Archive for the ‘Big Bro and Big Sis’ Category

We had a quiet Thanksgiving at home this year.  We didn’t want to travel with Hannah being only 4 months old, so it was just our family.  Daddy cooked an awesome dinner, right down to my yams made the way my mom does.  Even Hannah sat with us in her new highchair, even though it dwarfed her and she is no where near sitting on her own yet (it leans back so she was fine).  It was nice.  We talked to the kids and asked them what they were thankful for.  Each of them, of course, had Hannah on their list.  Then she was sitting there trying to grab at her toy on the tray.   It was like for a few minutes time stood still and I forgot she was sick.  Then, when they both mentioned Hannah, for some reason, it tore at me. 

I want the diagnosis to be proven not to be NPC or something else that is fatal.  Even though she is only 4 months old now, Hannah has become such an integral part of our family.  Kind of like the piece that was missing to make our family complete.  

Daddy and I forget sometimes she is sick.  We do things as life goes on, play with the kids, and just forget.  Then someone makes a comment, usually one of the kids, and it just hits me again.  Example…we were talking about how Little Girl A was going to start elementary school with Big Boy E next year.  She will be in kindergarten and he will be in third grade.  Then, Big Boy E said to Little Girl A, “When you are in third grade, Hannah will be in kindergarten with you!”  Daddy and I just looked at it other, and it was all I could do to hold it together.  Slapped back into reality.  We just go along with it, but it eats at me knowing that it could possibly not be the case.  Then I go back to “will she even be with us then?  If she is with us, what will her condition be?”

I like the times we can just “be” as a family without this hanging over our head.  I want a miracle, I need a miracle.  Being able to even just conceive Hannah, let alone bring her into this world, is just an absolute miracle after all we have been through.  It is almost like this is a cruel joke being played on us.  Almost like — ha, ha.  Three miscarriages and years of infertility treatments, heartbreak, and grieving for the biological child you couldn’t have weren’t enough for you.  Let me really mess around with you. 

It has to be something else… there just has to be another diagnosis, something treatable, as long as it keeps her happy and gives her a long, independant, and happy life.


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My pity party from yesterday morning is over.  I guess I need a good cry and lashing out every once in awhile, because I’m back to feeling motivated and ready to kick ass against whatever is going on with Hannah.

There are so many things I need right now to deal with this, and it is hard finding what I need…mostly answers.  But here they are…

1.  Alternatives to NPC and Gaucher’s.  Even though two are the ones we are waiting testing on, what if these come back negative?  I’ve tried twice to get alternative possibilities from our genetics doctor, and he has yet to give me anything.  I realize that if I know what the alternatives could be, then I could focus less and stop dwelling as much on NPC, you know?  What else could it be?

2.  If Gaucher’s is unlikely, why is it still on the table?   I understand from the Gaucher’s specialist that I emailed that her 50% to 55% enzyme level activity is too high for it to be Gaucher’s disease, but could Hannah be a fluke?   Or is just testing it to rule it out along with the NPC test a “just to do it” thing and I shouldn’t get my hopes up (isn’t it sad that I would prefer gaucher’s disease over NPC?)

3.  Finding a support group.  Damn, it is so hard trying to find a support group around here for parents (and even siblings) of chronically or terminally ill children, doesn’t have to be disease specific.  Even online.  I’ve met some WONDERFUL parents of kids with NPC recently, and they have been a godsend.  Truly have.  Just being able to talk about it, hear their stories, just be able to reach out to someone who understands.   I’ve sent emails to the Ronald McDonald house out here, and I’m going to call TCH downtown next week to see if they have anything. 

4.  Coming up with a fighting game plan.  Once we get the diagnosis for Hannah, and if it turns out to be NPC, Gaucher’s, or something else life-threatening, I want to start fighting right out of the gate, as you already know.  But coming up with a solid plan is so difficult.  I have so many ideas, but where do I start? 

This is just the beginning…there are so many more, but I just looked at the clock and realized I have to jump in the shower for Big Boy E’s Thanksgiving party at school.  See, that is another thing.  What do I say when people ask “how is the baby?”  Most people here don’t know what is going on with her.  How do I respond?

But life is still going…off to put my son, my second grader, in the spotlight now.  It is hard when I am so consumed with Hannah lately, but Daddy and I are going to really start making a conscious effort to focus more attention on the other kids as well.  (Yep, we had a big talk about that last night).

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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!).

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Wow, we made it! We were right in the eye of the storm, and we ended up hunkering down in the walk-in closet under the stairs. It really worked out great. Fortunately, the eye of the storm with the strongest winds hit after the kids went to bed very, very early in the morning. It sounded scary at times, but I was more afraid of and waiting to hear a tree fall on our house. There are thousands of trees in our city and about 15 trees that are between 40 feet and 60 feet tall next to and around our immediate house. After all was said and done, 4 of those trees fell down and THANK GOODNESS none of them hit our house! We were SOOOO lucky.

We ended up being without power for 4 days and our phone landline (not digital) died for a couple of days. Thank goodness after that first full day without air conditioning the weather became absolutely gorgeous. That first day was horrible though with the heat and humidity!

We spent a lot of time with a few of our neighbors, playdates, chit chatting, etc. You know, life without TV, internet, etc., is really not so bad. With the exception of air conditioning, fridge/freezer, and just some light at night to see, we really did well without power for those days. Even since the power came back on, our TV and other electronic usage has cut back dramatically, and we are still hanging out with our neighbors more. It was really nice seeing many on our street come out and just hang out together every day.

Fortunately Dr. B’s office reopened today after having their trees that fell cut back. They only suffered external damage to the building and water damage in the lobby (the carpet was pulled out today.). He did an 8-week check on Hannah, and she is looking great and right on target. She even weighs 9 lb 15 oz already – the 25th percentile! Even better news? Her platelets were at 120,000!!!! They are going up on their own! Normal is 150,000 to 350,000, and we are SOOO close to getting to the low end of normal. We still have to meet with the hematologist downtown next week (we confirmed they are open) to find out WHY her spleen is still enlarged and to start coming up with a gameplan.

But she is doing great. She is really good at lifting her neck up and keeping it up for quite a while now, minutes at a time. She is working on pushing up to, and I think that is her favorite position. She is awake and more alert now and for much more often. We are going through a feeding crazy phase today where she wants to eat every 90 minutes to 2-1/2 hours instead of every three hours. Last night though she did this right before bed, and she slept 5 hours straight! That was the longest she has ever slept at night.

Little Girl A
She has been having some major attitude and attention-getting issues at preschool. So much so, we had to have a “meeting” with the director of the preschool and her two teachers the Tuesday before Ike hit. It is obvious she is going through a transition issue, but she has been REALLY bad in class — not listening, ruining other kid’s projects, hitting, pushing, etc. DH and I decided that I really need to spend some more one-on-one time with her, and that Wednesday before Ike hit, she and I spent the afternoon together after I picked her up from preschool early. We had a Mommy and Little Girl A playdate — she loved it, and I actually did too. It was fun. The next day at preschool, her teachers told me how wonderful she had actually been so far. She even got a special sticker for being so good. So, I know I have to work on that after the kids go back on Monday.

Big Boy E
He’s funny. He is a very intelligent boy, gifted for sure. I got an email from his new 2nd grade teacher saying that she has recognized this and has started giving him more challenging projects to work on when the other kids are working and he has nothing to do. I’m so glad that she took his first grade teacher’s advice on that! Though he DID get an incident notice that last day of school for talking too much in class.

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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 🙂

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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… 🙂

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Daddy got his wish… All three kids at home for the opening ceremonies of the Olympics. He and I have always been HUGE Olympic fans, especially during the summer games. We were so excited to bring her home that day before the opening ceremonies!

It has been a very mellow weekend, as we are just hanging around the house. Hannah has not been eating AS much as she did in the hospital, and by trial and error, we have now realized that she likes the ready-made formula much better than the powder AND she doesn’t like the soft playtex dropins nipples. So, we have gone with the recommendation of the occupational therapist from the NICU and have gone with the Soothie brand of bottles.

Dr. B called last night, Saturday night, to check on Hannah. Caught me by surprise because it said “private caller” on my caller ID, which usually means my parents. He just wanted to check on her and find out when our appointment was. When I told him it was 11:30 AM on Wednesday, he asked if I would bring her in Monday morning for another platelet count. He is obviously worried a bit about her because I found it very unusual, but comforting, that he would take time away from work on a weekend-night and check up on her.

I’m starting to figure her out a bit more. When she is cranky and bobs her head up and down while on my chest that means she is hungry. She is really good at lifting her head a bit while on tummy time, which shocked me because she is so little!

E and A are doing much better. A won’t leave Hannah alone and is constantly kissing her and “fixing her” clothes, blanket, etc. We have actually had to tell A to leave Hannah alone sometimes because she can be a bit smothering.

On a separate note, I quit my job last week. Because I started FMLA early because of bedrest, I would have had to go back to work in a couple of weeks, and with everything going on with Hannah and doctor’s visits, I just wasn’t ready to deal with that yet. We will have to tighten up a bit, but I know this is best for me, Hannah, and really our whole family in trying to get back into a routine. Fortunately, my bosses understood and have made me eligible for rehire when I want to come back.

Camp tomorrow for E and A. DH is going to take them in the morning while I take Hannah to Dr. B’s office for another platelet draw. I’ll have to bring Hannah to both kids camps though to pick them up — not looking forward to that! I’m going to have to use the stroller because even though I have seemed to recovered quickly, carrying the car seat with her in it for a longer distance than just a couple dozen feet or so is really taxing on my abdomen

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