but this is just a new and exhausting experience with such a tiny little person. I’m really enjoying it! (Of course, I can’t wait for DH to come back so I can get some naps in!).

Little Girl A is doing okay. She has had “accidents” for the past couple of months, usually just pee, which we attributed to her anxiety about the baby. Unfortunately, they are still continuing. So I’m wondering if she actually has a medical issue like a UTI (but she isn’t complaining of pain) or something. It happened at camp on rare occasions, but it mostly happens at home. She just seems to get so preoccupied in what she is doing and just goes. I’ll have to talk to Dr. B about it when I see him for Hannah next week.

Mr. E is doing great with the new baby. Looking back, with his ADHD medication and all, he has done extremely well this summer controlling his ADHD. I mean, I can count the number of times on both hands that we have had any sort of blowup or “out of controlness.” Which, considering how it was almost daily before his new medication, is a HUGE improvement.

Both kids start school on Monday — thank goodness!!!! I cannot WAIT to get into a new routine. Mr. E is starting 2nd grade, and he found out his teacher yesterday. So far, we know that he has one friend in his class, a girl who lives over on the next street. Little Girl A starts pre-k, and she is so excited to go into the 4-year-old class. Since she already knows her teacher real well and since her “old class” is just down the hall, it should hopefully be an easy adjustment.

What I would give for a nap right now… 🙂

Despite the fact that we had to wait two hours to see the doctor today, the appointment went really positively. We were completely SHOCKED when we found out her platelets jumped up to 93! Yes, that is NOT a typo! It went from 52 to 93 in just two days! They took the blood straight from her vein this time instead of a heel prick, but even the doctor said that should have not been such a substantial difference. Doesn’t matter, I’ll take it!

The enlarged spleen is still an issue, and this doctor thinks it is related to her platelet issue (which relates to a lot of what we have read). They are going to do a spleen ultrasound next week along with a spleen Doppler (check the blood flow to the kidney). They want to rule out a problem with blood flow to her kidney, which could be the cause of her enlargement and also the platelet issue. So, that is what is next.

I’m SOOO relieved to see a 93! Granted, it isn’t “back to normal” yet, but for her, this is almost unbelievable. I was in such shock, I almost wanted them to do it again just to make sure it isn’t a fluke. Obviously, she can go up or down it seems like. But 93, yay!