36 weeks and counting...

Well we are getting close!!! I am 36 weeks pregnant and Hallie is growing like a weed! The fetal specialist, Dr. Tabor, is measuring her at 6 lbs 15oz... that is how big Avery was when she was born at 38 weeks.  Crazy.  We are all doing well and managing our stress level fine. As the days tick by, I get more and more nervous.  They are still saying a VBAC is do-able if that is what I choose to do... but things may change as we get closer...
Other than that I do not have any news to report.  I am in MAJOR nesting mode, cleaning out everything in the entire house.  Trying to get as prepared as possible.  On my list today is pack a bag!


We are looking forward to Easter!! Be thankful for your family, friends, and God's abundant love!  Thankful that He sent Jesus to teach us of God's loving ways and to die for our sins.  Where would we be without Him!  I can't help but reflect on how Mary must have felt watching her only son beaten and tortured for his love of the Lord.  What pain she must have felt.  As a mother I can not imagine.  She never seemed to lose faith in God even through all of the unnecessary brutality that Jesus endured... I can only hope and pray that the Lord blesses me with that type of strength when I need it most.

May the Lord bless you and protect you.  May the Lord smile down on you and be gracious to you.  May the Lord show you his favor and give you peace.

Numbers 6:24-26

Update

Just an update on what all we have been up to over the last couple weeks...
It has been craaaazy around here. Avery turned the big 2 on Feb 27 and we had her Dora birthday party at the wonderful playground at Christ Chapel...unfortunately the poor birthday girl had to leave right when it started because the stomach bug struck... hard... 30 minutes before the party started!! So her friends and family enjoyed the party and cake and she opened her gifts later that night when she was feeling a little better.  Her appetite did not come back for a week! Literally.  The rest of us got it a couple days after she had it...wow oh wow... I literally have not been that sick in years, fever, aches, chills, pregnant with a 2 year old running around. NOT fun. But we are well now and loving the warmer temps.


I will be 32 weeks along on Monday, March 17.  My belly is huge! Hallie moves a lot! She has some sharp knees and elbows I tell ya.  Last Wednesday, March 5, we had our 2nd echocardiogram with Dr Roten and met the surgeon, Dr. Tam.  Such a long day! The thing is, on a day to day basis, I sometimes forget what is going on, and we all feel normal... then you have a day like that where you do nothing but think about it and it is so exhausting! I've said it before but its the same every time...it takes a couple of days to come down, back UP rather, from that.  Its emotionally taxing.  The echo showed everything to be the same as before and progressing at it should... Dr. Roten does not feel she needs to see us again until Hallie is here...which is good b/c they do not think they will see any changes in the things the echo is picking up...but the reality is that we really do not know the whole picture until Hallie is here.  Unsettling, but I get it.  Dr. Tam is fabulous. I feel Hallie will be in great hands.  He is very knowledgeable, very impressive, and very personable.  I just like him.  He is an optimistic type person and says he will only be optimistic with us.  He did not have a whole lot of heart info to add really because Dr. Roten has done an exceptional job of informing us and answering every tedious question we have.  He stresses that we have to take these surgeries one at a time...we have a long road ahead of us, take it one day at a time...every heart and every baby are different thus making our journey different from anyone else's....that we can not compare our baby's issue to anyone else's because these situations are so individualized...what happened to the family next to you with the same defect may not happen to you at all and vice versa. 
I read somewhere that you have to look at each baby's heart as if it were a snowflake... there are no two alike.


As for my OB appointments and labor etc... They are now saying I will not go past 41 weeks (May 19) and more than likely not even 40 weeks (May 12).  If I am not showing any labor signs at 38 weeks, and depending on baby's estimated weight. then we will likely schedule a C-section. I will not be induced because they do not like to induce VBACs because the Pitocin is too harsh and makes contractions too strong for a uterus that has scar tissue/has already been cut once.  They do not want to go too far past my due date because of the risk of baby having a bowel movement and ingesting meconium (baby poo)...that can cause respiratory infection and the lungs have to be as healthy as possible.  SO... as much as I hope and pray I go into labor on my own and its a normal, easy, fast, perfect delivery...I am not getting my hopes up.  There are 2 main reasons I would prefer a regular delivery over a cesarean...
1. It is great for baby to go through the birth canal to squeeze out the excess amniotic fluid from her lungs... I worry about those lungs.
2. I will get to hold her for 10 minutes or so before they take her to the NICU.
Then we won't get to hold her for a week... except a few minutes right before her surgery. 
With a C-section the likelihood of ME getting to hold her is slim.  Donny will hold her, I will get to see her right up next to my face but my arms will be strapped down and by the time they sew me up, which takes about 20 minutes in a perfect world, she will have to go on over to the NICU.
Maybe #2 is a selfish reason... but I won't do well with that... I already know it. They will wheel me over to see her and all...and we can touch her...but you mama's know its just not the same.  Longing to hold a baby you have been carrying in your belly for 9 months and then you can't hold them in your arms... torture.  We will get through it tho. It is what it is.


I have been asked a few questions and thought I would answer them here incase anyone else was wondering the same:


One term a lot of people, including myself, have trouble with is what to call "normal" babies verses what you call babies with CHDs (Congenital Heart Defects).  The term "Heart Healthy" is what is used throughout the CHD community to differentiate between the two.  For example: Avery is my heart healthy daughter. OR Avery is Hallie's heart healthy sibling.

1. What is the name of the defect Hallie has?  She has Hypoplastic Left Heart Syndrome... HLHS for short. I usually call it HLHS.  When referring to defects in the CHD community I would say "my HLHSer".  Such as "Avery is my heart healthy daughter and Hallie is my HLHSer."
2. Will she weigh the same as a heart healthy baby?  At first most likely she will, unless she stops growing in utero at some point, which they do not expect but... Another wait and see.
3. Will she grow the same as a heart healthy baby?  Maybe, maybe not... it depends on her and how she feeds and how her body processes her feeding.  She will get nutrients no matter what, even if it is through a feeding tube but its not like with a heart healthy baby...you feed them until they're satisfied, some eat more than others, g-tube babies have a little more of a standard amount they eat and when you introduce bottles they burn a lot of calories b/c it takes a lot of work for them to suck, they are not use to it b/c it is not something they do immediately after birth.  So, again, we just wait and see...
4. Will she reach the same milestones as heart healthy babies?  Most CHD babies are behind on their typical milestones.  Eating of course is a big one, fine motor skills, sitting up, crawling, walking... all will be most likely be delayed.  A lot of that too has to do with the 2nd surgery happening right in the middle of their first year...if you had open heart surgery it would be difficult for you to get around too!  They do catch up eventually, maybe at a year, maybe at two... Every baby is different!
5. When will Hallie go home from the hospital?  Wait and see.  Hopefully a quick 4-5 weeks and we're outta there... some babies stay until it is time for their Glenn (2nd surgery)..some split the difference.  There are just so many factors involved.
6. What can she wear in the hospital?  At first, she will just be swaddled in her diaper.  Then we can put things on her that do not go over the head, do not cover the feet, and can button down completely... she will have a lot of wires and lines that do not come out...it needs to be as easy as possible to get the outfits on and off to change diapers, change/check dressings and monitor her in general.  Also she will have a pulse ox machine on her foot, so that is why no footed things.  She can wear baby legs, ruffle butts, side snap onesies and gowns, convertible gowns, hats and bows.
7. Will Avery be allowed to see her?  Not in the NICU.  They only allow children 3 and up...and that is where we will be a majority of the time.  The CVICU is where Hallie will be right after her surgery and they will allow Avery in there to see her.  We will be in there at least 3-4 days.

I am so thankful we have God in our lives.  Where would be without him... I shutter to think.
My prayer is simple: 


Thank you God for being in our lives and helping us through this situation.  No one else can do it but you. We have a long road ahead of us.  We do not know what is in store for our family but we have faith and hope in you and that you will take care of us each step of the way.

When you pass through the waters, I shall be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you.

Isaiah 43:2

Joy Amidst Suffering...

We have entered the 3^rd trimester! We hit 28 weeks on Monday.  Just had both baby and mommy doctor appointments this week.  At the fetal specialist, doctor said Hallie is looking perfect, she is in the 55 percentile for growth, weighing in at 2lbs 11oz and measuring 28-29 weeks, which is right on…and is VERY active.  We saw her open her eyes, yawn, and move her hands in front of her face to tell us to leave her alone :)… We also saw some hair poking off the back of her head…never saw that on any of Avery’s sonos so maybe that means this child is going to have a lot of hair, I can’t wait to see what color it will be!  We go back in a month (32 weeks) and then will start seeing him every week until delivery.  My doctor, Dr. Robbins, says everything looks great with me and she is very pleased.  I will be seeing her every other week now.  We have had a series of great weeks, praise God!

I believe we truly are experiencing the meaning of what joy amidst suffering is like…Such an extremely difficult concept for people to grasp.  Easier said than done, believe me I know, but when you immerse yourself in God’s word things just seem to fall into place.  Many have commented on how “strong” we are.  I sincerely thank you for those words, it feels good to hear that, I take it as a huge compliment…BUT I cannot take credit for that strength.  It is not me or Donny or anyone other than the Holy Spirit working in us, giving us that strength.  I know that for a fact.  It began to manifest in one prayer filled, emotional roller coaster of a day, the day we found out about Hallie's heart, and we have not been the same since…

I attend a bible study through Christ Chapel called Women in the Word.  Last week we talked about suffering.  I feel that maybe the Lord’s whole reason behind moving me to sign up for this bible study was for this particular lesson.  It was over Psalm 77.  It spoke to me very strongly.  A couple of passages brought to light were James 1:2-4 and Romans 5:1-5.  I know the Lord is working in our lives because prior to this experience I did NOT get the idea that anyone could have joy when they are suffering…at. all.  How in the world can you be happy when you are hurting? Followed closely by all the “Why” questions you can think of…like, “Why is this happening to us? Why does my baby have to go through this? Why would God punish us like this?  Why won’t He just take this away?”  I began to search for the answers to these questions because, for me, the cliché answers just weren’t cutting it this time.  I didn’t have to search very long because God answered almost as soon as I asked.

I have always believed in God and understood how powerful prayer is, I do believe the bible is an accurate account of God’s word, I do believe what my Pastor says, and trust what my parents and grandparents have always told me…but there comes a time when we question things and sometimes you need to research these questions for yourself, the wealth of knowledge you gain when doing so is priceless…I learned so much more than I expected!

 

My sermon notes from Women in the Word sum it up perfectly...

Suffering 101:

• God doesn't usually take us out of our suffering, as much as He takes us through our suffering. 
• Our troubles and our trials spiritually mature and complete us. 
• God's hope is that we follow His lead when we find ourselves on a troubled path.

 

In working through the bible study I was grabbed by the following verses.  These were taken from the Life Application Study Bible NIV:

 James 1:2-4

Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything. 

The bible explains…“We can’t really know the depth of our character until we see how we react under pressure.  It is easy to be kind to others when everything is going well, but can we still be kind when we are treated unfairly?  God wants to make us mature and complete, not to keep us from all pain.  Instead of complaining about our struggles, we should see them as opportunities for growth.  Thank God for promising to be with you in rough times.  Ask him to help you solve your problems or to give you the strength to endure them.  Then be patient. God will not leave you alone with your problems; he will stay close and help you grow.”

 

Romans 5:1-5

Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand.  And we rejoice in the hope of the glory of God.  Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.  And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.


The bible explains… “In these verses we are introduced to some difficult concepts.  It helps to keep in mind the two-sided reality of the Christian life.  On the one hand, we are complete in Christ (our acceptance with him is secure). On the other hand, we are growing in Christ (we are becoming more and more like him).  We feel both the presence of Christ and the pressure of sin.  We enjoy the peace that comes from being made right with God, but we still face daily problems that often help us grow.  If we remember these two sides of the Christian life, we will not grow discouraged as we face temptations and problems.  Instead, we will learn to depend on the power available to us from Christ, who lives in us by the Holy Spirit.”

  

In searching for the answers we are filling our minds and our hearts with His word and gaining a greater understanding of how he works and building a deeper more meaningful relationship with Him.  Our joy is celebrated through small victories.  We rejoice in the little things.  We appreciate every day moments.  We have slowed down and taken more time to see our life for what it is.  Isn’t this what the Lord wants for us anyway?  Yes.  Isn’t this how we should be living?  Yes.  Why haven’t we done this in the past…well, I could probably go into a whole book about this but the important thing is that we are here now and are very thankful that we are.  He has worked through us, through our suffering, to achieve these things for us… to make us see, to make us trust in him.  Suffering is part of humanity…everyone will suffer (Christians and non-Christians alike)…at different times in our lives…in different ways…ours is beginning now…the blessing in this, is that we get to experience a deeper relationship with Him now rather than later…He will get us through...He will not leave us alone.  For many people, a deep spiritual journey begins when a hardship or crisis arises…I can admit that is what it took for us...which is completely normal…that too is human...the important thing is that we grow from it.  I accept that Hallie is the reasoning for ours and am blessed by it even though with it brings pain.  Joy amidst suffering…

 

Thank you Lord for being so faithful and compassionate and allowing us to witness your miraculous works.  We appreciate being able to reflect on your past workings in our lives and recognize the blessings you have given us.  This provides us with proof that you are there and alleviates any doubt we may have about the future.  May we find our strength in you, that we may persevere through this trial, and grow rich in your word.  In Jesus name we pray, Amen.

Awareness...

February is American Heart month.  This month the nation pushes recognition and awareness of all things HEART.  Today begins CHD Awareness week, February 7 -14.  CHD stands for Congenital Heart Defect.  This, of course, means more to us now than it ever has in the past.  Awareness is important people!  I, for one, never really thought about CHD’s prior to this, never really heard much about it.  Sure we hear about “heart disease” in adults and “birth defects” in children but rarely do I hear anything about “heart defects” in children… which is one reason why it was so shocking to us that our child has one.  Surprisingly, CHD’s are THE #1 birth defect in children and occur in almost 1% of all births, which are approximately 40,000 births a year.  CHDs are also the most common cause of death in infant births due to birth defects…primarily because of unawareness. Doctors do not routinely check for heart defects, only if they are clearly present on a sonogram, like the heart is on the wrong side of the body (which happens more than we think)…or if you have an existing condition that requires a detailed sonogram (such as in our case with MTHFR), are these defects caught...though many are hard to detect even on a sono.  Many of these babies look and act perfectly normal in utero.  My Hallie sure does…she measures perfect, has a normal heart rate and she moves and kicks A LOT!  I would not know any different.  Makes me thankful I have a weird blood disorder that requires a more detailed sono J.  It is our responsibility to put checks in place, to push for those checks to be mandatory, just ask your doctors to take a closer look.  You can also check by requesting your doctor do a 45 second "pulse ox" before leaving the hospital with your newborn.  It is a small device that goes on the babies foot, nothing invasive, very simple to do, simply checks their oxygen levels.  The statistics really are staggering… CHDs are as common as autism and 25 times as common as cystic fibrosis, both of which I know all of us have heard of…so why are we not as aware of congenital heart defects?  We need to push awareness, so that more funding is available, so that we can have more checks in place, so that we can save more tiny lives in the future.


All of my statistical data was pulled from this fact sheet put out by Mended Little Hearts, some of these facts and statistics are shocking to me.  Please take a look when you have a chance:
http://mendedlittlehearts.org/Docs/Facts%20&%20Statistics%20About%20CHD.pdf



1981 was the year of the first successful Norwood procedure (1^st of 3 surgeries) performed on a newborn baby.  Just 33 years ago.  I am 34.  In my short lifetime an entire world was created just for these heart babies and their families.  How amazing is that?! The support and resources available for coping with this diagnosis are astounding.  We are very blessed to be a part of such a strong and positive support system… from the doctors and nurses, to the support groups, to our family and friends. Thank you all.

"Above all else, guard your heart, for everything you do flows from it."  Proverbs 4:23

"A heart at peace gives life to the body..." Proverbs 14:30

"When a man is gloomy, everything seems to go wrong; when he is cheerful and full of hope, everything seems right."  Proverbs 15:15

"A cheerful heart is good medicine." Proverbs 17:22

“Be Still and know that I am God.” Psalm 46:10

Thank GOD ALMIGHTY for modern medicine.  Thank you for those special people who make it their life's work to find ways to help tiny babies thrive and live outside their mother's womb when not so long ago they would not have stood a chance. Thank you for the families who commit time and energy to support each other and this cause.  Thank you for providing us with the hope, peace, and strength to deal with this situation on a daily basis.  I ask that you continue to bless us with these things as we continue to be still and listen to what you have to say and watch how your miraculous works affect our lives.  We could not do it without you. Amen.

All is well in the world...

Yesterday we met with Dr. Tabor, the specialist,  for a repeat sonogram.  It has been almost a month since we saw him last.  It was a good, uncomplicated, easy going appointment.  No drama, no bad news.  Hallelujah! I am now 24 weeks pregnant (6 months).  Hallie is growing at the perfect rate. She is measuring 23weeks and 6days which is pretty spot on.  Those measurements will fluctuate, they typically expect the baby to measure within a week on either side of the due date (May 12, 2014).  She is weighing in at 1.6 lbs which is exactly where she should be.  All bones and structures are growing at the appropriate rate.  All is well in her world, thus is well in ours!


We will continue to see Dr. Tabor once a month to measure Hallie's growth. At least we get to see her on the sono once a month! That's always nice.  I will still have my regular monthly OB appointments with Dr. Robbins, in fact I go tomorrow for that.  Dr. Robbins will be the one to do the delivery.  Dr. Tabor's staff will be present at the delivery and in Intensive Care with Hallie throughout her stay. 


So, next on the agenda... we will have our regular monthly appointments with Dr. Tabor & Dr. Robbins in February.  Then in March we meet Dr. Tam, the Cardiothoracic Surgeon, and have a follow up Echocardiogram with the Pediatric Cardiologist, Dr. Roten, to make sure there are not any concerning changes with Hallie's heart.  I feel April will prove to be a very busy month, filled with doctor appointments... as we get closer to the due date, we will  monitor her growth progress more closely.


In the mean time, we will be nesting, resting and being as still as possible, listening intently as God works in our lives.  Appreciating our daily blessings, those things we have in our lives already. 

"Delight yourself in the LORD and he will give you the desires of your heart. 5 Commit your way to the LORD; trust in him and he will do this: 6 He will make your righteousness shine like the dawn, the justice of your cause like the noonday sun. 7 Be still before the LORD and wait patiently for him..." 

Psalm 37:4-7

      

"For I know the plans I have for you, declares the LORD, plans for welfare and not for evil, to give you a future and a hope." Jeremiah 29:11

Thank you God for the many angels you surround us with on a daily basis, in our everyday lives.  Sometimes we do not see their impact on our lives until we are in a time of need.  When we do finally see the ways in which we are intertwined with each other, we realize that you have been there all along, paving our road, filling our path with these angels, so that our journey then becomes a little easier and your works become greater than we ever knew possible.  Amen.


It helps to know that so many of you have us in your thoughts and prayers.  Thank you for being Hallie's prayer warriors and loving our family.

Reality setting in...

I will preface this post with this... we just had "big" doctor appointment number 2...  After "big" doctor appointments, I have found it takes a good 3-4 days for things to truly set in...It starts out overwhelming, a couple days of spontaneous tears, some questioning, a lot of thinking through different scenarios, a lot of "we're fines", a whole lot of praying and searching out Gods word for healing and comfort, and then finally acceptance...

January 14, 2014... Heavy day.  We had our fetal echocardiogram and met the Pediatric Cardiologist, Dr. Roten.  I have been really excited and anxious about this appointment because it will shed more light on the situation… and that it did…a lot of light…maybe too much light.  So much light that I still feel blind and it’s been 3 days.  She didn’t give us any “new” news really, just a whole lot of info and what to expect and so on.  Hallie’s heart looked as expected.  They got great pictures from the echo, which looks like a normal sono but with red and blue flashing lights where the heart is.  The lights show the blood flow.  Hallie’s Aorta is very tiny as well which is true of most hypoplastic hearts… She says the aorta and the left ventricle stopped growing about 6 weeks gestation.  Most babies hearts are fully formed by 6 weeks but continue to grow larger as the baby grows…. With a hypoplastic heart, those parts do not continue growing, basically.  There is also a valve that comes into play, which opens and closes to allow for blood flow that can be too small or normal…Hallie’s is big right now, which is good, we will continue to monitor that until birth.

We were there for 3 hours, 2 of it just talking to the doctor…and she talked all but about 10 minutes of that time, collectively.  I have never been given that much info to digest in one sitting. Don’t get me wrong, I appreciate it! I would rather hear it all from a valid source than fish for it off the internet.  It just took me back a bit.  It just made things more “real”.  It’s been a little harder to stay as strong as we have been just because there are more “what ifs” to think about.  She painted a picture of what labor, the hospital stay, and the first 4 months will be like… and touched on the future.  It’s just overwhelming.  Our life is going to change.  I am ok with it changing but with any change comes fear of the unknown.  She offered for us to meet a family that has gone through it, which we have decided we will do…not sure when yet.  There are support groups and plenty of resources available, which I will take advantage of.  Here are a few of the highlights…

Labor: I can go into labor on my own, as previously told, they try to plan a little bit so if it looks like I’m getting close they may induce, it just depends.  She said no matter how hard they try to plan tho, if that baby wants to come at 2am on a Sunday night when there is a skeleton crew there, that’s what will be.  After birth, we will get to hold her for just a little bit - not a "hard hold" she called it - and then she will be taken to Cook Children’s just across the street.  We can see her whenever we want and as long as there were no labor complications I can move over there and room in with the baby.   She will go to the NICU, then the PICU/CVICU (Cardiovascular ICU), then back to the NICU…all dependent upon what step in the process we are in.  I am allowed to stay the night up there the whole time if I want; there is a couch/bed.  We won’t be able to hold her a whole lot because she will have a lot of tubes and lines connected to her and we do not want those to come out.  Nursing will not happen, I will begin pumping immediately.  She can’t eat prior to surgery; she will have IV fluids from birth. 

Surgery:   The first surgery, the Norwood procedure, will take place 48-72 hours after birth.  They will give her a shot of medicine immediately after birth, to keep her artery/valve open until they are ready for surgery.  When Hallie leaves us for surgery she will be gone 8-10 hours… the actual surgery usually lasts 4-6 hours.   She told us all sorts of stuff about what the baby goes through behind those doors… I am doing my best to forget that information or at least suppress some of it. She told us because we asked and she will tell us whatever we want to know…sometimes ignorance is bliss but when it comes to my baby I want to know it all...even if it is a little harder to swallow.  When surgery is over, they will be able to tell us how well everything went, and “will have a pretty good idea” of any side effects that are to be expected…which does not mean that those things will or won’t happen, just a better idea of if it will happen… if that makes any sense.  Side effects include stroke, seizures, things of that nature... She will be swollen for a couple days, sedated, and her chest will remain open for 2 days but they will have a protective covering sewn over the opening until they go in and close it.  This is done because of the swelling and in case they need to go back in for any reason, etc.  This part hits me hard for some reason, the thought of her lying there with her little swollen face and body and her movements in slow motion from the sedation. REALLY tugs at my heart strings.  Worries me that she can feel any pain and can't express herself.  I tear up now as I think about it.  My mom says to remember we are saving her life. 

Post-Surgery:  They will lighten her sedation slightly periodically to make sure she is reacting to everything as she should, that her movements are normal (no seizures etc.).  They will close her chest up 2 days after surgery while she is in the PICU/CVICU.  She will have a feeding tube (g-button) her entire stay and most likely when she goes home.  She will have feeding problems because of this and will have to learn to suck and drink from a bottle slowly, i.e. if she is eating 3 oz we will do 2 oz through the g-button and 1 oz by bottle…nursing might be possible later on, something she will have to learn.  I will pump, God willing, I do not have any problems with production.  I was like a cow with Avery but since I will be under a lot of stress it may be a little more difficult.  I feel that part will work out fine but you never know. 

Going Home: Hallie will be in the hospital for at least 4-5 weeks (1month) if everything goes perfectly.  We will be sent home with an oxygen monitor and scale to weigh her and check her oxygen levels multiple times a day, as well as blood thinners twice a day.  She will also have regular checkups during that time.  The first 4 months are the most critical.  The 2^nd surgery will take place at 4 months of age, at least a month of that will be spent in the hospital…so that’s 3 months at home… GULP… I’m going to be SCARED!  Babies that make it thru those 4 months have a 95% survival rate  going thru the 2nd surgery (Glenn procedure)  and 3rd (Fontan procedure).  Going to be a LONG. FOUR. MONTHS.  We worry about our babies enough as it is... yikes.

Future: There are a lot of if’s, an’s, or but’s, BUT what we do know for sure is that she will see a cardiologist 1-2 times a year and will be on aspirin and blood thinners twice a day, her entire life. She will function as a normal child, just have to be a little more cautious than most and take care of her heart.  The heart is not built to operate at half capacity so it is very likely that, at some point, maybe when she’s 15, maybe when she’s 50, she will need a transplant… but who knows what the future holds and what options will be available at that time.  We will bank her cord blood (we did Avery's too).  The people at CBR, Cord Blood Registry, have already started research for HLHS patients and have a lot of promising finds.  This is an interesting article that Donny found: http://hlhsblog.mayoclinic.org/discussion/umbilical-cord-blood-banking-for-future-regenerative-therapies

The 3^rd surgery, the Fontan, basically reverses the blood flow so that it goes directly to the lungs.  This is something all medical professionals will need to know incase an emergency were to arise.  As an infant we will put stickers on her car seat, school age and up, especially when she starts driving, she will need to wear some type of medical ID tag… We’ll have to find her something cute and stylish :). 

SO, that’s it in a nut shell…for now. believe me I could have written 4 more pages on this and all the info Dr. Roten gave us for the present and the future and all the thoughts we are thinking and well…. It will all be here before we know it.

 

"The Lord bless you and keep you; the Lord make his face shine on you and be gracious to you: the Lord turn is face toward you and give you peace."  Numbers 6:24-26

Lord, thank you for the medical professionals we have on our side and the knowledge they possess. Please continue to bless us and keep us strong. Amen.

For a little more information and a really good diagram of the difference between a "normal" heart and a hypoplastic heart check this site out, you can just hold your mouse over the diagram and it will show you the difference...

http://www.pted.org/?id=hypoplasticleft1

Blessings...

Last night I caught myself researching on the internet. Bad. Bad. Bad!  The internet can be a blessing and a curse.  Lately every time I hop online I run into something I do not want to know.  I have done pretty well staying away from looking up HLHS related topics online because there are so many different attributes to this particular defect and until we have test results back we do not know which category we fall into.  The doctors suggested we don’t get online and start researching until results come back.  Seriously, this was an innocent web search, I was looking for a girl’s blog and ran into some other info.  I swear the devil likes to popup and misdirect you so that you start having negative thoughts and worrying about what could be, about things you cannot do anything about.  So, I immediately got off line,  I had me a good cry, and went to bed, repeating Philippians 4:6 until I fell asleep…

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.”

The next morning I got a text from a friend saying she had been thinking about me all day yesterday…I said yeah it was probably God telling you I was FREAKING out.  She said you will feel better when the Amnio results come in because you will know more… yes friend you are right… I think maybe I will just go ahead and call and see if by chance they are already in, I cannot wait 2 weeks until my appointment…

So, I called…and guess what? The results had come in over the weekend and they had already planned on calling us that afternoon! PRAISE GOD!

The genetic counselor I spoke with said they had not had a chance to officially put the results into the system yet but “unofficially” everything came back NORMAL! HALLELUJAH! Dr. Tabor requested a very thorough test called a Micro-Array test which checks for missing pieces of DNA and all pieces are there, which rules out several genetic disorders.  I previously had the Panorama test done, which I did at 12 weeks and only because I wanted to find out the gender early.  It also checks for a slew of other genetic disorders like the Trisomys and Down Syndrome etc. and that came back good as well.  So no major genetic defects going on, still just her heart to focus on… Huge sigh of relief, one less thing to worry about.

Thank you God for answered prayers. Amen.