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

New Assist Device Brings Joy to One, Hope to Others!

Posted in Berlin Heart, Research and Development at 9:33 pm by bk2nocal

A while back, I wrote this post about a new assist device that was being researched, the Synergy Micro-blood pump.  Today, on the CCF email listserv someone posted this news story about a teen who has been given a new sense of freedom while he awaits a transplant.  This device, the HeartMate xVE, is the first one offering patients the chance to GO HOME while awaiting a transplant!  This is truly a miracle for those who could only look forward to sitting in a hospital bed with a large, cumbersome device to drag around with them if they were to go anywhere in the hospital.  And the fact that these devices could last up to a decade is amazing!  In 2003, 450 people died (out of 2000 on the waiting list) died while awaiting a heart.  These devices can provide an extension that offers both quantity of time and quality of life.  That is an amazing gift!

 

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?