....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.
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