Hospital Tour

So I'm a little behind on updating my post, guess it's time to play catch up.  Last Wednesday, we met with the PICU Child Life Specialist and took our tour of the hospital.  It was a little bit of an overwhelming experience, but we knew that it needed to be done in order to help prepare us for what is to come.  After delivery our daughter will be sent to NICU.  We very briefly got to see a NICU room, and I have to say that I'm not fond of the NICU.  Not the NICU itself, but the incubators that are in them.  I have to admit it made me nauseous being in the NICU room b/c the incubator to me resembles a coffin.  I'm really not looking forward to seeing out little girl in one of those.  It will be hard, but we will get through it.  The NICU rules are very strict compared to the PICU.  We are unsure if our older two kiddos will get to see their baby sister in the NICU or not.  When it is RSV and flu season, no kids under the age of 11 are allowed in the NICU.  You can take very few items into the NICU and there are only 2 people allowed at a time in the room.  It will be difficult for me to be away from my little girl the first night.  Since I'll be in recovery on a different floor in the hospital, Chris will be staying with our little girl in the NICU.  Hoping my recovery goes smoothly so that I can discharge a day early and be with my little girl.  I suppose Chris and I will then take turns sleeping in her room.  And the other will sleep in one of the Ronald McDonald rooms.  I don't want our little girl to be left alone during this critical time.  She will need us more than ever.  She will stay in NICU until her first surgery, which is tentatively scheduled for October 8th.

After her surgery, she will be transferred to the PICU.  That is where all the cardiac nurses are, so that is where our little peanut will be from then on.  Unfortunately, the PICU is the only unit involving kids that is still in the remodeling process.  We got to see the finished Peds side, which was beautiful.  Huge private rooms, large windows, bright colors, interactive things for kids.  The PICU room will look the same as the Peds rooms, only with more medical equipment of course.  The new PICU is set to open in November.  Until then, we will be on the old PICU floor which is pretty gloomy compared to the new unit.  Tiny room with only room for one parent to sleep in there if they wish, but they recommend sleeping in the Ronald McDonald rooms instead since the current PICU rooms are so tiny.  I however would rather sleep on an uncomfortable pull out chair in a tiny room than be away from my little girl.  I know I will need breaks, but I will get those breaks when someone else can be there with our little girl when Chris or I need a breather.  Don't know how long we'll be in the hospital before our little girl is well enough to come home.  Could be as early as 2-3 weeks after surgery, but more than likely it will be 2-3 months after surgery.  If that is the case, then our little peanut will be one of the first patients in the newly remodeled PICU.  As we hope for the best and long to be able to take our baby home sooner rather than later, we also must prepare ourselves for the possibility that she may not be able to come home between her first two surgeries.  As the saying goes "hope for the best, but prepare for the worst".

As much as our little girl moves around in my belly, I just know that she is going to come out strong and be a fighter. 

No Change..... at least I hope not

I had an appt today for my 37 week check up (almost 37 weeks, will be on Wednesday) and also a non-stress test.  Non-stress test went well and they finally got little peanut's heart to do what they needed it to do so they could unhook me. 
My cervix hadn't changed any since when they checked me in the hospital. So that is good news.  Still on my modified bed rest and just have to take it easy and drink lots of water.  Hoping and praying that our little peanut and my body agree that she needs to stay in there a little longer to get bigger and stronger. 

......as I'm writing this blog and laying on my side on the couch I'm noticing that I'm having more contractions than normal.  I've only had a few all day, but just in the last hour on the couch I've had more than all day.  Really hoping they stop on their own.  Prayers that they stop and our baby gets more time to grow. 

Quite the scare today

So our little girl gave us quite the scare today.  We had spent the weekend camping with friends and family for Chris's mom's wedding.  We finally went back to our camper just a little after midnight.  I had been nauseous since about 9 or 10pm, and when I finally got laid down, I just tossed and turned.  I started having contractions at about 1am but they weren't consistently spaced, so I didn't worry to much about it.  At around 1:30 or 2am, our daughter woke up sick to her stomach.  Tried to frantically get out of bed, not an easy feat for a 36 week pregnant woman.  Didn't want to have to clean up vomit in a camper, especially when I already wasn't feeling well.  Needless to say, after checking her temp (no temp), I chose to fill the bathtub with blankets and her pillow and let her sleep in the bathtub by our room.  Yep, totally put our 6 year old back to sleep in a bathtub.  All I was thinking of was not wanting to clean up vomit from carpet and bedding if she did end up getting sick.  After that I fell asleep only to be woke up by contractions at 4am.  The contractions were 3 minutes apart consistently for 30 minutes, so I called my OB.  Didn't want to take any chances with our little heart baby coming early.  So had to call my mother in law to come over from her camper to ours to watch our two kiddos while we went to the hospital.  I had to drive myself, and my husband gave me directions from the passengers seat.  Let's just say that it was his mom's wedding reception and we had been sitting around a campfire, and with just going to bed 3 hours before, he was in no shape to drive.  Poor guy!  Contractions stayed consistent the entire drive to the hospital.  Got checked in around 5:15am and got all hooked up to the monitor.  I was really nauseous and the contractions continued.  For about an hour or two they started to get pretty intense.  I was getting really nervous at that point b/c she is already measuring small so we really don't want her to be early.  The Norwood is one of the most complex and difficult heart operations there are and the bigger the baby is the better.  Right now our little peanut is probably just over 5 lbs.  She needs to stay in until our scheduled induction in 2 1/2 weeks.  After being checked by the nurses at the hospital, they thought I was still just at 1 cm, so that was good.  By the time my OB got there and I'd had those more intense contractions, I was almost at 2 cm and my cervix had softened.  By this time my contractions had become less intense, almost to the point that I couldn't feel them, but they were even closer together.  After discussing it with my OB, we decided to try a shot of medicine in my arm to hopefully stop the contractions.  If it didn't work, there would be nothing they could really do and we would just have to let nature take it's course at this point.  Luckily the medicine seemed to work.  It made my heart thump and my body feel jittery, but it didn't effect our little peanut's heart rate and the contractions just became what the nurse called "irritability"  By around2:30pm the nurse updated my OB and it was determined that I could go HOME!  The contractions weren't intense enough any longer to cause cervix change, so hopefully it stays that way.  I was told to drink lots of water and be a couch potato.  So essentially, I'm on bed rest.  Since being home tonight I've had a few contractions, but nothing consistent.  I've been trying to stay off my feet as much as possible b/c when I stand for to long or walk to much, I get nauseous and my stomach starts to feel like it's going to contract again.  My husband took this scare very seriously and has stepped up to the plate.  Although he does ALOT for our family; housework, supper and bathing kids is not something he's used to.  But all evening he has told me that I need to lay down and doesn't want me to do much at all.  It's kind of weird sitting back and lounging on the couch while my husband cleans the kitchen, does the dishes, picks up the house and gets the kids ready for bed.  At least in my house it is weird.  But I have to say, even though I may not be able to find everything that he puts away, at least it is getting done.  He has been wonderful through this all.  Now all we can do is wait and see if baby girl will try and give us a scare again before her Oct. 4th "planned" arrival.  Hoping she stays in as long as possible.  Tomorrow I go back to my doctor for my 37 week check up and a non-stress test.  My cervix will be checked again at that time.  Then on Wednesday we will have our tour of the Labor and Delivery unit at our hospital and the NICU and PICU where are little girl will be staying.  Until then, hoping for no more scares from our little girl and this momma is going to be a "couch potato", per doctors orders.  Positive thoughts and prayers are always appreciated as we continue on this journey. 

Amazing friends and support

I know I will never be able to thank them enough or truly let them know just how much they mean to me.  I have some amazing friends and family; and a great support system.  Even on days like today, when life gets me down, I know that I always have things to be thankful for.

Even though it is hard to ask for help, it is always a great feeling when a friend calls and asks to take you out to lunch or dinner.  Or meets up with you just to catch up.  I've had friends offer to watch our older kiddos when we are in the hospital with their new baby sister. And of course today, a great friend of mine from childhood set up a fundraiser for me online and linked it to my blog and her Facebook account.

Last night I left the kids with the hubby and went to my first heart family support group.  What a warm welcome I received.  It's not a group that you "want" to become a part of, but it is so nice to know it is there for families like mine and many others that we unexpectedly placed in the heart world. 

It is just over 3 weeks until we meet our baby girl and I know that once that happens things will become quite crazy.  So I just wanted to make sure that everyone knows how very grateful we are for their continued prayers and support. 

Still holding strong

Just two days shy of being 36 weeks along.  Today we had an non-stress test before my regular OB appt.  It's also our son's 4th birthday today.  He was such a trooper today sitting through my non-stress test.  I sat there hooked up to monitors for a good 1/2 hour and he didn't complain once. 

All looked well with baby girl.  She was moving around like crazy during the non-stress test.  I still haven't gained much weight, which is all new to me.  With both our other two kiddos, I gained 28-30 lbs, and that was after I gained back any weight lost in the beginning.  With this pregnancy, after gaining back the weight I lost in the beginning, I have only gained 5 lbs over my starting weight.  That is how much the baby weighs right now.  I just don't get it.  I guess as long as she continues to grow and stay as healthy as possible, that is all that matters to me. 

We go back again next Monday for another non-stress test and my almost 37 week appt.  Not much time left til the big day. Have to say, although I'm so excited to meet this little girl who seems to love doing flip flops inside me, I'm so very scared for her. 

All positive thoughts and prayers are welcome.  She needs each and every one of them that she can get. 

Update on baby girl

I had my 35 week appointment yesterday, as well as an ultrasound to check on baby girl.  I can't believe I'm already at 35 weeks! 
Her estimated weight was 4 lbs 15 oz, which is a bit small but nothing to be concerned about as of now.  I also have a little bit more amniotic fluid than the normal, but again nothing to cause concern as of now.  Our little lady was doing her practice breathing and they checked for markers of other abnormalities and defects as well to help ease my mind.  Everything looks great and all other organs (besides her heart) appear to be healthy and working as they should.  Our next appt. will be on the 10th, our son's 4th birthday!  We will do a non-stress test at that time as well. 

Some things are hard to swallow....

....but we pick ourselves up by our boot straps and continue on.  This post is about what I've learned so far about becoming a mom / family to a baby with Hypoplastic Left Heart Syndrome (HLHS).  Some are things that I've experienced already, but most are information from other heart families that I've come to realize will most likely become our reality as well very soon.  Now I know every baby is different, but these are some of the things that many families have experienced with their severe CHD (Congenital Heart Defect) child.  The list makes me nauseous just thinking about it, but it also brings to light just how serious of an illness our little girl is facing.  I am a planner and I know that once our little one is born my planning instinct may have to be thrown out the window.  So for now, I will plan and I will create this list no matter how hard it may be.  This will remind me when times get tough that although these are hard, they are "common" for heart babies.  I will remember that so many other babies and families have went through the same thing and are now able to share their story with new heart families b/c their little ones have already gotten over some of that tough stuff.
So here they are in no particular order:

* First and foremost - there is no fix or cure for HLHS.  Our daughter will never have a fully functioning heart.  Her treatment of the 3 stage surgeries will make her half a heart do all the work that a whole heart should be doing.  Chances are, she will have to have a heart transplant in her late teens or 20's, but nobody knows for sure.  Earlier if her heart ends up not being a good candidate for surgery.  A transplant is still not a fix or cure.  A transplant has their own set of problems; such as a lifetime on anti-rejection drugs and the research that shows that transplanted hearts usually last only 15-20 years.
* She will have to see a cardiologist her entire life and will have many more procedures done to keep her healthy besides her 3 open heart surgeries.
* Normal - throw that term out the window.  Our version of normal will soon take on a whole new meaning.
* Your marriage will be tested.
* Your relationships with family and friends will be tested.
* Your world will become a roller coaster ride with lots of ups and downs and twists and turns along the way.  All you can do is hold on and be the best advocate you can be for you baby and the rest of your family.
* The Norwood procedure is the most risky of the 3 surgeries our baby girl is required to have in order to survive.   She will have to have this surgery within 4-10 days of birth to live.  Her NICU stay will most likely be AT LEAST 2-3 weeks if there are no major complications.  Sometimes they are unable to leave the NICU between surgery 1 and 2.  We hope and pray that we are able to bring our little girl home in between her first two surgeries.
* Interstage (the period between surgery 1 and 2) is a very critical time.  We will be home bound during this time and basically quarantined from the "outside" world.  Besides doctors appts, our baby girl will not go out of the house.  We will also have to limit visitors during this time.  Most likely no children (except our own of course) and no one that has been sick or around anyone that has been sick for at least 48 hours.  Interstage for us will be during the holidays, so it will be hard.  I hope that family and friends understand that we have to be very cautious during this time with our little girl.  A simple cold to an average/healthy child could be a hospital stay / ER visit for a child with HLHS.  Her immune system will be very compromised during this time and she has to stay healthy in order to have her second surgery.  And in order to survive, she has to have the second surgery.....so you understand why limiting exposure to germs and keeping her healthy is very critical. Will I miss spending time with family over the holidays....ABSOLUTELY.  But if one or two holiday seasons away from family means the possibility that our daughter will have the chance at a lifetime of holidays, then it is so worth it!
* Hemi-Fontan / Glenn - The second of her series of 3 open heart surgeries.  Generally this surgery goes smoother than the Norwood and the recovery time is less.  The goal is for baby girl to stay healthy enough so that she can hold out and wait to have this surgery until she is 4-6 months of age.
* Fontan - the final of the 3 stage surgery.  This is what finishes up the re-routing per se of her heart.  Don't know much about this one other than that every mom and dad wants to be able to say that their baby is "post Fontan".  Because that means that our baby's half a heart was strong enough to endure more than most people go through their entire life.  
* Try to focus on the small milestones instead of the big picture.  So instead of "when are we going home after surgery", instead focus on each step at a time (getting chest closed, off ventilator, feeding, adjusting meds, etc).  Each one down gets you that much closer to going home.
* Trust your gut and mommy instinct.  Don't be afraid to voice your opinion about your child's care.
* Chris and I will both have to learn how to care for our daughter's medical needs before she can discharge.  Anything from meds, feeding tubes, pulse ox monitors to oxygen.  Whatever she needs, we both have to know what to do with it.
* You will feel like you need to buy stock in hand sanitizer, soap and lysol wipes b/c you will use so much of it.
* Chris and our daughter will both have to change clothes and wash up when coming home from school and work so they don't bring something into the house unknowingly, mainly a concern during interstage b/c it will be flu and rsv season during that time.
* Most HLHS babies have GI issues and struggle to gain weight.
* Most HLHS babies will have delays and need physical therapy as well as speech, occupational and feeding therapy.  Because she will spend so much time in the hospital and on her back after surgeries, she will have a lot of catching up to do.  Being intubated during surgeries and after can cause trauma to the vocal cords and also aversions of having anything in their mouth, even a bottle. 
* Breastfeeding may be nearly impossible.  Most HLHS babies are unable to breastfeed (at least for the first couple months).  Lots of babies are on feeding tubes and have to fortify to get higher calorie nutrition since they struggle with gaining weight and of course they want them a certain weight before each surgery.  Nursing is more taxing on their hearts than using a bottle and wears them out quickly, burning more calories than the doctors want.  I so want to be able to nurse our daughter just like I did our other two kiddos, but I know I must do what is best for our little girl.  Chances are I will be pumping around the clock to keep up a good supply of milk.  When she is stronger I will try to nurse again, but if I have to pump and feed through bottles or tubes, then that is what I'll do so that she can get her liquid gold.
* You don't get the privilege of just letting your child sleep through the night or sleep whenever they want to.  They can't miss a feeding.  Calories are so important to these babies that the hospital and eventually the parents count every single mL that they take in.  Each mL is so important.  So there won't be much sleep for this mom with pumping around the clock and making sure that our little girl also gets all her feeds.
* One of the hardest things for me is that I don't know if I'll get to even hold our baby girl right after she is born.  We may not get to hold her until after she recovers from her first surgery, other than just a few minutes before her surgery.  My heart aches just thinking about not being able to just sit and hold our little girl like we did with our other two.  Oh the little things that we take for granted.  
* This will be so hard on our older kiddos. Six and almost four.  My six year old is a worrier just like her momma and wears her emotions on her sleeve.  She is already struggling a bit with all the changes, so it is one step at a time with her.  We will try our best to make sure their routine stays as normal as possible during the time their baby sister is in the hospital.  We are lucky to have a great support system of family and friends in place already that have stepped up in whatever ways they can.
* Financial worries - Because an HLHS baby's health is so critical that first year, many parents have to quit work to care for their baby.  Luckily we were a two income household and I have an amazing husband that has a great job.  I was an in home daycare provider and at the recommendation of my OB and others, have since quit doing daycare in order to care for our daughter when she arrives.  That would have been way to much exposure to germs, not to mention time away due to NICU stay and the many doctors appts the first year.  You don't realize how much that small second income makes a difference until you no longer have it.  We have had to make some changes, and I'm sure we'll have to make more as unexpected expenses arise. But we will make it through it and do the best we can for our family.
* Most importantly we must remember to try and cherish every single moment we have with our little girl and to celebrate every milestone.  There are no guarantees how long we get to spend with our children or other family members.  It's situations like these that remind you that each day is a gift, so don't waste it.

I know I've forgotten about a million things, but this will be a reminder to myself and an information piece for others to let them know what is up ahead for us.  To end this post I will put up a couple facts that I learned only after receiving our little girls diagnosis:

1) Congenital Heart Defects (CHD) are America's and every other country's #1 birth defect.  Nearly 1 of every 100 babies is born with a CHD.
2) CHD's are the leading cause of all infant deaths in the United States.

http://www.childrensheartfoundation.org/about-chf/fact-sheets

It is amazing to me that even though both myself and my husband have family members that have some kind of heart condition, neither one of us knew any of the facts about CHDs.  The surgeries for HLHS have only been around for 20 years.  Before that, survival rates were very small.  Hopefully our blog will help in some way raise awareness about the seriousness of CHD's and their lack of funding.

Changes

It's been awhile since I've been on here to post.  Lots of changes going on, but not with baby girl.  We just recently got our oldest daughter started with 1st grade and are helping her get adjusted.  New teacher, new bus route, new friends, new house.....  Yep, new house!  With just 4 weeks left til our scheduled induction, we are slowly settling into our new forever home.  It feels so nice to have something of our own.  A little more security for sister and brother before our newest addition arrives.  Now to get all the stuff unpacked and sorted before the big day.