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.

In the Beginning...

This Christmas was extra challenging and very eye opening for us as we found out some disturbing news about the baby just a day before our festivities were to begin.   Our sweet Hallie Grace has a severe heart defect called, Hypoplastic Left Heart Syndrome (HLHS).

The cause of something like this is generally unknown. It starts at the cellular/structural level, before her heart even started beating.  Basically, the cells just didn't form together correctly.  Of course, that was one of the first questions I asked, freaked out I could have done something to cause this...but I was assured there was absolutely nothing I could have done to cause or avoid this.  It is not because of my MTHFR (folic acid deficiency/blood clotting disorder) or anything like that and it is not typically genetic though it does coincide with some genetic disorders.  About 1000 babies a year are born with it.  My doctor actually described it as “astronomical” chances.  I am the 3^rd patient in 28 years that she has seen with a baby that has it.

I went to my 20 week OB appointment on Dec 23^rd all excited to finally see her little profile and get visual proof that she was in fact, a girl, even though I had no doubt, I still enjoy the confirmation, no surprises...  This was a full work up sono, meaning they use a  more detailed sono machine to check everything out, organs and all,  especially spine and bone structure because of my existing condition (MTHFR)… they want to make sure everything is forming and growing as it should, MTHFR is often associated with neural tube defects. The sono tech says everything looks great, except …“Well guys I am sorry to tell you this, but this baby has a severe heart defect.” Wait. WHAT??? I just laid there stunned.  Donny literally thought he was about to tell us a joke.  We asked some questions just to make sure we heard him right, the tears started. Then he said he was going to talk to the doctor and get us a room ready so we wouldn’t have to sit in the waiting room to wait on the doctor…and to take as much time as we needed.  Pretty sure the entire waiting room could hear me wailing after he left.

My doctor (Dr. Cynthia Robbins) answered as many questions as she could but referred us to a specialist at Harris Downtown.  We had to wait until the 26^th , because of the holidays, to see the specialist so that he could confirm for sure that she had HLHS and to ensure there were no other issues going on with the organs etc. that would be a cause for concern.  IF anything else was wrong with her in that way then we might have to consider terminating the pregnancy. Tears. You have GOT to be kidding me?!? Do you know what they do at 20 weeks when you have to terminate your pregnancy?? They make you go into labor. Terrible. Horrible. I cannot and do not want to imagine what that would be like.  The thought literally made me sick.  Tears. The doctor then tried to ease our minds with the “BEST case scenario” which would be that I carry her to term, have a normal labor, and then she immediately go into surgery. Tears. Open heart surgery, on a newborn baby, my newborn baby. Lots and lots of tears.  This was easily the longest day of my life.  If time was ever to stand still I am pretty sure it would feel a lot like that day.  By the time we went to bed, I had accepted that my baby would have to have surgery but that she would be ok.  For the next 2 days I think I went into denial and prayed, prayed, prayed that everything was perfect with this baby girl except for her tiny heart.   Being surrounded by family and celebrating Christmas was the best way to take our minds off of everything.   I was honestly at peace with it, I knew God would take control, and he did.

The specialist, Dr. Tabor who is the Medical Director of Obstetrix Medical Group, said everything looked normal except of course her heart which was, as the previous sono showed, hypoplastic.  He zoomed way in so we could see.  Basically, we all have a 4 chamber heart; hypoplastic babies have a 3 chamber heart with a teeny tiny 4^th chamber.  That tiny chamber is responsible for pumping oxygen rich blood to the rest of the body.  When the lungs cannot receive that oxygen rich blood the baby cannot breathe well.  Within a few days after birth the little valve that allows this blood to flow will close and then the baby will stop breathing.  In order for this not to happen, the newborn will be given medicine to keep that valve open and the artery dilated until ready for surgery. Since the lungs are the last to develop, it will depend on how well the baby’s lungs are responding to the new world to determine when surgery will take place. They want the lungs to be as healthy as possible.   I will carry her to full term; they will wait until I go into labor.  He said a VBAC is still plenty possible, it is not more traumatic than a C-section or anything like that. It is actually good for the baby to go through the birth canal because it will “squeeze” all the excess amniotic fluid out of the lungs etc.  So, the next step was to do an amniocentesis… that was another tearful terrifying moment.  I have only just heard horror stories about  amnios but Dr. Tabor assured me I was in “expert hands”.    I was given the choice but he explained the best way for us to be fully prepared for surgery was to find out everything we can about her.  In the end  I decided that if a newborn baby can have open heart surgery, I think I can handle a needle in my belly, scary chances and all.   It really was not that bad…a tiny needle prick on the outside, then a mild cramp when the needle went through the uterine wall, lasted about a minute.  The hardest part about the whole ordeal was that I could not hold my Avery (almost 2 years old) for 3 days! Neither of us liked that much…daddy had to put her to sleep those 3 nights and she still wants him to now lol…and sing her “Twinkle Star”…bittersweet.

The surgery part is a bit unnerving… she will actually go through 3 surgeries within the first few years of life…the first at birth, the second at 4-6 months, and the third at 2-3 years.  They have only been doing these surgeries since the mid-80’s so the oldest survivors of this condition are in their 20’s and 30’s now. Some have had additional surgeries, pacemakers, heart transplants…all possibilities BUT many are perfectly fine and healthy, in sports, have had kids, living the life they want and are thriving. Technology has come a long way and will only get better. I am SO thankful we live in a time when “fixes” are possible and available! 

So, next we go see Dr. Roten, the Pediatric Cardiologist at Cook Children’s here in Fort Worth.  They will do a fetal echocardiogram which will paint a better picture of what Hallie’s heart looks like with all the little veins and arteries.  This happens on January 14.  Then on January 20 we will have a repeat sono with Dr. Tabor, the specialist.

We are extremely optimistic about everything. I just know it will all be ok. Like I said before, I really am at peace with it.  I am not going to lie tho…come May I know I will be a crazy nervous wreck but for now we are all ok. Focusing on appreciating my pregnancy and my belly and feeling her moving and knowing that it is all in God’s hands and it is completely out of my control.   He has already provided so many resources and positive influences into this situation it is unreal, which makes it that much easier to trust in HIM.  I am truly amazed.  I know he will amaze us even more in the months to come.

We decided on the name Hallie Grace a month or so, before we found all this out, I was even surprised by the meaning… He was speaking to our hearts even then…

The meaning of the name Hallie is: “Praise The Lord” short form of the word "Hallelujah"

The name Grace is derived from the Latin 'gratia', meaning God's favor.

I say it means, through the Power of God and by the Grace of God she will thrive and be our beautiful little angel sent to bless our lives greatly!