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I want to start from the beginning...  and to let you know that this is not just a medical blog, but a personal one as well.  I wanted to share not just the challenges that this situation brings, but the thoughts and the feelings that it provoked.  Some of them are controversial, but these are things that have been on my heart for a long time coming. 

Baby Elysia Jade was born after a very smooth delivery on Sept 22, 2013- a few days after my own birthday.  She weighed in at 7lbs 5 oz and was 20.5 inches long, although we were concerned with a decrease in activity the night before- on the ultrasound they only estimated her to be 6lbs 3oz- which would have been too small according to her growth curve.  We were lucky enough to able to avoid the induction (water broke on its own after being checked by doctor) and epidural (although Mom asked for it a little bit too late) and there was no concerns.  I had a romanticized idea of having the baby in a whirlpool (not just for my own comfort, but to avoid epidural, allow me to relax, and maybe rinse her off on her way out), which would have been nice had it been available, but we settled for a shower.  It did take baby all of her allocated attempts to pass her circulation test that they conducted in her feet, but they passed her on her last attempt.  I am overwhelmed with an awe of God's creation, how she emerges with no broken fingers or toes, how she knows just what to do right out of the womb.  She suckles well, and the lactation consultant says she does better than most she has seen.  And we left the hospital happy... took a TON of photos to put on her birth announcements.

Visiting nurse comes to the home and weighs her at 7lbs 10oz just a few days after coming home, so we think her weight gain is good.  A week later she only gains a few more oz.  It trended downward for a few weeks after that, attributed to her sleepiness.  As a new Mom, I am a bit overwhelmed by the weakness I felt in the first 5 weeks or so.  You become a little slower than you used to be, doctors tell you not to lift anything too heavy.  This is difficult for me to do.  Bra shopping while your milk is coming in is quite a challenge.  Pads everywhere make you feel like you are falling apart, and maybe you are!  But healing is taking place all the way along...

Then we started to visit the Pediatrician, who found a very slight heart murmur that no one else seemed to notice.  He said it was so quiet, it's probably nothing, but we should have it checked out.  So we set up an appointment to meet with the heart doctor.  I do have a good background in the health field, working as a nurse aide for many years.  I have been studying for nursing for a long time, so I do know a little bit about how this stuff works.  It amazes me how all of your knowledge somehow seems to escape you when it becomes personal.  I watch as they do an ultrasound of her heart after and EKG and all that.  I tended to think if something was seriously wrong, then maybe the tech would say something- although I know they probably are not allowed to do that.  At the end I asked, "did she do OK?" and they responded affirmatively.  I had thought that there seemed to be too much mixing of the blood, because you can see the color-coding of oxygenated blood and deoxygenated.  But I was unsure about the angle that they were looking from, and was wondering if it was a valve or a hole, but I did notice they were taking an awful lot of pictures of it.  Thank God I did have with me my Mother-in-law since I had planned on coming alone, but she just happened to be off of work.  Then the doctor comes in after reviewing her scan, and says "Elysia has 3 holes in her heart, 2 small ones in the atria and 1 larger one between the ventricles, and this is the big concern.  This is a condition known as VSD- ventricular septal defect, and we are unsure of its cause.  Some think there may be links to chromosomal disorders, or there may be early developmental issues in pregnancy but we don't know why.  It's OK though Kim, we are going to get through this," he says as he is all of the sudden holding my hand.  I have to say I was in shock.  I really can't believe that there is something seriously wrong with my new bundle of joy.  She suckled so well when she wasn't over-tired, and she seemed so happy most of the time.  I might have kept my cool in that moment for my Mom's sake, because I did not want to cause her anxiety since she can be known for that sometimes.  He continued to say that sometimes with good weight gain these holes can close up, but she burns about twice as many calories just trying to pump her blood than your average baby, so she needs to consume much more in order to gain weight appropriately.  He prescribed some Lasix first to attempt to keep fluid off of her lungs, and keep blood volume a little lower for ease.  She tends to breathe heavy and fast- you can always feel her little heart beating away through her clothes.  Not sure if that is normal or not.  And so our journey begins...

Baby gets up to 8lbs 3oz then falls from 8lbs 1 oz to 7 lbs 15oz.   After experimenting with formula supplementation and bottles that require less suckling power (although she is pretty strong) she gains progressively 8lbs 4oz, and 8.5oz.  That is where we stand at 2 months of age now.  I feel that until recently I have put myself off on an emotional distant place.  I did not think of this open heart surgery as a reality, only a possibility.  We saw the cardiologist again and on ultrasound it got progressively worse.  It seems as her heart becomes stronger, it causes more mixing of the blood.  At this point I am thankful that we detected the problem early, and that she has not turned blue or anything.  Some people may not know about a condition like this and could be taken by surprise.  Doctor has given her a med called Digoxin which helps to regulate ions in the heart and make pumping easier and more controlled.  We give her both her meds twice daily and she makes a horribly sour face when she has to take digoxin.  Looking into options to make it taste better for her.  Doctor thinks maybe the reason she vomits all the time could be due to enlargement of the heart pushing on her esophagus.  Other worries we had involved pyloric stenosis, a condition her Daddy had when he was born, that causes projectile vomiting due to stenosis of the valve on the lower end of the stomach.  But our doctor did not find any sign of this (thank goodness)- no pit in her stomach, and no bloody strings in her vomit.  But it did come out her nose and stuff.  My little baby will be giggling though shortly after, sometimes still got junk on her face but she smiles through it.  They say if she had pyloric stenosis she would vomit with each feeding.  It happened for us a few times a day regularly, but sometimes would skip a day.   

I felt like an awful mother when I took her in for her 2 month visit and she got all her shots.  Poor baby girl screamed like I had never seen her scream before.  3 At once, all in the thighs.  Her little head turned red and her tongue protruded.  She never imagined Mom would be in cahoots with someone who would hurt her on purpose.  Poor thing trusted us more than that.  I am sure I am not the only one who knows about this, but I understand most moms give their babies Tylenol beforehand.  I didn't even think of it till later that night when I had to run out to the store cause she still seemed fussy, although she slept for a while after our doctor's visit.  Doctor tells us they have chosen a surgeon to work on her, and all of the sudden,  surgery becomes a reality for us.

We are currently awaiting more info from the doc this coming Tuesday.  As I discuss the implications of this with my friends and family, it finally hits me.  Although I have been keeping a very positive outlook on everything- I know we have extraordinary doctors who do this life saving surgery on an every day basis.  But occasionally things just don't follow the plans.  I think of them cutting open her chest.  My little baby.  Stopping her heart so that they can repair the holes.  We have been praying within the church community and family for the last month regularly, but we now make it public and ask for all of the prayers we can get.  I have strong faith and I know that God is able to do exceedingly and abundantly.  To put all of our faith in the doctors could mean placing our daughter in more danger than is necessary.  A lingering doubt in my mind could cause her pain.  And the scriptural music runs through my head.  "Jesus loves me this I know, for the bible tells me so... little ones to Him belong, we are weak but He is strong..."  This simple song reminds me that Elysia is 10x safer in God's hands than mine or the doctors, although he uses their amazing hands to perform miraculous deeds.  It also reveals that in our weaknesses, His strength is made known.  That place where everything is out of my control requires that I put it all in His hands.  When I googled this song, it came up with Whitney Houston's version of it.  This kind of came as a surprise to me since it is considered a children's song.  Yet I believe that Jesus loves us even when we are grown.  Even when we do sinful things- he still made us each by hand, and gave each something special to bring into this world.  It made me realize that there is nothing you can do that will cause God to hate you.  A cultural battle that is waging now is found between the homosexual community and the christians.  And it is looked upon with intolerance within the community of believers since it is not just a momentary lapse in judgement that causes the sin, but a pattern that breeds a sinful lifestyle.  Some may say that it is not a sin, but I respectfully disagree- yet even as heterosexuals we can live lifestyles of sin very easily that are just as bad.  Yet most of these do not go into the church and say, I like to live this way- and church, you had better get over it and support us anyway.  Please don't get me wrong, I do not want this to be one of those blogs, but I do feel this is something the church needs to address, and not just try to ignore it or sweep it under the rug because if we fail to reach this growing group of people, then what could we expect?  We should not fail to try because we are afraid of how someone will respond.  And whomever is guilty of hatred or callousness, it should not be the Christians, because he commanded us to love one another ("...and the GREATEST of these is LOVE"), and that is how we are able to spread His light.  He knows us each intimately, and he gave us all the right to know him in the same way, or to have nothing to do with him if that is what we want.  I understand that many who might read this would find it illogical to keep faith in this day in age.  We are far more modern than that one might say.  We have all these scientific advances that some think proves otherwise.  I disagree.  I believe that each new discovery sheds light on the wonders of God's creations, ourselves included.  I liked a bumper sticker I saw before that said "I believe in the big bang theory:  God said it, and BANG!  It happened."  The doctors mentioned while I was pregnant that the baby is formed from a reformation of the nutrients that I give it, and this is amazing to me.  But no matter what wonder ingredients you might have to put in there, there is no way they can be combined in a specific code, and VOILA!-  become living beings without something miraculous taking place.  That is why you cannot make a baby in a petri dish.  To me, this is a huge piece of evidence that leads toward a higher power.  I have to say here too, that I am a strong believer in the pro-life movement.  Although I feel for those children who are the product of a painful situation like rape, I have known a family who thrived even through this most horrible situation, something beautiful can come from that.  If this is something that is too overwhelming, then there are options such as the morning after pill (not the best most ethical option, but better than waiting and causing pain to an innocent baby later).  And I believe that women have the right to own their bodies, but not someone else's body who is simply supposed to be finding safety in your womb.  I have always heard since I was a child (I think in government class or something) that your freedom and liberty ENDS where someone else's begins.  This holds true because no one has the right to hurt anyone else ever.  Yet our country defends a woman's right to take her the life of her unborn.  This is a shame to all of us.  To think that we are so selfish and egotistical that we think we have a RIGHT to take a life just because it happens to live inside of us.  Ladies- I love you, and you do have the right to CONTROL your bodies!  Please exercise this right and protect yourself from encounters that would put you in a position like this... OK getting off my soapbox now.  Another song that gave me reassurance was this one: "His eye is on the sparrow, and I know he watches me."   And then came the kicker: "He knows my every thought.  [He has each hair of our heads numbered] He sees each tear that falls, and hears me when I call."  And when I looked up the video, it began by saying "I have a maker, he formed my heart..."  and this brought me to tears with no effort at all.  The most powerful music for me are the ones that are taken from scripture.  Yet if we fail to call upon God's name, how can he be expected to work on our behalf?  We are blocking him out of our lives if we fail to pray.  Another great reminder from my big sister was one about looking back on other times when God has been faithful and answered prayers.  There are many of these occasions for me.  My relationship with my husband has been salvaged and made new on various occasions through divine intervention on both of our parts.  Changes that neither of us thought were possible all of the sudden became real when we prayed.  And simple things, like being unable to find a stolen purse for a day or so, and then getting a call within an hour of praying for God to strike someone with guilt.  There was nothing missing.  Not even the $2 that I had in there.

The support of our church community has been overwhelming throughout this difficult time.  They had volunteers lined up to bring us meals (they used an amazing website called mealtrain.com if anyone wants to utilize it) and to allow us to put all of our energy into getting her well and gaining weight when we ourselves were sick.  We worried so much about making Elysia sick, but thank God for breast milk!!  It gives her antibodies against that illness, and she did not get ill even though it scared the crap outta me every time she coughed.  But the church does not only bring regular meals, they bring desserts, gifts for the baby and huge meals that seem like Thanksgiving has come early.  We were so incredibly blessed.  Thank you all for effectively being the hands and feet of Jesus!  I have to say that I would not have asked the church for help had it not been for my sister Amanda's urging.  She feels like she cannot do enough to help us from so far away, so she had offered to call up my church and see if they could help.  I told her that she was right, I should not be afraid to ask for help when I myself was sick and unable to do those things I needed to do for my newborn.  All of the sudden I realized that asking for help was not at all for myself, but for the baby.  How could I take care of her if I did not take care of myself?!  That is one thing that pregnancy and breast feeding really brings to life.  A realization that it is no longer about you, but someone else.  And so I begin to understand motherhood....

http://youtu.be/eRlCj1tmY0E

Kimberly Budnick