It was a cold December day when, at just thirty weeks of pregnancy, little Alexis Gabrielle entered this world. She was as naked as a little jay bird with her tiny pink foot flailing in the air as she took her first breath.
Alexis was taken by emergency Caesarean Section, due to the fact that the fluid in her mother’s womb was rapidly depleting and it was necessary or her to come out right away.
After the staff had cleaned her up, they brought her over to us and we were allowed to see our daughter for the very first time. We kissed her little forehead and then Alexis was whisked away to the Neo Natal Intensive Care Unit (NICU), where she would spend the first three months of her life.
She was so fragile and precious! Words could not describe the joy and pride I felt that day; I could hardly contain it. As I looked at her lying there, all two pounds and fourteen inches of her, I promised God that I would love her with all my heart. God had answered our prayers and given us the most beautiful baby there ever was. At last, another child – everything that we had hoped and prayed for.
Three long months
The next three months in NICU had many ups and downs. Some days were good; and some days were not so good.
Ten days into her life the doctors informed us that she had a condition they called Persistent Pulmonary Hypertension (PPHN). They told us that she would probably outgrow it and advised us to wait another month for the condition to correct itself.
So we waited, but still there was no improvement.
They finally consulted a pulmonologist, who suggested that a battery of tests be run in order to rule out some of the potential causes of Alexis’ pulmonary hypertension. Unfortunately the tests yielded very little new information. The staff performed several heart echoes that showed a progressive enlargement of the right side of her heart, caused by the clamping down of the vessels going into her left lung.
We became increasingly concerned about our daughter’s condition, as it only seemed to be getting worse. So we pushed the doctors until they agreed to have her transferred to the University of Michigan for further assessment and a possible heart catheterization.
Upon our arrival at U of M, we were amazed at the enormous size of the place. The massive complex of buildings, all situated together in a giant square, made the other large hospital look small!
We made our way through the maze of hallways to Alexis’ room, where the medical staff were already in attendance, swarming over our tiny girl like honeybees around an orange blossom tree. All night long they ran tests on Alexis and the next morning they performed a heart catheterization on her little five pound body.
I will never forget that morning. We were escorted to the lower level of the hospital and ushered into the Cath Lab. The room was full of expensive, hi-tech equipment and as we walked over to the table and placed our precious baby in the center of it, I felt like I had just left my little girl on an altar to be sacrificed. In the back of my mind I knew that she might not make it through the procedure. We kissed Alexis goodbye and left the room.
The next three or four hours passed ever so slowly. When the procedure was finally completed they moved Alexis upstairs to the Pediatric Cardiac Intensive Care Unit (PICU).
About an hour later they called us in to see her and what a shock it was to find our sweet baby on a ventilator, looking worse than we could have ever imagined possible! The poor child looked horrible; and the news we got was even worse. The Cardiologist informed us that the pulmonary vein going into Alexis’ left lung, was fixed in size and not growing with her. He also said that, medically speaking, there was nothing that could be done for her.
The news hit us like a ton of bricks! How could this be? Was this some kind of cruel joke or something? This hospital boasts that “Knowledge Heals”, but with all of their knowledge and technology they could not fix our Alexis. They could only send her home to die.
We somehow found our way out of the hospital and headed for the hotel room that we had reserved. When we got into our room my wife and I both basically “lost it”! We grieved for hours, as though our baby had already died. At least that’s what it felt like.
We were asking God, “Why”?
Why was this happening to us? Why our sweet little baby?
But the heavens were silent.
The next morning we made our way back to the Hospital, to face another long day knowing that our precious baby had a medical condition for which there was no cure. There was no surgery that could be done to repair her little body.
My mother and another dear woman from our church arrived later that morning. They stayed with us for the rest of the week and were a tremendous blessing to us both.
The following Monday, Alexis was discharged and for the first time we took her home. We were thrilled!
Alexis was home for a period of ten days.
Ten precious days.
Ten hectic days!
We did her feedings every three hours around the clock. It was exhausting, but very necessary.
Early one morning I was up doing her feeding as she lay there in her crib, when suddenly Alexis’ hand went flying up to her nose and her little finger hooked the feeding tube. In two seconds flat, before I could intervene, out came the tube causing formula to pour out everywhere! Little Miss’ hands had done it again!
I said to her, “You know what this means don’t you? Daddy gets to put the tube back down again!” This was a task which was not a fun thing for her, or for me.
The tenth day that Alexis was home she managed to reflux and aspirate into her lungs which can cause a potentially fatal type of pneumonia, especially for a tiny baby. Our little girl did not sound or look good at all, so we took her to the pediatrician right away. The doctor took one look at her and immediately made two phone calls. One was placed to the hospital in Grand Rapids and the other was to 911.
In about five minutes the cavalry showed up - first the local police; then the rescue squad; and finally the paramedics to transport her to the hospital. They wasted no time loading her up and moving her out. With their lights flashing and sirens wailing, they hit the road, racing their precious passenger to the larger hospital in a neighboring city where they had the hi-tech equipment to be able to deal with this type of situation. By the time that I arrived they already had Alexis up on the eighth floor in the Pediatric Intensive Care Unit (PICU). The staff were doing their best to stabilize her, but her breathing was not good. Our beautiful, baby girl was not well at all.
One of the hardest decisions that we had to make was to have Alexis put on the ventilator. However, if we had not done so that day she would have died in a relatively short amount of time. The ventilator was the best chance she had and we were not ready to say good-bye to her just yet.
During that seven week period we learned what it meant to walk by faith, to pray without ceasing and to lean totally on the Lord. We were told more than once that our daughter may not make it through the night. But God had other plans for her; and for us.
Seven Weeks to make memories
After that long seven week period in the hospital we brought Alexis back home again with the help of the Pediatric Hospice team, who provided us with the necessary equipment and supplies we would need to care for our daughter. We were glad for the chance to bring her home again, but in the back of our minds was the uncertainty of how long she would be with us. We knew what the risks were and we were willing to take them, with God’s help.
Alexis was such an alert little girl, with the most beautiful big, blue eyes, that melted my heart every time she looked at me. She was so precious. I just could not get over it; and every day thanked God for this special gift He had given to us.
I looked forward to getting up in the morning and going into her room. It was a joy to scoop my beautiful little girl out of her crib and carry her down the hall and into the living room, with her feeding pump and oxygen in tow. I just loved the little smiles I got from her whenever I tickled her baby feet. To me, every smile was priceless!
Although the doctors had warned us to expect that over time Alexis would gradually succumb to congestive heart failure, we never saw this process take place at all. Either that, or God never allowed us to see it.
God’s other plans
Alexis was home a total of seven weeks all together. Those weeks were the most special moments of our lives and we will always treasure them.
On Thursday, July 5 2001, Alexis had one of her conniption fits and, just like the doctors had told us could happen, she put herself over the edge where her little heart and lungs could no longer compensate.
I did everything I could to calm her down, but nothing worked. When she became unresponsive and quit breathing, I called 911 and once again the cavalry came running.
But it was too late.
They tried to resuscitate her, but all attempts were unsuccessful. Alexis stepped into the arms of Jesus, where she no longer has to fight to breathe and no longer has a feeding tube in her nose and throat.
She no longer has to deal with needles being stuck in her, or have to listen to all of the annoying alarms coming from the monitors. She now experiences what we can only imagine. What we only can get a small glimpse of in our mind’s eye when we read the scripture. How awesome it must be!
Of course, this was not how we would have planned things. But Father God, in his own divine plan, chose to take her home to be with him.
Oh, but how it hurt to let her go like that!
We praise the Lord for the support team He gave us during that time, for they came running to our side with love and strength to help us through. God truly used them to pour out his grace upon us.
The next few days were long and very tiring. We had to make all of the arrangements for the funeral and make the journey up to the cemetery to find a decent place for her little body to rest.
Our church family was awesome. They sent us way over a hundred cards during this time and it helped to read all of the comforting words that were contained in those messages. It blew our minds to see how God works through other people as he does.
Throughout it all, His grace was sufficient for us; and still is. The old hymn rings true that “He giveth more grace when the burdens are greater” and we can testify that He keeps on giving! We found out that when God’s children need an extra dose of His amazing grace, all they have to do is ask for it and he readily supplies it. It’s there for the asking.
Has the story of Alexis’ life and the experiences of her family (their personal thoughts and feelings expressed in these pages) touched your heart?
Have you, perhaps, lost a child or grandchild; or maybe even a close friend or family member?
The reality is that we have all been touched by the death of someone, somewhere along the pathway of life.
Death is something with which we all have an inevitable appointment, regardless of who we are, where we come from, or how we may try to cheat it. The real question is, “What lies waiting for us on the other side of death?”
The Bible gives us the answer to that question. In it, God tells us that there are two eternal destinations that exist beyond this mortal life.
There is most certainly a heaven, a place where God himself lives and where those who trust in him will also spend eternity. There is also, most certainly, a Hell where Lucifer (Satan) and his fallen angels will spend their eternity along with all those who reject God’s plan of Salvation through his Son, the Lord Jesus Christ.
Alexis was not able to make that choice because she was too little to comprehend the Gospel Message. God in his mercy and grace, through Christ’s provision on the cross, covered her and she went straight into the arms of the Heavenly Father.
For so long we asked God for a miracle. Then we were begging Him for one. Our prayers became almost a desperate plea for something, anything, that would give us hope.
The realization finally came - Alexis was our miracle!
Whatever time we were given with her was to be precious and cherished. Although she never said a word, she touched all of our lives in some way.
Alexis showed us who we could be. We could be strong and weak. We could be blessed and sad. We could feel great joy and great pain at the same time. We could be brave. And we could love with all of our heart.
She will always remain a part of who we are.
Thank you Alexis for the heroes you made in your life. Your Mom, Dad and Sissy rose to the challenge. They loved and cared for you with the knowledge that you were only here for a short time. Thank you for the love bond you made between all of us as a family. God bless you for blessing us with so much more than anyone could know.
Thank you Heavenly Father for sharing your precious little baby with us for the short time she was here. We enjoyed the smiles and the occasional laugh she would give us. There was no sound quite as precious as the laugh she had, for we knew it came from within.
What a story! It's certainly worth polishing so that others can benefit from your experience (2 Cor. 1:3,4). God bless you as you continue to heal. I'm sure writing this has been part of that healing journey as well.
Kevin, this was overwhelming. I have no words but can only say "thank you" for sharing your story and your beautiful little girl with us. I would be more than happy to help you tighten this article up so that nothing detracts from the power of your testimony. Send me a private message if you would like some help. With love, Deb