Its been a hard task trying to keep everyone up-to-date on Max. We've had a select few that we've tried to offer daily/weekly updates, but everything changes so quickly! One day they are telling us one thing and the next day, another. For example, they've told us that they were going to extubate Max on 3 different days. Of course, this never actually happened. So, I've been very careful about my blog and Facebook updates. I want to limit the number of times I have to correct myself.
Here's what has been going on since Max was born...
Max Carter King was born on November 17th at 3:09 PM. Directly from birth he was passed through a window in the OR to the NICU to be intubated. Max was not breathing. His APGAR score was a 2. For those unfamiliar with an APGAR score, it is a test performed on newborns minutes after birth to determine their physical adjustment outside the womb. It is based on a scale of 0-10. A baby scoring between 0-3 is considered critical, and requiring life saving measures. Once intubated, Max was able to begin breathing with the support of the machine.
Checklist of Max's problems/birth defects:
Hydrocephallus - enlarged ventricles, increasing in fluid volume. His head had so increased in size over a few weeks that they decided he needed to be delivered at 34 weeks.
Meningocele/Encephalocele - These terms for the sac on the back of his neck are interchangeable based on the location.
Clubbed right foot - Not near as clubbed as they had thought based on the ultrasounds.
Cleft lip and palate - Cleft lip on both the right and left, with the right side extending into his nose and sinuses. Cleft palate in the back left of his mouth.
Tiny displastic left eye - At first thought to be fused shut, but has since opened a couple of times. It is so tiny, glassy, lazy and adorable!
Heart slightly turned and small hole - Surprisingly, no worries or problems from either issue.
Amniotic Bands - One of the amniotic bands from my uterus had actually grafted into Max's right cheek, like a little whisker. (It has since dried, shriveled and fell off, but left a scar that extends from the corner of his mouth to his nose.) We wonder if, maybe, this was the reason Max never changed positions. It is possible that he was teathered in place by the band.
For those first few days, Max was fairly non-responsive and the small movements he did make were quite slow. Like, if you tickled his foot it would move about 15 seconds later. He had grip with just one hand and never moved his head. At the time, his head didn't seem all that big to us. But it was quite big and continuing to fill with fluid. His first MRI revealed more detail than what we'd had done while I was still pregnant, but was not surprising to us. Because of his enlarged ventricles, and the obvious disruption of his central nervous system development, there was hardly a way or place for brain matter to form. What remains is very minimal. Max even lacks many of the basic and vital parts of his brain stem. The neurologist explained to us that with those facts, it is unlikely that Max could ever develop beyond a newborn. It is even unlikely that he could ever perform basic human functions like, breathing, sucking and swallowing.
The fluid in his ventricles had greatly increased and, if we did nothing, would continue to accumulate until it killed him. The meningocele/encephalocele on the back of his neck was not only filled with spinal fluid, but also contained a herniated piece of his spinal cord. Again, if we didn't operate to remove it the sac would become a target for infection that would kill him. If we chose to operate, he may die in surgery. Even if the operation was successful, he may not survive long afterward. As new parents to a baby only a few days old, under normal circumstances, these are realities you never imagine having to face. But Tyler and I had known the frailty of Max's condition for 14 weeks. However, knowing that already, didn't make all of this information less painful to hear.
We decided to go forward with the first surgery; Max was just 5 days old. Neurosurgery would place a temporary external drain (EVD) to start relieving the excess fluid, remove the meningocele and attempt to carefully push the herniated spinal cord back into place. The surgeon explained to us that the procedure could either improve Max's reflex and mobility, or moving the spinal cord could leave him paralyzed. There was no way to know for sure, but it was a risk we had to take.
The surgery went great. Max recovered quickly and immediately started showing signs of improvement in his movements and reflexes. The amount of fluid he drained from his head over the next two weeks was astounding to us! When he was about 8 days old, I got to hold Max for the first time. Because the EVD could only be clamped for a maximum of 30 minutes a day, that was the amount of time we could hold him. It wasn't long, it had to be done with much care and caution, but it was heavenly!
After a little over 2 weeks, they removed the EVD. They monitored his head size to see if it would fill back up with fluid, or if somehow his body could process and drain the fluid on it own. It immediately began to fill up again. All of Max's doctors sat down with us for a care conference to discuss our options from that point. The fact of the matter is, that they cannot anticipate that Max can live very long with his great lack of brain matter. But they, and we, would like him to be able to live as long as he can comfortably. So, in an effort to prolong his life and comfort level we chose to have them put in a permanent drain option, which for Max was a VP Shunt. So, Max had another surgery. This one was a little more scary post-op. He struggled to breathe, even with the support of the ventilator for hours following his return from surgery. Also, He looked surprisingly terrifying. His head lost all its volume in the top center, like a deep cave. They explained to us that the fluid had pushed the plates of his skull apart, and as fluid drained during the surgery the lack of brain matter left nothing to hold up his scalp. Thankfully the fluid had dispersed by the next day and his head looked more normal again.
Meanwhile, Max developed an infection from his shunt in the site on his abdomen. He got really sick for a couple days, but has since improved. As we went in and out of surgeries and recovery, they attempted to bring down the rate and settings on the ventilator. They hoped to be able to extubate him many times, but something always seemed to fail. They performed tests with the ventilator turned off to see how he breathed without the support. Most of the time he was able yo breathe fairly well, but he wouldn't vent off enough CO2 on his own or required too much oxygen, etc. Something always maybe extubating not safe choice.
So, that is where we are now. Our only hope to get him home is if he can breathe on his own. In our care conference today, we discussed how we would get Max home if we can, and what we might expect after we get him there. The neurologist, being honest with us, explained that she didn't believe Max would ever make it home. She doesn't know how he could breathe long enough on his own for us to get him there. If we did actually make it home, her guess would be that he could maybe survive hours or days if we are lucky. He would most likely develop another infection from his shunt or would ultimately stop breathing and pass away.
I have to admit, this was heartbreaking for me. Even with knowing the seriousness of Max's condition, I did not anticipate being told days or hours. In my head, I'd thought months. I understood he wouldn't live long and that he wouldn't develop normally, but I still thought we'd have more time. And as positive as I want to be and as faithful as I am, it still breaks my heart because I love him so much.
While he's in the hospital and while he's intubated I know he'll be fine. But extubating him and taking him home is more scary than exciting. Going home means hospice care. Going home means less time. Going home means taking him home to die. And my new momma heart can't bear to think about losing him just yet.
Are there still more miracles ahead? I'm positive there are! Do I know what those miracles will be? No, I don't. We may never take Max home from this hospital. We may only have hours or days if we do. He may shock everyone and live longer than they expect. I just don't know. All I know is that I count each day he survives as a blessing.
We don't know the Lord's exact plans for Max. All we know is that Max was sent here with a special purpose. He has met so few people, but inspired so many. His spirit, his soul are greater than any I've ever known. He is more than I ever could have dreamed or wished for. And despite the heartbreak we will have when we lose him someday, we would never wish for it to have been different. I wouldn't wish for a healthy baby. I wouldn't wish to be home having a normal newborn experience. I wouldn't ever wish to change this, because then he wouldn't be Max. We wouldn't learn what we have. We wouldn't be a stronger, more faithful family. We wouldn't have been blessed to have the sacred, spiritual experiences that have been ours through this process. We wouldn't have Max.
So, no I would never wish this away. I cherish this trial. I cherish the love of my Lord and Savior who guide me and strengthen me. And I cherish my sweet Max.