Liv's Story - Part 3 of 3

Although we were heartbroken by the fact that Texas Children’s Hospital could not do the surgeries and save Liv, we were at the same time relieved by the fact that Liv would not have to go through the open heart surgeries and months / years of life in the hospital and struggles. One of the blessings that came out of all of our research and struggle in choosing to do surgeries or not, is that we understand (as much as possible as people who have not actually gone through the struggles) what the surgeries would mean for Liv’s life. If she were to survive, her road would have been extremely difficult & painful (for Liv, us as her parents, and the many life changes for the twins). While we were fully committed to helping Liv through that road, no matter what came, we were also dreading having to put her through all of the surgeries and medical procedures only for her not to be able to survive any length of time outside of the hospital.

The trip back home to Zachary on Sunday morning was definitely one of mixed emotions. We were joyful to be able to bring Liv back home. We never thought that we would be able to do that if she were to pass away. We thought that she would almost certainly be in the hospital if that time came. We were also sad because of what the trip meant, and what we knew was to come. We were transported home by the Kangaroo Crew, who once again were the most loving and comforting people we could have asked for. When we arrived home, it was a little bit unreal to actually be there, as we had already come to terms just the week before that we wouldn’t be coming back for many months. The house was so still and peaceful and tidy (the twins had not made it home yet). After the Kangaroo Crew left, there was the 10 minutes of “what do we do now”?

(Loading Liv into the airplane for the ride home)

We had a nurse and social worker visit us from the Hospice of Baton Rouge and they helped to explain what would happen and make sure we were set up with everything we needed for Liv. Callie, our very kind and compassionate photographer who had taken our family / maternity pictures come to our house to take pictures of Liv and the boys that we will cherish forever – photos of her with no wires and no tubes. Her husband also came and made a wonderful video of Liv that is truly priceless.

The first night with Liv at home was amazing. It was such a simple time, really: our family of 5 all at home together, safe and warm in our beds. Something we would have certainly taken for granted outside of the circumstances we were currently facing with Liv. It was wonderful for us to be able to hold her without all the beeping and interruptions of the CVICU, without wires keeping her tethered within a foot or so of her CIVCU crib. We didn’t put her down at all except for a couple hours at night to get some rest, where she slept right between us.

One of the great things about being home was getting to see our church group, and them being able to see Liv; we will always be thankful for the time together on Monday afternoon. While we definitely wanted to have this time, we struggled for a long time before deciding that this was the right thing to do. With Liv not on her medications any longer, we were not sure exactly how long she was to have left with us. The doctors had told us anywhere from a couple hours to a couple days. Fortunately, Liv was doing well enough that afternoon for us to have our church group come over to meet her in person!

(Our church group visiting Liv)

 

Our church group has been so instrumental in helping us though this tough season of life. They have been there to pray with us, watch our house and children, and support us in ways that we never knew we needed. They left us notes of scripture and encouragement all over our home, stickers and a balloon for the boys, and made sure we had more than enough food to eat. Whitney watched the boys whenever we needed so we could give undivided attention to Liv and have them around Liv without things being too chaotic.

We were also able to have a quick, private baby dedication with our pastor that afternoon. Baby dedications are very unique and special events. This was an awesome time for us to pray over Liv and her story and for Beth and I to dedicate her life to our Lord, Jesus Christ. God has used Liv to greatly bless our family and others, and we will continue to share Liv’s story throughout our lives and allow God to use her to touch people’s lives and change them for His glory.

That night after our church group went home, we ate dinner, and Asher and Eli came home and were able to see Liv one last time and give her a kiss goodnight. For the next hour or so, we just held each other while holding Liv, all sitting on one cushion of the couch, as Liv’s physical life faded. We always imagined that the moment of Liv’s passing away would be extremely difficult, but the peace that we had in that moment showed us God’s hand and His compassion for our family. As Liv left us, it become more and more evident that she was no longer in her physical body. We had already had our good times with Liv over the previous 9 days: her opening her deep eyes, her sweet newborn movements, how she would nestle up comfortably and make a little double chin in the process, the time spent finger painting with Asher and Eli in the CVICU, her newborn pictures, all the visits from her loving family and friends. We felt no need to hold on to her physical life, knowing that she is leaving for a place in heaven, where she’ll have no pain or fear. All the days in the world would not have felt like enough with Liv. We are proud of the life that Liv lived, and honored that God chose to use her in such a powerful way in our lives and in the lives of people that we’ve never met.

(All the kids' handprints)

Our physical separation from Liv is difficult, and we’ll never cease to long to hold her and to see her again. Our grief is amplified when we see Asher and Eli saddened over missing Liv (which they have begun to express in the recent weeks – especially Asher). Our joy is in the fact that Liv’s life was and continues to be a beautiful display of God’s love for us and how He works through events in our lives to teach us things that we could never have asked for. We love Liv with all of our hearts and have been blessed by God through her life.

 

 

Liv's Story - Part 2 of 3

After the flurry of doctors and the good communication that we had received for the first couple days with Liv in the CVICU at Texas Children’s Hospital, things settled down on Wednesday and Thursday. Since we told the doctors on Wednesday that we wanted to proceed with the surgeries, we were expecting to have a more in depth discussion with them about the first surgery on Wednesday afternoon or Thursday. However, we went all day Wednesday and Thursday without hearing anything new and we were not able to meet with either doctors or surgeons (about the surgery; doctors were still available to discuss her current care). While we enjoyed the (relatively) slower pace for those two days, by Friday morning, we (along with our nurse) were quite frustrated by the lack of communication and our nurse was frantically trying to track down the cardiologists and surgeon to talk with us.

Finally, on Friday evening, as soon as our surgeon wheeled his patient out of the operating room, we got to sit down to talk with him and the cardiologist. At that point, they gave us a different plan of action than we had heard previously. The cardiologist explained that for the last two days, they had been discussing Liv’s case in depth with other doctors / surgeons at Texas Children’s Hospital and at other institutions to try to determine if there was any way that they could conduct the surgeries and what chance Liv would have to survive. All of the doctors and even an ethicist were in agreement – there was no way that Liv would survive the series of surgeries (less than a 1% chance), and given that, they would not perform the surgeries.

We were completely taken off guard by the change in direction, which made the bad news even harder to hear.  Through our tears, we spent the next hours poring over the facts of Liv’s case with the doctors and comparing them to the research, trying to make sure that nothing was overlooked and everything was being appropriately considered. When we initially made the choice to bring Liv to TCH, we knew her cleft and chromosomal deletion increased her risks for the HLHS surgeries, and estimated that her chance of surviving the first of the 3 surgeries was around 50%.  The doctors explained that these chances had changed dramatically since she was born early and small, and that those factors were even more concerning than her previous risk factors. Her main risk factors were now: 1) cleft lip and palate (extra cardiac anomalies are known the increase risk, and cleft lip and palate specifically can cause issues with secretions that can damage the lungs over time, as well as cause troubles with intubation, and increase risks of infection, all of which are very bad news when you need to be in pristine condition for a series of 3 open heart surgeries), 2) a chromosomal deletion (any chromosomal involvement increases risks for these surgeries, and while we will never be sure of all of what Liv’s deletion caused since she was so young, we do know that it at least manifested itself in her small size, and there were some indicators of problems with her kidneys and cerebellum, which are in the midline defect family, as  were her cleft and heart), 3) low birth weight (she was 4.1 pounds at birth and the risks for the first surgery increases greatly when babies are less than 5.5 pounds), 4) prematurity (she was born at 36.1 weeks, and risks for the first surgery increase when babies are born before 37 weeks gestation, and there are even differences in outcomes for babies born at 38 versus 39 weeks), and 5) she was small for gestational age (this is a separate risk from weight and prematurity that means that even for being born in the 36^th week, they would expect a baby to be larger than 4 pounds; the average for 36 weeks is about 6 pounds).  

When Beth finally asked, “Are you saying there is no way we can do the surgeries?” it was the longest and most deafening silence of our lives, and it was heartbreaking to hear that they would not. But ultimately, we agreed with the doctors that these risks were insurmountable for little Liv, and decided that it was the right thing to do to not proceed with the surgeries. Our immense frustration with the doctors for leading us to believe that the choice on whether or not to proceed with surgeries was ours (and ours alone), and then not communicating to us for 2 ½ days that it was no longer our choice, was only partially eased by the fact that it was very evident that the doctors had done much more than their due diligence in researching Liv’s case and giving her every chance. The other fact that helped ease our frustration, is that they did not compromise Liv’s care whatsoever while we waited those for those two days.

We were overwhelmed that night with a mix of emotions. From frustration at the doctors and circumstances, to appreciation for the time and effort they took to conduct their research; from realizing our grief over the possibility of losing Liv was real, to relief that we wouldn’t have to put her through the surgeries; from confusion about what to do next, to thankfulness for the clarity of the decision that we worried about most.

One of the blessings of our time in the CVICU was the wonderful nurses, especially nurse Whitney. She was with us for our first night there (the night that Beth broke her toe), and with us again on Friday night. She did such a wonderful job in taking care of us as much as she took care of Liv. She gave us space and created privacy for us when we needed it (we shared our corner of the CVICU with 4 other families), was there when we had questions or needed her, and somehow managed to make us smile when we were sad.

On Saturday morning, we asked the doctors if we could bring Liv home to Louisiana. By the afternoon, they told us that they would be able to fly Liv and us together back to Zachary, and by early Sunday morning, we were headed home – something that we never thought we would be able to do if the time came for Liv to pass away.

Through it all, it felt like there was one blind turn after another, but the thing that we are most amazed by is that in each turn, God was there, providing us peace and comfort. Not once were left wanting; not once did we feel regret; not once did we feel we were alone. Every turn in Liv’s life made it more unique and showed God’s grace and compassion for us, and showed Him working all things together for good.

Liv's Story - Part 1 of 3

So many things have happened over the past two weeks that it’ll take a long time for us to fully process what all has happened. Liv’s physical life was short but full, and God has used (and is using) her life to bless us and other more than we could have ever hoped for.

In an effort to document some of what has happened over the last few weeks (it’ll take us a long time to fully document everything), we will write a couple more blogs on the events in Liv’s life, and break it into several blog posts, as even the simplified story is quite lengthy.

No matter how many book or websites we read or how much preparation we thought we may have had, nothing could prepare us for the joy, excitement, and rush of life when Liv was born. The same was true for when we had the twins – it doesn’t really hit us until we can see and touch our babies – we are their protectors, solely responsible for their life and wellbeing. That being said, the chaos that ensues when having a baby that needs immediate intensive care was even more impossible to prepare for before birth and 1 million times more chaotic afterwards.

It was such a relief to be able to see Liv again on Sunday after spending our first night apart; however, when we first arrived at TCH, we were immediately faced by the seriousness of her medical issues. We spent the next couple days watching various doctors come by to do many series of tests and talking to them to make sure we fully understand what they are testing for and what the test results mean. Every time we would think that we could take a breather - more doctors, more tests. Like we’ve said before, all of the medical staff has been wonderful in caring for Liv and for us and making sure that we know what’s going on and ensuring us that they are taking good care of her – however, it’s still very overwhelming. Through all of the tests, nothing surprising really came of them…her kidney levels were a little high (but that’s relatively normal for newborns), and there were some comments on her brain MRI (again, relatively normal for babies born at 36 weeks, and relatively normal for babies with heart defects), but nothing serious, which was a relief that we didn’t have to deal with an entire new set of problems.

(Liv and all of her CVICU equipment)

Our first 3 nights in the hospital, we averaged about 3hrs of sleep. Between trying to delay Beth’s labor & delivery and being up all night talking to Kangaroo Crew & Texas Children’s Hospital (TCH) when Liv was being transported, we were exhausted by the time we got to TCH on Sunday. To add to the list, Beth broke her big toe around midnight on a chair in the waiting room for the cardiovascular ICU (CVICU) our first night there.

(at 3:00am in the ER, all you can do is laugh’ about it, especially when the xray tech asks if there’s any chance you could be pregnant. I guess “I had a baby yesterday” is a sufficient “NO.”)

There were a couple days though the past two weeks that we will always remember and that Monday was one of them. After being exhausted and while still getting used to the CVICU and all of the chaos, we had back to back meetings with the cardiologist and heart surgeons on Monday afternoon. They told us all of the risks for the HLHS surgeries and all of the additional risks that Liv has due to her cleft lip & palate and chromosome deletion. Even though we knew all of this beforehand, there is nothing that could prepare us for hearing that the risks are “astronomically high” to have our new born daughter undergo life-saving open heart surgery. At that point, it didn’t matter what we’d prepared for, there were no questions we could ask to make it better, and nothing we could do to ease the road that Liv had ahead of her. Our hearts were broken (again) for Liv’s. Even so, we asked if there was a choice to be made (surgeries or no surgeries) and were told yes – we had a tough choice to make.

We spent that night and the next day thinking through our original decision to bring Liv to Houston to have the surgeries, and after much debate decided that if the doctors had no “new” information or risk factors from what we knew before Liv was born, that we should proceed with the surgeries (we had already spent many weeks wrestling with this decision before Liv was born). Therefore, we told the doctors on Wednesday morning that we wanted to proceed with the surgeries for Liv.

Wednesday and Thursday were calmer days than Liv’s first couple days in the CVICU. The initial chaos of new doctors and tests had settled down, and Liv was doing well. This gave us a peaceful period to spend time holding Liv and allow Asher and Eli to visit.

 

We’ll always remember this time with Liv, and believe that this calm before the storm was one of the blessings that came out of our very unusual road with her.

Liv is Here!

So just when we think we’ve got our lives planned out, things change, plans are broken, and life gets crazy. The last couple days have definitely not gone the way we planned, but though God’s grace, everything has been as smooth as we could ask for.
We were planning to pack up our family and drive to Houston this past weekend so that Beth could finish her pregnancy & deliver Liv full term under the care of Texas Children’s Hospital (TCH). As we were packing on Friday evening, Beth’s water unexpectedly broke, and we drove to Woman’s Hospital in Baton Rouge to see what to do. Little did we know that Liv would be born the next day.

When we first arrived at Woman’s Hospital, we immediately asked if we could have Beth or Liv transported to TCH. After initially being told that Woman’s Hospital wouldn’t transport Beth or Liv (and after many, many phone calls), we finally were told that they could transport Beth by ambulance before she went into labor, or transport Liv by air after she was born. The catch was that TCH did not have any available room to accept Beth before she delivered Liv. Woman’s Hospital called TCH every hour through Friday night and Saturday morning to see if a bed would open up for Beth. Finally, on Saturday morning, we were told that a room had opened up at TCH! Just at that time, Beth started to go into labor and along with the doctors, we decided that no matter how badly we wanted to be at TCH for Liv’s birth, it was too risky to take the 4 ½ hr ambulance ride to Houston. This turned out to be an excellent decision, as Liv was born only 2 hrs later (quick labors at 36 weeks seem to be Beth’s “thing” – the twins were born at 36 weeks 4 days and her labor only lasted 4hrs).

(where Liv would have been born had we taken the ambulance ride)

Lively Mae Hembree; August 23, 2014 at 1:09pm; 4lb 1oz; 36 weeks 1 day

Liv is beautiful and is our pride and joy. There’s nothing that quite compares to the joy of seeing and holding our daughter for the first time. We are constantly reminded of how blessed we are to have Liv in our lives, and are overwhelmed by the joy of having a daughter and being able to see and touch her.

The TCH air-lift team is called the Kangaroo Crew. They came to the NICU at Woman’s Hospital to pick up Liv and transport her to TCH on Saturday night. They were the nicest, most caring group of people we have ever met. Every one of them were super understanding of what we were going through and went way out of their way to let us know everything that was happening and assure us that they were taking good care of Liv. They even called us at every step to let us know where Liv was and how she was doing.

(Kangaroo Crew transport to Texas Children’s Hospital)

We spent that Saturday night in the hospital in Baton Rouge, as Liv safely made her way to the cardiovascular ICU (CVICU) at TCH. Thanks to Beth’s quick and easy labor and delivery, she was able to be discharged from Woman’s Hospital on Sunday morning 19 hrs after having Liv. The only part of our original plan was that we drove to Houston on Sunday; everything else was completely out of our hands.

Because our plans didn’t work as we thought, we have had even more of a chance to appreciate how God takes care of us and provides for us at every step. It was awesome to have Liv in Baton Rouge because of the chance we had for family and friends to be close and to be able to see us after Liv’s birth. We are so very grateful for all of the help, encouragement & prayers that we received from everyone (especially so for those people who took care of Asher & Eli when we couldn’t). The boys even got to go to a birthday party on Liv’s birthday, haha.

 (Our boys having fun in the water)

Also, the medical community at Woman’s and TCH have been wonderful in taking care of us and Liv. There have been so many people already involved in her care, and each of them have been exceedingly kind and understanding of our situation.

 

(Just a few of the wonderful people that are taking care of Liv)

The road ahead is long and difficult. The road ahead is scary and uncertain. However, we have great joy in our daughter, and joy in the expectations of the plans God has for her. We know that God has a plan for her life and that this physical life is only transient.

(Beth holding Liv for the 1^st time at 2 days old)

Baby Liv

What a crazy couple months it’s been! We found out on January 10, 2014 that we are expecting our 3rd child! The next several months whizzed by as our anticipation grew into finding out if Asher and Eli (our twin 3yrs olds) would have a baby sister or brother. At our 20 week ultrasound, we were thrilled to find out we were having a daughter, and decided to name her Lively Mae Hembree!

The ultrasound tech at our 20 week apt said that she couldn’t see Liv’s heart as clearly as she would like to, and called in the doctor, who also couldn’t get a good view (despite many tries to get Liv to reposition). They referred us to the high risk doctors (Maternal Fetal) “just to be safe”. Because we saw many Maternal Fetal doctors during Beth’s pregnancy with the twins (who were perfectly healthy), this didn’t seem like a big deal to us. Three weeks later, on our 4th wedding anniversary, a follow-up appointment with the Maternal Fetal doctor revealed that “just in case” quickly turned into the worst news we’ve ever been given.

It took several more appointments and tests to figure out the full story, but we eventually came to understand that Liv has Hypoplastic Left Heart Syndrome (HLHS), a Cleft Lip and Palate, and a partial deletion of chromosome 22. In addition, she seems to be small, but it’s unclear whether that is related to any of her other conditions. HLHS means that the left side of her heart is too small and isn’t pumping as much blood (none in our case) as it should. It also turns out that of the various congenital heart defect that exist, HLHS is one of the worst. As we researched more about HLHS, we found that the “treatment” is very extreme and more of a patch than a repair. Liv will need to undergo 3 open heart surgeries (the 1st within her first week of life) within about 3 years to essentially re-pipe her heart so that the right side can do all of the work that was meant for the left side. She will spend significant time in the hospital / ICU and the list of potential complications and additional procedures longer than we ever thought possible. After all of the surgeries are complete, there is the chance for a reasonably “normal” life, but always looming is the high chance of heart failure (because the right side of your heart is not designed to carry the full load) and the need for a heart transplant somewhere down the road.

Having a cleft lip & palate and chromosome deletion only add to the complications and complexity. We continually see that adding any additional issues to HLHS causes the survival rate to plunge and the risk for potential complications to increase. The cleft lip & palate repair requires a couple surgeries, which would normally be pretty low key in comparison, except for the fact that any additional surgery on a child with HLHS is a pretty scary ordeal. Also, we’ll have to work with the surgeons to fit the cleft lip & palate surgeries in around the heart surgeries, which will be delayed to some extent.

It’s hard to determine how the partial Chromosome 22 deletion fits into the whole picture. Liv’s deletion actually overlaps two other “known” syndromes (DiGeorge syndrome and Distal 22 deletion). Deletions in this region are known to cause heart defects and cleft lip / palate issues; however, neither of these syndromes are linked to HLHS – it’s actually extremely rare to have HLHS and a Chromosome 22 deletion. So while the chromosome abnormality can bring a lot of other symptoms (immune deficiencies, developmental delays, etc.), it’s difficult to determine how many or how severe these will be. The only way to know is to check at birth and as she develops, and even then, it may be difficult to determine the full impact. The good news in all of this is that with so many ultrasounds, the doctors have very thoroughly checked for all sorts of other issues, and thus far have not been able to find much. She is small, which could be related to her chromosome abnormality, and could also create issues for the HLHS surgeries. So far her growth seems to be continuing and not slowing down much further, which is good news.

Because the medical treatment options are so severe (and the probabilities of survival are low), we considered for a long time the option of comfort care: choosing not to perform any surgeries and allow Liv to live out her short life without ever having to know the pain of surgery or other extreme medical treatment. After several weeks of prayer, discussion, and research, we’ve started to turn away from this option, in part due to the finality of this decision (without surgeries, there is a 100% chance that Liv will not live longer than about 10 days). We’re currently getting ready to go to Texas Children’s Hospital (TCH) in Houston (the closest hospital that performs all 3 surgeries for HLHS, and also happens to be #2 in the country for this type of treatment) so that Liv can be born and evaluated there. TCH is where we plan to have all 3 of Liv's heart surgeries, any other heart procedures, and her cleft surgeries. Deciding to do the HLHS surgeries is a huge decision, but it is only one of many that will present themselves over the next several months and even years, beginning the day she is born in September. We pray for strength and guidance for every single step of this journey.

The challenges with Liv’s physical body has given us more reason lately to dig into to our relationship with God and has challenged how we view life and our role and purpose as parents. We so easily focus on the fleeting physical attributes and milestones, that we sometimes miss the fact that our children are an incredible blessing from God. What truly matters for Liv (and Asher & Eli) is that their lives bring glory and joy to God, and our role as parents is to teach, nurture, and shepherd them in this manner. Our Liv is truly a blessing and we will praise Him for bring her into our lives.

“I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.”
Psalm 139:14

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