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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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.

June 15, 2009

Gift Ideas for Preemies and Hospitalized Children

Posted in Gift Ideas, Hospital Life at 2:42 pm by bk2nocal

I came across a post on Frugal Gifts for Preemie Parents today over at Baby Cheapskate and thought it was such a good resource post that I should share the link here.  The woman who wrote the article speaks from the experience of having a preemie, and I would definitely concur from my own experience as a parent to a preemie.  But, now, writing from the perspective of a mom with a child in the hospital, many of them are just as applicable!  I know that I have a ton of people who ask what they can do, how they can help, etc. and the suggestions she gives are ones that I would not necessarily offer up to people, but that are wonderfully useful and helpful!  I am sure that others of you will have someone who has a preemie in their lives and this is a great resource for you to choose gifts.

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.