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Wednesday, September 30, 2009
We arrived on time, but to our surprise they weren't expecting us! Which was really odd because supposedly everything had been arranged a week before.
Finally, after checking whatever it is they needed to check or speaking to whomever they needed to speak to, they finally admitted us. However, they put us in the wrong room!
I mentioned to the nurse that we were a high risk pregnancy and that we were supposed to be in a room with a window directly to the NICU and that I didn't see a window in the room we happened to be in. She said she would check on it. And I thought, "Seriously, did you not know we were coming?"
Eventually, they got everything straightened out and we were put into the correct room.
We decided that it would probably be a good idea if we went to bed kind of early and got some sleep since we'd be having a baby in the morning!
One of the nurses came in and hooked Bekah up to some monitors for the night. I asked her where I was supposed to spend the night. I was shown a chair. A chair? A chair? Seeing the bewilderment on my face, the nurse informed me that the chair folded out into a bed.
After a few minutes trying to figure out how the chair magically transformed into a bed, I finally got it! It was no bigger than a cot! And A LOT less comfortable! Midway through the night I got up and grabbed another one of the chair-beds and laid it out side-by-side with the first. Then I grabbed a few pillows and stuffed them in between the two beds. Better, but not much.
Bekah had her own difficulties sleeping as well. All night her oxygen monitor kept going off. I don't know what setting they had it on, but apparently she wasn't getting as much oxygen as the nurses thought she should be.
Every 5-10 minutes -- BEEEEEEEP! BEEEEEEEEP! BEEEEEEEP!-- and Bekah would take a deep breath and try to get the stupid thing to stop beeping. Since no one was coming in to check on her, I figured it must not be that big of a deal and told her to either take the monitor off or to just ignore it. She decided to do the best she could to ignore it.
The morning didn't come as quickly as we had wanted, but it did come. And our idea of getting a good night's sleep had gone with the night.
Today was the day! Were we ready?
Tuesday, September 29, 2009
They chose to induce early in order to ensure that Nathan would be born at the University of Utah Hospital, where they would be prepared with all of the necessary equipment that he would need to save his life once he was born.
Also, we were also told in no uncertain terms that if Bekah happened to go into labor before that time, we were to go to the nearest hospital and inform them we were an extremely high risk pregnancy, that our baby could only be born at University Hospital, and that we needed immediate transport there.
Talk about another wake up call! Nathan had to be born at University Hospital. There was no other option.
Thankfully, the last month was entirely uneventful. Bekah made weekly trips to Salt Lake to meet with Dr. Byrne to monitor her health and to check Nathan's growth.
Nathan grew steadily over the last month, but was still what I would have considered "small" for a baby--they estimated him around 6 lbs. In my mind, the bigger he was before birth, the better his chances would be after being born.
But whatever his chances were, we were about to find out...
Sunday, September 20, 2009
I have to go back to the beginning of the summer for myself. When the first sonographer told us that our son had a problem and the doctor told us that it looked like our boy had a congenital diaphragmatic hernia, but that they didn't know how bad it was, and they were sending us to a specialist, time sort of stopped. All of my emotions sort of went on hold, in an agony of suspense, until we found out more. I tried not to think about it too much because there was nothing we could do. Then when we found out it was so bad it was really hard not to absolutely break down. It was like all of your worst fears that you didn't even know you had suddenly came true. It was as horrible as a nightmare, without any of the relief of waking up, because it was real.
As the summer went on and we learned more about Nathan's specific condition, and as we learned more about what would happen to and for him, and as we decided to move forward with faith, my mind and emotions calmed down. We were doing all we could and learning all we could, and while Nathan was still inside me he was safe. Nothing could hurt him, so we just prayed and both Nathan, and my heart responded.
But as summer drew to a close and Nathan's due date approached, I found myself in emotional crisis again. All of my doubts and fears began to resurface. Very soon Nathan would no longer be safe. Soon doing everything we could do might not be enough, and anything I could actually do would be minimal at best. I was frightened and worried for my baby. I wanted him to live so badly, but I had no control over it at all. Every time I actually thought about Nathan dying my heart broke. I tried to build a connection with him. I sat in the rocking chair we had bought and I tried singing to him and I could never get through more than a verse of any song without crying; absolutely sobbing. My prayers also became more earnest. They had always been sincere, but it was harder to say calm, faithful prayers; they were more desperate pleadings.
I thought I had dealt with all of these emotions earlier in the summer, but they all came back as we faced the unknown again. I had to relearn the faith that we'd decided to exercise. I had to relearn, just a few months later, how to pray with all my heart for my son to survive, while knowing that he might not, and trust that somehow the Lord could help me accept whatever happened.
Wednesday, September 16, 2009
Ironically, the bad part was having so much time. The meeting with Dr. Yoder weighed heavily on my mind over the next few days, especially the part where he discussed "compassionate care."
Since the day we had decided to move forward believing that our son would survive this whole ordeal, it was somewhat of an unspoken rule around the house that you don't bring up the "What ifs," even though I know we both thought about them, probably more than we wanted to or would admit to at the time, as if that would be showing a lack of faith in God and His healing power.
Relatively soon our son would be born. This was closer and closer to reality. How long would he live? Minutes? Hours? Days? Would there be time for me to hold him? Or would his mom be the only one to experience that? I couldn't take that away from her. Would he know I was his dad? Would he know how much I loved him?
If he doesn't make it, how do you arrange for a funeral? Where would we bury him? How do you deal with all that?
All the questions I had avoided seriously asking myself and many more now flooded my head.
What do you do? I did the only thing I could do --- I prayed.
But what do you say?
I had prayed for Nathan countless times in the last two months. But now it was somehow different. I don't know how to explain it very well, but it was just different now.
Before, even though Nathan was sick and we had known all along that there existed the possibility that he might not make it, that possibility was now more of a blatant reality. The abstract and intangible was now way more real and tangible.
How do you plead to you Heavenly Father for your child's life? What do you say? Do you foolishly think you can barter for his life? Does your child "deserve" to live more than any other child? Are you more privileged or special than someone who has lost a child that you think God "owes you?"
I didn't know what to say to Him. But I knew He understood my heart. I knew He understood how much I loved my son. I knew how much He loved His Son too. So I couldn't say to Him that Nathan deserved to live, but I could say that if he did, Bekah and I would teach him to be a good and righteous man, to love God and his fellow man, and to serve them both. That was all I had to offer. And if in His infinite and perfect mercy and wisdom that meant that Nathan got to live, then we would do our best to keep that promise. But if not, then I prayed His mercy would be enough to keep my heart soft and curb any bitterness or resentment that I might have if He decided that He needed Nathan on the other side of the veil more than we He needed him here with us.
Tuesday, September 15, 2009
We first met with Dr. Jan Byrne, director of the Fetal Therapy Program at the University of Utah Hospital. As of August 1, she would be taking over pre-natal care of our son. That meant that Bekah would now have weekly 45-minute trips to Salt Lake for the last 5 weeks of her pregnancy.
We then met with Dr. Bradley Yoder, professor of pediatrics at the U of U School of Medicine and Associate Director of the Newborn Intensive Care Unit at Primary Children's Medical Center. Dr. Yoder explained the care that Nathan would receive once he was born and informed us what they monitor and the statistics that they follow to determine how or if the child is progressing. From information gathered from CDH babies from around the country, they had a pretty good idea of the line that marked survival from fatal. But they always do everything they can for babies who fall just under that line "just in case."
And in a very sobering way, he let us know that sometimes, regardless of what they do, they just can't save a child's life. In those situations, what they usually recommend is taking the baby off of all life support systems and providing it with "compassionate care" or in other words holding him in your arms and loving him until he gently passes from this life into the next. Dr. Yoder then gave us a brief tour of the NICU at Primary Children's.
Finally, we topped the day off with the fetal MRI. I wasn't allowed to accompany Bekah into the MRI room, so I had a front row seat in the waiting room while she spent about an hour in the MRI. They took lots of images in order to get the best picture possible of just how severe Nathan's hernia was. The MRI confirmed the severity of the hernia and also that Nathan had a floating stomach (sometimes in the chest, sometimes in the abdomen).
And that was it. Everyone was supposed to be prepared now. The doctors had all the information they could get. We had been briefed as best we could considering the circumstances.
We met with Dr. Ball one last time on August 1. Now that all of the pre-natal evaluations had been completed and we had met with everyone we needed to consult with, Dr. Ball was handing care over to Dr. Byrne. It was a bittersweet moment. Dr. Ball had done so much for us to get us ready for Nathan to be born. It was he who had arranged for all of the appointments and meetings with specialists to be made. So while it was nice to be "graduating" from his care, his help and assistance had proven invaluable in guiding us along the beginning of this journey we didn't know we would have to take.
And for that, we will always be grateful.
Monday, September 14, 2009
We were relieved that the situation wasn't worse, but somewhat disappointed that there wasn't a big improvement like the last time. Nonetheless, we were extremely grateful for the position we were in.
In addition, Dr. Ball followed-up on our meetings with Dr. Puchalski and Dr. Scaife. He also let us know that we still needed to have a fetal MRI to get a better and more accurate picture of the hernia than the ultrasound provided. He would have the hospital call us to schedule the appointment.
Additionally, he would also arrange for one of the neonatalogists at Primary Children's to call us and schedule a consult so that we would could tour the NICU and also to know what to expect in terms of Nathan's care after he was born. He would also have the doctor who would be delivering Nathan call us to schedule a meeting and arrange for transfer of the pre-natal care to the University of Utah Hospital where Nathan would be born.
Sunday, September 13, 2009
Dr. Scaife explained the inner workings of a newborn's circulatory system:
Normal hearts pump blood from the right atrium to the right ventricle to the lungs to be oxygenated to the left atrium to the left ventricle and out to the body.
However, in an unborn child, there exists a bypass route that skips the right side portion of the normal route and instead sends the blood to get oxygenated by the placenta.
When the child is born, the bypass closes and generally seals itself within a few days. The baby is then able to oxygenate its own blood through its normal breathing.
If the baby has issues with his or her lungs that prevent it from properly oxygenating its blood (such as would be the case with Nathan), the child's body instinctively searches for another way to do it. Because the bypass has not yet sealed itself, the blood takes the path of least resistance and moves through it as if trying to still get oxygen from the mother.
However, since mom is no longer there, the blood cycles back through the body un-oxygenated. Eventually, the lack of oxygen and the build up of carbon dioxide in the blood becomes fatal. Many children who have this problem are placed on a machine called Extracorporeal Membrane Oxygenation (ECMO).
ECMO is a method for temporarily supporting patients with severe heart and/or lung failure (see above image). The ECMO circuit essentially adds oxygen to the blood and helps the heart pump blood to the body. Basically, it is similar to a heart-lung bypass machine used during open heart surgery but can be used for a longer treatment period. ECMO uses an artificial lung called a membrane. Blood is pumped through this lung by the machine where carbon dioxide is removed and oxygen is added.
Dr. Scaife also explained that 14 days is the longest a baby can generally be on ECMO successfully without increased danger to the child's life.
In addition to explaining ECMO, Dr. Scaife also explained about the surgery our son would need after birth to repair his diaphragm. This surgery generally takes place within a few days of birth to allow the baby some time to stabilize so it can better tolerate the surgery.
His overall prognosis was "worrisome, but not hopeless."
The consult with Dr. Scaife was very informative. It gave us a great idea of what to expect once Nathan was born. His overall prognosis was very sobering, but at the same time it still let us cling to the hope we had of Nathan surviving.
As the doctor was examining Nathan's heart, I began to feel slight, recurring spasms in my belly. After a few of these, I noticed that each time I felt a spasm, the picture on the screen would jump! It didn't take long to put together what was happening: Nathan had the hiccups!
It was the first time I'd felt him have the hiccups, and I had wondered if Nathan could get the hiccups because hiccups are a spasm of the diaphragm and Nathan's wasn't complete. Well, now we know that you do not need a whole diaphragm to get the hiccups! It was really fun for me to be able to both feel the hiccups and see the screen jump at the same time. It added a dimension of happy reality to the pregnancy.
Unfortunately it made it harder for the doctor to see what he needed to see, but he still felt like he had gotten a good look at the important structures and functions of the heart, so it was OK.
Saturday, September 12, 2009
At our second meeting with Dr. Ball, he explained that while the majority of CDH are isolated, additional evaluations are needed to help rule out other birth defects, since they may adversely affect the life of the child. The amnio had ruled out any chromosomal abnormalities, but there were still a few other evaluations that we needed to rule out other problems as well. One of these was a fetal echocardiogram.
Dr. Ball said that he would arrange for this to take place and have the doctor call us to schedule. Within a couple of days, Dr. Michael Puchalski from the
The fetal echo consisted of an ultrasound – a really long ultrasound! Dr. Puchalski spent nearly an hour studying Nathan’s heart – its size, structure, and function.
His verdict? For the most part, our son’s heart was structurally sound. It had all four chambers and was working well. However, there was a hole between the two ventricles (bottom chambers of the heart), but that is not uncommon and they often tend to eventually close themselves. His heart was also slightly displaced into the right side of his chest, but this is also common among CDH babies.
We left the echo considerably upbeat. Nathan’s heart was structurally sound. This was extremely important to his survival after birth. It was also a big relief to us. We knew our prayers were being heard. We knew that there was still a long road ahead of us, but each bit of good news was very reassuring and helped to strengthen our faith.
Friday, September 11, 2009
The two weeks passed both quickly and slowly. We were excited to see if there was any improvement in Nathan's LHR and to get the results back from the amnio.
During the ultrasound, Dr. Ball commented that Nathan's stomach had moved down and out of the chest (good news!) As a result, he was now calculating the LHR to be at 0.9. Simply amazing! In just 2 weeks Nathan's LHR had increased 50%!
Yes, we had been praying hard, but neither of us expected such an increase. It was truly miraculous.
Probably sensing our enthusiasm, Dr. Ball was quick to remind us that Nathan was still on the worse side of so-so, but we knew that God had had a hand in this.
Additionally, we got the results back from the amnio that day. Thankfully, the results of the amnio came back normal. It wasn't until after we had gotten the results back, that we found out that there are a small number of chromosomal defects and syndromes often associated with CDH, some of which are generally fatal.
Thankfully, that wasn’t going to be a bridge we would have to cross.
Soon after deciding to move forward with the hope and faith that our baby was going to be okay, we came to the conclusion that he needed a name. We decided that it would be more real and more personal if we could specifically petition for him by name in our prayers to Heavenly Father for his life and well-being.
But what should his name be?
I have always been a believer that a person’s name goes a long way in defining who they are. So picking a name for our son was of utmost importance to me because of the situation that we were in.
Bekah’s family has “a thing” for Biblical names. Bekah and 4 of her sisters all have names from the Old Testament: Sarah, Miriam, Esther, and Hannah. The fifth sister, Kathryn, received the “family name.” So Bekah was inclined towards a Scriptural name.
Before we knew of Nathan’s condition, I had gone through the Scriptures and picked out a few random (and according to Bekah extremely odd) names in an effort to dissuade her of this tradition (Ziba was my name of choice for a long time). But after knowing of our son’s condition, his name took on a lot of new importance for me.
After some debate, we had narrowed the selection of names down to four. Bekah had nominated James (in honor of her father) and Joshua (Old Testament prophet). I was inclined toward either Jacob (Book of Mormon prophet) or Jonathan (dear and devoted friend of King David from the Old Testament).
Eventually, we settled on Jonathan.
We were impressed by the name Jonathan. Both for who it represented (if you are unfamiliar with the story of Jonathan and David it is more than worth it to read) as well as its meaning, “Jehovah has given” that we discovered by researching its etymology (origin and meaning) as we tried to whittle our list down to “the perfect name.”
However, when we paired the name “Jonathan” with our choice for a middle name, the whole thing just seemed too long. We tried a couple other middle names, but they didn’t seem right either. That’s when the inspiration came.
“What if we name him Nathan?”
As much as we liked the name Jonathan, Nathan just “felt right” to us. It’s the root of the name Jonathan and has the same etymology – “God has given.” If our son was going to be allowed the opportunity to live, then it would be because “God had given” us that blessing.
Yes, Nathan was to be his name.