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Monday, April 30, 2012

Amazing :)

Part of our discharge instructions were to give Iz a bath every day (either sponge or in her baby tub with just her butt in the water since her incision can't be submerged) so we can gently wash the incision site with warm water and baby soap and then rinse and gently pat dry. Dr W says he uses a plastic surgeon's closure to minimize scarring so there are no external sutures, just the steri strips. The strips are starting to peel off--none have come off completely yet but we are getting a few tiny glimpse of the incision underneath.

The little bit we are seeing looks AMAZING. It looks like someone drew a line on her chest with a pen. We were warned that some people, even though the initial scarring is thin and light, will grow scar tissue and make it bigger and wider and raised but we are hoping Iz takes after me--my first c-section scar was nearlly non-existent. You had to look really really closely to see the very faint line. Of course, crappy closure work by my next surgeon means I had a big ugly bumpy scar--the surgeon who delivered Iz repaired a little bit of that and the scar, while not as faint and fine as the first time around, looks better. Anyway, back from the sidetrack ;) At this point, we are very optimistic about Iz's chances of having almost no noticeable scarring. We've good luck with Vitamin E creams and oils in the past with clearning up small scars from our klutzy boys and Dr W says that he has seen them help and encourages us to go ahead and use it after she is all healed for a few times a day for the next year to help shrink the scar down.

I know it seems vain to be worried about her scar. It probably is. But my girl has been through so much already and will continue to go through so much--even though her main defects are "fixed", she will see a cardiologist for the rest of her life. The RPA stenosis could require procedures in the future. Her cardio team told us she is at higher risk for valve and heart muscle problems later on and she has to be monitored for those issues for her entire life. She has months of meds and checkups she hates ahead of her. When she is a teenager, I would really like if she didn't feel self-consious about the scarring. She may be one of those who view it as a badge of triumph. Or she could be one of those who feels like it just screams she is different when she doesn't want to be. I don't know. I'd rather she not have to worry about it.

Wednesday, April 25, 2012

We are home!

Monday, April 23, 2012

It is all a jumble...

Iz certainly has been keeping me on my toes--she has wanted lots of handholding and head rubbing and foot tickling since she couldn't be held. When she fell asleep, I pretty much was asleep, too, and when I was awake, I was pumping and not able to do proper updates :p So I'll do a little rundown of the past few days but it may be a bit of jumble as my mind is already forgetting some of the timeline! Sleep deprivation or just the mind fuzzing up some very scary days?

So after they took her off the vent, she was doing great on room air but later on her sats started to drop so they had her on a nasal cannula. They were able to start weaning her off it fairly soon but she just would not leave the cannula alone and it was really upsetting for her so they switched her to blow by oxygen (big blue tube aimed at the general vicinity of her face) and she stopped needing it last night :)

When she got cleared to eat, she took about 100ccs from a bottle--gulped it straight down. We thought, great, now we don't need to worry! The bottle hater drank her milk! But she wasn't going to let us off that easy :p The next feed, she ate about half and fussed at the nurse the whole time (she gets mad if I hold the bottle--the first time Dad gave it but he was at home with the boys for the next few feeds). The third, she fought the bottle and took about 20ccs. Dr W thought it was important for her to get a chance to nurse because she was so upset and stressed over not being held and being offered a bottle. Up to this point, she needed sedation to calm down and sleep. So he ordered that she get as much stuff taken out as possible so we could more easily and comfortably move her (they normally don't get babes with chest tubes out of bed). So they removed her arterial line, her catheter, and her pacemaker wires. They couldn't remove the central line because she was still needing potassium (her levels were all over the place). So I got to hold her and she had a few swallows but she was really uncomfortable from the central line and chest tubes so she mostly just wanted to cuddle and complain to me. But when she went back to bed, she slept for several hours without sedation--woo! Her second attempt was about the same with some serious gassy tummy pains added in--but again, she cuddled, and an added bonus of a whole bunch of burps and farts to move that gas out as well as some coughing (they need her to cough to clear out gunk from being on the ventilator). She may not have gotten much food but it sure was a good boost to her morale and physical needs. She didn't need the sedative again after the first time I held her.

Since she wasn't able to nurse enough, they put in a feeding tube and put her on a continuous breastmilk feed--they cut it back to 100cc feeds every three hours the next day. She had a great day--was in a fairly good mood, gave me some smiles, enjoyed watching everyone who went by. Was able to wean off some meds and be almost weaned from others. Switched to oral meds for a few things. Last night she had a great potassium reading and it held steady and remained great so this morning the central line came out :) During rounds, Dr W said her chest tubes were finally ready to come out (they had been draining out too much fluid to come out the day before like they had hoped. But after I held her, the output just dropped off and stayed down (one stopped draining completely and the other was below the threshold for having tubes out--Dr W was right about her needing to be held and getting a chance to nurse. She made so much progress once she had her emotional needs filled :) ). So she was supposed to get her chest tubes out and then her feeding tube so she could nurse. Within ten minutes of them leaving, she wiggled her way down the bed until she could reach the feeding tube when no one was looking and pulled it out--she was in restraints to stop that from happening but she worked around it ;) She then attempted to pull out one of the chest tubes but those were stitched in.

Her first attempt at nursing resulted in a few swallows and a lot of cuddles. Her second attempt ended in a milk coma :)

She is ready to be moved to the step-down unit but they are not sure if they will have a free bed tonight so we may be in ICU one more day. It is possible she could go home tomorrow or the next day :)

Saturday, April 21, 2012


I have been thinking of my Grandma a lot lately.

When my Dad was about S's age, my Grandma had her fourteenth child, Jeffrey. He never came home from the hospital. My Grandma barely spoke about him and when she did, she was so sad that I never wanted to ask questions and find out more. My Aunts and Uncles and Dad rarely spoke of him either. He is buried a few miles away from where I grew up, in a cemetery by the river that holds several generations of family.

When my Dad had his accident just before Thanksgiving, he talked a lot about his brother and Mom while he was on painkillers. The kids were excited about the baby coming home. When Jeff didn't, my Dad talked about how hard it was on his Mom, how sad she was, how much the other kids were hurting, too. My poor Dad, my son's age, looking forward to a baby that never came. I think about how excited S was about each of his siblings, but especially Iz, and I can't even imagine him having to mourn the way my Dad did.

I sit here beside Iz, ready to hold her hand or comfort her whenever she stirs and I wonder if my Grandma got that opportunity. Did she stay by Jeff's side and cherish those few short days she had him? Or did she have to go home and care for the rest of her children? How my heart breaks for her, losing her baby.

My Dad wasn't sure why Jeff died but after Iz was born, one of his older sisters told him Jeff had heart defects, she couldn't remember which, but they were bad enough that he only lived a week. When I heard, I held Iz close and thanked God that today, fifty-some years later, doctors know how to fix so many things. I think my Grandma would hold Iz close, too, and be grateful that her beautiful great-granddaughter will get the chances Jeff never did. Grandma would have adored Iz.

Friday, April 20, 2012


Well, all the little chair-beds were taken out in the family waiting room and all that was left was the uncomfortable chairs that are also in her NICU room--if I was going to spend the night in an uncomfortable chair, it might as well be the one where I can also see and touch her anytime I want ;)  Good thing I stayed with her, too--everytime she woke, the only thing she wanted was for me to touch her and talk to her (and take out her vent but I couldn't help her with that one).

She had a few little setbacks.  Her urine output wasn't enough so they started her back on lasix (she's been on lasix and aldactone for five months so they are thinking she might be a little dependent on it and once they get her kidneys working properly, they can wean her off instead of cold turkey).  The lasix alone wasn't quite doing it so they added a new diuretic she has not been on (something with a d) in addition to her lasix and that seems to have done the trick--they are pleased with the increase in urine.

She also had several episodes of her heartrate suddenly dropping, none low enough to make the pacemaker turn on and most of them very short episodes but it is still a concern.  She will keep the pacemaker for a few days at least and hopefully it will resolve.

They were weaning her off some of the blood pressure/heart meds but her bp started going up so they had to increase one of them and slow down the weaning process.

They were aiming for a 6ish a.m. extubation but Little Miss was a sleepyhead and just kept napping.  She finally started being awake and alert enough to get her vent out around noon so now she is vent and ng-tube free :)  She was very chill about the whole thing and barely fussed at it--one of the doctor's commented that it was the most relaxed intubation he had ever done.  When they had the tubes out and put her nasal cannula in, she let them know what she thought of the whole thing by blowing raspberries at them ;)

We also were able to get rid of some monitors so no more leads on her forehead and back--I can see her whole face again!  She is napping again but that's great--sleeping means better healing :)  And she has been quite comfortable--they are doing pain meds as needed and her nurse last night was surprised at how long she is going between doses. 

They are hoping we can start getting rid of even more tubes/lines/monitors tonight and tomorrow--I hope so!  Her hands are restrained so she can't grab things and yank them out but her feet are free and she is very handy with those toes....we caught her trying to pull one of her chest tubes out with her feet :/

Overall, she is doing great :)

Thursday, April 19, 2012

PICU baby

It certainly has been a busy afternoon!  Once she was out of surgery, it seemed like things moved very quickly.  We got to meet her at the elevators and see her and touch her and then she was whisked off to the PICU.  I went to pump and then had just a few minutes to call some family and talk to an insurance lady  before it was time to go back and see her.

I have spent a lot of time holding her hand :)  She was coming out of the anesthesia much earlier than anyone anticipated and squeezing my fingers when I tried to take my hand away was one of her first movements :)  When she eventually falls back into a deeper sleep she lets go but whenever she is semi-conscious, she wants Mommy's hand :)

The surgery went well.  They patched her large VSD.  Her ASD had closed completely on its own.  They discovered she had more extra veins than just the extra superior vena cava so they didn't do the traditional bypass but another version (I cannot remember what he called it).  They thought she might have right pulmonary artery stenosis and may have needed angioplasty but he says when they got in, it wasn't too bad and he believes it will resolve enough after recovery that it wont need any work.  They will watch it, though, and may need to do a cath later if it causes problems.

They hope to have her weaned from the ventilator tomorrow morning.  They are already weaning her off some of her heart meds, although she is still on them, just lower doses (I can't remember the names--something with an M and something with a P).  She needed some platelets and albumin and potassium.

When they were warming her up to get her off bypass, she had heart block so she has an external pacemaker as a backup.  Not too long ago, her heart rate dropped while I was away pumping but not low enough to make the pacemaker kick in.  Shortly after I returned, she had another drop.  They are keeping a close eye but may need to set the pacemaker a little higher if it keeps happening.

They gave her a little sedation to help her rest and sleep and I suppose I should go into the waiting room with the little chair beds and try to take a nap but I'm not ready to leave her yet unless I have to (basically to pump and to get food :p)

Off bypass

She is off bypass and they are closing her up. The nurse said it will be about half an hour and then the surgeon will be out to talk to us--after that, we can see her briefly before they take her upstairs to the PICU. It takes about an hour to get her settled and then I can be with her.

Open heart surgery

We got here just after 6am and there was more paperwork and vitals and meeting with various surgical personnel. A bit after seven they took her back--they said they had about two hours of prep work so we expect an update soon that the actual surgery has started.

Monday, April 16, 2012

All of Me

Just a few days to go and it seems more and more real.  Before, it was this thing that was off in the distance but now there are phone calls to reschedule appointments, there is packing for the hospital, there is explaining to a child who worries constantly what is happening without freaking him out too badly, there are ladies at church praying and giving me their phone numbers.

We drove up to the surgeon's office today to drop off paperwork for Mr. Piper's job so he can be off for the surgery and initial recovery.  I bought some comfortable clothes for my many many hours by Izzy's side.  I bought snacks for my parents' house for the days the boys will be there.  I am cooking weird meals to empty the fridge before we are gone for so long.

It is real.

A while back, another blogger (sorry, it escapes me who!  If you are reading, feel free to let me know I snagged this from you and I'll link your blog :) ) posted about a song by Mark Hammitt that I have been listening to so very much lately. 

It was written for Mark's son, Bowen, born with HLHS.  I sing this to Iz and she smiles and swoops in for baby hugs and kisses :)  The song is a reminder to cherish each and every minute--my time with her should not be clouded by fear and worry.  Its true for all of my children.  You just never know what moment may be your last.  Whether I have one more day or eighty years, every day is a blessing and a chance to show them how much I love them.  The old cliche about children being the greatest gift?  Absolutely true.

Tuesday, April 10, 2012

New Surgery Date

We got the call from Dr W's office today--Baby I will be having her surgery next week on the 19th.

Its strange--we had the April 10th date for over a month but it never really got to the point where it seemed real. She got sick and was admitted to the hospital before that happened and we knew right from the beginning that once she was admitted, there was no way they would do the surgery as scheduled because they need her to be well for at least the week before surgery. When they officially told us they needed to reschedule, we thought it would be several weeks, maybe even May. Getting the call that its next week? Is very very real. I think we may be freaking out just a tad......

Monday, April 9, 2012

Looking beyond tomorrow

The boys were very excited about going to church today because they got to wear their "fancy new clothes."  Usually church is sorta casual because they play a lot in Sunday School and it is not unusual for them to go to the playscape outside or to paint or eat messy snacks.  But for Easter, they got some new dressy clothes and they were so excited to wear them :)

Its hard to see in these pics but they each had on little ties :p  B was beyond excited to put his tie on :)

While the boys were in Sunday School, Baby I and I found a seat together to watch the Easter Program.  Before things started, Baby I got some compliments on her new dress:
One of my favorite parts of any holiday/special day at church is the song and dance by The Littles because they are so gosh darn cute.  B gets super shy and usually doesn't make it very long on stage and is held in the audience by one of the teachers but I am always hopeful that he will participate one of these days ;)  Sometimes, S's class is up there with The Littles and S is always.....entertaining LOL  He does his own thing and his antics often get a laugh and I am never sure if I should lecture him about participating the way the teachers intend or to just sit back and laugh at his faces and special dances.

Today, though, a little girl on the very edge of the group on the side Baby I and I were sitting on caught my attention.  She was adorable, a little pixie in a pretty green dress.  She was so little and dainty and she just looked too small to even be able to remember all of the moves of the dance.  But she was completely into it and enjoying herself so much.  And Baby I was mesmerized by her--just watched her and danced along with her and sang with the song.  I couldn't help but think of how tiny my baby is and how people often have trouble believing she is almost seven months.  I imagine the little pixie's parents run into the same problem.  The little pixie was having such fun and Baby I was having just as much fun trying to sing and dance with her and staring at her the entire time--I couldn't help but think that someday, it might be Baby I up there, tiny and cute and completely in tune with the music and dance.

With the boys, I had thoughts like this all the time. Oh, someday, S will just love to do that.  Someday, B will have so much fun trying that.  Someday, S would look so handsome in a shirt like that.  Someday, B will tell me things like that.  I still do it with them, still look at them and imagine and wonder what their somedays will be.

To be honest, though, I can't remember ever doing that with Baby I before today.  I am very much in the present with her, never thinking much beyond what today will be.  The closest I come to somedays with her is thinking ahead to her next doctor's appointment.  And I don't want to ask myself why, don't want to admit it is because I am afraid, don't want to admit that in this instance the fear wins.  Her surgery has an excellent survival rate.  In fact, I couldn't ask for a better one (well, unless it was not needing it at all).  But if I think beyond today or tomorrow or next week, I fixate on that small percentage who don't make it.  I don't want to think about that percentage, I don't want to entertain the idea that we could be one of those numbers.  I don't want to someday be at the point I imagined Baby I at and have to mourn all over the loss of the dreams I once had.  So I don't think about somedays, just today.  And even though I miss the fun of the somedays, I just can't.  Not now, maybe not ever.  When the surgery is over, if all goes well, will I relax, will I start to think about somedays?  Or will the fear always lurk in the corners and keep us in today?  When can I look beyond tomorrow?

Thursday, April 5, 2012

Home again

We finally got discharged from the hospital last night around 10pm and got home a bit after 11. IT was so good to sleep in my own bed :p I think Baby I was happy to be home as well! I know B was happy to have us home--he wouldn't let me out of his sight all day :p

In other news, B has officially been accepted into the preschool program next fall so he can continue to receive speech therapy in a more structured setting. He will continue to go to playgroup once a week until June and then will go to preschool everyday next year.

I need to do a proper update on S's IEP meeting but I AM TOO TIRED RIGHT NOW :P So tired that even thought I have just noticed the all caps of the end of last sentence, I am not going to fix it.....

Oh, and Baby I's surgery is being rescheduled :/

Sunday, April 1, 2012

Still in the hospital

So yesterday we went in to the ER because Baby I was just acting "off" and not feeling well and they ran a bunch of tests to discover she has the flu. They said normally, they would send her home with care instructions but because of her heart, they wanted to keep her overnight for observation. She was slightly dehydrated because she hasn't been eating all that well so they had her on some IV fluids. Once she was peeing well again, they took her off to see how she would do because IVs plus her heart meds aren't always the best combo. She has little interest in eating and has thrown up several times as well so today she went back on the IV and we are here for at least one more night. Hopefully tomorrow she can not only eat a decent amount but keep it down. However, she had another big vomitting episode a little while ago so I dunno :/ The husband went home tonight to be with the boys so its just Baby I and I tonight. She is actually sleeping in the crib instead of insisting I hold her so I should be sleeping, too, but I can't :/ Every little noise has me popping up to check on her.....

They still have her on the Tamiflu (not Theraflu as I typed last night LOL) but I don't think she has managed to keep even one full dose of it down......

Her cardiologist, Dr E, came to the hospital to see her today--he thinks she is looking really good, despite the illness. He was very pleased with how well she is breathing right now :)

An unexpected hospital stay

Baby I wasn't feeling well and just wasn't acting like herself so we brought her to the ER to get checked out. She tested positive for Flu A so we've been admitted. She was given some Theraflu and is now asleep on my chest. She is very grumpy when she wakes....