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Archive for August, 2008

What to do…

We got the ultrasound and Doppler results. Her spleen IS enlarged (no, duh) and is 8 cm, which according to the report, is 2 standard deviations above the upper end of normal. Not sure how much a standard deviation is though. I need to contact the hospital she was born at to get a copy of the original ultrasound report so the docs can compare the growth factor between then and now. There is NO portal vein hypertension, and her blood flow to/from the spleen looks normal. There is some slight restriction on her hepatic artery that is “nonspecific” but that doesn’t seem to be a concern right now.

Also, Hannah’s platelets are at 94, which is just 1 point higher than it was at the last visit on the 13th. But “at least it didn’t go down!”

So, after talking to Dr. B, he wanted me to make an appointment with Dr. M, the hematologist, in two weeks and see him back in 4 weeks. The next day, Dr. M calls me with the results of the ultrasound not knowing that Dr. B had pulled them up the day before and let me know the results. He told me that he wants to see Hannah in SIX weeks and to follow up with Dr. B in 3 weeks. I called Dr. B back with that info, and Dr. B wasn’t too pleased because he wants answers sooner than later because since we have ruled out almost all acute reasons for the enlarged spleen (infection, etc.,), he is concerned that it may be metabolic and require more invasive testing (like biopsies, etc.). But he agreed to go with the flow for now.

I called and made an appointment with Dr. M on 9/25 — which will actually be the 4-week mark instead of 6-week mark. We’ll see Dr. B the week before that just to get another platelet count to see if there is any change.

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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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Exhausted!

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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Positive appointment!

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!

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Wednesday it is

Dr. B contacted the Hematology team at TCH downtown, and they said that we can wait until Wednesday’s appointment. We are actually meeting with the Head of the Hematology team (of which there seem to be almost 100 clinicians), so we don’t want to lose that coveted meeting. I was actually impressed that Dr. B was able to get an appointment with him directly so soon.

But for now, we are just doing as we have been. I had a little freakout this morning because her umbilical stump started bleeding a little bit, but Dr. B checked it out (as he wants us to be diligent) and saw that it was okay and “normal.”

We better start getting some answers.

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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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52

52. Her platelets dropped from 66 to 52 from Friday afternoon to today, Monday morning. I’m crushed. Dr. B is going to call his colleague from TCH downtown in the Hematology department to see if they want to see Hannah earlier than Wednesday. I’m just waiting to hear.

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