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Sunday, February 26, 2012

'Try to exclude the possibility of suffering which the order of nature and the existence of free-wills involve, and you find that you have excluded life itself.'
--C.S. Lewis, The Problem of Pain



I am a rather stoic person. When there is a tragedy, whether it is sudden or takes place over time, I am calm. I am the arm to lean upon, the shoulder that soaks up the tears, the calm that takes charge. I have heard, many times over the years, that I am unfeeling, abnormal, accused of not caring. I can count on one hand the numbers of times that I have lost it on the spot. My calmness, though, is not about not feeling the pain and fear and grief of the situation--it is there, always there, but I take a deep breath and move forward because that is what needs to be done. Even as a child, I controlled grief because I was needed by others--for my mum when her dad died and she was hurting so very much, for my dad when he lost his father and needed a hand to hold, for my cousin who sobbed in my arms when my grandmother passed. I was needed and so I took that deep breath and stood strong. Tears and anger and grief came later, when I was no longer needed, but no one sees those.

A little over five months ago, I sat in a hospital bed, cradling a beautiful, tiny, precious sleeping baby girl and listened as a doctor told me her heart was defective and that while he hoped it would resolve itself, they may need to do open heart surgery. It is one of the few times where I have broken down immediately and cried with my little girl in my arms. Surgery, on such a tiny baby. So many risks, so many things that could go wrong, so many unknowns. But for the next five months, I researched, I discussed care and symptoms with doctors, I kept a smile on my face for my boys because S is my worrier and I did not want my six year old living with the fear my worry would bring, I spoke calmly of surgeries and recovery and what needed to be done. Any tears shed were a single one here and there, quickly breathed away because there were things to do and moving forward was the only choice.

The other night, a mother on one of the CHD boards I read shared her heartache with the group--her precious little girl had passed away. Other mothers shared their stories of loss with her to help her feel that she was not alone in her grief and guilt and sorrow. For the first time since Dr E first told us that our new baby might need surgery, I was overwhelmed. There was no breath deep enough to push the tears aside. Tears for the mothers and fathers that had to say goodbye to their children, for the children who never got to live their lives, for Baby I and the struggles she has already had in her short life, for myself and the fear and pain and sorrow and anticipation of what-may-be that is my constant companion. I try not to think about it often because if I did, it might cripple me. I am afraid. Afraid that I will not see her grow up, afraid that I will never hear her say "I love you", afraid that my boys will grow up without her. But if I think of these things for more than a few seconds, I might be paralyzed and miss the time I do have with her. So I will hold her close and kiss her soft little cheeks and surround her with my love. Those moments of pain are my reminder to cherish the life I have with her right here and now.

I appreciate all of the thoughts and prayers all of you have for my sweet girl. But perhaps from today on, you would also send a prayer of strength and healing and peace to all of those mourning the loss of their precious little ones as well as a prayer for those who are waiting to see where this journey will take them.

Friday, February 24, 2012

Notes on Baby I:

**We had our weekly weight check today and we have a small gain :) Last week was 12.11.8 and today was 12.15.4 :) So close to 13!
**Teething is kicking our butts. Baby I has been so unhappy, crying and trying to pull her ear off on the left side. The nurse who does her weight checks called the dr in to take a quick look at her ears, just to make sure they were ok. They look good so its just teething. Part of me sorta wishes she did have an ear infection because then she could have some meds to clear it up (like her brothers just went through) and she would feel better. Ah, well, maybe we will finally see that tooth pop through *fingers crossed*
**Baby I's breathing has not been very good. She sounds incredibly congested although there is nothing stopping up her nose--its just the fluid buildup from her heart and lungs. Poor little girl :( However, she has never turned blue that we have seen and she only turns dusky rose when she eats for too long or gets too worked up playing. It could be worse, right?
**She has been sleeping a lot more--she slept most of the day. However, when she is up, she is much more alert and active than she has been. I guess a few periods of alert baby are better than many periods of listless baby :)
**She has been able to eat for longer periods before getting too tired :) Still not as long as she used to eat but better than it was a few days ago.

Baby I has also received a few presents in the mail and I need to get some thank yous going for those :D It really does brighten my day to see how much love there is for her out there!

Tuesday, February 21, 2012

The Call

We got The Call yesterday.  The surgeons agree with the cardiologist--she needs Open Heart Surgery.  Which we knew--Dr E knows the criteria for surgery and wouldn't have sent her to them for referral if she didn't meet those criteria.  But I guess there is still this little part of you that thinks well, maybe, just maybe, they will have some alternate treatment that will not require stopping my baby's heart......

We have an Echo scheduled for March 15th and then meet with the surgeon immediately afterwards to discuss where we go from here (more testing, when to do surgery, etc).  At this point in time, we are scheduled to work with Dr W, the Chief of Cardiovascular Surgery at the Children's Hospital.

Thursday, February 16, 2012

No weight gain this week.....

Again.  Last week on Monday morning, she was 12 lbs 9 oz at Synagis Clinic.  At her ped's that afternoon, she was 13 lbs even (??).  On Wednesday at cardiology, she was 12 lbs 10 oz.  Friday at the ped's, she was 12 lbs 15.2 oz and today at the ped's, she was 12 lbs 11.8 oz.  So according to some measurements she gained while according to others she lost.  So we are calling it a wash  :p  Nursing has been a struggle for her the last few weeks--it just makes her too tired and she has to rest often during a feed.  And when she does get the energy for a full nursing session, her reflux kicks in and she spits up large amounts of it *sigh* 

Poor Baby I slept most of the day today but she did have some fun this evening playing with Auntie H :) 

Monday, February 13, 2012

What will you regret?

A little while ago, I was in the kitchen washing dishes and Baby I was playing in her bouncer nearby. She started to fuss and I talked to her, letting her know I was there and almost done and to just be patient. I was nearly done with the dishes, wanted to finish them up, didn't want to leave them until later, I was on a roll so I should just finish, etc etc. You know the things we tell ourselves.

And then it occurred to me--if, in the near future, a surgeon comes out and begins his update with the words "I'm sorry..." I will not regret leaving my dishes dirty.

I pick up Baby I and she puts her arms with their delicious little dimpled elbows around my neck and hugs me close. She presses her soft little cheek against mine and sighs as her body relaxes. She smiles and closes her eyes and her entire being is completely devoted to simply enjoying a mommy-cuddle. Those dishes are still sitting there, waiting. But I will never regret leaving them there.

Saturday, February 11, 2012

Smile!


Today, I got a whole lot of these smiles and giggles and full-on belly laughs :)  She may not like taking yet another medication but I am thinking this reflux med is a keeper :) 

We had a quiet night

On Wednesday, we talked a bit with Dr E about Baby I's reflux.  He thought starting some Zantac would be a good idea to make her comfortable leading up to surgery and during recovery so yesterday we headed in to Dr A's office to get a script as well as to have her cough checked (again).  Lungs are still clear but poor little baby girl just sounds awful :\

Got the script filled for her Zantac and gave her the first dose last night--she hates it even more than the Lasix and Aldactone!  Poor little gal chewed me out for making her take it.  However, it has made me cautiously optimistic since we had a rather quiet night last night.  She still woke up often to nurse (in the last week or so, she just doesn't have the energy for a full nursing session so she eats for a minute or two and then has to rest.  Instead of a feeding taking ten to twenty minutes, it takes about two hours) but there was no crying or restlessness or misery.  And no crying and misery this morning, either.  She is back to being a "happy spitter" instead of a miserable one.  Eating has become so tiring for her that it breaks my heart to see any of it spit back up but at least it isn't hurting her anymore :)  My hope is that this is not a fluke and she continues to be comfortable!

Friday, February 10, 2012

The World is a little brighter....

Since we found out that at some point in the near future Baby I will need open heart surgery, I have been focused on some of the clothing items she will need while in the hospital.  On a couple of the online CHD groups I have found, the list is the same--dress baby in long-sleeved button up shirts, a diaper and baby leg warmers and socks.  Button-up shirts because for a while after surgery, you can't lift their arms over their heads to pull on a pullover shirt.  No onesies or pants because they make diaper changes more difficult for baby because of the extra lifting and moving that can cause pain in the incision area.  Long sleeves and leg warmers to keep them warm.  On Wednesday when Dr E told us, I stopped on the way home trying to find these things.  And couldn't find them.  Yes, I am obsessing over the little things rather than thinking about the big things.  Yes, I am completely stressed out over not finding long-sleeved button-up shirts or leg warmers.

But that stress has been partially lifted :)  Several people have offered to send Baby I some hand-me-down baby leg warmers that their children no longer news :)  And in the midst of a situation we wish we never even had to consider, the world is a little brighter, a little more joyous, a little more thankful.  People who have never met Baby I and have only seen pictures will take some time out of their day to send her something to make her stay at the hospital more comfortable. 

Thank you, world, for having such wonderful people :)

Thursday, February 9, 2012

Open Heart Surgery



Today was Baby I's five month cardiologist appointment.  Every month, we go in expecting to hear its time for surgery and each month we are both relieved and scared that it is postponed another month.  Relieved because it means she is doing okay, considering, and that there is still hope that her heart will repair itself and she will never face the trauma of surgery.  Scared because it means another month of watching her struggle to breathe, of worrying about every cough and gasp and ounce, of anxiously watching to see if she begins to turn blue.  Surgery could fix all of that, could ease her breathing, help her gain weight, give her a normal thump heartbeat instead of her swish-swish-swish beat.

This month, there is no postponing one more month.

Good news first--her ASD (which was medium sized at birth) is almost completely closed!  That one has steadily shrank and the cardio thinks the surgeons may place one stitch in it to pull it closed and help it seal the rest of the way (or it may be completely closed on its own by the time she gets to surgery).  One less thing to worry about :)

Her VSD, however, still has not budged.  It is oval shaped, 5x9mm, and is the defect causing most of the problems.  She has been on generic Lasix and Aldactone since she was two months old to help reduce the fluid buildup on her heart and lungs but its worse.  He upped her dose of Lasix to try and help her out until surgery but the left side of her heart is now enlarged.

The artery that wasn't growing properly at her last echo?  Even worse now :/  It is the Pulmonary Artery leading to right lung (or was it the left?  I left my notes in the van and the husband took it to work) and it is half the size of the Artery leading to the other lung.  If they both were small or large, it wouldn't be as big a deal but the large difference in their sizes is a problem.  He thinks the surgeons may want to do a cathartization before surgery but they may decide to repair it while she is in surgery.  One more thing to wait and worry about.....

The last thing he told us is that she has an extra vein leading into the heart that shouldn't be a problem, it will just mean they have to place an extra line or something during surgery for bypass.  He said that during pregnancy, there are four veins leading in and at birth, they pair up and fuse together to form just two veins.  Two of them did fuse for Baby I but the other two remain separated.  I have a new thing to obsessively research while I wait ;-)

Oh, and the other worry was the fact that she has completely fallen off the growth chart.  She was up to twelve pounds nine ounces, not quite one pound from her last visit.  Every ounce was hard earned but she just can't get enough of them and feeding has become increasingly difficult for her between the reflux and how tired she gets.  

Next step is for Dr E to send Baby I's file and echo pictures and EKGs to the surgery committee for review.  The committee meets on Tuesdays at the Children's Hospital so we have at least a week before we hear anything, possibly two if the surgeons are called into surgery and can't make the next meeting.  Then we will get a call to schedule any needed tests/procedures before surgery and find out how soon the surgeons want to operate.

It just doesn't feel real.

Monday, February 6, 2012

Another busy week

It seems like many of Baby I's appointments get grouped all in the same week so we are constantly running about and then the next week we just have her weekly weight check and that's it :p This week is only three appointments, though, so that isn't too bad :)

First appointment of the week was this morning at the Children's Hospital in the City to get the next round of Synagis. The wonderful IBCLC we work with now and then suggested we trying nursing through the shot to see if that helped her pain levels so we gave it a shot555 today. It took Baby I a few moments to realize she was getting a shot so it was just about done before she started crying and she cried for less than a minute and then went back to eating. YAY! Much better than last time! I am hoping the nursing helped and it wasn't just a fluke so we can get similar results next month. She was so miserable and upset over the shot last month that it was a relief that she took it so much better this time. Still hard to see her upset and hurting, even if it was to a lesser degree :\

This afternoon brought an emergency trip to the pediatrician's office (so I guess you could say we have four appointments this week?). Baby I had a very slight cough over the weekend, probably the same virus that made her brothers (and me) sick. I had thought she was going to escape it before the little cough started but, alas, no. The little cough turned into a wet congested cough by last night and just continued to get worse over the course of the day. By mid-afternoon, poor little dear would cough, gag, throw up, and then cry :*( So off we went to see Dr. A. Baby I's lungs are clear, her ears are clear, no signs of infection so Dr A. is thinking its just a regular ole cold made a little more miserable by Baby I's reflux plus the underlying congestion she always has from her heart condition. Poor little mite :( Oh, and at the ped's office, she came in at thirteen pounds even. Which is slightly off because she was wearing her onesie today to keep her warm but the ped says that shouldn't throw it off by more than a few ounces and so she should be hitting her one pound mark at the cardio's office :D Now let's hope the coughing-that-leads-to-vomiting doesn't make her lose some of that precious weight and put her back under a pound for last month's weight gain.....

Wednesday is cardio and we get our next echo to see how her holes and artery are doing.

Friday is one of her home nurses coming to visit.

I have many things I should be doing but I think I might sleep instead :p

Friday, February 3, 2012

Six more ounces!

We have been hit by another round of The Sick.  S spent most of the weekend feeling miserable and missed Monday, Tuesday, and Wednesday of school.  At least there was no vomiting this time! Just a regular cold--low-grade fever, chills, aches, congestion, runny nose, sneeze, and cough.  S sure was happy to go back to school today :p  He doesn't even like weekends or vacations because it means he has to be away from Miss B and his friends LOL  He has a really great day in school today :)

B started sniffling two days ago and by this morning, the poor bubs sounded just awful :(  His cough rattled and he was wheezing up a storm :(  I perhaps may be just a wee bit paranoid when it comes to coughs in the kidlets--I am prone to bronchitis and get it several times a year so when I hear rattling coughs, I want a doctor to listen to their lungs :p  Every doc who treats my kids learns this quickly during cold and flu season :p  Thursdays are when we try to do Baby I's weekly weigh-ins so I brought B in so Dr A could have a listen.  His lungs are clear but he has some infection going on in his ear and upper respiratory system--poor guy takes after me:  it develops really quickly and won't go away without a little help.  She prescribed some meds for him to take to clear things up so hopefully he won't feel so bad soon!

Baby I weighed in at 12lbs 9.8oz!  Way to go, little girl!  Last week was 12.3 :)  Fingers crossed that Wednesday's cardiologist appointment sees a few more ounces--Dr E wants her to gain at least a pound a month and we are almost but not quite there.   Dr A is thinking we may need to start thinking about starting Baby I on Zantac for her reflux--poor little thing is starting to experience more and more pain and crying from it and while the cereal did help her keep more food down, she has now decided she absolutely will NOT eat it anymore so we are back to copious amounts of spit-up.  I am going to talk to Dr E about it and make sure Zantac won't interfere with her meds/heart and if he gives the go ahead, we'll talk about it with Dr A.  It would be lovely if we could stop the hour long crying and arching the back and misery sessions :(

Next week will be a busy one:  Synagis on Monday, cardio on Wednesday, and one of the nurses on Friday.  I am REALLY nervous about cardio; we get the next echo.  Have the defects closed any more?   Did that restricted artery grow at all or is it still too small?  Will her blood pressure be OK?  Will her lung function still be in the OK range or is the continuing decline in her breathing a sign that it won't be all right this time around?  Is her little heart keeping up with her body or is it time for surgery?  Part of me wants to avoid surgery, to let her little body heal on its own, to not have to take the risks of open heart surgery.  Part of me just wants my little girl to be able to breath without straining, to play for more than a few minutes without being flushed and sweaty and tired, to nurse without getting dusky and exhausted, to grow normally instead of fighting for each fraction of an ounce.  *sigh*