Monday, December 27, 2010

Happy Holidays

We've had a great few weeks since C has been home from the hospital.  Its been different having a baby that eats in 20 minutes instead of an hour and 20 minutes.  We took C to the houses of both sets of grandparents.  Taking him out of the house was surprisingly liberating.  I was very excited to have him experience life outside of our bedroom and the hospital.  The world is growing for him, every day.  The beginning of January continues the hectic medical schedule we've had.  Hopefully we're on the downward slope of the bell curve.  We have appointments with our pediatrician for Synagis, the urologist for his kidney reflux, the GI doc for his tummy reflux and the cardiologist for his mitral valve reflux... I know its regurgitation, but I was on a reflux trend so I thought I should keep going with it... *grin* OH well.. its probably not as funny as I think it is... We're still lacking sleep, I assume that is normal for parents of a 4 month old.  We're not allowed to let him sleep through the night quite yet, I'm hoping that will change soon along with perhaps not having to fortify his bottles anymore.  If we can stop doing that I can pump less and breast feed more.  That would be lovely... 

Tuesday, December 14, 2010

We're home...

So we've been home for about 36 hours now and we're very happy, but still trying to catch up on sleep.

I'll post when my brain starts working again.  Once we stepped down to the floor I went from getting 6 hours of sleep per night to 3 hours of sleep per night.  Adding that into the all nighter in the PICU and I'm just plain exhausted... But also thrilled.  C used to take about 1.5 hours to feed, now we can feed him and give him meds in under 25 minutes... its amazing.

Sunday, December 12, 2010

Steppin' on down to the Cardiac Floor

After C broke the pacer wire it was decided he really didn't need it anyway.  The wires were removed and about 10 minutes later so was his chest drain.  Almost as soon as the pacer wires were removed the PVCs stopped.  It seems they were somewhat irritating for his heart.  Removing the chest drain allowed a little bit of air into his chest cavity causing a slight pneumothroax.  The doctors were all set to release us today, but one of the residents didn't agree.  She wants to wait until Monday when she can talk to GI to confirm how his remaining reflux issues should be handled and wants me to have a consult with lactation for eventual breast feeding.

They aren't allowing me to breast feed right now because they want to fortify his feedings still.  I'm a bit frustrated by this.  Without fortification, C gained about 30 grams a day.  But because his volumes weren't what they expected for weight gain if the breast milk had the average of 20 kCal per feeding, they decided he wasn't getting enough calories.  I've expressed my confusion over this given his weight gain both in the 2 days since he started eating again (and his intake is up significantly from that point) and his weight gain prior to the repair when we were in for feeding issues.  In both instances he's not taking their goal volumes, but he's gaining weight and isn't dehydrated.  She carefully explained to me (again) that breast milk has 20 kCal.  I interjected the word average at this point, because it isn't that every woman's breast milk has 20 kCal, its that they have 20 kCal on average.  

I really wanted to be able to trial breast feeding in the hospital to see if he ate long enough, had adequate weight gain and adequate output.  I'm frustrated that they aren't willing to try that when he's clearly gaining weight even when his intake isn't what they were wanting.  I'm even more frustrated that they only prepped minimum intake requirements each feeding and I had to ask for more.  Overnight when I slept, they only fed the minimum even though he would take more.  The nurses had orders for 45 mL per feeding ad lib so that's what they tried to have me do.  Then I get stuck fortifying because those orders meant his intake wasn't around 112 mL per feeding which is what they were looking for.  C wants to eat about 60-80 mL per feeding and I think he'd do just fine on that.  I wish they'd let me test it.  It also seems that C is unlikely to cry when hungry as a rule since we've always fed him every 3 hours whether he is awake or not.  I hope he gets to demanding food soon, it would be helpful to know when he's ready to cluster feed for the evening.

I'm going to try to talk to the resident again, but I'm afraid that each time I do, I  prolong our stay here.  Maybe I'll try and work with my pediatrician to deal with this.  Though its a greater risk of cold/flu infection to go there.  *sigh*

Saturday, December 11, 2010

We don't need no stinkin' pacemaker

C has decided he no longer needs the pace maker. So at 10 o'clock at night, he snapped the negative wire on the ventricle pacer.  The ventricle was the only thing being paced, so the pace maker became useless.  Worse, because it didn't have both the positive and negative wire, the pace maker was not sensing the beats and fired once per second.  C was screaming and our nurse kept saying "but it shouldn't be firing, he's not at 60 beats per minute".  TheMan said "I think by definition, broken means not working correctly".  The nurse went and got the resident on the floor who also stood looking at the pace maker.  I again pointed out the green pacing light was flsahing instead of the orange sensing light.  She decided (finally) to just turn the pacemaker off.  Silence fell as C stopped screaming since he was no longer getting shocked.  The lead up was a bit frustrating, but having the pace maker off is both nerve wracking  and fantastic.

Thursday, December 9, 2010

Happy again!!

Our happy baby is back and he's flirting with anyone who gets within 20 feet of him!  Its been a pretty good day all around in the PICU.  A couple I've been talking to finally got some good news, another couple finally graduated to their floor and C is a happy baby.  This is a banner day.  Yesterday they turned the pacemaker down to 80 and let it act as a backup.  It still fired fairly regularly, so this morning they turned it down to 60 to see where his heart rate was going.  He's still running fairly slowly (heart rates in the high eighties to hundred-teens.  That's why we are still in the PICU.  Also, he's throwing PVCs like a crazy baby.  The alarm has been going almost non stop for hours.  But, his perfusion is good and his vitals are stable, so its really just annoying at this point.

The central line and arterial lines have been removed and a new peripheral line is in (only 2 sticks!).  All we really have left is the pacer wires and the drain.  Still enough that I can't change his diaper, but not nearly as overwhelming as it was!

Monday, December 6, 2010

Someday He'll Be Happy Again

Some days are harder than others.  After C was extubated Saturday night, I was feeling pretty good.  Sunday, during the day C got a bit fussy around 4pm.  Our nurse talked to the resident and they decided to change his pacemaker settings to see if that was the culprit.  I noticed C was a bit warm and asked them to take his temp.  They did, and it was a bit high so they took a bunch of cultures.  We're still waiting for those results.  We had the same night nurse last night as the night before.  She's not my favorite.  I like to know why things are being done and I like to feel welcome in my child's room.  Neither of those things happen with this nusrse.  She was very competent and she took good care of C, she just generally made me feel like she didn't want to talk to me or for me to be there.  When I left to go to the Ronald McDonald rooms for the night, I told the nurse to call if he needed me.  When I got back in the morning, she told me he'd been crying for 7 hours.  I'm not at all clear what about seven hours of crying didn't indicate that he needed me, but apparently it didn't.  To be fair, she tried a very large number of comfort measures, I just really wish she would have called me.  She is aware that I wished for a phone call, and tonight we have different nurse(s) -- one rock star of a nurse and the guy she's training.  The guy is pretty cool, but not baby savvy and I don't feel a real connection with him..

I spoke with the nurse practicioner who spoke with the cardiac electrophysiologist and he's not comfortable making a call regarding the JET and the heart block until we've weaned of the amiodarone.  It causes heart block and can do other weird things, so he'd like us to be totally off that for a bit then decide if C needs a pace maker.

C continued to cry for most of the day and into the evening.  We've now got him in the crib which is angled in a bouncy seat which is angled with towels behind him to get him to sit up further.  He seems relatively content at this time, but still not my happy boy.  I have to keep reminding myself that this is not forever and he will be happy again, someday.  Just not today.

Sunday, December 5, 2010

Post Op Day 4 & 5

Early on Saturday, C shared his view of ventilators specifically and the situation in general:

Saturday Evening at 10pm C was extubated *YAY!*

C is still experiencing JET and I found out during rounds that he actually has some heart block going on too.  We will be in the PICU until the JET/heart block goes away or we get a pacemaker.

Friday, December 3, 2010

Nightly Update: Day 3 Post Op

First, can I say it in no way seems as if its only been three days since C had surgery?!  It feels like it has been FOREVER!  They cut out the sedation and pain meds along with the paralytics so C is a tiny bit awake.  In substantive terms, this means he wiggles, and his fingers will curl around my finger.  It also means he's in baby restraints, but it doesn't bother me as much as they seem to think it would.  The last thing I'd want is for him to remove one of the tubes or wires that are working to get him better right now.  He's eating 12 ml/hr now on continuous feed.  They are weaning down the Nitric Oxide and weaning on the vent as well.  The drain is down to using bulb suction instead of the big suction device because he's got so little drainage now.  He continues to go in and out of JET but he's tolerating it for the most part.  He's being paced at 140 now, but when he gets into one of his JET spells and can't get out of it, they sometimes bump him to 150.  This is better than the 170 he was at, and I have to remind myself its only been three days and JET can take up to 14 to resolve.

I have asked the doctors to let me know when I should start worrying and until they say I should be concerned, I'm going to continue to just coast along.  On the suggestion of some other heart parents, I have brought along our video camera so we can take video of the first time we get to hold C again, I hope to be able to post it soon.  Technically, I'll have to find a way to have someone post it to my account for me, because the hospital network doesn't allow access to YouTube.

I dreamt last night that I went into C's hospital room and he smiled at me.  So when I woke up and realized that can't happen yet, it was really hard.  I miss my happy baby, and I have this vague guilt that I handed him over to feel all this pain.  I know we couldn't go much further as we were and I know the repair is the only direction we could go in, but there's no way to explain that to him, and I find that harder to take.

But every day there are fewer medicines, less tubes and more signs of life.  The progress helps.

Thursday, December 2, 2010

I miss my baby

I miss my baby. C was so engaging and awake the night before his surgery.  He played and babbled and generally was a riot to hang out with.  He didn't go to sleep until after midnight.  He didn't go to sleep until after midnight and slept all the way to the hospital and through check in.  He didn't fuss about not being fed and was sweet and funny and cuddly.  My last view of him was him peering at me over the nurse's shoulder as she carried him off to the OR.

Now he's still and quiet.  For the first time since he came out of NICU we can't hold him.  They keep him cool because of the JET and we don't get to see his beautiful blue eyes.  I've hardly left his side from the day he was born until they walked him to surgery and it wasn't enough time.  There isn't enough time to make this separation OK.  Statistically, we'll be reunited. So I feel guilty for missing my baby.

There are moms I've shared and loved with online who don't get to see their babies again.  There are families in the PICU here who get terrible news.  I feel guilty for missing my baby and being sad, I know I should be grateful for how comparatively well things are going, but it is still hard and scary and I can't help but miss him.

Medical Update

The bad stuff: C continues to experience JET rhythms that break through the pacer's current rate.  Most of the other issues he's experiencing relate back to the underlying JET.  His urine output dips, he has occasional perfusion issues, he has some blood pressure issues and the ventricles aren't functioning quite the way we'd like to see them.

The good stuff:  C is being weaned off of the Nitric Oxide and the paralytics.  He's also being fed breast milk via NG tube.  He's currently receiving 3ml per hour continuous feed.

Wednesday, December 1, 2010

Post Surgery Pictures

C is being kept sedated and paralyzed while he heals.  He's on a ventilator and has a pacemaker.  This morning they had him pacing at about 170 to keep his heart beating above the JET he has been experiencing.  This evening its down to 150.

Day 2 Morning Update

C's heart continues to slip into an arrhythmia called Junctional Ectopic Tachycardia (JET), this sometimes happens after open heart surgery. C's getting amiodarone and some extra bolous fluids every once in a while to help. They are also pacing his heart with an external pace maker.  He's currently being paced at about 160bpm to keep his heart beating faster than the level where they are seeing the JET occur. They had to add a mild diuretic because his urine output decreased a bit with all this heart stuff.  But they say he continues to profuse well even when in JET, which is apparently a good thing.  We aren't even 24 hours post-op yet and we did have a pulmonary hypertensive crisis in the OR so he'll stay sedated and paralyzed again today.

Late night/Early Morning Update - Day 2ish

When TheMan and I went by to drop off milk at 11 before we went to bed, there were a few people in C's room.  He's been having episodes of a concerning heart rhythm called Junctional Ectopic Tachycardia (JET).  They were working to use the pacemaker to get his heart beating faster than would allow for the JET.  I just got back from my 4am pump and he's doing much better according to his nurse.  We'll be better able to understand what is going on after a bit more sleep.  C looks good otherwise.

Tuesday, November 30, 2010

Surgery Day 1

C's resting in the PICU. We had a bit of a concern earlier when they started to take him off bypass. He had a pulmonary hypertensive crisis and had to go back on bypass briefly to knock him back out of it. They put him back on bypass, gave him nitric oxide and he snapped out of it within 20 minutes. They were then able to take him off bypass. Shortly after they got him to the PICU he started having some irregular rhythms in his atrium and they are using an external pacemaker to control his heartbeats for now. We'll know more tomorrow, they are basically going to let him rest overnight. He's currently heavily sedated and letting the vent do all the work.

Our first nurse was AWESOME! Her name is Erin and she explained every single thing in the room. They were redoing the tape for his vent tube and NG tube and she cut a heart out of adhesive to use for the NG tube tape.. it was really cool. Its a little thing, but it made a difference. Then we ended up discussing reflux for a while and she made me feel like she actually valued what I had to say. She also welcomed all questions and, in fact, encouraged them. I liked her a lot. Tonight's nurse is pretty cool too, but not as interactive or engaging.

We had 2 hours of sleep last night and I am absolutely exhausted. I'm hoping to get some sleep tonight after I next pump.

I am mostly OK right now, occasionally I just want to run and go get my baby!  I miss him and I hate not knowing what I need to do next.  I believe sleep will provide some perspective.
I have pictures to post and will upload them "soon".

Saturday, November 27, 2010


Someday soon the acute phase of my son’s heart defect will end, and I will have a typical little boy with a really cool scar.  We’ll have a couple extra doctor visits per year and otherwise life will continue.  Maybe someday he’ll have to revisit this again, but it won’t be our world again for a while at least.  This is an incredible miracle, but it comes with a price.  Congenital Heart Defects are the #1 birth defect worldwide.  They span all races and genders, affecting between 1 in 85 and 1 in 125 births.  Yet, most people don’t even know they are a concern.  Hospitals could easily perform a simple non-invasive test to check blood oxygen levels right before they send babies home and catch about 50% of the undiagnosed heart defects, and the test takes only seconds.  With a specially trained operator and a special ultrasound, they could actually do an echo on every baby to make sure everything looks OK. The tests are neither painful, invasive nor incredibly time consuming, and they would save lives. 

The odds suggest that I, like so many mothers before me, will get caught up in the struggles of everyday life and forget how hard this time was and how important researching these defects and supporting the parents who have to live with them are.  Maybe I’ll do a heart walk once a year; maybe my son will have an extra birthday celebration on his surgery date.  But life will sweep us up and carry us far away from the immersive world of complex congenital heart defects.  Given that heart defects are the most common defect and the fact that almost everyone you talk to knows someone who has a friend, child or parent who has one, you’d think that these heart conditions would receive intensive funding and public notice.  But they don’t. 

Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD.  Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research. Source: Children’s Heart Foundation

I was born with one of the most common heart defects, a ventricular septal defect (VSD), 14-16% of all CHDs are VSDs.  My son was born with an Atrioventricular Septal Defect (AVSD or AV-Canal), 4-10% of all CHDs are AVSDs.  My son spends an hour to an hour and a half out of every three hours eating.  He breathes so fast that he can’t suck swallow and breathe a “normal” babies do.  Instead he holds his breath, takes a couple of swallows then has to breathe heavily for a while so that he can start all over again.  But really, he manages very well, it gets harder as he gets bigger, but he’s still gaining weight and he is happy.  Without surgery, it won’t be that way much longer.  But really, our kids don’t LOOK sick.  They laugh and play and giggle and coo.  Sometimes their skin takes on a bluish tinge, sometimes they may breathe faster than the average infant.  But most people will never be able to tell they are sick just by looking at them. 
Our kids generally don’t become pale and thin, they don’t get the characteristic bald head of a child undergoing chemotherapy.  Their hearts are sick, but no one can see it, and when they could see it, they don’t want to.  Newspapers have refused to print pictures of babies just after open heart surgery; they say the pictures are too much and would offend readers. 

Really, I’m here to tell you, heart defects are pretty damn offensive, so I’m ok with someone getting a little sick.  It is sickening, and scary and hard… We need to fund research and find better and earlier interventions to save these children.

I understand why we walk away once our children are healed.  I understand why society can’t see the illness our children are suffering from, and because it isn't visible, its easy to ignore.  I also understand that this has to change and we have to work to find a better solution for these terrible defects.  40,000 children will be born with a CHD this year, 10% of them won’t see their first birthday.  There isn’t an easy answer, but we have to somehow stop walking away once our children are healed.  CHDs are a hidden disease and we have to find a way to bring them to light.

Monday, November 22, 2010

No Seriously, we are THAT tired

Last night we finished feeding C, pumping and cleaning up for bed by midnight.  C's next feeding was supposed to be at two, but we decided to push to two thirty so we could get two solid hours of sleep.  When the alarm went off TheMan got up, made a bottle and went to the restroom.  I failed to get up at all.  I woke suddenly at four am and called for TheMan because he was not beside me and we had overslept.  I heard a terrible crash from the master bath! I jumped out of bed and ran over to find TheMan on the floor looking up at me.  He had fallen asleep on the toilet an hour and a half ago and when he tried to stand he found both of his legs were asleep.  He could feel nothing at first, then had to suffer through pins and needles, we had to toss the bottle of breast milk since we had already fortified it. 

The situation was disconcerting then, and completely amusing now. 

Monday, November 15, 2010

The world of miraculous modern medicine

It’s strange how when something monumental is going on in your world, you feel like the entire world should stop and acknowledge it. I see famous actors sponsoring causes and I want to call them and explain that they should REALLY be talking about heart defects. They are the number one birth defect and no one is talking about them! My son’s surgery has been scheduled for November 30th. I’m currently immersed in the world of high end medicine. My days revolve around capillary refill rates and tachypnic breathing. But the world around me continues. I’m living in a world where I see friends’ babies die and can only stand silent witness and support as best I can. Even the people who come in to help us out can’t really understand because they go home and sleep and live a life outside of this world, we are never outside this world.

We have at least 1 doctor appointment every week. We have a pediatrician, cardiologist, a gastroenterologist and a urologist in addition to our pediatrician. Our insurance company has assigned us a special care coordinator who is also a nurse. Her job is to ensure C gets what he needs when he needs it and ensure we are not overwhelmed by bureaucracy. I always thought that you had to go to war with your insurance company for every procedure when you or your loved one was sick. The media fosters the idea that the insurance companies are out to find ways to let you die so they can keep more money. So far I have found that to be totally untrue. We have a home health nurse who comes weekly to check C's weight gain and make sure his O2 sats are still close to 100%.

I now know there are two kinds of pharmacies and that the big stores like CVS aren’t really equipped to meet all drug needs, I never knew that all pharmacies couldn’t dispense all drugs. We found out when we walked into the pharmacy and handed them a handful of prescriptions and they said it would take 4 days to fill it. The prescription in question was for salt water, very specifically formulated salt water, but salt water nonetheless. In case I’m not the only person who didn’t know, there are compounding pharmacies which can make drugs and non-compounding pharmacies (like CVS and Walgreens) who can only dispense what has already been created.

When you go into the hospital the world narrows to that room in that time. There are no days and nights, just 12 hour shifts and 4 hour vital checks. Monitors beep and leads fall off and you learn to be nonchalant about idiosyncrasies that can panic even seasoned nurses, because for your child it’s normal. My baby breathes two to four times faster than the average baby at all times. I’ve had fights with ER docs about it and watched nurses who take vitals, stiffen and start to quietly panic until I tell them it’s OK. It’s a relief to be at the cardiac clinic, because there, they don’t even blink when his respirations are in the 70s. He’s a cardiac baby and he’s awake. We get excited when his respirations are in the 50s because that’s amazingly low for him. It’s going to be very strange for me when I can’t check on my son by watching him breathe from across the room.

I’m constantly exhausted now, but I wonder what I’ll do with my time all this is over. This is not what my poor husband signed up for. He loves our son, but the amount of work and coordination boggles the mind. We should be able to get a solid block of sleep by now. We should be bummed the off days when the baby wakes up a couple of times in the night; instead we wake him up every night to feed him. I wonder if he’ll still be sleeping through the night once he’s not running a marathon all the time. My pediatrician looked at me and said “soon, you will have sleep”. I know that well babies are not this exhausting, but I’ve never had one, so I can’t imagine it.

But mostly, I’m scared, I know he’s sick in my head, but he looks fine to me. He’s getting more tired and this is getting to be more work for him every day. But the thought of handing him off for surgery is terribly frightening. My baby is going to have open heart surgery and right now that is the scariest thing in the world.

Thursday, November 11, 2010

The Longest Day Ever...

Sorry I haven't been posting, I think we are slowly wearing down a bit.  I need to get back in the blogging habit so I can keep

I have been living the longest day ever.  It started at 3am on 8/9/10 and continues through today.  This day is broken up with naps that span at most 2-3 hours before I'm up for another hour to hour and a half doing "stuff" Pumping and feeding baby and giving medicine.  But what I most certainly don't get is sleep.

On Monday, we went to the pediatrician and got a set of shots.  Usually these shots are given at 4 months, but we'll be in that 6 month window where we can't have any vaccinations by the time he turns 4 months old.  I started to wait until next week to do the shots because we're risking having to redo them if they are to close together. It ends up that we're lucky I did not do that.  They wanted to do surgery closer to four months instead of six.  They said December would be the month for surgery.  So somehow, it knocked me for a loop when the surgery date was set for November 30th.  I know its only one day, but I REALLY expected to have the word December in there somewhere.  I was very disconcerted and I am very anxious.

Tomorrow we meet the surgeon and get another echo so he can get the pictures he wants to have for planning.  I have lots of questions to ask and I hope getting those answers will help ease my anxiety.  I'm back on heartburn meds, so I know I'm actually pretty anxious.  I'll know more about the specific repair and how long we're expected to be in the hospital after tomorrow (which is actually later today since its 1:30 in the morning and I'm up expressing breastmilk for the 4am feeding).

I stuck C's rattle in his hand earlier today and he tends to hold onto it for a while if we can get a good grip on it.  He's not really grabbing it on his own.  He's a little behind on the tummy skills since we can't really get all the tummy time in that we are supposed to.  Our goal is half an hour a day.  Eating usually takes an hour and a half out of every three hours and exhausts us.  Then our tummy is usually upset for another 40 minutes after that feeding and C must be held upright... so we're 2 hours and ten minutes in before anyone can do anything for themselves such as eat or go to the bathroom.  Then 50 minutes later, we start all over again.  Its nice when we dream feed because feeding him goes faster, but then he's asleep and we still can't do tummy time (plus we still need to hold him upright for half an hour).  The pediatrician says not to worry about it, he's going to get pretty behind after surgery anyway, but he'll catch up quickly once he doesn't expend the energy of a marathon runner just to be awake.

I've posted a couple of videos on Youtube, but only one doesn't involve having to view it sideways.  Its dorky, but I still enjoy watching C smile.  I have no idea why he likes having his mouth tweaked but he REALLY does *grin*

I've been pumping for 40 minutes now, so I believe I shall be allowed to go back to sleep.  I hope to finish another blog post I've been writing for a while soon and have it online by the end of the weekend.

Wednesday, October 27, 2010

Once more into the breach...

In the last month, C has started really fighting against eating. A couple of weeks ago on Friday, my mother cuddled C until he went to sleep and then handed said OOPS! and him off to me to feed him. I couldn’t get him to wake up and I was joking around and said my husband would pop the bottle in his mouth anyway… I illustrated by popping the bottle in his mouth and to my amazement he drank. We spent all weekend feeding him in his sleep and he doubled-tripled the amount he ate! We were very excited and we made our goal feeding all weekend long. On Monday we had an appointment with GI and she thought we’d figured out a pretty slick solution. She did find it very interesting that he quits eating at around 30 ml awake, but asleep we can easily feed 85-90 ml. She had no problem with the solution, gave us some adjusted meds for reflux and sent us on our way. Then on Thursday our home health nurse found out about it, said absolutely not and called the cardiac nurse practitioner. I explained that without the sleep method, C would only eat about an ounce before he started really fighting and feedings could take in excess of an hour and a half…. They said well maybe we need an NG tube then. I REALLY want to avoid that and everyone knows it… but I said whatever we need to keep C healthy. They called the on call cardiologist (thankfully it was Dr. Rajan who we had met before) and he said he’d bring us in for an evaluation.

After we got in, it was time to feed C, so we started feeding him, and forced him to stay awake through the process. Feeding him like this is kind of like going to war and kind of like making Foie Gras. Eventually he started screaming and fighting and gagging. I called the nurse in to see what I was experiencing and she agreed it appeared he was in pain. My husband went home and I asked the nurses to take the night feedings so all I had to do overnight was pump. In the morning they said they were unable to wake him for his overnight feedings, but were able to get him to eat while he was mostly asleep and it seemed to work very well… I was like “I know! That’s the point!!! So we went back to feeding him in his sleep. The cardiologists on the floor said they felt he couldn’t really be asleep if he was eating and they were also fine with the feeding solution we’d come up with.

The resident on the floor explained to me that as medical people they heard eating in his sleep and were afraid he wouldn’t protect his airway. I didn’t say it, but I thought perhaps they meant inexperienced medical people… because the attendings all seemed very clear that eating in his sleep was cool. However, from now on, just in case, I’ll be saying eating in a state that is so near to sleep it is indiscernible but still allows him to adequately protect his airway and coordinate his suck/swallow/breathe reflex. While a much longer phrase than in his sleep… it will hopefully prevent a return visit to the hospital.

Our non-fortified goal is 650 mL/day. I don’t think we actually need to eat 650 to gain however. We quit fortifying after this last trip to the hospital. Someone on one of the boards had talked about how their LO would throw up when drinking fortified breast milk. They later tested her breast milk unfortified and found it was 27 kCal without any fortification. I suspect my milk is also at least somewhat higher than the average 20. We weren’t making goal, but we were still gaining around 25 grams a day. So I quit fortifying… we still gain around 25 grams a day, C eats around 90 mL per feeding and he hasn’t thrown up in 2 days now (knock on wood). We’ll see how his weight gain looks at cardiology on Tuesday. Hopefully, we’ll be able to stick with just breast milk for a while longer. C's much more comfortable without the fortification and he’s able to poop much easier! (Its amazing how much of baby life revolves around the ability to poop). We no longer have the problems where he screams like he’s in pain. I think the fortified milk was just too rich. Hopefully we will continue to gain and won’t have to go back there. We did create something of an oral aversion through all this. It seems to be getting better as we continue to not fortify, so hopefully we can resolve this one and not gain another after surgery.

My fingers are crossed.

Monday, September 27, 2010


Most days I am incredibly afraid of losing my son. Mostly I push it down and ignore it. But some days my fear finds a target and it bursts out where I can no longer contain it. It is usually stupid stuff, today it is because it appears my husband has a cold. We’ve been careful. My husband rarely talks to anyone at work, most of the people we have over see a very small subset of people and are mostly home bodies themselves. We have no idea where the cold came from. Maybe it was the lady at the takeout counter or the guy at the checkout at the convenience store. We can’t avoid everyone all the time.

The only thing I know is that I’m terrified that my tachypneic little boy is going to get a cold and have to work harder to breathe. I don’t have any idea what that will do to him, I think I can safely assume it will require another trip to the hospital. I’m hoping like mad that I’m already producing antibodies and giving them to C in my breast milk. I am hoping that will be enough, that my immune system is somehow smart enough to go into over drive and kill this thing before it can even get up to speed. My husband is wearing a mask when he has to be around the baby and he’s sleeping on the couch to limit exposure. On an up note for him, he’s going to be able to catch up on playing his video game and sleeping. I’m going to have to give up on sleep for the next while it seems.

I’m so scared I can taste it… I'm praying, and I'm turning it over to God, but I'm still so very scared.

Wednesday, September 22, 2010

Will we ever make it a week without a trip to the hospital?

First and foremost, a quick request for prayers, good vibes and positive thoughts for two special heart babies: Joshua and Ewan.

On a personal note, on Tuesday, I was cleared to go to wearing my finger splint 10 hours a day instead of constantly as I had been for the last 8 weeks. Taking care of C has become much easier now! I didn’t wear the splint completely correctly while it was healing so I still have a small degree of droop in the tendon. But it is MUCH better than it was before. I now hit the correct key when typing instead of the key next to the one I meant to strike.

So, we made it 5 days before we were back in the hospital this time. Last time, the hospitalization was somewhat unneeded and caused by the overreaction of the ER. This time, the hospitalization seemed unneeded but was probably the only way that we could have received recognition of the issues we were having.

Over the weekend C's reflux reached epic proportions. He had no appetite and was in terrible pain when he did eat. I called the pediatrician’s after-hours line which rolls to the Ask-a-Nurse line. As always, the nurse on call decided to page the pediatrician once I gave her a rundown of the situation (proving that I actually did need to talk to a doctor). We determined that C was not dehydrated and I would call the cardiologist on Monday. I spoke with the cardiologist nurse practitioner regarding C's discomfort and I said I thought it was caused by the digoxin we’d put him on. She told me she didn’t think it could possibly be the digoxin and that they don’t do digoxin toxicity screens as a routine and she saw no reason to do one with him. She suggested we start fortifying his breast milk with formula to ensure he continues to grow.

On Tuesday we had an early morning kidney ultrasound, a cystogram and a voiding cystourethrogram to determine if C's UTI was caused by a problem with his ureters and kidneys. When my pediatrician called with the results grade II VUR and hydronephrosis (grade II reflux in both ureters and a dilated left kidney). While I was on the phone with her, I mentioned that C had vomited on both Monday and Tuesday which had me concerned. After talking with her regarding my conversation with the cardiologist nurse practitioner we decided that we’d both feel more comfortable if we went ahead and did a lab to check his digoxin levels.

We went to the lab at Children’s at 5pm and they had to dig a bit but were able to get a blood draw from the vein with only one stick. We went home and went on with our evening. At about 8pm we got a call from a doctor (I think she was the pediatrician on call) who said she’d received some critical labs from Children’s Mercy and we needed to go to the ER immediately for digoxin toxicity. She called in the referral and we took still packed suitcase from Thursday’s hospital stay, threw them in the car and drove down to the ER at Children’s Mercy.

Upon arrival I signed in and explicitly stated that I was here with a 6 week old child with an unrepaired complex congenital heart defect who was being treated for heart failure and was in to be evaluated for digoxin toxicity. We were sent directly to triage and then from there back to a room so we could be monitored and get our EKG.

Upon arrival in our room we got settled and I asked for a hospital pump since we’d left in such a hurry. Our nurse came in and they did the initial evaluation. Registration came in, said oh it’s you and walked back out… didn’t even ask if anything had changed.  I assume that’s because she knew that we didn’t change anything in the last 4 days since she saw us previously.  We were seen by a resident and I explicitly stated that I wanted the on call cardiologist paged and blue team down in the ER looking at C. They said they’d take care of it and I assumed that meant they’d make the calls. Shortly thereafter the doctor managing the ER came in and said he was personally reviewing the case and he’d discuss it with his team. I again reiterated that we’d been up on the cardiac floor 4 weeks in a row and the doctors up there knew C and had previous experience with him. I explained they’d be better able to diagnose and treat him and they should be called immediately. He said he’d talk it over with the team again and he left.

Then two nurses came in and started talking about starting a line. I asked if they were talking about an IV and they confirmed they were. I told them if he was getting an IV I wanted someone from the NICU to place it. I explained he was a hard stick and they tried 8 times and took 2 hours to get his IV in last Thursday. Most of the easy veins had been blown less than 5 days ago and we were not going through that again. The doctor came in and we talked about the need for the IV, they were afraid the original sample had hemolyzed, if it hadn’t they wanted to aggressively treat the digoxin toxicity because his potassium was dangerously high. I agreed that we could try to place an IV in these circumstances, but we would be making a very limited attempt and if it didn’t work, we’d have to figure something else out. The two nurses came back and said they just wanted to look for a vein. They spent about 15 minutes looking C over then left the room.

Shortly thereafter the charge nurse for the floor who also was on the IV team came in and asked if she could look at him. She eventually found a vein she thought was good and I agreed to let her try. She ended up blowing that vein, but had an innovative idea for how to place the line so I let her try one more time on the chance that it would be a workable solution for all future IVs. C has really tough skin for a baby and putting in the line causes the vein to roll. She tried making an initial hole with a larger needle then going in with the smaller line to try and get an IV. It ended up not working, so now we know that isn’t the solution. After the second attempt she agreed the NICU nurses would probably be a better idea for his particular situation.

The NICU nurses came in and looked him over. They told me they were each willing to try once, but after that they would insist he get a simple heel stick and nothing else unless the labs warranted it. They tried but were unable to get a line in. They did however keep him 150% calmer during the attempts and at the same time made me feel much better about the situation. We will not be allowing anyone else to make such an attempt in the future.

After we finally had the labs drawn while we were waiting for the results, our nurse DJ sat with us for a bit and talked about her experiences with a medically fragile child. [It is hard to think of C as medically fragile, he is my only baseline for normal. It makes it doubly disconcerting when medical professionals routinely quietly panic at his normal breathing rate.] DJ told us that the ER is a wonderful place to go in an emergency, but if your child is not typical, you must educate them, because as a rule you will know more about the particular condition than they do. The lab results came back and his digoxin levels and potassium levels were still higher than they should be so the ER decided to admit us and we were told to wait for a bed. The Doctor then asked me about C's tachypnea (I only learned what this word meant last week; I think the medical folks just forget that not all of us share their particular industry’s vocabulary). Tachypnea is rapid breathing and in C's harlie’s case, it means that while the typical infant breathes 20-40 times per minute, C's “normal” is 40-80. After he’s eaten he may get into the 90’s or higher. I ended up in an argument with the doctor as to whether the tachypnea was a sign of CHF or not. He told me it was the very definition of CHF and I told him that while tachypnea is in fact a symptom of CHF, in his case it is a symptom of having a very large defect and having to push 3-4 times as much blood in a given time frame as a typical infant and no diuretic in the world would change his breathing. Eventually he conceded the point, but he was very reluctant.

I’d heard the cardiologist page and the blue team page so I assumed they actually had talked to the cardiologists before admitting us to the floor. We got into the ER at 8:30 and we didn’t get up to a room until 2:30am. Upon arrival I found that they had in fact decided to admit us before calling the blue team. Next time I shall have to take drastic measures. I told the nurse that we’d almost had a double dose of Lasix last week so I had to insist that absolutely nothing was done with C without asking me first. I clarified that I understood that the only reason this worked out was because I am with him 24/7 and they have to change shifts. She agreed and was not at all offended. I also told her I wanted to be awake for rounds in the morning.

I finally got to sleep around 6am and was awakened by our care assistant at 9am for rounds. The cardiologist came in and was pretty grumbly about seeing us back so soon. She said that any cardiologist would know that a single elevated digoxin level was not a cause for concern and it was ridiculous that we were here. I explained that I tried very hard to get the ER to call blue team before admitting and they blocked me at every turn. She further stated that the digoxin was not the issue and the reflux, vomiting and general lack of appetite were completely unrelated. I stated that 24 hours after his last dose of digoxin, his appetite was starting to return and I really thought the two things were correlative. Rounds consist of the doctor, the floor residents and about 15 students, so I didn’t feel it was the place for a drawn out discussion on the matter (also, that big of a group is pretty intimidating).

I called my pediatrician’s office after they left and asked her to give me a call when she had time. I spoke with her about the cardiologist’s thought that the reflux etc. was unrelated to the digoxin and she agreed that if it walked like a duck and quacked like a duck, it was probably a duck. We both also agreed that we were not cardiologists, but it couldn’t hurt to try one more time. She put in a call to speak with the cardiologist, and I waited for her to come back by after clinic ended at 4pm. They redrew the digoxin lab at noon to confirm it had dropped back into normal ranges as it should have after 24 hours without a dose. The lab was back by 2 and the result was 2.6 which was still above the maximum allowable range.

Finally at 4pm the resident I speak with the most came back in the room and said our discharge order had been entered and we could go home. The cardiologist came in and sat down across from me, it was like she was a completely different doctor from the irritated, brusque doctor of morning rounds. She told me that my son was trouble (which I’d already realized *grin*) and that while a typical child processes digoxin in about 24 hours, he was taking about 47 hours to process the same quantity of digoxin. She’d already spoken with nephrology and they thought it was not kidney related, but it seemed to her that they may want to check that out further. She went on to tell me we were going to cut his dose in half and take levels again on Friday to ensure we were under the limit with the new lower dose. She said she felt we’d learned some important things this hospitalization and that we were probably looking at doing his repair sooner rather than later given how he’s handling the defect so far. We are also hoping to beat the peak of RSV season which I heartily agree with. C will be getting the RSV immunoglobulin shots for this year, which I am thankful for. These shots are about $1200 per month, so you have to be pretty sick to qualify for them.

She also told me that in addition to blocking me from calling cardiology the ER had also prevented the pediatrician from calling them for consultation. She told me how to use the switchboard to access the blue team and the on call cardiologist directly. I have also figured out how to get a hold of a nurse on the cardiology floor and I can use both of those paths to get someone down to the ER. I know I’ve already been labeled as “one of those” moms. So I might as well go full tilt at this point. I had the cardiology resident add a note to C's file stating that his normal respirations are between 40 and 80. That no one is to treat him with diuretics based solely on the presentation of tachypnea and that he cannot be admitted without first speaking with cardiology. I will also be staging a sit in at the ER and no one will be doing anything without me physically seeing someone from the blue team in the ER making decisions.

If nothing else, I’m learning to be more assertive in the face of what I perceive as a more knowledgeable “authority” figure. It’s a good life skill.

Friday, September 17, 2010

Back on the cardiology floor again... AGAIN

We failed to meet our whimsical goal of not being in the hospital for 7 days. For the third Friday in a row, we are on the cardiac floor at Children’s. The first week was for CHF, the second was a UTI and we are back because home health really didn't like his breathing. She was pushing us to go in by ambulance, but thankfully cardiology thought that was not needed. It felt a little excessive to me. His breaths were between 70 and 100 (70 when he was cuddled up and sleepy, closer to 100 just after he finished eating. His O2 is currently sitting around 95%-96% and occasionally dropping into the 80s.

They had us come in through the ER. We got in much faster this time. I still need to be a bit more of a squeaky wheel, but its better. They wanted X-Rays and this tech did chest X-rays by dangling him by his arms in front of the X-ray machine. The Cardiology floor team now recognizes our names. So the resident we usually had ran down to check us out...

Then, they decided they want an IV for Lasix. Getting the line in was HORRIBLE. They had called someone down from surgery to put it in because they expected it to be very hard. In the end, 2 nurses and 3 doctors were trying. The third doctor in the room was the one who eventually got it. Actually she stuck him twice and she got blood out the first stick, but then his vein blew, so she had to switch to the head. She only had the option of the vein they used last week or the head... by the time she got in, everything else had been tried already. She was actually awesome.. she was the attending who saw us early on in the ER visit. She was on the way out the door for the day and saw me standing crying by the nurse’s station. She asked what was up and when I told her she said she had some IV juju so she'd go try. She tossed her stuff on a cart and went in...

When all was said and done, he had been stuck 8 times, he blew veins at least twice, his little hand was covered in blood on the third stick and they had tried all the viable veins in his hands and feet and couldn't get it. I couldn't stay in the room after the third stick; I lost it a little bit... I wanted to stop it after the third, but what the heck else could they do? What do I ask for next time to prevent this?

I really wasn't that stressed over his breathing rate though home health got me there when she said he could just get too tired and stop all together. That freaked me out. When I finally got in and the cardiology attending checked him out (after apologizing for the whole ER thing... everyone was really upset about how the IV thing ended up) she asked why we were back in. I explained that yesterday my pediatrician was kind of concerned by his breathing rate, my mother in law (a respiratory therapist) was kind of concerned, I started counting respirations late last night after a feeding and then home health expressed serious reservations about his condition.

I told her I wasn't panicked but home health was. She asked if I was really concerned by his breathing and I told her I honestly wasn't freaking out over it, he breathes fast, he retracts a bit at the throat and belly, that's just how he is. The retractions were slightly more pronounced and enough people had expressed concern and I was feeling enough concern that he should be checked out, but it honestly didn't feel like an emergency. Originally I had planned to call his cardiologist and have them squeeze me in to be looked at. It just didn't work out that way.

My understanding of what is happening is that this is less about fluid and heart failure at this point and more about his defect directly. The VSD and ASD are so large that he's basically pushing mixed blood in all directions. Which means he has to push a lot more blood to keep his O2 as high as it is.

Someone started making NG tube noises last visit, which I thought way, WAY jumping the gun. Nothing suggests he is aspirating his feeds, it really seems like we could fortify his BM if he needs more calories before we go all the way to NG tube. I'm already exclusively pumping so he has less work to do to eat...

To top everything off, he went almost 6 hours without a wet diaper after all that with the IV. I was so worried. On Tuesday we are scheduled for testing to see if he has renal reflux so the kidney thing has me nervous too. He finally started peeing and pooping about 1am… He had two good diapers while we were still in the ER, he peed on the scale when we got to the floor then nothing from about 7 to about 2am.

I’m exhausted and emotionally weary. I’ve been crying on and off all day and I feel like I might be reaching a limit here.

Saturday, September 11, 2010

We should be home tomorrow…

They have determined the fever was being caused by a UTI. We are treating it with antibiotics. They are also assessing how fast he breathes after eating. The cardiologist making rounds started making NG tube noises, but I think that is a bit premature. C gained weight in the last 24 hours and he eats quickly and regularly. I think he just breathes fast right now. There are lots of things we can do before we have to go so far as an NG tube I think. I’ll call my cardiologist’s nurse on Monday to try and find an answer.

We had an awesome nurse today on the cardiac floor. She was no nonsense and practical and she liked me *grin* She loved that I exclusively pump and bottle feed (it saves a lot of work on C's part and still gets him the benefits of breast milk). She also loved that I can manage the meds and I pay attention :)

I am so very tired…. Though yesterday I got the first four hour block of sleep that I have had since C was born. It was lovely. I’m worried about having enough milk if I do that too often though.

Speaking of sleep I’m off to feed the baby and go to bed!

Friday, September 10, 2010

We're back on the cardiac floor again.

Last week we had to go to the ER because C started having trouble eating and was breathing fast. They admitted him onto the cardiac floor for observation overnight and we had our lasix adjusted and digoxin added in.
It seems we caught some kind of bug down in the ER while we were there :( C spiked a fever tonight and our pediatrician sent us to the ER. We went to the children's campus that does not have a cardiac floor because we were given the impression that they'd do a CBC and probably send him back home and that we were just being cautious. The pediatrician told us to go the the campus we went to... They didn't tell us that if an infant has a temp over 100.3 then the infant is admitted for at least 48 hours. So... the ER doc talked to cardiology and cardiology said C had to go downtown to the cardiac floor since he was going to be admitted. Of course, since we were already at the south campus they wouldn't let us drive him to downtown, we had to be transported by ambulance to the downtown campus. So now we are probably some crazy amount of money poorer and we're back in the hospital for another 48 hours. He was on a stretcher with monitors during transport. They actually took all my bags and luggage with us which was very kind of them. I did help the guy driving the ambulance with his homework while we rode between hospitals. So at least I was useful.

I really just want a break... It has to get better, right?

To recap:

We found out we had a single umbilical artery, then we found the heart defect, then I broke my finger, then I got gestational diabetes, then I had to go for twice weekly NSTs, then I broke my toe (and went into labor that night) then C de-satted in the first 30 hours so he had to go the NICU, he was in NICU for 9 days, then our air bed stopped holding air and we had to buy a new mattress, then at 3 weeks his heart failure got worse and he spent a night in the hospital for observation (during which time we missed the original bed delivery), then the dryer broke and shocked me when I touched the door we had to buy a new one, then C got a fever and we're now back in the hospital with a fever of 101 :( We'll still be here when the stupid dryer is supposed to be delivered... I wonder if they will call ahead like they are supposed to... In vaguely related money news, insurance called us and told us what our responsibility would be for the first hospital stay (9 days in NICU at birth) -- we will pay $1200 for the first hospitalization.

I'm very tired :(

…….. We have now been in the hospital for about 20 hours. I have had 3 hours of sleep over the course of the day and I feel vaguely better. Brighter days are in the future. In happy news the cultures have not grown yet, decreasing the liklihood of bacterial meningitis or sepsis. Also, the cardiologist said while we are here she wanted to stop the Sodium Chloride and Potassium Chloride because she's not sure they were ever needed in the first place. So we may end up with 2 fewer meds out of the trip. Those things are both pretty cool. Oh AND we haven't had a single nurse that I did not like... they have all been absolutely awesome!

It looks like he will not qualify for SSI/Medicaid which is a bummer. We're hoping to find some way to waver him in on Medicaid once we are denied.

Life continues and I have now had 3 hours of sleep in the last 24... That’s pretty good... right? The nurse just came in for shift change and said they think we'll be heading out on Sunday. This is also a good thing.

Sunday, September 5, 2010

We got home!

We were discharged from Mercy last night and had a quiet day at home today.  Our Lasix has been adjusted and we've added Digoxin now to make his heart pump a little harder.  The cardiologist was most conerned about him eating slower and the amount of weight he'd gained since he was at the cardiologist last Tuesday.  She told us that chances were the surgery would come sooner rather than later.  After the stress of figuring out whether or not he was really in trouble and the worry on the drive to the ER, actually being admitted overnight kind of balances the stress.  On one hand, my kid is in the hospital and he's being poked and people mess with him.  On the other hand I can REALLY sleep because he's on monitors and I know there are people to help if something terrible happens. 

Four to Six months and we should be firmly on the road to relative normalicy.  I crave that and am really ready to head in that direction.

Saturday, September 4, 2010

This is a quick post because I am exhausted.  I'm trying to journal regularly, but the need for sleep keeps getting in my way. Our life consists of eat, sleep, poop and the occasional bit of tummy time.  I have become an exclusive pumping nursing mom so I feed him and pump every time he has a feeding.  At least he is still gettiung breast milk, even if it is not from the breast.   I hope to be able to breast feed after his repair is done.  We will see how it goes.

We are spending the night at Children's Mercy tonight. I don't know when we will be going home. He started eating a little bit slower and breathing a little bit harder than he was so I called the cardiologist and they asked me to take him to the ER. He was admitted into the cardiac floor from there.

I asked if they thought I was being over-reactive or paranoid and they said no... so I feel better. We may end up having to adjust his lasix some.

For my own reference here are the signs that raised a red flag for me:

1. Home health counted 72 resps per minute
2. He was retracting at the neck and belly
3. He had gained enough weight to make home healthcare think twice, she thought it MIGHT be fluid gain
4. He started eating slower and taking more frequent breaks between sucks
5. The angel care monitor went off and it didn't seem to be a false alarm, though he quickly started moving once I poked him.

Children's Mercy is awesome.  I get to stay with him and feed him and since I am exclusively breast feeding they feed me :)  Everyone on the cardiac floor is awesome but I will need to be MUCH clearer with the ER staff when I tell them he has a heart defect.  Our cardiologist's nurse called ahead and I told everyone I talked to that he had a CHD and when I got back to an exam room they STILL weren't clear about it even though he is a patient at this hospital and his cardiologist is here.  MUST be more emphatic in the future.

Tuesday, August 17, 2010

The first week...

Time loses all meaning in the hospital, I don’t usually know what is day or night now… just if it is one of the hours in which we will feed C. Newborns sleep a LOT and we are required to wake him up any time he sleeps 3 hours and give him food. We are exhausted as this means we generally get 30-45 minutes of sleep every 3 hours or so. If we don’t have to eat or shower, we may get an hour.

The hospital here does a graduated epidural spinal for c-section patients, so you get to keep the epidural for the first 24 hours for pain control. This enabled me to stay awake more and feed and seemed to be a great way to get through that initial patch after surgery. For me, a C-section wasn’t that bad. I took 1 Percocet and one Ibuprofen every 4 hours for the second day (after they removed the epidural) now I just take the Ibuprofen.

Over the course of the first day, we mostly slept and fed. The 8pm feeding had Vic and Lolah present so they had a chance to see and hold C and everyone was quite thrilled. The first day is a bit of a blur for me as I mostly slept and woke to feed C. Somewhere between the first and second day they decided his vitals were stable enough that he didn’t need constant monitoring. At that point they moved him into our room and we were rooming in. I wasn’t at ALL ready for this. I was frightened and disconcerted and the nurse who brought him in just dropped him off and left us. We were attempting to breast feed and had previously had help with positioning and latching on, plus neither of us had ever changed a diaper before. We finally got him fed and down and I was actually able to go to sleep with him sitting there beside me. The next time the nurse came in to check on him we got up and fed him again. They decided he wasn’t getting enough from me (since he had only been here about 28 hours all I had was a bit of colostrum). They started trying to supplement formula. He kind of took the first bottle… he was very reluctant on the second and we had to have the nurse help us get him to finish it. The third bottle took a lot of effort to get down, and we called the nurse to help. She thought he looked a little pale and his lips might be a bit dusky so she took him back to the NICU for monitoring. She brought him back for his next scheduled feeding and it wasn’t 3 minutes after I put him on my breast that I noticed his breathing was labored. I called her back and she came and took him back to the NICU. I now assume this was the PDA closing.

They decided that having to actually take food by mouth every three hours was too much for C. So they dropped an NG tube and we went to every other feeding by mouth. I pumped every 3 hours and was there as often as they’d let me. After a couple of days with the NG tube we tried going back to taking everything orally. We made it 24 hours with all feeds by mouth and they removed the NG Tube!! A day after the NG tube was removed we made it 4 days from the initial desat. Once we made it past that 4 days we were allowed to have C room in with us in preparation for him coming home! On Monday, when he was 7 days old C got to move out of the NICU and into the room!

I can’t begin to describe the level of exhaustion and exhilaration I feel right now. Getting up every 3 hours and staying up for 2 or more hours each time has been exhausting. I hope that when we get home we can get a routine that better enables sleep in those brief times that it becomes an option. My schedule for the first nine days of his life was as follows:

Each feeding: Wake up and walk to the NICU (5 minutes), change the baby (15 minutes), feed the baby (30 minutes), cuddle the baby and swaddle him for sleep (15 minutes). Walk back to the room (5 minutes) setup pump, pump milk, breakdown pump and clean parts (30-35 minutes). Sleep an hour to an hour and fifteen minutes or eat or shower.

I am recovering well from the C-section; in fact I tend to forget I had one. I really only feel it at the height of exhaustion at around the 3am feeding. TheMan and I are planning to do a supplemental bottle for every other feeding (bottle feed when we have to give meds) which means I’d pump only at the 9ish feeding, go to sleep, wake up at midnight to bf and pump only at 3 while TheMan feeds the baby then go back to sleep until the 6am feeding giving almost 4 hours of sleep with only one interruption! I think the meds are the scariest part.

Monday, August 9, 2010

Hello! (Its a birth story)

I woke up to go to the bathroom at 3am this morning and discovered that I was in labor. Clearly the first time moms have a longer labor that is usually late does not apply.  My due date is August 21st.  The contractions didn’t feel that bad to me and I hadn’t noticed anything prior to going to the bathroom. However I soon realized my water had broken and I was sure this was the real deal. I have always been told labor takes forever, so even though I knew there was a good chance he was still breech, I took my time in figuring out what was going on and calling the doctor. The doctor wanted me to head on in, I asked if I could wait until 7 so we could drop the dogs off at the kennel, but she said we needed to get there sooner than that. I called my parents and TheMan called his, then we called the doula. My Doula was going out of town this week and so we were really hoping this would not be his birthdate. We caught her at the airport and she was able to contact her backup to come be with us. Both my Doula, Tracey Arwood and her backup Cami Nettekoven were absolutely awesome. My father is also out of town this week. I suspect so many people requested I wait one more week, that the baby had to come just to be obstinate, he’s our son :).
We hadn’t really packed yet since he wasn’t due for two more weeks and “they” say that first time moms are usually late and usually take a long time to labor. We thought either way we’d have plenty of time. We both e-mailed work and started packing up everything we thought we’d need. During that time I had one or two contractions, but they didn’t seem very long and I could breathe and talk through them if I had to, so I still wasn’t that concerned. However, my doctor called me back and asked why I wasn’t already at the hospital. She gave us 5 minutes to get out the door.

The city of Overland Park chose 8-9-10 as the date to repave the roads in our neighborhood. As of 7:30 am any cars left would be stuck in their driveways until at least 6 pm that evening. So both of our cars were a couple of blocks away. TheMan had to run to get his car and put it back in the driveway, then run back again to get my car. The first time he ran for my car, he forgot my keys and had to run back home then run back to the car again. While he did that I kenneled the dogs and texted Jason to see if I could get him to call me when he woke up. I had another contraction as we were pulling onto 69 highway. Changing lanes made the contraction much more annoying, so I had TheMan stay in one lane and flash his lights and honk until other people moved out of our way. We got to the hospital about 30 minutes after we last talked to my doctor (and about 20 minutes before shift change. The nurses were awesome even though the arrival time was less than convenient.

I double checked that they were aware of the baby’s heart defect and possible position. I also updated the pediatrician based on the interview I did last week. Shortly after they got me on the monitors they came in to check baby’s position, in that time I had 2 more contractions. Originally they were about 10-15 minutes apart. Now they were more like 8-10 minutes. They wouldn’t let me up so I had to lie there, which was somewhat harder to take than standing up. I mentioned that I was 3 cm dilated and 75% effaced 2 weeks prior and they said at that it should be fairly easy to tell the position. The L&D nurse was fairly confident she felt a butt and I asked for an ultrasound to confirm. I also asked if we could wait an hour on the section so that the NICU doctors would be in for the day. At this point I’d only had about 15 contractions, so I figured we had quite a haul before things became urgent. The nurse got a funny look on her face and said we couldn’t wait. Then she explained that she’d checked 3 times to be sure, and I was 8 cm dilated. Things started moving very quickly at this point. My doctor was on another delivery so I met Dr. Perryman (also awesome) and he did a quick ultrasound check confirming the breech position. Then we quickly began surgery preps and worked to get enough IV fluids into me. We talked to the anesthesiologist and he allowed both my doula and my husband to be with me during the section. I was upbeat and positive through all the surgery prep and it was actually kind of a trip. By the time we got to the OR I had started in transition and my legs were shaking. They didn’t let me walk there because they were concerned it would further progress my labor. They gave me a combination epidural and spinal block and set me out on the operating table. A few minutes and some pulling and tugging later we had a son. He was born at 7:38am weighing in at 6 lbs 12.2 oz and 18.5 inches in length. TheMan was a bit teary eyed and I definitely was. I was also shaking from the medicines and the weird sensation of not being able to send movement signals to half your body. It was the closest I’ve ever been to a drug trip and it was pretty cool. The NICU nurses were present to assess our new son and after a few minutes they let me nuzzle him and we took some pictures, then he was off to the NICU with TheMan following close behind. My doula stayed with me to keep me company and about 20 minutes later I was in recovery. The NICU team brought him back to nurse within the first hour and he did great! My mom got to hold him for a few minutes and after about 45 minutes back he went for more monitoring. After a couple of hours in recovery, I went to my room and my mother and both of my in-laws were there. They all got to see him a bit in the NICU and then they all headed out with a plan for who would visit when that evening. By then it was only around 11am or so, but it felt like it had been years and the whole world had changed for us. So far, he has good coloring and scores as a well-baby would score. We know that will change, so it kind of feels like waiting for the other shoe to drop. He’s so beautiful and we are so in love, it is hard to picture what he will be going through.

The cardiologist came out from Children’s to do an initial assessment and it looks pretty much like we expected. C has a “pretty big” complete AVSD with an overriding aorta. But we don’t see any signs of pulmonary stenosis. If we had pulmonary stenosis, we would have had a second diagnosis of Tetrology of Fallot. That would actually have been a good thing because the two balance each other out and would have made for an easier wait for surgery. We were too overwhelmed at the time to have questions, so they told us we could talk with the cardiologist who would do rounds on Thursday. We’ll be brainstorming questions for him in the days in between.

Shortly after the cardiologists left it was time for C to feed again. Since he is really doing quite well so far, they bring him to our room and let him feed here. Breast feeding is going well in that he latches on and sucks and I am not in pain. It was strange to only see him for one hour out of every three, but at least we could rest easy knowing they were keeping their eyes on him.

Sunday, August 8, 2010

Pregnancy causes vivid dreams

I have been meaning to post some of those vivid pregnancy dreams I’ve been having. There are three that to this day are so vivid I can still see them clearly. I have no idea what they mean, or how they helped me cope or process what was happening.

The first dream occurred before we knew any details of the defect. This was back when I was just anxious about the pregnancy, without any idea why. I was just waiting for the “other shoe” to drop. I had been given a toy for the baby. It was a red fisher price barn set. When I opened it, cedar shavings fell out and I found that a mouse had setup a nest in the barn. The mouse had mated with the pigs in the set and 1/2 the babies in the nest were regular baby mice, the other half were much larger, pink 1/2 mouse 1/2 pig babies. They had cute little pig snouts and curly pig tails and big mouse ears. I woke up laughing...

The second dream occurred the night after we found out about the baby’s defect. I dreamed we went to see the specialist and they said I couldn’t carry the baby anymore. That instead we had to setup a huge aquarium and they were going to transfer the baby into a fish. They put the fish inside me to get the baby and I looked down at my stomach and saw the dorsal fin of the fish poking out of my body just under the skin. The doctor used the fin to remove the fish and put the fish into the aquarium. The fish started pooping air bubbles with what looked like edemame and the doctor said when the fish poops air bubbles with a kidney bean in each bubble, then everything would be good to go and the fish could take over the pregnancy. I woke up crying...

The third dream occurred several weeks ago, I dreamt we decided to adopt a second child from Korea and when we got there to pick her up, we found out she was a twin. They were letting the other twin die because she had Down syndrome and a heart defect. A caretaker at the orphanage tipped me off and introduced me to the other little girl. I was crying when I handed the baby to TheMan and in the end he agreed to take both girls. The sick girl was already in heart failure and they weren’t giving her any medicine because they were just going to let her die. We shared the heart medicine we had from our son with her. In the end we volunteered for what we fear most. I woke up feeling both hopeful and sad...
All of these dreams were incredibly vivid and full of color and a strange realism. I do wonder why I had them… maybe they’ll make sense someday... but pig-mice... really?

Sunday, May 16, 2010

We did our Fetal Echo on Friday and after some wrangling, they were able to get good pictures. I have been feeling pretty OK with everything after a couple of weeks to process. So I felt pretty prepared for the situation. After the echo, the doctor came in and explained what we know based on the fetal echo (looking inside a body, to look inside a body to look inside a heart isn’t the clearest picture you’ll get).

So, we definitely have a complete AVSD. The valve is one big valve, but it doesn’t leak, which is apparently also a good thing. Finally, because the Aorta and Pulmonary Artery were both the same size, the overriding aorta may be less of a concern. The same sizes mean we probably don’t have to worry about Pulmonary Stenosis.

The current plan is to give birth at a hospital with a level III NICU. They will send over a cardiologist to evaluate the baby within a couple of days after the birth. I’m planning a natural child birth (Lord help me) so now it’s back to preparing for childbirth and whatever comes after!

I still worry occasionally about the 1/3 chance of Down Syndrome. But all we can do is wait and see.

Monday, May 3, 2010

Forward Thinking Worry

Before all this started, I was so worried about what could happen. Everything from cord accidents to SIDS to drunk driving 16 years from now would flash across my mind and I would worry. Now suddenly, all that is gone. Before, I was worrying about all the things that could happen tomorrow, now I’m just glad I have today.

You hear people who’ve had life changing events say that you just live for the day you have and let tomorrow take care of itself. I’ve tried to do that, albeit not very successfully. All of a sudden, I find it much easier. I find the change in perspective interesting, and to be honest I also find it refreshing. All that worrying was exhausting, things are somewhat simpler now. I’m not saying I don’t get intense flashes of worry, but it is worry about what is happening now at least. Something catastrophic (to me) has happened, the world is still turning, and we’re still dealing with it as best we can. All we can do is keep moving forward every single day and take what joy we are given. I hope this is a lesson I get to keep, it seems to be a good one.

This doesn’t mean I don’t plan for the future (for better and worse), nor does it stop me from researching the known issues that we are facing. What it does mean is that I’m a lot less stressed, and a lot more practical on what I choose to worry about.

My husband felt the baby kick for the first time this weekend, that was pretty dang cool.

Monday, April 26, 2010

Waiting is hard

This morning I was still riding the high of our decision to skip the amino. I called the Maternal Fetal Medicine group and cancelled that portion of the appointment. I updated the OB on the decision and then I called Children’s Mercy to try and figure out exactly what was going on and how things should go. After several calls back and forth the MFM group decided that they didn’t want us to come in and ask questions, instead they would rather we consult on the phone with the genetic counselor and hold the medical questions until the Cardiologist appointment which we will have on May 14th. I updated the OB again and let them know we were just going to have a phone consult and wait on the rest. I had about 15 questions for the genetic counselor, she was able to answer some, but most have to wait until we can figure out what we are dealing with at the cardiologist. Waiting is hard, I’ve decided its time to go back to being happy to be pregnant and to just enjoy this process. There is nothing I can do to change what’s coming, I shouldn’t let that rob me of the joy of this experience.

Sunday, April 25, 2010

You just love him, I'll take care of the rest...

Last night as I fell asleep I was praying. It is not my usual prayer which is “good night, thanks for everything, you’re doing great, I love you” I wish it was. Instead it was a litany of what should I do, when should I do it, how do I do this and what if, what if, what if… Suddenly, the thoughts all stopped and I felt a response. The thought was impressed upon me, and now I’m clinging to it like a lifeline “You just love him, and I’ll take care of the rest”. After I felt that, I drifted off to sleep, and I slept well.

Today, I’ve been very anxious regarding the amnio scheduled for Tuesday. After talking it over with TheMan and my Aunt, I’ve decided to ask to post-pone the amnio unless it can tell them something significant regarding my son’s care. We’ve got a 1/10000 risk of the baby having Downs, and a 2/3 chance that the heart defect is not related to Downs. That’s not worth a 1/400 risk of losing my son.

If they need the amnio, we can wait until later and take steps to mature the lungs just in case things go wrong. Nothing changes if we find out the kiddo has Chromosomal problems. We still will do our best to deliver a healthy baby and we’ll still have to deal with whatever we find after the fact. The amnio answers a question that will be answered in a few months regardless, there is no point in taking the risk.

All we need to do is love this baby, God will take care of the rest.

Saturday, April 24, 2010

We're off to a rocky start

I'm 23 weeks pregnant with my first baby (a boy). When I first went to the doctor I mentioned that I was born with a VSD (which I was always told was no big deal, it closed on its own). My OB immediately decided that all my screenings should be handled through Maternal Fetal Medicine. We did the sequential screening and after the measurements and both sets of blood work, my risks were at 1/10000 for chromosomal issues. The first time we tried the level two ultrasound was at 18 weeks, the baby liked to sit as low as possible and at a very awkward angle, but everything we could see looked good, except they thought there was maybe something going on with the heart and that I had a single artery umbilical cord. They rescheduled me for four weeks later.

Thursday, April 22, 2010, we had our second attempt at the level- two ultrasound. This time the baby was up and about and we were able to get great measurements. Everything was measuring as normal, the baby's growth was slightly ahead of his estimated due date and we watched him practice breathing. The sonographer said she'd be back in just a minute because she needed to catch up with a co-worker. Then she came back, along with a genetic counselor and the doctor. They told me my baby had a heart problem, an A-V Canal Malformation with overriding Aorta. I've since learned that this same cluster of heart issues goes by several names including Endocardial Cushion Defect, Atrioventricular Canal Defect (AVCD), common atrioventricular canal (CAVC), AV Canal Malformation and Atrioventricular Septal Defect (AVSD). The doctor and the genetic counselor spoke a lot about down syndrome. The information page at Boston Children's indicates that 1/3 of babies with AVSD also have Down Syndrome ( I also read that if the baby is NOT a down syndrome baby, the heart defect is usually more complicated.

We’re in for a long and complicated ride, with a steep learning curve.