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, Baby H'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 Baby H 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.
I have more to share (the fun stuff), but I'm exhausted! I'll be back later to share what has been going on with my THREE kids :)
Friday, August 29, 2008
Monday, August 25, 2008
Finally got the ultrasound and Doppler done...
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 Baby H'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 Baby H 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 Baby H 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 Baby H 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 DH. 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 E (second grade) and A (preK), and they both had fantastic days! A even told me that she wanted me to pick her up at nighttime so she could stay longer :)
I left the house at 7:15 AM to try to make it downtown for our 8:45 AM appt for Baby H'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 Baby H 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 Baby H 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 Baby H 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 DH. 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 E (second grade) and A (preK), and they both had fantastic days! A even told me that she wanted me to pick her up at nighttime so she could stay longer :)
Thursday, August 21, 2008
Exhausted!
DH 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.
Baby H 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 Baby H next week.
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. 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. 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... :)
Baby H 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 Baby H next week.
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. 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. 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... :)
Wednesday, August 13, 2008
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!
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!
Monday, August 11, 2008
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.
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.
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 Baby H earlier than Wednesday. I'm just waiting to hear.
Sunday, August 10, 2008
Relaxing at home
DH 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. Baby H 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 Baby H. 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 Baby H alone and is constantly kissing her and "fixing her" clothes, blanket, etc. We have actually had to tell A to leave Baby H 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 Baby H 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, Baby H, 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 Baby H to Dr. B's office for another platelet draw. I'll have to bring Baby H 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.
It has been a very mellow weekend, as we are just hanging around the house. Baby H 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 Baby H. 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 Baby H alone and is constantly kissing her and "fixing her" clothes, blanket, etc. We have actually had to tell A to leave Baby H 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 Baby H 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, Baby H, 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 Baby H to Dr. B's office for another platelet draw. I'll have to bring Baby H 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.
Friday, August 8, 2008
Next phase begins...
It was great having Baby H home last night. She slept in a PackNPlay next to our bed. She ate every 3 hours, and I was on baby duty last night because DH was just beyond exhausted. I didn't mind, although I only ended up with 2+ hours sleep because of the novelty of everything.
We went and saw Dr. B today, and he did another platelet level. She went down from 68 yesterday to 66. During our appointment, he excused himself to make a phone call to the Hematology group downtown at his "group" hospital (instead of the Hematology group of the hospital we were at). We have an appointment Wednesday at 11:30 AM to start a workup on Baby H to find out what the heck is going on. This is VERY exciting because this is the same hospital group that saved A's life when the other hospital couldn't figure out why they couldn't get her pneumonia under control (and ended up needing surgery). THIS hospital is one of THEEE best children's hospitals in the entire country, and I'm so excited to be able to have them work with us on Baby H.
Baby H was screaming louder than I have ever heard her when she was getting her blood drawn from a prick in the foot. The technician put a bandaid on it afterwards. When I got home and changed her diaper, I took the bandaid off. That little prick left a blood stain on the bandaid that was the size of a nickel and completely soaked. It was then that I realized how serious her condition really is. If a little pinprick takes that long to clot, we really have to be extremely careful with her. Dr. B said that if she has any bleeding that takes even a bit longer than it should that we need to take her to the ER directly.
She's sleeping next to me on the couch right now. She's so sweet and cute! Oh yeah, at Dr. B's appointment, Baby H is already back to her birthweight at 2 weeks. Apparently that is great!
We went and saw Dr. B today, and he did another platelet level. She went down from 68 yesterday to 66. During our appointment, he excused himself to make a phone call to the Hematology group downtown at his "group" hospital (instead of the Hematology group of the hospital we were at). We have an appointment Wednesday at 11:30 AM to start a workup on Baby H to find out what the heck is going on. This is VERY exciting because this is the same hospital group that saved A's life when the other hospital couldn't figure out why they couldn't get her pneumonia under control (and ended up needing surgery). THIS hospital is one of THEEE best children's hospitals in the entire country, and I'm so excited to be able to have them work with us on Baby H.
Baby H was screaming louder than I have ever heard her when she was getting her blood drawn from a prick in the foot. The technician put a bandaid on it afterwards. When I got home and changed her diaper, I took the bandaid off. That little prick left a blood stain on the bandaid that was the size of a nickel and completely soaked. It was then that I realized how serious her condition really is. If a little pinprick takes that long to clot, we really have to be extremely careful with her. Dr. B said that if she has any bleeding that takes even a bit longer than it should that we need to take her to the ER directly.
She's sleeping next to me on the couch right now. She's so sweet and cute! Oh yeah, at Dr. B's appointment, Baby H is already back to her birthweight at 2 weeks. Apparently that is great!
She's home!!!
OMG, what a whirlwind day! It's 2:30 AM, and I'm wide awake after just feeding my beautiful daughter IN MY OWN HOME! I'm going to be a wreck tomorrow, but it is so worth it.
To make a very long story short, my favorite NP and day nurse really spearheaded the drive to get Baby H home sooner than later (waiting for the 80). They talked to the neonatologist who is in charge of her care, and he agreed that if the head of the Hematology department downtown agreed it was okay that we could bring her home tomorrow. Then, my NP talked to Dr. B, our pediatrician and to Dr. H, the Hematology head, and they said "if they want to pick her up tonight, that is fine with us." My NP said "you can wait until tomorrow if you want." Yeah right!
Since Baby H has been asymptomatic from day 1, since DH and I have been so diligently visiting and taking care of her (they called us "responsible parents), and since they feel that this is something that we can work on as an outpatient, they agreed to let her go!
After all those phone calls, I called DH to tell him the news and he high-tailed it home! With E and A in tow, I had to bring Baby H's car seat to the hospital for a car seat test. Basically, Baby H has to sit in her car seat for one hour to make sure she has no breathing or other issues. They only do this for babies born before 37 weeks (Baby H was 36w1d). She passed :)
After that, the four of us went back to the hospital to pick her up. The kids were much more excited than I thought they would be. It was so fun to see them googling over her. We left as a family of five at about 8:15 PM tonight. Just having her home was so surreal! We were ready for her, but at the same time, we really weren't ready. We are going to have to make a run to the Carter's outlet tomorrow and/or Children's place because all of her sleepers are 0-3 months, and she is still in preemie size clothes (even though she is 6 lb 11 oz again - back to her birthweight at discharge).
I also have to go see my OBGYN tomorrow for followup and to see if they got my platelet antibody test results because the Hematologist is waiting for those, as it my pediatrician and the neonatal team. We also will be see Dr. B tomorrow afternoon for another blood test (for platelets and bilirubin) and to come up with a plan of action since he is taking over the lead. We really have the best pediatrician -- I found out today from the NP that he has been in constant contact with them since the beginning, and he was thrilled to see they decided to release her and figure out what is going on as an outpatient.
Anyway, thank you all for your prayers and well wishes! I can't wait to start sharing more of the fun things now! We still have a way to go until her platelets reach normal, but at least we can do it with her safe in our arms here at home with her family.
To make a very long story short, my favorite NP and day nurse really spearheaded the drive to get Baby H home sooner than later (waiting for the 80). They talked to the neonatologist who is in charge of her care, and he agreed that if the head of the Hematology department downtown agreed it was okay that we could bring her home tomorrow. Then, my NP talked to Dr. B, our pediatrician and to Dr. H, the Hematology head, and they said "if they want to pick her up tonight, that is fine with us." My NP said "you can wait until tomorrow if you want." Yeah right!
Since Baby H has been asymptomatic from day 1, since DH and I have been so diligently visiting and taking care of her (they called us "responsible parents), and since they feel that this is something that we can work on as an outpatient, they agreed to let her go!
After all those phone calls, I called DH to tell him the news and he high-tailed it home! With E and A in tow, I had to bring Baby H's car seat to the hospital for a car seat test. Basically, Baby H has to sit in her car seat for one hour to make sure she has no breathing or other issues. They only do this for babies born before 37 weeks (Baby H was 36w1d). She passed :)
After that, the four of us went back to the hospital to pick her up. The kids were much more excited than I thought they would be. It was so fun to see them googling over her. We left as a family of five at about 8:15 PM tonight. Just having her home was so surreal! We were ready for her, but at the same time, we really weren't ready. We are going to have to make a run to the Carter's outlet tomorrow and/or Children's place because all of her sleepers are 0-3 months, and she is still in preemie size clothes (even though she is 6 lb 11 oz again - back to her birthweight at discharge).
I also have to go see my OBGYN tomorrow for followup and to see if they got my platelet antibody test results because the Hematologist is waiting for those, as it my pediatrician and the neonatal team. We also will be see Dr. B tomorrow afternoon for another blood test (for platelets and bilirubin) and to come up with a plan of action since he is taking over the lead. We really have the best pediatrician -- I found out today from the NP that he has been in constant contact with them since the beginning, and he was thrilled to see they decided to release her and figure out what is going on as an outpatient.
Anyway, thank you all for your prayers and well wishes! I can't wait to start sharing more of the fun things now! We still have a way to go until her platelets reach normal, but at least we can do it with her safe in our arms here at home with her family.
Thursday, August 7, 2008
Afternoon Meeting
Went to my general doctor this morning. My BP was 150/100, which is still high. We talked a bit about how my BP was in the normal range (120/70 and 118/74) on the two days after delivery of Baby H and how my BP seemed to increase once all hell broke loose with her having "a mass" and everything that followed that. So, he isn't sure if I have chronic hypertension, remnant pregnancy-induced hypertension, stress-related hypertension, or a combination of two or all three. He decided to put me on a low-dose BP medication, lisinopril 10 mg a day, for the next two weeks. I'm also to monitor my BP twice a day to make sure that I don't dip below normal or if I feel weak, lightheaded, etc., I am to call him immediately. In two weeks, he will decide whether to continue this medication or increase it.
I took A to visit Baby H at the hospital this morning. We were there over an hour, and she was absolutely fantastic! I guess just not having both kids there at the same time is the key!
While we were there, Susan, our favorite NP, came up to me with a down face. She said "Well, her numbers stayed the same at 64 this morning." Her day nurse and I both looked at her and said "that was from yesterday. No labs were drawn today." Susan was very surprised and disappointed. She absolutely adores Baby H and told me that every day she comes in, she immediately looks for Baby H's labs to see how she is doing. When we told her that it rewritten for tomorrow morning, she said she wanted them done immediately. She didn't want us to wait until tomorrow because SHE wanted to know how Baby H was doing.
I just got the results of the labwork, which technically was a 32-hour lab. Her platelets are at 68. Needless to say, I was disappointed. I joked that I wanted to steal her out of the NICU and bring her home. She knows how bad we want her home, and she told me some more POSITIVE news...she just got off the phone with Dr. B, our pediatrician. She is having a meeting with the neonatologist in charge of Baby H's case and is going to talk to him about letting us bring her home earlier than waiting for 80! She doesn't know if he will let us do it, and I don't know what Dr. B had said to her, but she is going to push for release knowing that we will do whatever it takes and however often it takes to get Baby H's condition resolved. I told her that I will even drive to the hospital twice a day if I have to so she can get lab work done.
I won't know the outcome of this "afternoon meeting" until later on today, possibly evening. But gosh, I am just praying that they let us bring her home and recuperate her. We know she is slow going in her platelet regrowth, but according to my general doctor, 68,000 is out of the danger zone for internal bleeding, so maybe they can consider that.
PLEASE let this meeting go into our favor! I know they only want to do what is best for Baby H, and they don't want to release her if they feel they are putting her health in jeopardy, and I DO appreciate that and respect that. I just really want her home...
I took A to visit Baby H at the hospital this morning. We were there over an hour, and she was absolutely fantastic! I guess just not having both kids there at the same time is the key!
While we were there, Susan, our favorite NP, came up to me with a down face. She said "Well, her numbers stayed the same at 64 this morning." Her day nurse and I both looked at her and said "that was from yesterday. No labs were drawn today." Susan was very surprised and disappointed. She absolutely adores Baby H and told me that every day she comes in, she immediately looks for Baby H's labs to see how she is doing. When we told her that it rewritten for tomorrow morning, she said she wanted them done immediately. She didn't want us to wait until tomorrow because SHE wanted to know how Baby H was doing.
I just got the results of the labwork, which technically was a 32-hour lab. Her platelets are at 68. Needless to say, I was disappointed. I joked that I wanted to steal her out of the NICU and bring her home. She knows how bad we want her home, and she told me some more POSITIVE news...she just got off the phone with Dr. B, our pediatrician. She is having a meeting with the neonatologist in charge of Baby H's case and is going to talk to him about letting us bring her home earlier than waiting for 80! She doesn't know if he will let us do it, and I don't know what Dr. B had said to her, but she is going to push for release knowing that we will do whatever it takes and however often it takes to get Baby H's condition resolved. I told her that I will even drive to the hospital twice a day if I have to so she can get lab work done.
I won't know the outcome of this "afternoon meeting" until later on today, possibly evening. But gosh, I am just praying that they let us bring her home and recuperate her. We know she is slow going in her platelet regrowth, but according to my general doctor, 68,000 is out of the danger zone for internal bleeding, so maybe they can consider that.
PLEASE let this meeting go into our favor! I know they only want to do what is best for Baby H, and they don't want to release her if they feel they are putting her health in jeopardy, and I DO appreciate that and respect that. I just really want her home...
Wednesday, August 6, 2008
Focusing on the positives...
I went and visited Baby H only twice today (because they were closed for a few hours because another baby had surgery). This afternoon, I picked E up from camp, and we went together. He is nervous about holding Baby H, but he kept showering her with kisses and talking to her with this cute little voice "Hi H, I'm your big brother E." I also let him feed her, but I don't know if he got nervous or if his arm really was tired like he said, but that only lasted a couple of minutes.
However, this morning, Baby H got a temporary roommate while I was there. It was a full term baby that was born yesterday. The nurse was whispering to the other nurse who was working on him that he was a "multiple anomoly" baby, and they were waiting on a number of tests including multiple ultrasounds, EKG, and bloodwork. They also wanted to do a chromosome study on this baby because they were trying to get the parent's consent before they could do it. It was pretty crazy, and all I could do was just sit there...three feet away...holding Baby H and just stroking her hair and hugging her. Then, one of the other nurses came over and asked if this baby was going to stay in the NICU, and the first nurse (who brought the baby in) said "No, he needs to go back to his mother as soon as the tests are done. They want to keep him with them." It was all I could do not to cry right there, especially since they were all working so frantically trying to get these tests done, and there I was, trying to be invisible but couldn't leave.
So, instead of being angry, frustrated, and just so upset that Baby H is still there, two weeks after she was born, I decided to focus on the positives because our situation could really be so much worse. After all, with the exception of the platelet level issue now and with the spleen almost back to normal, Baby H is a healthy baby. The NPs even told us that if it wasn't for a baseline bloodwork that was taken because of the jaundice that they probably would have never even known about this platelet disorder (which in hindsight could have caused more serious problems if she had an injury or would have worked itself out on its own -- we don't know yet.)
They aren't doing another platelet level until Friday morning. They are just going to do it every 48 hours instead of 24. She needs to go up 16+ points on her platelets before we can take her home and treat her as an outpatient. She was able to do 21 points during the last 48-hour period, but for some reason on the 24-hour period after that, she only went up 2 points. So we have NO clue what to expect Friday morning.
As for me, my recovery from the Csection has gone remarkably well, much better than I had anticipated. I do think it helped that I had to walk so much so quickly (the NICU was on the floor downstairs from my room in the hospital plus all the visits after I was discharged) plus being able to just relax at home. The only medication I am on at this point is my BP medication. I stopped the Lortab two days after discharge, and I don't even need the Motrin at this point. I still feel twanges of pain in my abdomen on the rare occasion if I bend wrong, but I'm very careful not to move too fast.
The only remaining issues for me, and I'm going to be seeing my regular doctor tomorrow morning and my OBGYN on Friday, are my blood pressures (since I can't check them at home since my cuff broke), and I still have some residual numbness and tingling on the front of my right thigh (from mid-calf to my pelvis) which does kind of concern me. But tomorrow, I start working on getting me healthier...which in turn makes it better for me to take care of my 3 kids once they are ALL home!
Up, but not good enough yet...
64. That's it. Her platelet count only went up 2,000. The docs were hoping to see at least in the 70s this morning. "At least it didn't go down." They are going to test her again tomorrow morning. If she can't get into the 80s by Friday, they are going to "sit down and reevaluate" the situation including possibly another IVIg treatment or perhaps a platelet transfusion from me.
I didn't share this yesterday because I didn't want to get my hopes up, but yesterday, the docs were so excited with the 21-point jump that they told us that it looked like we could bring Baby H home either today or tomorrow -- expecting another big jump today. They even said to make an appointment with Dr. B (our pediatrician) for Friday for followup. They never said this was going to happen for sure, but they were "guardedly optimistic." In the back of my mind, with our history of infertility and adoption, I really wanted to believe it, but both DH and I had the mentality of "we'll believe it when we see it." Sure enough, this morning's numbers changed things...
They are going to release her when she gets to 80 to 85. So, if for some miracle (which I hope God is listening) she can get to 80 by Friday, they will release her that afternoon. We are grateful they are lowering the threshold from 100, their initial release level. We aren't sure why, but one of the NPs made the comment about knowing DH & I will keep her safe and take it easy with her until she gets up higher...I guess DH & I going to the NICU 3 to 6 hours a day, every day, shows them how much we care about her.
Fortunately, I was able to be there for her 5 PM feeding, thanks to Eduoard fizzling out on us. I only spent less than 90 minutes there, but that was good enough for me. Today, the NICU is closed from 2 PM to 5 PM (which is her two feeding times, ironically) in addition to their normal shift-change closure, so my time is going to be limited again today. But that's okay, I'm going to head out in a little bit to spend the morning with her.
Oh yeah, more positive news, her spleen is looking much better. It is not as hard and enlarged as it was, and the NP told DH this morning that it has even started softening (the way it should be). So, perhaps, whatever the situation was, the spleen needed time to repair itself which MAY have something to do with her platelet count situation.
I hope we can at least get into the 70s tomorrow (the 80s would be better, but I'm not going to push it!).
I didn't share this yesterday because I didn't want to get my hopes up, but yesterday, the docs were so excited with the 21-point jump that they told us that it looked like we could bring Baby H home either today or tomorrow -- expecting another big jump today. They even said to make an appointment with Dr. B (our pediatrician) for Friday for followup. They never said this was going to happen for sure, but they were "guardedly optimistic." In the back of my mind, with our history of infertility and adoption, I really wanted to believe it, but both DH and I had the mentality of "we'll believe it when we see it." Sure enough, this morning's numbers changed things...
They are going to release her when she gets to 80 to 85. So, if for some miracle (which I hope God is listening) she can get to 80 by Friday, they will release her that afternoon. We are grateful they are lowering the threshold from 100, their initial release level. We aren't sure why, but one of the NPs made the comment about knowing DH & I will keep her safe and take it easy with her until she gets up higher...I guess DH & I going to the NICU 3 to 6 hours a day, every day, shows them how much we care about her.
Fortunately, I was able to be there for her 5 PM feeding, thanks to Eduoard fizzling out on us. I only spent less than 90 minutes there, but that was good enough for me. Today, the NICU is closed from 2 PM to 5 PM (which is her two feeding times, ironically) in addition to their normal shift-change closure, so my time is going to be limited again today. But that's okay, I'm going to head out in a little bit to spend the morning with her.
Oh yeah, more positive news, her spleen is looking much better. It is not as hard and enlarged as it was, and the NP told DH this morning that it has even started softening (the way it should be). So, perhaps, whatever the situation was, the spleen needed time to repair itself which MAY have something to do with her platelet count situation.
I hope we can at least get into the 70s tomorrow (the 80s would be better, but I'm not going to push it!).
Tuesday, August 5, 2008
We have an increase!!!
DH just called after visiting Baby H on the way to work this morning, and we got the latest 48-hour platelet results... She went up to 62!!!!!!!!!!!!!! From 41 to 62!!! This is fantastic!! Also, her bilirubin went from 11.x to 6.7! Her liver seems to be functioning better finally!! I know we aren't supposed to totally expect this to be "the turnaround" they are hoping for because we need the next panel to see "a trend," but I will take it! I'm so excited to see this increase!!
They have to wait for the NPs and doctors to make rounds before I can get an update and their reaction to this bloodwork. I also want to know when they are doing the next platelet check, 24 or 48 hours. As much as I would hate to have Baby H pricked again for blood, I really hope it will be a 24-hour check just to see if we are still increasing or if this was just a "fluke." I know platelets should "jump" up higher than that in this time frame in a regular situation, so we'll see what they have to say.
Unfortunately, with Edouard's eye bearing down on us, I won't be able to get to the hospital today, which really upsets me. But, DH and I both agree it is better to keep A & E home from camp with me since Baby H is actually the safest one of all of us. E's camp was actually cancelled today, and since A is home on Tues-Thurs anyway, the three of us are going to ride out the storm together. I'm not too worried since it is weakening, but I just WISH I could make it to the hospital at least once today ... maybe tonight if things calm down, but we'll see. At least DH got to see her this morning and give her kisses for me.
But I just have to relish in the fact, her platelets are up to 62!!!!!!!!!
They have to wait for the NPs and doctors to make rounds before I can get an update and their reaction to this bloodwork. I also want to know when they are doing the next platelet check, 24 or 48 hours. As much as I would hate to have Baby H pricked again for blood, I really hope it will be a 24-hour check just to see if we are still increasing or if this was just a "fluke." I know platelets should "jump" up higher than that in this time frame in a regular situation, so we'll see what they have to say.
Unfortunately, with Edouard's eye bearing down on us, I won't be able to get to the hospital today, which really upsets me. But, DH and I both agree it is better to keep A & E home from camp with me since Baby H is actually the safest one of all of us. E's camp was actually cancelled today, and since A is home on Tues-Thurs anyway, the three of us are going to ride out the storm together. I'm not too worried since it is weakening, but I just WISH I could make it to the hospital at least once today ... maybe tonight if things calm down, but we'll see. At least DH got to see her this morning and give her kisses for me.
But I just have to relish in the fact, her platelets are up to 62!!!!!!!!!
Monday, August 4, 2008
Waiting on tomorrow...
Tomorrow morning we should get our next platelet count. I'm hoping, hoping, hoping to see some improvement.
I went to see Baby H 3 times today in the NICU. With both kids in camp, I was free to just be with her, feed her, and spend time with her. I cherished it immensely. E went with me to the last feeding this afternoon after I picked him up from camp so that he could see Baby H.
While I was there, I talked to the NP who said they had a conference call with the Hematology group downtown and my OBGYN. They had me go next door to my OBGYNs office and get some bloodwork done, looking for a certain platelet antibody, PL1C or something like that. They hope that I do have it, so if I do, I can donate my own platelets to Baby H to help her fight off whatever is destroying her platelets. But if I don't have that specific platelet antibody, then they are going to start looking for more rare disorders. So, I basically walked as fast as my body would let me next door before the OBGYN office closed 30 minutes later...they took my bloodwork (first time they had ever done this panel so they had to "look it up" apparently).
Also, they aren't convinced that the IVIg didn't work. They are thinking, maybe, perhaps it did work, and that has slowed tremendously whatever is causing her platelets to be destroyed. So, if her numbers don't come back up tomorrow or go down, they may try another IVIg transfusion.
Basically, they still don't know, but as long as we have movement and aren't sitting around, I'm better about things. If I have to donate platelets to get her better, then sign me up right now and take what she needs! If it was only that easy...but then, could it be that easy? Why didn't they consider this blood test at the beginning of all this?
Also, the NP tonight told me that she is very, very lucky she didn't develop a brain bleed in utero with numbers that low. Just what a new mom wants to hear. Apparently they see it quite often with low platelets in newborns, which is why they usually work with babies who appear sick with this condition, and not like Baby H who for all intents and purposes is acting like a healthy baby.
I know, stop second guessing...we'll just wait on tomorrow's numbers...
I went to see Baby H 3 times today in the NICU. With both kids in camp, I was free to just be with her, feed her, and spend time with her. I cherished it immensely. E went with me to the last feeding this afternoon after I picked him up from camp so that he could see Baby H.
While I was there, I talked to the NP who said they had a conference call with the Hematology group downtown and my OBGYN. They had me go next door to my OBGYNs office and get some bloodwork done, looking for a certain platelet antibody, PL1C or something like that. They hope that I do have it, so if I do, I can donate my own platelets to Baby H to help her fight off whatever is destroying her platelets. But if I don't have that specific platelet antibody, then they are going to start looking for more rare disorders. So, I basically walked as fast as my body would let me next door before the OBGYN office closed 30 minutes later...they took my bloodwork (first time they had ever done this panel so they had to "look it up" apparently).
Also, they aren't convinced that the IVIg didn't work. They are thinking, maybe, perhaps it did work, and that has slowed tremendously whatever is causing her platelets to be destroyed. So, if her numbers don't come back up tomorrow or go down, they may try another IVIg transfusion.
Basically, they still don't know, but as long as we have movement and aren't sitting around, I'm better about things. If I have to donate platelets to get her better, then sign me up right now and take what she needs! If it was only that easy...but then, could it be that easy? Why didn't they consider this blood test at the beginning of all this?
Also, the NP tonight told me that she is very, very lucky she didn't develop a brain bleed in utero with numbers that low. Just what a new mom wants to hear. Apparently they see it quite often with low platelets in newborns, which is why they usually work with babies who appear sick with this condition, and not like Baby H who for all intents and purposes is acting like a healthy baby.
I know, stop second guessing...we'll just wait on tomorrow's numbers...
Sunday, August 3, 2008
"At least it didn't go down..."
This is what I keep telling myself today after we found out there had been relatively little change in Baby H's platelet or direct bilirubin counts. Her platelets went from 40 to 41 in the 24-hour period, and her direct bilirubin went from 2.2 to 2.1. Definitely not the change we were hoping for, but "at least her platelet's didn't go down." Now, we just wait 48 hours for another blood test to see if there is any change. I do know the neonatologist is having a "call" with the Hematology group downtown because, I guess, they aren't really sure where to go next on this.
I went to see Baby H early this morning for a couple of hours. I fed her, but most of the time I just let her sleep on my chest or in my arms, and I just could not stop looking at her and caressing her. I feel like it is all I can do to get close to her at this point since there are so many hours in a day that she gets no contact from any of us. We, the four of us, went to do the early evening feeding, and then I went back again this evening for another hour to do the evening feeding and more bonding.
Tomorrow, both kids go to camp, and it will be good for them to get back into a routine. I'll probably spend most of the day with Baby H at the hospital, but I also have to call both my OBGYN and regular doctor to schedule followups, especially since my BP cuff isn't working anymore for some reason.
DH is going to visit Baby H early in the morning since he has to go back to work tomorrow. I feel so bad for him. He is so stressed out and has been incredibly overloaded these past two months. He is SO good with her. He loves feeding her, changing her diapers, and changing her clothes. I love watching him stare into her face and talk to her. It really bothers him that he can't spend more time with her in the NICU now that he has to go back to work. But really, until we know what is going on, there isn't any reason for him not to go back at this point -- hopefully, when we bring her home, he can take a few more days off to enjoy her and adjust to our new family.
The kids are doing okay with the new baby. I think the lack of structure and routine has created incredible havoc on them, especially A. She has been REALLY difficult since I went into the hospital...the "not listening," hitting, running off, etc. E has surprisingly been pretty good with everything, especially considering his ADHD.
You know, the hardest part about Baby H being in the hospital is that we have no progress at this point. It's like I don't see a light at the end of this tunnel yet, and that is just killing me. I know in my head this isn't the case, but sometimes I feel like maybe I am being punished for not feeling "connected" to her while I was still pregnant and other feelings that I felt when I first found out about being pregnant. But now, I can't imagine loving her anymore than I already do. Just laying in my hospital room that second day with her on my chest for two hours, just the two of us, I just fell in love with her completely. Now I can't seem to get her off my mind and wish I could just sit and hold her all day and night long.
I need her home...please, please, please let something positive happen with her counts on Tuesday morning. This is really killing me.
I went to see Baby H early this morning for a couple of hours. I fed her, but most of the time I just let her sleep on my chest or in my arms, and I just could not stop looking at her and caressing her. I feel like it is all I can do to get close to her at this point since there are so many hours in a day that she gets no contact from any of us. We, the four of us, went to do the early evening feeding, and then I went back again this evening for another hour to do the evening feeding and more bonding.
Tomorrow, both kids go to camp, and it will be good for them to get back into a routine. I'll probably spend most of the day with Baby H at the hospital, but I also have to call both my OBGYN and regular doctor to schedule followups, especially since my BP cuff isn't working anymore for some reason.
DH is going to visit Baby H early in the morning since he has to go back to work tomorrow. I feel so bad for him. He is so stressed out and has been incredibly overloaded these past two months. He is SO good with her. He loves feeding her, changing her diapers, and changing her clothes. I love watching him stare into her face and talk to her. It really bothers him that he can't spend more time with her in the NICU now that he has to go back to work. But really, until we know what is going on, there isn't any reason for him not to go back at this point -- hopefully, when we bring her home, he can take a few more days off to enjoy her and adjust to our new family.
The kids are doing okay with the new baby. I think the lack of structure and routine has created incredible havoc on them, especially A. She has been REALLY difficult since I went into the hospital...the "not listening," hitting, running off, etc. E has surprisingly been pretty good with everything, especially considering his ADHD.
You know, the hardest part about Baby H being in the hospital is that we have no progress at this point. It's like I don't see a light at the end of this tunnel yet, and that is just killing me. I know in my head this isn't the case, but sometimes I feel like maybe I am being punished for not feeling "connected" to her while I was still pregnant and other feelings that I felt when I first found out about being pregnant. But now, I can't imagine loving her anymore than I already do. Just laying in my hospital room that second day with her on my chest for two hours, just the two of us, I just fell in love with her completely. Now I can't seem to get her off my mind and wish I could just sit and hold her all day and night long.
I need her home...please, please, please let something positive happen with her counts on Tuesday morning. This is really killing me.
Saturday, August 2, 2008
Up in the air now...
Well, the IVIg transfusion didn't seem to help at all so far. The nurse practitioner talked to us for about 30 minutes, and it is extremely rare not to see any boost in platelet counts after IVIg with NAIT or NIIT, which means, it either isn't NAIT (which is most likely) or that we may see a late boost in platelets (not very likely).
So, we are back to square one with no working diagnosis.
The positive is that our neonatal team is now working with the Pediatric Hematology group downtown (one of the best children's hospitals in the country) our Baby H's case. Apparently she has stumped them all so far. The main puzzle piece is that everything that it COULD be has either been ruled out by bloodwork or by lack of symptoms. The fact that Baby H is so healthy otherwise (eating great, acting great, bowels and peeing great, normal temperament, not acting sick, etc.) is really throwing them for a loop in this situation.
They are going to check another platelet count tomorrow morning (as today's was 41, which was the same as yesterday morning's count). If we see the huge increase, it will be NAIT and the IVIg just took longer than normal to work...but we aren't supposed to get our hopes up for that because that is rare. If it doesn't go down and is still somewhat stable (not dropping drastically again), then they will do another count in 48 hours to see where we are.
At that point, they are hoping that her bone marrow starts to take over more control of her platelet production and whatever is causing this (perhaps the enlarged spleen, which may also be causing the jaundice) will work itself out. Her spleen has shrunk in size, which is good, but her bilirubin level is still the same (obviously not dealing with normal "newborn" jaundice).
They seem very positive that Baby H will work this out and be able to come home at some point, as they don't feel this is lifethreatening. However, even if they can get her platelets up to the 100+ mark with at least two positive trends upwards after that, we will still have to work with the pediatric hematologists downtown as an outpatient to find out what is going on.
They don't want to "prick" her too much more for blood unless they absolutely have to, which I am thankful for. By my count, she has been pricked at least 25 times in her 9-day life for bloodwork, and that is not including the three IVs she has had (one in each hand and one in her head).
Until then, we are spending a lot of time over there. Not as much as I would like to, but as much as we can, as we have had some adjustment problems with the kids, which I will go into at a later date. Needless to say, life has been very stressful in almost all respects...
So, we are back to square one with no working diagnosis.
The positive is that our neonatal team is now working with the Pediatric Hematology group downtown (one of the best children's hospitals in the country) our Baby H's case. Apparently she has stumped them all so far. The main puzzle piece is that everything that it COULD be has either been ruled out by bloodwork or by lack of symptoms. The fact that Baby H is so healthy otherwise (eating great, acting great, bowels and peeing great, normal temperament, not acting sick, etc.) is really throwing them for a loop in this situation.
They are going to check another platelet count tomorrow morning (as today's was 41, which was the same as yesterday morning's count). If we see the huge increase, it will be NAIT and the IVIg just took longer than normal to work...but we aren't supposed to get our hopes up for that because that is rare. If it doesn't go down and is still somewhat stable (not dropping drastically again), then they will do another count in 48 hours to see where we are.
At that point, they are hoping that her bone marrow starts to take over more control of her platelet production and whatever is causing this (perhaps the enlarged spleen, which may also be causing the jaundice) will work itself out. Her spleen has shrunk in size, which is good, but her bilirubin level is still the same (obviously not dealing with normal "newborn" jaundice).
They seem very positive that Baby H will work this out and be able to come home at some point, as they don't feel this is lifethreatening. However, even if they can get her platelets up to the 100+ mark with at least two positive trends upwards after that, we will still have to work with the pediatric hematologists downtown as an outpatient to find out what is going on.
They don't want to "prick" her too much more for blood unless they absolutely have to, which I am thankful for. By my count, she has been pricked at least 25 times in her 9-day life for bloodwork, and that is not including the three IVs she has had (one in each hand and one in her head).
Until then, we are spending a lot of time over there. Not as much as I would like to, but as much as we can, as we have had some adjustment problems with the kids, which I will go into at a later date. Needless to say, life has been very stressful in almost all respects...
Friday, August 1, 2008
Neonatal alloimmune thrombocytopenia
Severe neonatal alloimmune/isoimmune thrombocytopenia. That is the working diagnosis for Baby H's main platelet problem. The viral panel came back this afternoon, and thank goodness, her CMV (cytomegalpvirus) was negative. It also causes similar symptoms to what Baby H has, but it comes along with hearing, vision, and possible neurologic problems. So NAIT is the diagnosis of exclusion that they are working on.
Because CMV was ruled out, they are going to do an IVIg infusion tonight. From what I gather, this infusion will give her antigens to help fight against the bad antigens from my body (which apparently are fighting her platelets). Whatever will get her healthy, I'm all for it.
When we got there for the 1:30 PM feeding, the NICU nurse warned us that she had to put an IV port in Baby H's head. To them, they say it is easier to use the vein in the head so that the baby can still have her hands to herself. If all goes as planned, they will start the transfusion tonight at 6 PMish, and it will last a couple of hours. Then, they will do an IV saline flush through the IV for a few more hours after that.
Because of the IVIg transfusion, they aren't going to do blood work tonight, so we have to wait until tomorrow morning. Also, we won't be able to see her until tomorrow morning, so we actually stayed 90 minutes during this afternoon's feeding (instead of our usual 45 minutes during feeding time) just so I could have more cuddle time. Of course, she was sleeping the entire time, but I didn't care. I just loved caressing her face, rubbing her hair, touching her cheeks, kissing her head, and just staring into her sleepy little face.
We also talked to our pediatrician this morning. He has been really on top of Baby H's care and was even at the hospital earlier this morning because he had left a note with his personal cell phone number on her chart in case something happened this weekend. He definitely agrees with the course of action so far, and he explained to us that this is not a day-to-day basis type of situation but, more likely, a week-by-week basis. He can't release her early because platelets this low are very dangerous for cerebral bleeding...same thing the neonatologist told us, but he has a way of talking to us like a "real parent" in layman's terms.
So, we are keeping our fingers crossed that tonight's transfusion goes well and that tomorrow's numbers show some sort of improvement. We are also settling in for a longer haul than we had been anticipating (planning for her to be in for at least the next week and be pleasantly surprised if she comes home early).
Also, Baby H is one week old now! She was born one week ago this evening. Wow, where did the time go!
Because CMV was ruled out, they are going to do an IVIg infusion tonight. From what I gather, this infusion will give her antigens to help fight against the bad antigens from my body (which apparently are fighting her platelets). Whatever will get her healthy, I'm all for it.
When we got there for the 1:30 PM feeding, the NICU nurse warned us that she had to put an IV port in Baby H's head. To them, they say it is easier to use the vein in the head so that the baby can still have her hands to herself. If all goes as planned, they will start the transfusion tonight at 6 PMish, and it will last a couple of hours. Then, they will do an IV saline flush through the IV for a few more hours after that.
Because of the IVIg transfusion, they aren't going to do blood work tonight, so we have to wait until tomorrow morning. Also, we won't be able to see her until tomorrow morning, so we actually stayed 90 minutes during this afternoon's feeding (instead of our usual 45 minutes during feeding time) just so I could have more cuddle time. Of course, she was sleeping the entire time, but I didn't care. I just loved caressing her face, rubbing her hair, touching her cheeks, kissing her head, and just staring into her sleepy little face.
We also talked to our pediatrician this morning. He has been really on top of Baby H's care and was even at the hospital earlier this morning because he had left a note with his personal cell phone number on her chart in case something happened this weekend. He definitely agrees with the course of action so far, and he explained to us that this is not a day-to-day basis type of situation but, more likely, a week-by-week basis. He can't release her early because platelets this low are very dangerous for cerebral bleeding...same thing the neonatologist told us, but he has a way of talking to us like a "real parent" in layman's terms.
So, we are keeping our fingers crossed that tonight's transfusion goes well and that tomorrow's numbers show some sort of improvement. We are also settling in for a longer haul than we had been anticipating (planning for her to be in for at least the next week and be pleasantly surprised if she comes home early).
Also, Baby H is one week old now! She was born one week ago this evening. Wow, where did the time go!
Friday AM numbers
Bilirubin only went down .1 from 11.4 to 11.3. I wonder if they are going to put her back under the phototherapy lights?
Platelets went down only 1 point to 41,000 from 42,000. I guess I should take solace that they didn't go down dramatically again like they did yesterday (drop of 12). I know that 30,000 was the number that they were going to give her another transfusion at, but I also know that her current donor platelets expire today. We'll have to wait and see.
I feel like we just aren't making any progress, you know? I'm going to call our pediatrician today to see if he can call a colleague of his from downtown (a hematologist) to check out Baby H and give us a second opinion on her condition, or at the very least assure us that we are on the right track with the treatment we are on.
Platelets went down only 1 point to 41,000 from 42,000. I guess I should take solace that they didn't go down dramatically again like they did yesterday (drop of 12). I know that 30,000 was the number that they were going to give her another transfusion at, but I also know that her current donor platelets expire today. We'll have to wait and see.
I feel like we just aren't making any progress, you know? I'm going to call our pediatrician today to see if he can call a colleague of his from downtown (a hematologist) to check out Baby H and give us a second opinion on her condition, or at the very least assure us that we are on the right track with the treatment we are on.
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