November 17, 2009

Preemies Deserve a Voice…

Posted in Cardiomyopathy, Health, Hospital Life, Itty Bitty Baby News, Preemie Development, Research and Development at 7:11 pm by bk2nocal

Today is Prematurity Awareness Day and I am participating in the Bloggers Unite “Fight for Preemies” campaign. I figure I will share my story and encourage those of you reading to explore the March of Dimes website for more information on how you can get involved and help the cause.  It may surprise you to find out that the US “scores a “D” and fails a half million babies each year” according to the March of Dimes.

My pregnancy was nothing special.  I was pretty normal in every way except for a creeping blood pressure that seemed to get higher and higher as the pregnancy went on.  My doctor was concerned, but not overly fearful until I went in for my 32 week appointment.  My blood pressure was elevated even more than before and the baby’s heart beat was showing some irregularities.  At first, he was going to send me home and have me report to the hospital the next morning for further fetal monitoring, but just as I was getting ready to leave, he decided that I should go to the hospital immediately to “play it safe”.  So, my husband drove me over and I was hooked up to a fetal monitor.  The heart beat continued to show irregularities and after a couple of hours, my doctor came by and told me that he was going to have me airlifted to Sacramento where they had a NICU available “just in case”.  Both my husband and I were struck with fear.  This was our first, and probably only, pregnancy (I am “advanced age” at 41) and we could not imagine losing our baby – and my husband was worried for my health.

That night, I was flown via helicopter to Sacramento, where I was once again hooked up to a fetal monitor.  My sister met us there and the doctors said that I may have to remain in the hospital for up to two or three weeks while waiting to give birth.  The hope was to “keep the baby inside as long as possible”.  The next day there were doctors in and out and in and out and finally in the afternoon, they said that the heart beat and my blood pressure were not recovering, so they were going to go ahead and take the baby C-section that night.  It was February 19, almost a full two months prior to the due date.  We were visited by a nurse who gave us the low-down on what to expect from a baby only 32 weeks along – and none of it was terribly comforting.  We were past the most crucial point in the pregnancy, but there were still possibilities for difficulty breathing, problems with eyesight and/or hearing, etc.  We were prepared for the worse when I rolled into the operating room that night.

Mackenzie beat the odds – she came out breathing on her own and was able to maintain that state.  She was on oxygen for a little while, but in every other way, she did just fine.  She was only 3 lbs. 2 oz., which by preemie standards is pretty big!  🙂  She had to have an IV and receive her food through a tube.   But, she checked out as having all her internal organs developed normally and she progressed along quickly.  My husband and I stayed with my sister and spent hours and hours at the hospital, scrubbing in to the NICU, helping with diaper changes, temperature taking, bathing and feeding.  We practiced breast-feeding and bottle-nippling all under the bright lights of the NICU, with Mackenzie in an incubator for most of the three weeks she was in the hospital.  At three weeks, and weighing just under five pounds, Mackenzie was released.  We were so excited to bring her home, even though we were woefully unprepared.   We had no bassinet (thankfully, our friend bought us one as a gift and had it ready to go), we didn’t have preemie clothes (again, my sister and friends bought us enough to get us going – my first baby shower actually came while she was still in the hospital!), but we were excited to be bringing her home.  We had medications to give her, strict rules on washing up before touching her (preemies have underdeveloped immune systems) and routines for taking her temperature each day to check for infection.

We did well for three weeks – we had weekly pediatrician appointments and we didn’t leave the house much for fear of exposure to infections, but she seemed to be doing well.  Then, in the third week, she started to have some problems breathing.  At her regular check-up we pointed it out and the pediatrician told us to just keep an eye on her.  When it seemed to get worse overnight, we made an appointment for the next day.  She was tested for RSV – a viral infection that she received a shot for before leaving the NICU – and the result was negative, but the pediatrician sent us to the emergency room immediately “just in case”.  She was tested again there and the result came back positive this time.  She was admitted and put on breathing treatments and I moved in to the hospital room with her.  We spent a week there – uncomfortable, exhausted and just plain depressed – she didn’t seem to be getting any better.  Finally, on day five, they decided she may need to be intubated and she was put on a helicopter to Sacramento (same nurse flew her down that flew me down for the pregnancy) and my husband and I got on the road to drive the two hours.

We received a phone call about an hour into the trip from the admitting doctor in Sacramento and he verified he was going to have intubate her and asked “has anyone talked to you about her heart?”  My own heart dropped.  He went on to say it was five times the normal size and it was sitting on top of her left lung making her breathing very labored.  We were left to wonder what all this meant on the rest of the drive down.

We soon discovered that she had this thing called Cardiomyopathy and that she was, as the doctor in Sacramento put it, a “very sick little girl with a very sick big heart”.  They went back and examined her X-ray that was taken in the NICU and because X-rays are easily distorted in little ones if they take a big breath, it was difficult for them to tell if her heart was enlarged at birth or not.  It had obviously gotten bigger since then either way.  But, now she would have to be on a ventilator for weeks.  Long story short, she was treated with oral medication, but failed to recover and ended up having a heart transplant on July 7, 2009.

I would like to know that every baby born, especially preemies, are tested for congenital heart defects!  These little ones are struggling enough when they come into the world, they don’t need a missed heart defect to make things more difficult.  This NY Times article talks about the “pulse oximetry” or “pulse ox” as they call it in the hospital and the findings of a study that shows it can be especially effective in catching and solving a heart issue in a newborn baby.  Although this is not just a preemie issue, I feel that it is something that can help a lot of preemies who are fighting a fight they can’t win without timely intervention.

So, let’s give all babies a voice and get these tests done – request it for your baby or tell a friend to request it for their baby.  And if it shows any abnormalities – get a closer look!

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November 13, 2009

Where did the month go?

Posted in Habits, Health, Itty Bitty Baby News, Organizing at 6:54 pm by bk2nocal

I can’t believe it has been almost a whole month since I last posted here.  I apologize for my absence, but its been a little hectic around here.  With all the unpacking (which isn’t nearly done yet), trying to stay caught up at work (which I’ve pretty much been failing at), trying to establish a new routine now that we are home (I have one written up, but can’t seem to stick with it), and just plain being tired all the time, I can’t seem to catch my breath.  I wonder sometimes if it is really that I have that much to do or if it sometimes is just that I don’t want to do what I have to do (I know the latter is true at least part of the time).  I know that those of you reading who have had or do have sick kids can relate to the fact that life becomes a sort of treadmill.  The medications, the doctor’s appointments, the constant worrying about their health (is that just a sneeze or is it the start of a cold?  is that just a regular cry or is there something more to it?)…it all becomes a little overwhelming sometimes when you realize that you can NEVER get off of this treadmill.  Its constant and it will continue for the rest of their lives.  And we’re relatively lucky.  We don’t have a feeding tube with scheduled feeds, we don’t have infusions to do, we don’t have special food…but we have is enough to sometimes put me on edge.

I think part of it was that it was easy at the RMH.  Everyone there was going through the same sorts of issues.  There was nothing strange about our schedule or our inability to go shopping with her or take her around other seemingly healthy babies.  But, then you get home and when you’re out and about you see everyone else with their kids in tow at the mall or Target and you realize that you have to plan ahead for these trips to do them without her because you’ve received your letter of warning about flu season and going to crowded locations.  At least M isn’t in school.  The letter also advised all transplant patients to home school until flu season is over and home school siblings until flu season is over.  At least we don’t have to worry about how to make that work.  But, its been a tough month of adjusting.  I had a little breakdown the other night because she sneezed more than usual that evening and then awoke in a screaming fit of what seemed like epic proportions…I immediately flashed back to our last midnight trip to Stanford from my sister’s house, with her breathing labored and her temperature spiking and I broke down.  She wasn’t even running a temperature it turned out and I think she just woke up ravenously hungry (I think she is going through a growth spurt) and wanted to eat.  But, I was tired and I panicked and I just couldn’t catch my breath or stop my sobbing.  Even once she had calmed down, I still couldn’t shake that feeling of panic.  I knew it was totally irrational, but I still couldn’t stop it.

I am doing my best to set up some routines so things get done around the house and at work and for M.  Its easy to let things go and then feel like things are piling up.  And sometimes it isn’t even that there is that much to do, but that I start the day already so exhausted that I can’t get motivated to do what needs to be done.  And sometimes, I feel like I accomplished quite a bit, but for every one thing I accomplish, another five get put on my list of to-dos.  And then things come up that are not part of the already stressful plan – the dog gets bit at the dog park and needs stitches and medicines (on top of M’s medicine regimen), the car’s water pump starts to go out and needs to get fixed (on top of our already stretched too thin budgeting after lost wages), the unpacking quickly creates chaos with lost paperwork and a disorganized mind, M starts to outgrow her 0-3 month clothes, requiring I find the tub of 3-6 month clothes in the chaos that is our garage presently and wash and put all of them away (the growth is great…the finding and washing and putting away is the difficulty), M starts to eat solids requiring a new regimen of figuring out what foods and how much and when we should feed her and a realization that eating will only get more complex as she grows and we are not at all prepared for it, being people who eat out often, don’t grocery shop enough and skip meals more than I would like to admit.  Many of these things are not any different than any other parent goes through.  After all, M is still a baby, she’s just a baby with a few more requirements in her day.

So, as we draw closer to Thanksgiving and a week off from work for me (well, not exactly, since I have to travel to North Carolina for work the Thursday prior to Thanksgiving and I don’t get back until the Tuesday before Thanksgiving, but close enough I guess), I am realizing that I need to get my world at home and at work back under control.  I need to figure out a routine that works for me and my husband and M.  I need to be vigilant about taking care of myself as well as M, as I can’t risk getting sick (reminds me, I need to start taking vitamins and Airborne for this trip to try to avoid any germs that might be traveling along with me in the plane, hotel, etc.).  M has got her flu shots – both regular and H1N1, and my husband has got the regular flu shot, but I’ve got neither yet.  I need to do that before I travel as well…and better sooner since its not even effective until 10 days after you get it (guess I kind of missed the boat on that one).  I need to find all the bills I need to pay and figure out our finances after our recent car troubles and extra spending for moving.

On top of all this, I now need to start figuring out the holidays.  Where will we go (where can we go?)?  For how long?  How are we going to pay for gifts?  Who will be coming to see us?  When will they be coming?  The holidays are always a bit of a stress, but this year is going to be just a little bit worse in all aspects.

So, I have decided that I need to start making lists – daily lists – of things that have to be done – right down to giving M her medicines the three times a day she gets them, giving her the solids she gets the two or three times a day she gets them, feeding the dog, etc, etc. because I feel like if I don’t have it written down, it just may not get done.  I tried to start this earlier this week, and I would get a few things marked off for the morning, afternoon and evening, but most of the stuff has built up over the course of the week while I was unpacking stuff in the garage, organizing the baby’s room with the new (used) furniture we got this week, catching up on laundry, etc.  But, I will start again next week and see if I can get just a bit more done each day…

This weekend the hubby and I are walking a half marathon to raise money for the Ronald McDonald House.  We have not done the training we should have in preparation, but we’re going to go and do the best we can.  The worst that can happen is we don’t finish in time and we get kicked off the road prior to the finish line…but we still raised the money and we’ll still be going to Monterey for the weekend…so, its all good.  My sister is going down with us to watch M while we walk.  And then my hubby is staying at my parent’s house on Sunday and Monday with M because she has a biopsy on Tuesday morning and that will save us about 300 miles or so of driving!

Life is whirlwind and I feel like I’m getting a little blown over right now.  Hopefully, the winds will die down to a nice breeze in the coming months.  I know the winds will never fully dissipate, but who doesn’t like a nice breeze?

October 18, 2009

Moving…and an update on Ittybittybaby

Posted in Cardiomyopathy, Habits, Health, Itty Bitty Baby News at 11:19 am by bk2nocal

I hate it….but, I’m excited to be back “home”.  We are in the midst of unpacking and setting things up and M has officially moved from Pack n Play to her first crib!  Its been very exciting and she seems to like it.  I’m sure it has to be more comfortable to be on a solid surface.  She has her ladybug bedding and her ladybug lamp and a LOT of tubs and boxes in her room right now.  But, at least she has a solid place to sleep!

We had some disappointing news at her clinic appointment last week.  She just isn’t gaining much weight.  I guess I appropriately named this blog – she truly is ittybitty.  She is almost eight months old now – and even adjusted, she is almost six months old and last week she only weighed 10 lbs. 11 oz.  She is still swimming in the 0-3 month clothes.  They are a bit concerned and they upped her calorie mix again – to 30 cals per oz, but then she just wouldn’t eat.  I think it was too thick or too strong-tasting, but she just wasn’t eating much of it at all.  So, we went back to the 28 cals per oz and she seems to be eating much better now.  She has been terribly fussy and wouldn’t nap the past week or so, but she’s been carted from my sister’s to appointments to my parents and then moved up here and had my husband’s parents here the last couple of days and I think she’s just been really overstimulated.  She ate great this morning and has now been napping (at her normal time – hallelujah) for an hour this morning.  Let’s hope it continues!

I thought I would post a positive article to end this today and I hope to be posting more regularly now that we are settled!

http://www.dailycomet.com/article/20091017/ARTICLES/910179970/1212?Title=Houma-boy-gets-his-wish-to-meet-the-Saints

October 10, 2009

Voice from the Past…

Posted in Health, Hospital Life, Itty Bitty Baby News, Transplantation at 10:03 pm by bk2nocal

I realized that I have been derelict in posting here…so, I wanted to catch up a bit.  But, my mom went into the hospital today for high potassium levels and erratic pulse and EKG, so I’m going to post my last carepages update here at this blog…this is from September 29.  M has since not only got out of the hospital, but we were officially “discharged” from LCPH and the RMH this past week.  We are still moving stuff out of the RMH, but will hopefully complete that process tomorrow and be living with my sister in Davis until we find a place to live.  The title of this Carepages post was “The Year of Living Fearfully”:

That is what I feel like we’re doing right now – having the year of living fearfully. Everything tends to be scary when you’re unsure if your daughter is in rejection or not in rejection, getting some illness due to immunosuppression or not getting some illness due to immunosuppression, at the right level of medications or not at the right level of medications. There are so many “what if’s” running around your head all the time that when something goes wrong, it can feel like the whole world is coming down on you. That is what happened early on Sunday morning…just so you don’t have to live fearfully until I finish telling the story – all is fine now with Mackenzie…

On Saturday, Jason brought Mackenzie to my sister’s in Davis to visit since I had been sick in Chico the entire week before that. I drove down and we were going to stay the weekend there and then go our separate ways for another week of work. But, Mackenzie had other ideas. She was a little fussy all Saturday night, restless instead of restful sleep, a little warm (but it was hot in Davis that day/night), etc. At 4 a.m. she woke up for a third time, I fed her a little and she remained fussy, and then she threw up all over (a relatively rare occurrence now that she has a new heart). We took her temp and it was 101.7, so we called Stanford and they said to drive her in to the Emergency Room there and they would check her out. So, we left my sister’s and drove the hour and a half or so to Stanford. Mackenzie slept most of the way, but the one time she woke up, she dry heaved/spit up a little and seemed to be in labored breathing afterwards. It was pretty scary, but luckily, we were within 20 minutes of Stanford when that happened. I think both Jason and I were in full panic mode by this time, and our hearts dropped when the labored breathing started.

We got her to the Emergency room and the cardiologists on call (Drs. Lewis and Hollander – both of whom we know quite well after being in the hospital for so long) came in almost immediately, said she looked pretty good and they would start running tests on her. The fact they said she looked pretty good just goes to show how much we have come to expect Mackenzie to be healthy already! To us, she looked horrible! I guess this is a good thing though! We don’t think back to what she looked like before the operation…they both said “Wow, she has gotten so big – she looks like a baby now! Good color!” They began drawing blood, etc. and put her on the machines to track her vitals.

We were in the Emergency room that day for about seven hours waiting for a room on the third floor to open up. They swabbed her for flu/respiratory virus, tested her line for infection, etc., etc. They finally gave her Tylenol (I think this was just a mistake on their part – they may have thought we had given her Tylenol before we left home) when her temp hit 103 and within 30 minutes, she seemed to be feeling better, her temp was going down, etc. So, lesson learned…we need to have some Tylenol at home to give her when she runs a fever.

They did an EKG and when we finally got a room on the third floor, Dr. Hollander did an echo and all looked good with her heart. They think it was just a “normal baby-thing – they get temperatures or stomach bugs every once in a while,” but with a heart baby, everything normal becomes a huge scare! Hence, our year of living fearfully. I am hoping that after a year, this fear will somewhat subside. I think its made worse right now by the fact that we don’t know where Mackenzie is rejection-wise right now. It will either be made better or worse by the results we get this week. It is good that her heart seems to be functioning fine, but its still a constant worry that she could be in rejection and not show any real symptoms.

Mackenzie should be getting out of the hospital today as long her cultures from her line come back as clean. It seems that this was just a normal, baby thing and we should not be overly concerned. She will still get her biopsy on Thursday and we will know where she is rejection-wise on Friday and we will either be settling in for a longer stay at the Ronald McDonald House and figuring out how to deal with the rejection OR (and this is the one we’re hoping for), packing to move out of the RMH and quickly finding a place in Chico to move into! Either way, it will be nice to know.

August 7, 2009

I hate rejection…

Posted in Gift Ideas, Health, Itty Bitty Baby News, Transplantation at 12:07 pm by bk2nocal

For a whole new reason now that I have a daughter with a transplant.  The biopsy came back with moderate to high rejection (Level 3, I believe), which put M back in the hospital for three days for infusions of a steroid.  If it were not for the biopsy, we would never know that she is in such high stages of rejection.  She is doing great outwardly.  Good vitals, good tolerance of feeds, and she has even started to take more from the bottle.  But, inside, her body is fighting off her new heart as a foreign invader.  This means that she will have to have another biopsy sooner than planned.  It will be scheduled for a week from this coming Tuesday, so about two weeks earlier than originally planned.

This level of rejection doesn’t seem all that uncommon and most of the people I have talked to have said that after these infusions of steroids, the numbers start to go down immediately.  According to statistics in our heart transplant manual and The Experience Journal from Children’s Hospital Boston, nearly every transplant patient has at least one period of rejection usually in the first year.   Hopefully this will be what she needs and the next biopsy will show better numbers.  I’m just thankful all her function and vital signs, etc.  look good.  So, she at least doesn’t feel bad even though she is going through rejection…

It is a somewhat stressful process…this not knowing.  The doctor said they are currently testing out ways of checking for rejection that will not require biopsies, but none are far enough along to be expected for a few more years.  But, he said that by the time she is a teenager, we hopefully won’t have to go through this.  Medicine is advancing all the time, and we are already so lucky to be doing this now instead of many years ago when they didn’t know as much and weren’t able to solve the problems as quickly and as easily as they can now.

We should get out of the hospital today and get to return to the Ronald McDonald house.  We are currently just waiting for her to have her echocardiogram done once again and the orders written for release.  Thank goodness!

The other area of stress right now is worrying about infection.  I am ordering signs for her car seat, stroller and crib that say “Please wash your hands before touching mine”.  They are available from My Tiny Hands.  (As a sidenote, these also make great gifts for parents of preemies as they are so prone to illnesses in their first few months of life.)  I also carry around Purell everywhere I go.  I may write in on the signs that she has had a transplant – just to make sure that people know its not just some paranoid germaphobe thing (I think a lot of people think that those signs are just suggestions, not requirements) but an actual health threat.  I’m sure people are put off by it at times too.  I know prior to this experience I may have been prone to some eyerolling based on these signs, but now I really understand the importance of them!  Never assume that its just overprotective parents…

Well, still waiting for the echocardiogram…and then to the RMH if all looks okay!

August 4, 2009

Biopsy #1 Done…Results Tomorrow!

Posted in Itty Bitty Baby News, Transplantation at 11:18 pm by bk2nocal

Today was M’s first biopsy post-transplant.  Older kids would have had three by now, but because M’s veins are smaller and more difficult to navigate, they only do them once a month instead of once a week.  All signs are positive at this point.  The biopsy showed good heart function and while they were there, they checked the arterial walls to get a baseline.  I guess that hardening of the arteries is a problem for many transplant recipients.  Having a baseline allows them to track Mackenzie’s arteries and start her on a drug regimen if her arteries start to show signs of hardening.  This approach has been successful, so I’m glad they have the baseline now.

They also made a few changes to her drug regimen.  They went up on her cyclosporin a slight bit because her readings are still slightly below where they want them to be.  They went down on her prednisone slightly – she is on a long wean from it.  She is still on her methadone wean as well, but will be done with that in another week.

She is eating a lot – 100 ml at a feed, but only taking about 20-40 ml from the bottle.  The rest has to go through her NG tube through a pump.  We are going to call Occupational Therapy tomorrow to make an appointment with them to work on her feeding issues.  I feel like she will be good once we move to solids because she really chews on the nipple more than she sucks on it, but who knows?  I am hoping OT can give us some ideas on how to improve it as putting the formula through the pump is time consuming, but for now, we’ll take it.

She has not gained any weight since she got out of the hospital, which is a bit disappointing as well.  But, I am hoping that upping her feeds to 100 ml from 70-80 ml and the increase in the calorie load in the formula from 24 to 26 calorie will make this week a big week for her growth-wise.  She is so skinny and little still, its a bit disconcerting when we think about how old she is.  I don’t really think about it much until I see another baby that is younger than her, but seems so much bigger than she is!  I figure she will probably always be a bit on the small size, but being almost six months old and still in newborn clothes is a little ridiculous!

We will get the biopsy results for rejection tomorrow.  We are optimistic since all of her heart function has been very good on both the echoes and during the cath today.  But, it will be good to know for sure.

So, more on that tomorrow!

July 30, 2009

Thankful for the Daily Grind

Posted in Itty Bitty Baby News, Transplantation at 11:12 pm by bk2nocal

Well, things have been moving right along in the past few weeks!  M got a heart on July 7.  She came off the ventilator about a week later, was moved up to the Intermediate ICU for about a week and came home to the Ronald McDonald house with us this past Saturday.  It has been a whirlwind.  We are just starting to somewhat figure out the meds schedule, etc. almost a week later!  I’ll give you an idea of our typical day:

At 7:30 a.m. we are supposed to take her vital signs – blood pressure, heart rate and temperature.  Right now, we can only do the temperature part because our custom made blood pressure cuff and machine has not been delivered.  This means that we have to go to the heart clinic at the hospital to have it taken.  We did this three days in a row at the start of the week, but the cardiologist said we could take today off and go in tomorrow…take the weekend off and go in on Monday.  It was nice not to have to get up and immediately leave the house this morning!

At 8:00 a.m., she gets the bulk of her medicines.  Right now, she gets cyclosporin, cellcept, magnesium glutonate, a shot of lovanox (my husband typically does that), predinisone, nystatin (a mouth wash that keeps her from getting thrush) and pepcid.  All of these have to be loaded into syringes and then placed in her feeding tube.

At 9:00 a.m., she gets methadone.  This is temporary as she is on a wean from it right now and will be done with the wean in the middle of August.  I also have her getting her 1/2 tab of baby aspirin, which needs to be crushed and then dissolved in water and given through syringe.

At 10:00 a.m., she gets lasix (a diuretic), enalipril (a blood pressure med), and iron.  I could give these all at 8 a.m. too, but it just seemed like too much medicine all at once.  This way, she at least gets a couple of hours to get the first stuff out of her system.

We are letting her eat on her own schedule right now, just to give her a bit of a break from the constant “messing with” she was getting at the hospital.  So, we let her sleep until she wakes up crying and then we feed her.  Sometimes it coordinates with her feedings, sometimes it doesn’t…so, we aren’t on a really tight schedule at this point.  She will also sometimes go 4-5 hours between feedings, while other times she won’t even make it 3 hours.  But, I feel like she needs some good rest, so the longer sleeps are okay with me.

As the day goes on, she gets more medications.  She gets the methadone every six hours right now.  She also gets the magnesium three times a day, so she gets more of that in the middle of the day.  She gets a nystatin treatment (we put it on a little dental swab and swish it around her cheeks, tongue and gums) three times a day as well.  At night, we do it all again starting at 8 p.m., but she gets septra at night as well as the meds from the morning, but no aspirin.

I have read different people’s ideas about keeping track of all the meds – color coding, etc.   But, it seems easier to me to just have a daily schedule sheet where I check them off as I give them.  I have it done hour-by-hour and we also record her diapers and her feeds and any other notes on the sheet. That way we have one sheet and we know what the other person has done.  I think it will be helpful to anyone who comes in to take care of her in our absence as well.

We had our first clinic appointment on Wednesday.  She had to go to the Short Stay unit to get a blood draw first.  This is also where we will go on Tuesday when she gets her infusion of some other medicine that has to be infused.  After that, we went to the heart clinic and she got a LONG echocardiogram (they were training a fellow on the machine and it took a really long time – longer than I remember taking in the past) and then we met with the docs for a short time.  They said that everything looked good.  They made a slight adjustment to her meds – up slightly on the cyclosporin, down a little on the predinisone (I guess she is being weaned off this as well…but, it will be a slow wean), everything else stayed the same.

We are constantly a bit nervous.  I mean, its hard to know what is going on in a five month old.  You can’t ask them how they are feeling or get any feedback from them.  So, when she is fussy, we get worried.  When she sleeps for a while, we are worried.  Whenever anyone gets close to her, because of her immune compromise from the meds, we are worried.  Its really tiring…but, its great to have her home.

She has her first biopsy on Tuesday and I THINK I will feel better after that is done as we will REALLY know the level of rejection she is in.  The echos are somewhat indicative, but the biopsy will be more specific.  And it will just make me feel better to know for sure.

Other than that, she is still having to take half her feeds through her NG tube, which is a little disappointing, but she’ll get better at feeding with time I’m sure.

Well, enough time spent typing this…back to the daily grind!  A daily grind I am sooooo thankful for!

July 18, 2009

M Got a Heart!

Posted in Cardiomyopathy, Itty Bitty Baby News, Transplantation at 11:47 am by bk2nocal

I have not posted in a while because things were pretty hectic in my life as of late.  As those who read this blog know, my daughter was suffering from dilated cardiomyopathy and she was admitted back into the hospital with cardiogenic shock on June 1.  She was listed for a heart transplant on June 11, after the pre-transplant team decided her heart would not recover and was too big to allow for her lungs to function on their own.  She was doing okay until about the fourth week into the hospital stay and then she took a turn for the worse.  We spent three miserable days in the PICU watching her get put on drug after drug to try to deal with her blood pressure, tachycardia, lack of oxygen saturation, etc.  Finally, the cardiology team decided to move her into the CVICU, where they gradually weaned her off many of the drugs and got her back into pretty good shape by the time her fifth week in the hospital began.

On July 6, we were informed that there was a heart for M.  At first, they were going to do the surgery that night, but then it was postponed until the next afternoon.  M was in surgery for about six hours total, was on the bypass machine for less than two hours and the new heart kicked right in.  She came back from surgery looking good, but with a pacemaker because the new heart was not beating fast enough.  She did good post-op and came off the ventilator on July 14, chest tubes and pacemaker wires out July 15, moved to the Intermediate ICU July 16 and we are scheduled to be released to the Ronald McDonald House on Thursday, July 23!

It has been a whirlwind of activity!  M is doing well.  She is on 11 medications, which is actually much less than I thought she would be.  Some she takes twice a day and others only once a day and a few three times a day.  The hospital provided us with a daily schedule that will really help out with keeping track of things and we will have to stay at the Ronald McDonald house for three months to make sure that the heart and M is doing well.  She is still struggling a little to get all her feeds by bottle, so she will probably go home with an NG tube in to help with that and insure that she gains some much needed weight (she is five months tomorrow and only weighs eight pounds!) and grows a bit.   She was a preemie, but even for three months, eight pounds is not nearly big enough!

I plan to keep this blog going and posting new information on cardiomyopathy, trasnplant, etc.  I know there have been some stories in the news as of late, so I will have to catch up with those over this coming week!  Our miracle has happened – M has a new heart and will now be able to get out of the hospital – and all very quickly for such a small baby!  We are very, very, very thankful!  And now we’re looking forward to learning a whole new set of skills as we take her home!

June 20, 2009

From Germany with Love…The Berlin Heart

Posted in Berlin Heart, Cardiomyopathy, Itty Bitty Baby News, Transplantation at 1:40 pm by bk2nocal

Although M has now stabilized and we think she will be able to go without any “bridging” devices, when there were doubts talk began of devices that will allow her to stay alive even with a non-functioning heart.  It used to be that the only available “bridging” device for heart patients was the ECMO.  Although this machine is effective, the length of time a baby can be on it is limited – usually a matter of weeks.  Because infant-sized hearts are often not available that quickly, another “bridging” device – the Berlin Heart has begun to be used more frequently.  This device allows children to be on the bridging device for longer periods of time AND allows them to live semi-normal lives, moving around, playing, doing all the normal kidstuff they usually would be doing, while waiting for a transplant.  It is truly amazing what medicine technology can do today – and we are thankful for each new device to which we are introduced – as it means that M has a better chance of both surviving and thriving despite her big heart!

Right now, it is looking like M will not need to be placed on the Berlin Heart, as her heart is functioning well enough to not need external interventions.  But, this recent story on a baby in Canada, not only can the Berlin Heart help in cases of bridging, but it can also be used to heal a heart!  If you’re craving more information and an example of the heart being put into use in an infant, you can read this press release from 2007 on an infant in Florida…

June 12, 2009

Coping Mechanisms

Posted in Cardiomyopathy, Hospital Life, Itty Bitty Baby News at 7:42 pm by bk2nocal

Its strange to be spending so much time in a place where emotions run so high and to see different people coping with it in such different ways.  Obviously, not all of us are in the exact same situation, but they are at least similar – children in the hospital for long periods of time and with serious conditions.  Many are far from home and some do not have any support system other than those they meet at the hospital.  My husband and I are lucky.  Although we are away from home, we have a strong support system, with many friends and family in the area.  Rare is the day we do not have someone to visit with outside of those we meet at the hospital and ourselves.  It is good to have distractions and people who are just visiting and not here continuously.  I can see where this would become all-encompassing if you did not have an escape.

I have always been one who has thought that I should let the experts do their jobs.  I know that doctors are human and they can make mistakes, but in this environment, where there are so many people working on the same case and so many checks and balances, I think that mistakes are probably relatively rare.  And I know that cardiomyopathy is pretty rare and there are not answers to every question.  I imagine that must be frustrating for the doctors as much or more than it is frustrating to me.  Today, the doctors spent four hours replacing a Central Line in M after her last one became dislodged.  Because she is so small, this is a difficult process and she went through a number of doctors attempting to do it before they finally called someone in from the cath lab to get one placed in her groin.  She has sutures in her other groin and in her neck from previous attempts and she looks like a little pin cushion or voodoo doll with all the holes.  I guess I could get upset and impatient and complain that they did a poor job, but it seems to me that they all were doing the best they could.  They felt bad and were extremely apologetic.  They looked tired after the four hours.  Their jobs are much more difficult than I could probably ever imagine and I can’t think of complaining to them about the way they do the job.  Others are not so understanding.  They may complain and demand explanations and that may make them feel better.  It makes them feel more in control of the situation.

I guess for me, I’m not supposed to be the one in control of this situation.  My daughter is sick, with a very serious illness and I don’t have the training or experience or knowledge to be in control of this situation.  Its hard to not be in control, especially when it comes to your own children…but, it has to be done.  I don’t have any choice but to relinquish control if I want what is best from a medical standpoint.  I wish I wasn’t in this situation, but I am, and I have to do what is best for her, not what makes me feel better about myself or my situation.  I consider myself to be a pretty intelligent person, but I didn’t go to med school and I didn’t get hired by Stanford to practice medicine.  All I can do is be there for her, make sure she has what she needs from a personal standpoint – blankets, toys, etc. and then let the doctors do their job and hope for the best.

So, another day in the hospital, where human behavior is at its best (a family that had a baby next to ours brought Mackenzie a gift this week – a cute little pink outfit and just dropped it off for her while we were out) and its worst (people complaining about and to doctors and nurses about things beyond their control).

I’m thankful for all of the people who choose to go into the medical profession and choose to work with children in seriously difficult situations.  It can’t be easy and I certainly could not do it myself.  I can’t imagine working with sick kids all day and being able to keep a smile on my face – but we have many nurses and doctors who do just that.  They make you feel confident and comfortable and well-cared-for.  And, that, right now, is really all I can ask for.

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