Lessons

S takes after his Daddy--they are both very mechanical and need to know how things work. Documentaries are a favorite in our house, especially ones that cover how things are made or how they work. When S found out Miss Iz was ill, he had to know how and why and as many of the details as he could find out. He needed a run down of her surgery before it happened, had to know where she would be cut, how they would get to her holes, what they would do to fix it. It was hard enough just wrapping my mind around the fact that the surgery was going to happen and then I had to do a step-by-step in kid language :p But until he felt he understood what would happen and why, S could not be calm about it. Once he knew, for him it was simply a matter of waiting for it to happen.

Our experiences have sparked an interest in surgeons of all types and surgeon has made it onto his list of things to be when he grows up (along with garbage man, race car driver, policeman, Indiana Jones, fireman, and a Jedi. But not a pilot since he says he would get sick if he had to go up in the air and have turbulence every day...). Not too long ago, he was picking out something to watch together on Netflix and we settled on Gifted Hands: The Ben Carson Story. Ben Carson is a neurosurgeon and S was fascinated with the different procedures Carson helped to develop and/or perfect. We checked out some books from the library about Carson and one of them, Think Big, has been making my brain turn and turn and turn ;)

In a lot of ways, Carson reminds me of our heart surgeon, Dr W--the kind manner, the humble demeanor where you feel as though he thinks of you as equals, just with different strengths. Carson stresses often the fact that just being blessed with gifts that make him an excellent surgeon is not enough. He relies on all manner of people around him--those that influenced him as a child, those that mentored him, those that support him, the parents and patients who place their trust in him. He writes of the good and the bad, his successes and failures. He talks about the good things that have come from patients he lost--the knowledge gained, the specialized equipment that was available later to save others, etc. I can't help but think of Iz as I read--so many came before her. Whether the child lived or died, the surgeons were learning and gaining experience and perfecting the techniques that today save so many. My uncle was a CHD baby; he died around a week old. I wonder what things his doctors learned from him--was their experiences with him instrumental in another baby living?

Carson often deals with the cases no one else will take. He writes about how sometimes, the only response he has to a parent wondering about whether or not their child has a chance is to think of the alternative. Certain death versus a chance. Even if hope is slim, it is still hope. I can't help but think of all the heart parents before me who had the same choice--think of the alternative. Their choices to go for it, whether successful or not, helped my Iz. Parents today are still making the hard choices, still losing their little ones, still taking the chance. Surgeons are still learning. Perhaps helping Iz through her complications helped her surgeon for the next time. Perhaps the heart babies lost recently in the online community helped their surgeons learn and do more in the future.

I wish to thank those who came before, who are walking this journey now, who will do so in the future. Each surgery, each outcome, each complication, each loss, each success, all of them help build the knowledge that will make things better in the future. When my grandmother gave birth, her baby couldn't be saved. By the time I had my babies, many have been saved. Perhaps by the time my babies have their babies, all will be saved.

I'll Be Leaving Now....

I was reading an online discussion the other day about the morning of surgery and how people react.  Some talked of wanting to pack up their kiddo and go home, even though they knew deep down that it was irrational because their little one needed the surgery.  But the urge is still there to just go and pretend all is well.  I was thinking back to the morning of Izzy's surgery--did I start to gather her up and take her home?  No, but I think the main reason was because I kept thinking of my Uncle Jeff.  Born in the fifties with heart defects, he never made it home from the hospital and died about a week after he was born.  I thought of my Grandmother so much in those days and weeks and hours leading up to surgery and afterwards.

The morning of surgery was such an odd mix of fear and giddiness.  I don't think the fear needs any explanation but the giddiness stemmed from such relief that it was time, no more postponements, no more waiting.  It was time.  Time for a repair, time for the chance Jeff never got, time to trust that the surgeon we loved so very much was as good as he said he was.

We had about an hour in pre-op with her before they took her back and we met with the surgeon again, we met with nurses who would be looking after us and nurses who would be looking after Iz.  We met with people I can't even remember ;)   I think, though, that the most important person at that moment that we met with was the anesthesiologist and her nurse.  They came to talk about what would happen on their end (again, since we had met with someone the day before for an overview.  But that morning was the two people who would actually be right there, watching over my baby).  The anesthesiologist nurse stayed with us most of the hour, chatting, asking questions about Iz, making small talk.  We laughed over things, she eased our fears, she got to know us.  We felt comfortable with her.  She reminded me of the wonderful anesthesia nurse I had for my surgery when Iz was born.  When it was time for Iz to go back, she carried her because Iz was already comfortable with her and was happy to be cuddled by her.  If I couldn't be there for Iz, at least a friendly familiar face was while she went to sleep.  I will be forever grateful to that nurse for keeping the fear at bay and letting the giddiness come through.  It meant that my last hour with Iz before surgery was filled with cuddles and kisses and laughter instead of tears (there were PLENTY of those after she left us.....).

Giddiness seems such a strange word for the situation but it is the best one I can think of.

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.

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 :)

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.

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......

Surgery Consult, PT II

The surgeon we were meeting with, Dr W (Chief of Cardiovascular Surgery), got out of his surgery right about the time we were finished with the echo so we had a short wait while he got ready for the appointment. He came out, introduced himself, and let us know he was just going to run over to cardiology to review her echo so we wouldn't have to wait for it to be sent over.

When he was done, it was time to talk surgery. He said she is doing fairly well and we don't need to go in immediately but that he wouldn't wait longer than a month or two because he doesn't want to risk permanent damage to the heart and lungs. So he checked his schedule and his first available is April 10th so we are on the books. He did warn us that he has been seeing a lot of more urgent cases lately so it is possible we could get bumped for a baby (or babies) that need surgery right away. I'm okay with that. If my baby was in a position where she needed her surgery immediately, I should hope another family would be understanding and willing to give up their spot if their baby is like Baby I and has time before surgery becomes an immediate need. Part of the workup was to give her the official Failure to Thrive diagnosis because of her inability to gain weight. He said not to worry about it because in his experience, after surgery she will be an excellent gainer and will soon lose the label :p

Dr W was very thorough in going over everything going on. He talked about the size of her VSD and drew some diagrams about where it is and how it is effecting the bloodflow. He believes the disparity in the size of her Pulmonary Arteries is being caused by the extra bloodflow from her VSD and once the hole is repaired, the PAs shouldn't cause any problems but they will keep a close eye to make sure and Baby I may end up needing a cath at some point. The extra vein Dr E mentioned is an extra Superior Vena Cava that comes in from the left side (LSVC). Dr W says it is considered within the normal for hearts because it doesn't cause any problems and they usually don't even know people have them unless they are looking for something else. It makes the surgery a litte more complicated because they have to adapt the bypass but he says he's done it before and it isn't a big problem. The ASD was almost closed last month at cardio and they didn't see it on the echo this time--Dr W isn't sure if it is closed because they didn't get a clear view of the area during the echo because Baby I was not the most cooperative ;) However, part of her pre-op is another thorough echo so he will take a good look to see if he can see a hole so he can be prepared if it definitely needs to have a stitch or two to close it.

He talked us through the surgery, what to expect, what would happen, how long it normally takes, his expectations for recovery, etc etc. So much information.....We also met with the nurse after meeting with Dr W and she repeated some of the same information and gave us a folder full of handouts and policies and things. And a script for Baby I to go get her blood typing done so they can order the blood for the bypass machine.

It was a very long day and I am sure I have forgotten many things--information overload!

Oh, and Mr. Piper and I were talking about Dr W on the way home--we both got the same impression of kindness, knowledge, reassurance and calm. Excellent qualities to make you feel better about the fact that your baby will soon be undergoing such a major surgery...