I bought sunglasses for Iris since she has aniridia and is sure to have eye problems in the future. She won't return to the opthamologist until she is 6 months old but until then we'll do our best to protect her eyes. She seems to really like them.
Wednesday, June 26, 2013
immunizations
Evan and I took Iris to the pediatrician yesterday afternoon for her 8-week immunizations. She is now almost 11 weeks old, and so was a bit late in getting them. She got her first immunization just after birth and it was totally awful for me. I held her when they gave her the Hep-B shot and then started crying when I saw her little face register the pain of the shot. This time around I was slightly apprehensive because she would be getting many more shots but turns out that her cries were nothing compared to what we had heard during her time in the hospital. We gave her baby Tylenol in the evening and has been fine today. So, no sweat, really.
All growth signs are looking good -- she weighed 10 lbs 7 oz (4.73 kg). Her head is growing, though it's still small. And she's still very tall. We're eager to find out whether she is left-handed like her parents.
An update on medications: we've taken her off Zantac and simethicone so her med schedule is getting simplified. She now gets meds at 7:30am, 11:30am, 7:30pm and 3:30am.
The mornings have become increasingly normalized for me - I have been able to get runs in or other types of exercise (yoga this morning). I am hoping to do a half-marathon in October so the runs will have to become increasingly lengthy. Evan has been cycling to work but is still not getting the exercise he'd like to be getting. He has plans to explore the jiu-jitsu gyms in town but has been unable to figure out how to fit that in to his work schedule.
All growth signs are looking good -- she weighed 10 lbs 7 oz (4.73 kg). Her head is growing, though it's still small. And she's still very tall. We're eager to find out whether she is left-handed like her parents.
An update on medications: we've taken her off Zantac and simethicone so her med schedule is getting simplified. She now gets meds at 7:30am, 11:30am, 7:30pm and 3:30am.
The mornings have become increasingly normalized for me - I have been able to get runs in or other types of exercise (yoga this morning). I am hoping to do a half-marathon in October so the runs will have to become increasingly lengthy. Evan has been cycling to work but is still not getting the exercise he'd like to be getting. He has plans to explore the jiu-jitsu gyms in town but has been unable to figure out how to fit that in to his work schedule.
Sunday, June 23, 2013
Saturday, June 22, 2013
training session
Iris began her 10th week on Thursday. She had a stellar day Thursday, eating well and keeping it all down. Yesterday looked to repeat that pattern up until her nightly fuss time. Yes, vomit. Despite that unfortunate event (and some this morning), she is a learning how to use her body pretty well. Her head control is really impressive. She is also very social. I don't have much to compare her to but I think she is a very happy and curious little girl.
We just returned from our first family trip to Washington Park, one of the many beautiful parks in Denver. She had a great trip. By which I mean to say, she behaved well. We walked a while and then stopped to play frisbee. We also stopped at one point so Iris could have a bottle, which Evan very diligently supplied. Several people stopped to chat and to see Iris. One woman said she had a son who was on oxygen when he was two years old. He is now fifteen and - in her words - a genius. Another woman came by with her 4-month old and wanted to know how old Iris is. My favorite, though, was the man who came up to us and said something like, "Is this a training session?" I laughed and said, "Thank you for calling me out on that." He went on to observe that I was staring intently at Iris and at Evan as if to make sure that the feeding went alright and that Evan was doing it right. I confess. I was. The man went on to say something like, "You can sit back and enjoy the park. You can see he has very strong and steady hands." I did my best to sit back, but I would like to note that part of the reason I was not 'sitting back' was because I was watching the parents on the playground swing their kids on the tire swing. It seemed awfully unsafe to me and the kids were hanging on well but I was worried that they might fall off.
Iris is sleeping well in her crib. The crib happens to be in the same room that Evan has his work station set up so he stayed up working last night in her room while I slept. He loves his job and is happy to be learning 'useful' stuff. He also is experiencing the New Hire Jitters and doesn't feel that he's always performing as well as he should be.
We just returned from our first family trip to Washington Park, one of the many beautiful parks in Denver. She had a great trip. By which I mean to say, she behaved well. We walked a while and then stopped to play frisbee. We also stopped at one point so Iris could have a bottle, which Evan very diligently supplied. Several people stopped to chat and to see Iris. One woman said she had a son who was on oxygen when he was two years old. He is now fifteen and - in her words - a genius. Another woman came by with her 4-month old and wanted to know how old Iris is. My favorite, though, was the man who came up to us and said something like, "Is this a training session?" I laughed and said, "Thank you for calling me out on that." He went on to observe that I was staring intently at Iris and at Evan as if to make sure that the feeding went alright and that Evan was doing it right. I confess. I was. The man went on to say something like, "You can sit back and enjoy the park. You can see he has very strong and steady hands." I did my best to sit back, but I would like to note that part of the reason I was not 'sitting back' was because I was watching the parents on the playground swing their kids on the tire swing. It seemed awfully unsafe to me and the kids were hanging on well but I was worried that they might fall off.
Iris is sleeping well in her crib. The crib happens to be in the same room that Evan has his work station set up so he stayed up working last night in her room while I slept. He loves his job and is happy to be learning 'useful' stuff. He also is experiencing the New Hire Jitters and doesn't feel that he's always performing as well as he should be.
Wednesday, June 19, 2013
new crib night
The baby monitor arrived yesterday in the mail so Iris slept in her big-girl crib last night. I got almost no sleep. We had been keeping her in her bassinet, which had been in our room with us (actually on our bed). It is much easier to check on her when she is sleeping right next to us so last night was pretty sleepless for me. I hope that I'll learn to sleep better with her in the other room.
The big event of the day for Iris is that she started lifting her head forward as if trying to sit further forward (or up) in her bassinet. I have been worried that she won't keep up with her physical development because of the surgery. We're supposed to be doing tummy time with her but keep an eye on her pain cues.
I have been successful in incorporating walks into our daily routine. Yesterday's walk was quiet and cool. Today's was much hotter. I also was also able to read some of Gulp: Adventures on the Alimentary Canal by Mary Roach. This is the book my book club is reading this month and I am very hopeful I'll be able to attend the June meeting. This is the same book club I was in back in 2010 when I was living in Denver. A couple of my girlfriends from high school are in it as well as some of their friends. I really look forward to getting involved again.
I've been getting many compliments about what a good job I'm doing with Iris. While I (of course) appreciate the positive feedback, I really don't think I'm doing anything that anyone else wouldn't do. I had planned to be home with Iris during this time even before we knew of her health issues. Confronted with this new reality, we are responding the only way we know how... I think. That said, it would be very easy to wallow in self-pity. I have found it tremendously helpful to hear from those who have had similarly difficult experiences. I generally enjoy reminding myself that I am not at all that unique; in the case of Iris's recent health issues, I doubly enjoy knowing that our story is not all that unique.
It also helps to remind myself that none of this is permanent. Soon Iris will have grown out of her reflux (cross your fingers) and she will not need the various meds and oxygen anymore. That will be a happy day. A year out (for the digoxin), but a happy day.
In my limited free time I have done some perusing of available jobs nearby. After living at Children's Hospital for nearly 3 weeks, I had in my mind that perhaps I'd try to get into hospital administration rather than higher education administration. I miss having a job (outside of the house) quite a bit. I have decided to take a leave of absence from my PhD program. This means that instead of defending my proposal in August I will take off the the fall semester and hope to defend in the spring semester. After I defend my proposal I will be ABD (all but dissertation) and I will then (only) have to complete the dissertation itself and defend it.
Today was a two-vomit day. I keep trying to tie it to a particular medication. Really, I just want her off of all of them.
Tomorrow's goals: walk, nap, call opthamology for appointment (I keep forgetting that one), write Anne a letter.
The big event of the day for Iris is that she started lifting her head forward as if trying to sit further forward (or up) in her bassinet. I have been worried that she won't keep up with her physical development because of the surgery. We're supposed to be doing tummy time with her but keep an eye on her pain cues.
I have been successful in incorporating walks into our daily routine. Yesterday's walk was quiet and cool. Today's was much hotter. I also was also able to read some of Gulp: Adventures on the Alimentary Canal by Mary Roach. This is the book my book club is reading this month and I am very hopeful I'll be able to attend the June meeting. This is the same book club I was in back in 2010 when I was living in Denver. A couple of my girlfriends from high school are in it as well as some of their friends. I really look forward to getting involved again.
I've been getting many compliments about what a good job I'm doing with Iris. While I (of course) appreciate the positive feedback, I really don't think I'm doing anything that anyone else wouldn't do. I had planned to be home with Iris during this time even before we knew of her health issues. Confronted with this new reality, we are responding the only way we know how... I think. That said, it would be very easy to wallow in self-pity. I have found it tremendously helpful to hear from those who have had similarly difficult experiences. I generally enjoy reminding myself that I am not at all that unique; in the case of Iris's recent health issues, I doubly enjoy knowing that our story is not all that unique.
It also helps to remind myself that none of this is permanent. Soon Iris will have grown out of her reflux (cross your fingers) and she will not need the various meds and oxygen anymore. That will be a happy day. A year out (for the digoxin), but a happy day.
In my limited free time I have done some perusing of available jobs nearby. After living at Children's Hospital for nearly 3 weeks, I had in my mind that perhaps I'd try to get into hospital administration rather than higher education administration. I miss having a job (outside of the house) quite a bit. I have decided to take a leave of absence from my PhD program. This means that instead of defending my proposal in August I will take off the the fall semester and hope to defend in the spring semester. After I defend my proposal I will be ABD (all but dissertation) and I will then (only) have to complete the dissertation itself and defend it.
Today was a two-vomit day. I keep trying to tie it to a particular medication. Really, I just want her off of all of them.
Tomorrow's goals: walk, nap, call opthamology for appointment (I keep forgetting that one), write Anne a letter.
Monday, June 17, 2013
doctor day
Trips to the doctor take pretty much all day. I was prepared for this but unfortunately it meant that it was unlikely for me to get a nap. (Luckily, I was able to squeeze one in after Evan got home). Our appointment at the Cardiac Institute was at 12:30pm and I left the house around 11:40am to get there. It's amazing how much longer things take when towing a baby and baby gear.
While we were in the waiting area the cardiac surgeon who operated on Iris passed by and he stopped to say hello. He's done that several times when we've been in the hospital. Today we chatted about Iris's health, as always, and he asked whether the opthamologists had said anything more about her eyes. He also shared that his dad lives at home with him and therefore has learned how trying it can be to deal with oxygen tanks. That's true, but what's more trying is Iris's medication schedule.
Unfortunately there was no weaning from her numerous medications today. There was discussion of whether to take her off of Lasix (a diuretic) but no dice. So she remains on Digoxin (for SVT), Sildenafil (for pulmanory hypertension), Lasix (for pulmanory hypertension), Zantac (for reflux), Prevacid (for reflux), Simethicone (for gas), and (newly) Nystatin (for thrust).
Here's the good news: she gained weight since her Monday clinic visit. She tipped the scales at 4.49 kg (9lbs 14oz). This is essentially the same as at the pediatrician's on Thursday (yay for consistency) but more exciting is that this weights equates to a 21-gram daily gain since her last clinic visit. That falls within the "normal" range what babies are supposed to be gaining: 20-30 grams per day. The nutritionist told me not to change anything except that I can incorporate slightly more nursing as long as I make sure to keep up with the fortified breastmilk using formula. Honestly, it's a pain to have to pump every three hours so although I'm glad that she's gainig weight, I would love not to have to continue with the feeding/pumping regimen.
Lastly, we can now stop putting a bandage on her incision wound. It has healed well and can now stay open to air. So all in all, the visit was a success. We'll return in two weeks, at which time they'll discuss weaning off meds/oxygen depending on the results of tests (which tests? not sure). Next up: vaccinations, on which she is late.
Evan rode his bike to work today (50 minutes door-to-door) and I was able to get a bit of exercise in the morning and a nap early in the evening. As I write this the dishwasher is running and I keep thinking I am hearing Iris cry. She is asleep -- not crying.
Tomorrow's goals: go on a walk with Iris during the day, no vomit, start to get her on a better eating schedule, possibly catch up with some friends, read a book (?).
While we were in the waiting area the cardiac surgeon who operated on Iris passed by and he stopped to say hello. He's done that several times when we've been in the hospital. Today we chatted about Iris's health, as always, and he asked whether the opthamologists had said anything more about her eyes. He also shared that his dad lives at home with him and therefore has learned how trying it can be to deal with oxygen tanks. That's true, but what's more trying is Iris's medication schedule.
Unfortunately there was no weaning from her numerous medications today. There was discussion of whether to take her off of Lasix (a diuretic) but no dice. So she remains on Digoxin (for SVT), Sildenafil (for pulmanory hypertension), Lasix (for pulmanory hypertension), Zantac (for reflux), Prevacid (for reflux), Simethicone (for gas), and (newly) Nystatin (for thrust).
Here's the good news: she gained weight since her Monday clinic visit. She tipped the scales at 4.49 kg (9lbs 14oz). This is essentially the same as at the pediatrician's on Thursday (yay for consistency) but more exciting is that this weights equates to a 21-gram daily gain since her last clinic visit. That falls within the "normal" range what babies are supposed to be gaining: 20-30 grams per day. The nutritionist told me not to change anything except that I can incorporate slightly more nursing as long as I make sure to keep up with the fortified breastmilk using formula. Honestly, it's a pain to have to pump every three hours so although I'm glad that she's gainig weight, I would love not to have to continue with the feeding/pumping regimen.
Lastly, we can now stop putting a bandage on her incision wound. It has healed well and can now stay open to air. So all in all, the visit was a success. We'll return in two weeks, at which time they'll discuss weaning off meds/oxygen depending on the results of tests (which tests? not sure). Next up: vaccinations, on which she is late.
Evan rode his bike to work today (50 minutes door-to-door) and I was able to get a bit of exercise in the morning and a nap early in the evening. As I write this the dishwasher is running and I keep thinking I am hearing Iris cry. She is asleep -- not crying.
Tomorrow's goals: go on a walk with Iris during the day, no vomit, start to get her on a better eating schedule, possibly catch up with some friends, read a book (?).
Sunday, June 16, 2013
first father's day
A lot can happen in a day. I got plenty of sleep last night and even an afternoon nap. Unprecedented. We had vague plans of going to a park today for Father's Day but that instead turned into a short walk to the closest park. The walk might have gone longer had the clouds not been threatening rain all around us. Really, the day was full of errands that Evan ran while I stayed home with Iris. Evan and Iris did have some good quality time in the morning, though:
Iris had a great day (with the exception of her early evening fussiness, which has become a pattern that we need to disrupt) -- no vomit! And she even ate 100 ml during an afternoon feeding. We also talked with all the grandparents today and Iris was even dressed in a cute outfit (until there was an unfortunate mess made...).
Iris had a great day (with the exception of her early evening fussiness, which has become a pattern that we need to disrupt) -- no vomit! And she even ate 100 ml during an afternoon feeding. We also talked with all the grandparents today and Iris was even dressed in a cute outfit (until there was an unfortunate mess made...).
I gave her acidopholis in her bottle this morning and then we started her on Nystatin, an antifungal medicine for the thrush. Tomorrow is another visit to the Caridac Institute at Children's Hospital. Her incision is healing pretty well, but there are two spots that are not healing totally wonderfully. We closed the day with dinner on the patio and it is now time for me to get to bed ASAP.
Saturday, June 15, 2013
concerns
Iris has thrush. I think she is not eating so well (very) recently because of it. I asked someone -- perhaps one of the cardiologists at her clinic appointment -- about it and she said that it wasn't a bad case of thrush. Nevertheless, I am worried. I bought acidopholis to give to her, something that Dr. Sears recommends. She is also congested and seemed too sleepy this morning so I turned her oxygen up to 1/2 liter instead of 1/4 liter. The nurse at the pediatrician was not able to get her oxygen saturation level above 94 at that time and I think it's because of whatever congestion she is dealing with. I have tried to suck out some mucus from her nose a few times and have had varying levels of success. She vomited twice this morning to make up for her recent vomit-free past. This is doubly worrying since she hasn't been eating well. I am tired and need a nap. Evan worked this morning and is now sauteeing some veggies for dinner.
Friday, June 14, 2013
tiny victories & daily goals
We are getting closer to finding a daily routine that approximates sustainabilty. The daily grind involves giving Iris her medications five times a day (these are oral medications, not shots), changing her incision coverings once a day, making sure her oxygen tank is working, fortifying breast milk with formula so that she gets more calories, recording the amount she eats, trying to pump every three hours, and then washing all the syringes and breast pump materials so we can start over again. All that is added to the normal babycare stuff: comforting when crying, changing diapers, playing...
In an attempt to find a routine we've found it important to set exactly one daily goal. Two days ago it was "nap for Sarah." Yesterday it was "morning run." Today I am being ambitious. My goals are: do some laundry, take a nap, go on a walk with Iris, and post something to the blog. A shower would be good, too. That might wait till Evan gets home.
There are some tiny victories to report. Iris is still averaging one vomit a day but yesterday's daily vomit was small -- what I would call a "normal kid" vomit. She barely noticed it and was happy before and after. Yesterday also marked the first day I drove alone with her. I have been nervous to drive by myself but she did great. We had to go to the pediatrician's office - about 10 minutes away. The main news is that she gained weight since her first visit to the pediatrician. Her new weight is 9 lbs 14.5 oz (4.49 kg). This is what she weighed at the emergency room a couple days ago. This is also up 7.5 oz since her visit last week to Dr. Sagel. Dr. Sagel was really impressed with her weight gain and encouraged me to start nursing Iris again rather than exclusive bottle feeding -- or at least to begin to reincorporate nursing.
Some other funny things that happened at the pediatrician: Iris peed on the table after we weighed her naked. She then pooped and peed again as the nurse was trying to take her (rectal) temperature. The nurse almost got her face pooped on.
Iris is starting to hold her head up on her own when I burp her. She is also cooing and making sounds that sound an awful lot like "hi."
As far as long term goals (i.e. this weekend), I am hoping that the three of us can have a small visit to a park on Sunday morning (Father's Day) before it gets too hot. And we're also working on getting Iris to bed at a reasonable hour. All we have read about parenting emphasizes the importance of predictability and routine for children so it's also very important to me that we get her into having a regular bed time. I expect this to take a while to lock in.
In an attempt to find a routine we've found it important to set exactly one daily goal. Two days ago it was "nap for Sarah." Yesterday it was "morning run." Today I am being ambitious. My goals are: do some laundry, take a nap, go on a walk with Iris, and post something to the blog. A shower would be good, too. That might wait till Evan gets home.
There are some tiny victories to report. Iris is still averaging one vomit a day but yesterday's daily vomit was small -- what I would call a "normal kid" vomit. She barely noticed it and was happy before and after. Yesterday also marked the first day I drove alone with her. I have been nervous to drive by myself but she did great. We had to go to the pediatrician's office - about 10 minutes away. The main news is that she gained weight since her first visit to the pediatrician. Her new weight is 9 lbs 14.5 oz (4.49 kg). This is what she weighed at the emergency room a couple days ago. This is also up 7.5 oz since her visit last week to Dr. Sagel. Dr. Sagel was really impressed with her weight gain and encouraged me to start nursing Iris again rather than exclusive bottle feeding -- or at least to begin to reincorporate nursing.
Some other funny things that happened at the pediatrician: Iris peed on the table after we weighed her naked. She then pooped and peed again as the nurse was trying to take her (rectal) temperature. The nurse almost got her face pooped on.
Iris is starting to hold her head up on her own when I burp her. She is also cooing and making sounds that sound an awful lot like "hi."
As far as long term goals (i.e. this weekend), I am hoping that the three of us can have a small visit to a park on Sunday morning (Father's Day) before it gets too hot. And we're also working on getting Iris to bed at a reasonable hour. All we have read about parenting emphasizes the importance of predictability and routine for children so it's also very important to me that we get her into having a regular bed time. I expect this to take a while to lock in.
Tuesday, June 11, 2013
home again
We made it home. The new idea is that she just had a bad vomiting episode that started the rest of the symptoms. Looking forward to some sleep tonight. Evan's mom extended her visit to help get Iris back home from the hospital.
Monday, June 10, 2013
emergency room visit
We are in the emergency room at the moment waiting to be admitted for the evening. Iris had a very scary episode of some very scary symptoms earlier in the evening. She vomited (her 2nd of the day) and had diarrhea. These can be signs of heart failure. Additionally, she was in a cold sweat and was having tons of bubbly saliva (foam?) coming from her mouth. It did not appear to be a seizure, so far as we know. As we decided to make the drive to the ER her skin became mottled and ashen. We rushed out the door and on the way to the hospital we called 911. I had them connect us to the ER at Children's Hospital so that they would be expecting us when we arrived.
By the time we arrived Iris had fallen asleep. A little while later she looked fairly good and she is now sitting in her dad's arms feeling kind of smiley.
The best guess for what happened is that she had an episode of SVT (supraventricular tachycardia). She is on digoxin to combat this condition but it can still recur. Iris and I are staying the night and I imagine we'll be discharged tomorrow. More info when I have it.
By the time we arrived Iris had fallen asleep. A little while later she looked fairly good and she is now sitting in her dad's arms feeling kind of smiley.
The best guess for what happened is that she had an episode of SVT (supraventricular tachycardia). She is on digoxin to combat this condition but it can still recur. Iris and I are staying the night and I imagine we'll be discharged tomorrow. More info when I have it.
emesis
Dealing with our daughter's medical problems has brought with it many new vocabulary words, one of which is an especially persistent annoyance = emesis.
emesis [ˈɛmɪsɪs]
Yesterday was vomit-free and I was under the impression that today would be similarly vomit-free but she had her daily gut clearing while we were at the cardiac clinic for a follow-up visit.
The follow-up visit consisted of an EKG and an echo while Iris was on and off oxygen. They found that the oxygen is still helping her (i.e. she has septal flattening while off oxygen) so she is staying on it. We also were given the results of some of her genetic tests, which came back negative. We are still waiting on the results of some of the tests and I will be calling the geneticist later in the week to get a clearer idea of which results these were. I think we can tentatively say that she doesn't have any of the scary syndromes associated with aniridia that also include cognitive developmental delays. A good thing.
Iris has shown progress over the weekend in terms of her weight gain, but it's not enough. She went from 4.25 kg (9lbs 6oz) to 4.3 kg (9lbs 8oz). They want her to be gaining 0.014 kg (0.5 oz) per day and she is missing that mark. Her vomiting certainly does not help the matter.
emesis [ˈɛmɪsɪs]
n
Iris has one vomit a day. It is a rare treat when she makes it an entire day without a vomit. This may be a sign of reflux, but we are under the impression that the Zantac and the Prevacid are doing the appropriate things to combat reflux.Yesterday was vomit-free and I was under the impression that today would be similarly vomit-free but she had her daily gut clearing while we were at the cardiac clinic for a follow-up visit.
The follow-up visit consisted of an EKG and an echo while Iris was on and off oxygen. They found that the oxygen is still helping her (i.e. she has septal flattening while off oxygen) so she is staying on it. We also were given the results of some of her genetic tests, which came back negative. We are still waiting on the results of some of the tests and I will be calling the geneticist later in the week to get a clearer idea of which results these were. I think we can tentatively say that she doesn't have any of the scary syndromes associated with aniridia that also include cognitive developmental delays. A good thing.
Iris has shown progress over the weekend in terms of her weight gain, but it's not enough. She went from 4.25 kg (9lbs 6oz) to 4.3 kg (9lbs 8oz). They want her to be gaining 0.014 kg (0.5 oz) per day and she is missing that mark. Her vomiting certainly does not help the matter.
Sunday, June 9, 2013
Photos 3-8 June -- hospital to home
My daddy cracks me up!
Monday 3 June
Checking out of the hospital
Monday 3 June
Buckling up for the ride home
Monday 3 June
Dinner on the patio
Tuesday 4 June
I really like this vibrating musical swing that Grannie Sally sent me!
Wednesday 5 June
.JPG)
Lookit those colorful little animal things! (with Grannie Teresa)
Saturday 8 June
I just had a big meal, grandad, so I'd kinda like to sleep if it's ok with you.
Saturday 8 June
A big bandaid, but it's coming off soon!
Saturday 8 June
Hi dad!
Saturday 8 June
Friday, June 7, 2013
Thursday, June 6, 2013
doctor visits
Iris had two doctor appointments today. The first was with the pediatrician who was supposed to see her shortly after discharge from the hospital to get an idea of her baseline. Turns out the pediatrician also has a cardiac baby who is now 8 years old and plays soccer. The second appointment was with the cardiac clinic at Children's. That appointment went much longer.
The good news from today is that Iris's incision wounds are healing well. The cardiologist was pleased with her progress. The bad news is that Iris lost weight and everyone is especially concerned about her getting behind. When she left the hospital she weighed 4.3 kg (9 lbs 8 oz) and today she weighed in at 4.25 kg (9 lbs 6 oz). Apparently it is hard for babies to get enough calories after a big surgery because their bodies are working so hard to heal. It doesn't help that she is a "reflux queen" (in the words of the physical therapist). So we have just started her on Prevacid. We also have to "fortify" her bottles with formula. She is not getting straight formula but at each feeding she is supposed to get mostly breast milk with a tiny bit of formula added in.
The good news from today is that Iris's incision wounds are healing well. The cardiologist was pleased with her progress. The bad news is that Iris lost weight and everyone is especially concerned about her getting behind. When she left the hospital she weighed 4.3 kg (9 lbs 8 oz) and today she weighed in at 4.25 kg (9 lbs 6 oz). Apparently it is hard for babies to get enough calories after a big surgery because their bodies are working so hard to heal. It doesn't help that she is a "reflux queen" (in the words of the physical therapist). So we have just started her on Prevacid. We also have to "fortify" her bottles with formula. She is not getting straight formula but at each feeding she is supposed to get mostly breast milk with a tiny bit of formula added in.
Wednesday, June 5, 2013
on vomit watch
the new normal
We are home now. Iris was discharged from the hospital on Monday (June 3) and we have been trying to establish the semblance of a routine in our new apartment. It has basically been really difficult ever since we got home, starting with the first panicked dash to find where our diapers and wipes were (still) packed.
It seems that the reflux medicine is either not working or I have not been able to get the dosing correct for the gas medicine. (I'm sure Iris will appreciate my writing about her gas pains on the internet). Yesterday I was concerned because she vomited and we were told to call the Cardiac Clinic if vomiting recurred. So on our first full day home I was convinced that she was having heart failure and that I screwed up her medications. Today seems to be going a bit better but reflux rears its head in the afternoons (so they say) so it's too early for me to say for certain how today is going.
Tuesday, June 4, 2013
thank you
There has been a tremendous outpouring of support for Iris and for us. I'm sure there is no way that we'll have time to send thank you notes to everyone, so please accept this post as a big "thank you." The last three weeks have been a huge emotional roller coaster ride and surely we're not even through the half of it.
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