Well, for those of you on Facebook you already know that today was quite a day. I suspect this post will be quite lengthy but I think it's best told wholly, in story form. It started off as a normal, tranquil morning. Tracy and I slept in, which for both of us meant different things. For her, it was the first night out of the hospital, sleeping free from stomach staples and free from nurses waking her to check her vitals. For me, it was a sweet night of slumber in an actual bed for the first time in 6 days. We are now in the Ronald McDonald House across the street from Children's Mercy. It is very comfortable. It will surely become one of our charities we support throughout our lifetime.
My morning check-in with Jude went well. His blood gases were looking good and there were no other matters worth discussing regarding his health and welfare for the day. So, my parents headed over around noon to the hospital, excited to take both Tracy and I to a lunch away from the hospital. We were all feeling pretty good about the day given the bit of bad news we received from our Neonatologist the day before and since my dad, who was down the entire day Sunday with what he now thinks was food poisoning, was up and about and seemed back to normal. Before lunch we (Tracy and I) had to take care of a little admin business at the hospital. As we came out of the office my Mom was laying on the couch in the waiting room. I assumed she was just exhausted, same as everyone else after the week we all had. As she sat up she smiled as said she was resting because she had a deep pain in her lower abdomen that was starting to hurt more. She insisted that it was not that bad so we headed out to lunch. As we got the restaurant, which was only a two miles away, she began to experience more discomfort and pain. Before our food arrived at lunch my Mom was writhing in pain in the back seat of the car, tears streaming down her cheek, in distress about receiving medical assistance since her health insurance will not be active till February. After a few minutes of discussion and insisting on my part, we canceled our lunch orders and drove to the regular hospital across from Children's Mercy.
Once we got Mom inside and admitted, Tracy returned to Children's Mercy to take care of some personal baby business for which she needs to stay on schedule (may or may not have lost all the guys reading this depending on how much you paid attention during post-pregnancy activities). As I left to check-in with Jude they began a series of tests on my Mom which over the course of the day included: two CT scans, an ultrasound, and others that I cannot remember or was not told about. My Dad had to fly back to Spokane within a couple hours of my Mom being admitted. He just began a new job after two years of unemployment so he had to return today for fear of losing his job should he not be at work tomorrow. When I returned from taking Dad to the airport they had run a few of the tests mentioned before on Mom and had no clue what the problem was. She insisted that I return to Jude and that she would call me.
As I got back to the NICU to see my son, I received a phone call shortly upon my arrival from my Mom. She said that the doctors had seen a mass on her kidneys. They didn't know what it was but there appeared to be a mass. As I sat there with my brother-in-law, Jacob, staring at my son I began to think why all of this was happening. I started to think what God was wanting to teach me but then I stopped myself and asked "why should you think that any of this has to do with you? What kind of ego-maniac are you to assume that just because tough situations are happening around you (although I would like to think Jude's situation is at least partly happening to me as a parent) that they are somehow centered around God speaking/working to you or for you?" As I snapped out of my ego-centrism I began to think that myself and other Christians often want to find meaning in everything. If we get turned down for a promotion at work it is because God has something better for us. In the same day, find $10 on the sidewalk then that was God's way of trying to cheer us up, we think. But sometimes, I think, things just happen. They happen because God allows them to happen because God allows free-will. If I try to find meaning in everything that happens in my life, in Tracy's life, and especially in Jude's life over the next year (and more so the next few months) then I will find myself dazed and confused. Because bad things happening in life do not directly correlate to God's love for us. If Jude were to die tomorrow, I could not rightfully assume that this meant God loved Me, Tracy, or Jude any less and this is why he took Jude. In the same way, if Jude has rough days, weeks, or is stricken with Cerebral Palsy this is a result of imperfect results in an imperfect world. My mother experienced pain today because, well actually we don't know why she experienced pain, she was discharged with the source of her pain never being determined. But one thing I am certain, it was not a result of God trying to rub salt in a wound to teach a hard lesson.
As I have shared with many who read this, my younger brother said a profound thing when I told him about Jude's diagnosis. He said this was what I had been preparing for, that as a Christian, you are preparing for hardships as a way to prove your faith. Without hardships, you simply cannot prove your faith. It would be as if a man attempted to prove his bravery without being put in danger. How can you say you'll stand up to something when there's nothing to stand up to? So for now, Tracy and I try our best to stand the test of faith. For the first time in my life I feel as though I can grasp with some semblance of understanding what James meant in James 1: 2-5. It is not the hardship itself that you take joy in. You see, this always threw me. I always thought, "how can I be expected to actually be joyful when terrible things are happening? Surely this is something that I will never accomplish." But, as I said and as I believe James was saying it's not the hardship that you are celebrating. It's the fact that when the hardship comes you realize that: 1) you had faith you didn't think you had (HUGE discovery for me the last six months and 2) faith is rewarded with comfort. I have felt more comfort (or Hupomone the "comfort cascade" for those of you who speak Greek or know Dave Weidner) from God through the small amount of faith I have mustered this last week. Perhaps God's purpose in today was not to increase MY faith, increase my dependence upon Him, and provide an opportunity for comfort but it was, as they say in the medical field, a side effect.
Thanks to all for your support, your messages, texts, phone calls and prayers. Tracy is doing better each day and continues to surprise me by her strength and faith. We are eternally grateful and know that it is not without God's family that we are here and doing as well as we are.
Humbly,
Chris
Tuesday, January 3, 2012
Sunday, January 1, 2012
New Years Day
This is the hardest blog I've had to write so far. Today was a tough day for the Schinzel family. it started last night as we rung in the New Year with our son. His blood gases were not very good last night. They weren't terrible, they just weren't as good. This obviously left us feeling a bit worried as we went off to bed, leaving him in the nursery.
This morning, I went down to check on him and got a relatively good report. The nurse said that his most recent blood gas test was the best that he had ever had. I then met with his doctor who said all seemed well with two exceptions. One, his billirubin levels (Jaundice) were up so they were switching him from a spot lot to a bed light (It looks somewhat more like a tanning bed hanging over his incubator rather than a reading light). He did not seemed too concerned about this but said it seemed to be creeping up so they wanted a bigger light. The other exception was that Jude's blood level seemed to be dropping. The doctor thought this was the result of a bleed. There were, he said, three main places blood could be hiding: The head, the taratoma (mass), and the stomach. They had conducted an ultra-sound on his head and were awaiting results. As I left the NICU, I didn't feel all that worried. Tracy went down a little later in the day and spoke with the nurse who said that they had gotten the results back but she was not allowed to discuss them with us because she didn't have permission. THIS left me feeling insecure and scared. Tracy explained that the nurses were not allowed to disclose test results because they were not the doctors so whether it was good or bad, it didn't matter cause she couldn't tell us anyway without the doctor. We both hoped for the best and waited to meet with the doctor.
A little later in the afternoon we met with the doctor. He informed us that they had discovered that the bleed was in the head. The bleeding was taking place in the ventricles of Jude's brain. He went on to explain the different "grades" of bleeds or Interventricular Hemorrhage (IHV). There are 4 grades of bleeds or IHV. Grades 1 and 2 are typically not considered dangerous necessarily and usually leave no lasting effects. Grades 3 and 4 are more severe bleeds and can leave lasting effects on a child. Jude has Grade 3-4 bleeds in both sides of his brain. He went on to explain that possible long-term effects of Grade 3/4 IHV's are developmental delays, often times Cerebral Palsy. He did not have statistics but said that off the top of his head he felt that out of 10 children with Grade 3/4 bleeds, 4 or 5 would develop Cerebral Palsy.
One of the most difficult parts, as if what we'd heard wasn't enough, was that we would not know for some time if Jude had any long-term damage. In some cases, depending on their severity, the delays begin showing up around 18 months. In some cases, however, delays will not be present till 5 or 6 years old. Emotionally, Tracy and I are not sure what is worse at this moment: learning Jude might develop Cerebral Palsy or finding out that just have more questions that must wait to be answered. Above all this, Tracy and I both struggle with feeling as though Jude just can't catch a break. While we are eternally grateful that Jude survived the birth process prematurely we struggle with feeling frustrated that his list of battles just continues to grow. I did not think that the feeling of helplessness and humility I felt during Jude's birth would or could be topped. However, now that I have held my son's hand, brushed his hair with my fingers, and seen his eyes look up at me I know now that those feelings before are dwarfed by what I now feel and what I fear I might feel in the future.
My heart for my wife extends beyond my own feelings. She has endured one of the most difficult pregnancies both emotionally and physically. Most women would struggle twice as much with half as much. I can't help but feel cheated for her. You would think that having a tough pregnancy would be enough, that it would be enough suffering. But the hardships that have faced both she and Jude for the last four months are insurmountable when compared to my own emotional stress.
For now, all Tracy and I can do is pray. Really, that is all anyone can do. Jude is fighting hard and despite all this is making progress in other areas. As I said before, I am humbled by my inability to affect any physical change in my son's life. God is in control of the situation and is the only one who can guide Jude safely through all of this. Thank you for all the support through emails, comments, and text messages. Please continue to pray for Jude throughout all of this.
This morning, I went down to check on him and got a relatively good report. The nurse said that his most recent blood gas test was the best that he had ever had. I then met with his doctor who said all seemed well with two exceptions. One, his billirubin levels (Jaundice) were up so they were switching him from a spot lot to a bed light (It looks somewhat more like a tanning bed hanging over his incubator rather than a reading light). He did not seemed too concerned about this but said it seemed to be creeping up so they wanted a bigger light. The other exception was that Jude's blood level seemed to be dropping. The doctor thought this was the result of a bleed. There were, he said, three main places blood could be hiding: The head, the taratoma (mass), and the stomach. They had conducted an ultra-sound on his head and were awaiting results. As I left the NICU, I didn't feel all that worried. Tracy went down a little later in the day and spoke with the nurse who said that they had gotten the results back but she was not allowed to discuss them with us because she didn't have permission. THIS left me feeling insecure and scared. Tracy explained that the nurses were not allowed to disclose test results because they were not the doctors so whether it was good or bad, it didn't matter cause she couldn't tell us anyway without the doctor. We both hoped for the best and waited to meet with the doctor.
A little later in the afternoon we met with the doctor. He informed us that they had discovered that the bleed was in the head. The bleeding was taking place in the ventricles of Jude's brain. He went on to explain the different "grades" of bleeds or Interventricular Hemorrhage (IHV). There are 4 grades of bleeds or IHV. Grades 1 and 2 are typically not considered dangerous necessarily and usually leave no lasting effects. Grades 3 and 4 are more severe bleeds and can leave lasting effects on a child. Jude has Grade 3-4 bleeds in both sides of his brain. He went on to explain that possible long-term effects of Grade 3/4 IHV's are developmental delays, often times Cerebral Palsy. He did not have statistics but said that off the top of his head he felt that out of 10 children with Grade 3/4 bleeds, 4 or 5 would develop Cerebral Palsy.
One of the most difficult parts, as if what we'd heard wasn't enough, was that we would not know for some time if Jude had any long-term damage. In some cases, depending on their severity, the delays begin showing up around 18 months. In some cases, however, delays will not be present till 5 or 6 years old. Emotionally, Tracy and I are not sure what is worse at this moment: learning Jude might develop Cerebral Palsy or finding out that just have more questions that must wait to be answered. Above all this, Tracy and I both struggle with feeling as though Jude just can't catch a break. While we are eternally grateful that Jude survived the birth process prematurely we struggle with feeling frustrated that his list of battles just continues to grow. I did not think that the feeling of helplessness and humility I felt during Jude's birth would or could be topped. However, now that I have held my son's hand, brushed his hair with my fingers, and seen his eyes look up at me I know now that those feelings before are dwarfed by what I now feel and what I fear I might feel in the future.
My heart for my wife extends beyond my own feelings. She has endured one of the most difficult pregnancies both emotionally and physically. Most women would struggle twice as much with half as much. I can't help but feel cheated for her. You would think that having a tough pregnancy would be enough, that it would be enough suffering. But the hardships that have faced both she and Jude for the last four months are insurmountable when compared to my own emotional stress.
For now, all Tracy and I can do is pray. Really, that is all anyone can do. Jude is fighting hard and despite all this is making progress in other areas. As I said before, I am humbled by my inability to affect any physical change in my son's life. God is in control of the situation and is the only one who can guide Jude safely through all of this. Thank you for all the support through emails, comments, and text messages. Please continue to pray for Jude throughout all of this.
Saturday, December 31, 2011
Tracy and Jude
Well, Jude is doing good. He was on a smaller ventilator earlier today, however, it wasn't quite working out like they hoped so. His work-ups all look good and he's making progress. His Jaundice level was up slightly today but it's not too concerning to doctors. I spoke with the Ear, Nose, and Throat Doctor who said that they are waiting for Jude to get more independent with his breathing before they talk about removing the tumor. They won't even give us a "ball park" date. My best guess, since I am a medical professional, is they will remove the tumor sometime in the middle of January.
Jude is now opening his eyes, well eye since his right eye is still kind of swollen from the taratoma pushing up on it. Tracy and I both agree that it's a whole new level of connection now that we can see his little eye looking at us. Tracy and Aunt Katie were visiting him yesterday and his little, left eye kept sweeping back and forth, looking at them as they stood on opposite sides of the incubator. All of the Mitchell family has been able to see him at least once at this point and my parents are in town now.
I must take some time to talk about my wife and how strong she has been. First off, when her water broke she was calm as a cucumber in the shade in spring. And from my previous posts you know that was a scary ordeal (reminded of the scene on the bottom deck after the Titanic hit the iceberg). Nobody in the house necessarily freaked out but it certainly woke the neighbors I'm sure. Even on the way to the hospital she was relatively calm and collected the entire drive.
The next morning, her contractions increased in pain and frequency. She was a trooper. She didn't get an epidural and hung in there even when she hit 8 cm dilated and going into labor. After delivery, she was back to her normal self within an hour (in a lot of pain) but was talking normally. The first day she was pretty sore but really never complained. By the second day, she was up walking around with a little assistance. The nurses and doctors in the both the Fetal Health wing and NICU were all amazed at her ability to be up most of the day. On the third day, she was getting out of bed by herself and even walked back from the NICU by herself, which is quite a walk cause it's a big hospital. She continues to amaze the nurses and doctors by her ability to withstand pain and be as mobile as she is after just having surgery. Even in the midst of all her own personal uncomfortably (if that word can even qualify as an adequate feeling when you have 16 staples across your stomach) and the emotional toll of having a pre-term baby, she continues to be the stability in our family and the "All-Seeing Eye" that keeps us on track.
-Chris
Jude is now opening his eyes, well eye since his right eye is still kind of swollen from the taratoma pushing up on it. Tracy and I both agree that it's a whole new level of connection now that we can see his little eye looking at us. Tracy and Aunt Katie were visiting him yesterday and his little, left eye kept sweeping back and forth, looking at them as they stood on opposite sides of the incubator. All of the Mitchell family has been able to see him at least once at this point and my parents are in town now.
I must take some time to talk about my wife and how strong she has been. First off, when her water broke she was calm as a cucumber in the shade in spring. And from my previous posts you know that was a scary ordeal (reminded of the scene on the bottom deck after the Titanic hit the iceberg). Nobody in the house necessarily freaked out but it certainly woke the neighbors I'm sure. Even on the way to the hospital she was relatively calm and collected the entire drive.
The next morning, her contractions increased in pain and frequency. She was a trooper. She didn't get an epidural and hung in there even when she hit 8 cm dilated and going into labor. After delivery, she was back to her normal self within an hour (in a lot of pain) but was talking normally. The first day she was pretty sore but really never complained. By the second day, she was up walking around with a little assistance. The nurses and doctors in the both the Fetal Health wing and NICU were all amazed at her ability to be up most of the day. On the third day, she was getting out of bed by herself and even walked back from the NICU by herself, which is quite a walk cause it's a big hospital. She continues to amaze the nurses and doctors by her ability to withstand pain and be as mobile as she is after just having surgery. Even in the midst of all her own personal uncomfortably (if that word can even qualify as an adequate feeling when you have 16 staples across your stomach) and the emotional toll of having a pre-term baby, she continues to be the stability in our family and the "All-Seeing Eye" that keeps us on track.
-Chris
Friday, December 30, 2011
The First 24
Chris here again, well the first 24 hours have passed. It's a funny feeling to have a child at any time I'm sure but it's surrealistic to have a child as early as Jude. I suppose you are never fully ready but it truly has taken us to a reality that you only experience after taking the blue pill (a Matrix reference for those that are not familiar).
Tracy is doing well. Aside from soreness and other "just gave birth" related issues she is doing just fine. She is eating normally and is up walking albeit only very short distances (I think she likes the wheelchair, personally). Numerous nurses and doctors have remarked that she looks really good despite having surgery only a day ago.
Jude is doing very well from what we know. He is the most popular baby in the NICU and has been seen by most of the Mitchell family so far. He is small but a pretty long little guy at seventeen and half inches. He is beginning to move around a little bit more and according to a nurse and his Meemaw (Grandma Kay) has opened one eye on two occasions. One, to give the nurse the "stink eye" to let her know that he was sleeping and didn't want to be disturbed and two, to let Meemaw know that he could hear her voice.
Tracy and I have been down with him pretty frequently and have held his hand simultaneously together. He doesn't like his feet to be touched (just like Dad) and will kick if you do. He is growing stronger. Yesterday they lowered his respirator to a slower level since he had better looking gases (don't ask what that means cause I don't know). It was a small bump down but it's progress all the same. They have put a photo lamp on him which is just a regular looking lamp that has "blue lights" which act as somewhat of a substitution for sunlight. They began this yesterday because Jude was looking a little Jaundice which is not uncommon in premmies and the phototherapy helps with this. The nurses informed us that once he starts having bowel movements, which will be relatively soon, that the Jaundice will clear up.
As far as the taratoma (the mass) there is no time-line for removing it. Since the lungs are the last thing to develop in the womb, Jude's lungs are not fully developed. He also has the tracheostomy tube in his throat. They have ordered a custom tube since the current one is too big and is going down his throat too far. This is causing his right bronchial lung to become more developed than his left which is causing the left to be stunted in it's growth. The doctors have informed us that this is not a major concern and is fairly common. So as far as the removal of the taratoma it is dependent upon his respiratory health which cannot be estimated. He IS making progress and is quite strong. Once he is breathing more independently they can run the necessary tests to see where the blood flow is going through the mass and where it begins etc etc. For now, they estimate that it is coming from the front of the pallet (the roof of his mouth) and that the stem is dime-sized. This is good news. The front of your pallet is hard whereas the back part of your mouth begins to get softer and softer as you go back towards the throat. Since the mass is forming in the front of the pallet, the hard part, it is more likely that it is not spread anywhere else whereas if it were coming from the back there would be an increased chance that other areas would be affected. This does not mean that currently no other areas are affected (as they cannot tell until they do imaging) but at this point it would be less likely that it would. Given that the stem is dime-sized that also means that removal should be easier.
We also were able to see Jude's chin as they have now elevated the mass instead of letting it rest on his chest. This is good news as before birth they estimated that he might not have much of a chin and that is jaw would be significantly deformed. This does not appear to be the case. Again, until the teratoma is removed there is only limited estimation but so far his jaw-line looks developed.
So, good news has continued to come from a bad situation. We are ever present of God's work in this whole process and his persistence to make Himself known, which in my mind is just fine. We will continue to give updates as they come and pictures soon to follow
Tracy is doing well. Aside from soreness and other "just gave birth" related issues she is doing just fine. She is eating normally and is up walking albeit only very short distances (I think she likes the wheelchair, personally). Numerous nurses and doctors have remarked that she looks really good despite having surgery only a day ago.
Jude is doing very well from what we know. He is the most popular baby in the NICU and has been seen by most of the Mitchell family so far. He is small but a pretty long little guy at seventeen and half inches. He is beginning to move around a little bit more and according to a nurse and his Meemaw (Grandma Kay) has opened one eye on two occasions. One, to give the nurse the "stink eye" to let her know that he was sleeping and didn't want to be disturbed and two, to let Meemaw know that he could hear her voice.
Tracy and I have been down with him pretty frequently and have held his hand simultaneously together. He doesn't like his feet to be touched (just like Dad) and will kick if you do. He is growing stronger. Yesterday they lowered his respirator to a slower level since he had better looking gases (don't ask what that means cause I don't know). It was a small bump down but it's progress all the same. They have put a photo lamp on him which is just a regular looking lamp that has "blue lights" which act as somewhat of a substitution for sunlight. They began this yesterday because Jude was looking a little Jaundice which is not uncommon in premmies and the phototherapy helps with this. The nurses informed us that once he starts having bowel movements, which will be relatively soon, that the Jaundice will clear up.
As far as the taratoma (the mass) there is no time-line for removing it. Since the lungs are the last thing to develop in the womb, Jude's lungs are not fully developed. He also has the tracheostomy tube in his throat. They have ordered a custom tube since the current one is too big and is going down his throat too far. This is causing his right bronchial lung to become more developed than his left which is causing the left to be stunted in it's growth. The doctors have informed us that this is not a major concern and is fairly common. So as far as the removal of the taratoma it is dependent upon his respiratory health which cannot be estimated. He IS making progress and is quite strong. Once he is breathing more independently they can run the necessary tests to see where the blood flow is going through the mass and where it begins etc etc. For now, they estimate that it is coming from the front of the pallet (the roof of his mouth) and that the stem is dime-sized. This is good news. The front of your pallet is hard whereas the back part of your mouth begins to get softer and softer as you go back towards the throat. Since the mass is forming in the front of the pallet, the hard part, it is more likely that it is not spread anywhere else whereas if it were coming from the back there would be an increased chance that other areas would be affected. This does not mean that currently no other areas are affected (as they cannot tell until they do imaging) but at this point it would be less likely that it would. Given that the stem is dime-sized that also means that removal should be easier.
We also were able to see Jude's chin as they have now elevated the mass instead of letting it rest on his chest. This is good news as before birth they estimated that he might not have much of a chin and that is jaw would be significantly deformed. This does not appear to be the case. Again, until the teratoma is removed there is only limited estimation but so far his jaw-line looks developed.
So, good news has continued to come from a bad situation. We are ever present of God's work in this whole process and his persistence to make Himself known, which in my mind is just fine. We will continue to give updates as they come and pictures soon to follow
Wednesday, December 28, 2011
Delivery Day
Chris here, I thought I'd take over temporarily since I was both awake and lucid during the last 24 hours. As stated in the previous post, Tracy was finishing her update to the blog page when "the dam" that was in her stomach burst and we were made very aware of just how much fluid she had in her stomach (let me tell you, the difference between 30 minutes before her water broke and 30 after he water broke was like the difference between having half a beach ball under her shirt and having half a soft ball under her shirt. She literally lost 10 lbs in 10 seconds. I haven't seen a stomach shrink that fast since The Nutty Professor turned into Eddie Murphy). So, at about midnight last night we headed off to the hospital. Speaking for myself I can say that I was scared and not feeling terribly optimistic. You can't blame me though. Our doctor had told us just a week prior that our biggest fear should be Tracy going into labor over the next six weeks. We like our doctor a lot and appreciate his honesty and forthrightness, but he definitely painted a grim picture for us the week before. He had said that if Jude were to be born in the next few weeks that his chances would be slim to none for surviving. He said that babies with Jude's condition have enough stacked against them without having to be born premature and that if Tracy were in labor, they would try but it would be almost a lost cause to try and perform the exit procedure and that it in all likelihood Jude would not survive the birth. So, like I said, you can't blame me/us for not feeling optimistic as we drove to the hospital after Tracy's water breaking and her experiencing contractions.
When we got to the hospital Tracy's contractions were only 2-3 minutes apart. They were able to slow her down to 8 minutes apart by 3am. The Mitchell clan, (Dad, Mom, Natalie, and Jake) waited in the waiting room till nearly 4am until I told them that we weren't planning on doing anything tonight. Our doctor came in from his quiet bed at home and began making phone calls to the surgical team that we had previously met. He told us that we could hope for Jude to stay inside for 1-3 days and that there was a chance he might even stay in a week. He said there have been cases of babies staying in for another 2 to 3 weeks but that we should not hope for this since it did not appear possible given the contractions and there unwillingness to stop. He said he felt we could maybe get a day or so and again reminded us that this situation was not a good situation (as if we needed the reminder).
Tracy's contractions stayed consistent through the night and into the morning. About 10 o'clock this morning, she began experiencing a lot of pain with her contractions. They checked her for dilation and found she was fine. They gave her some pain meds and continued to monitor her. The pain, however, only got worse. By 11:30 she was in excruciating pain from the contractions and feeling a little cheated since she was not supposed to have to experience any contractions according to the plan laid out through the exit procedure. However, it wasn't too surprising since nothing was obviously going according to plan since none of this was supposed to happen and certainly not this early. It was at this point that they checked her cervix once more and saw that she was dilated 5cm. By the time they rushed her into the O.R. at 11:50, she was dilated 8cm. Jude was coming and was not wanting to wait. So, they whisked her off, after what seemed like forever after saying they were delivering and I'm sure seemed ten times longer to her, and a short time later Jude Micheal was born at 12:34 PM. He weighed 4 lbs 0 oz and was/is 17 and a half inches long. Several doctors (He had a room of between 15 and 20 doctors and nurses working on the whole procedure) came and told me shortly after that the procedure went flawless and he was doing surprisingly well. They said that all the things they check for, oxygen saturation, blood pressure, breathing (followed by some mumbo jumbo medical term) was all doing great. They all seemed pleased but generally surprised that he was doing so great and was so stable.
I was able to see if about 45 minutes later and Tracy got to see him just before he went down to the NICU about and hour and a half after he was born for just a moment. I went with him down to the NICU and hung out with him. I even got a chance to hold his hand. Tracy was able to make her way down to see him later at night. She got to hold his hand and be with him for awhile. She is still incredibly sore, unstable on her feet, and gets nauseous easily. You would hardly know it though when she's in bed. She talks normally and unless she has to move around a bunch is just fine.
I've been able to spend significantly more time with Jude. He is bigger than I expected him to be and stronger. He will hold your finger if you offer it and has a pretty good grip actually. The mass is quite large and prevents you from seeing his chin and pretty much anything below his nose. We have no new information regarding the procedure(s) needed to remove it. All we know is that he is currently stable, which was not to be expected, and that while he's stable there's not immediate rush to remove the mass as it doesn't necessarily have an adverse affect on his growth and development. Plus, his recovery from the procedure to remove it will go better if he is bigger. He does have respiratory something something disease that is indicative of all premature babies. Basically, our lungs create something that helps them work properly and since he is premature he doesn't have as much of that so they are giving it to him. He has a tracheostomy tube (a tube that is inserted into his throat through an incision just above his voice box) and he is on a ventilator to help regulate his breathing (although he shouldn't need to be on the ventilator for an extended period of time.
Anyway, we are grateful for how God has blessed us this far. Tracy and I agreed earlier this evening that it was obvious God wanted to work through this pregnancy but he also wanted us to have to learn to rely on Him and trust in Him. I must confess that today I felt truly humbled as a simple man. As Jude and Tracy were in the O.R., I got down on my knees in my room and prayed. I had to admit before God that I was but a simple man. A man who has not done anything to expect special treatment from God but who could also not help my son on my own. There was literally nothing I could do at that moment or at any other to help my son. I begged God not to take my son, but to deliver him (no pun intended, at least not at that moment) from danger. Now, I have learned from Dave Weidner over the past few months to think of myself in such humble terms. Through Dave I had to pray through and discuss the idea with God that I am not as great, powerful, etc. as I might think I am at times. To be honest, part of my almost daily prayer consisted of me admitting to God that I, to steal a term from a poker player getting called on a bluff, "got nothing." Today, however, I really understood fully what Dave meant and how I think God wants us to feel. Not powerless, as if we should be afraid. Not, defeated as if we are hopeless. But humbled and thus empowered knowing that it is not up to me whether my son lived or died, but it was up to God. When faced with the possible loss of my son I could do no more than seek comfort from the only one who could have provided it to me at that moment. God not only delivered my son and wife safely, but he delivered peace to me during a time when anxiety reigned.
When we got to the hospital Tracy's contractions were only 2-3 minutes apart. They were able to slow her down to 8 minutes apart by 3am. The Mitchell clan, (Dad, Mom, Natalie, and Jake) waited in the waiting room till nearly 4am until I told them that we weren't planning on doing anything tonight. Our doctor came in from his quiet bed at home and began making phone calls to the surgical team that we had previously met. He told us that we could hope for Jude to stay inside for 1-3 days and that there was a chance he might even stay in a week. He said there have been cases of babies staying in for another 2 to 3 weeks but that we should not hope for this since it did not appear possible given the contractions and there unwillingness to stop. He said he felt we could maybe get a day or so and again reminded us that this situation was not a good situation (as if we needed the reminder).
Tracy's contractions stayed consistent through the night and into the morning. About 10 o'clock this morning, she began experiencing a lot of pain with her contractions. They checked her for dilation and found she was fine. They gave her some pain meds and continued to monitor her. The pain, however, only got worse. By 11:30 she was in excruciating pain from the contractions and feeling a little cheated since she was not supposed to have to experience any contractions according to the plan laid out through the exit procedure. However, it wasn't too surprising since nothing was obviously going according to plan since none of this was supposed to happen and certainly not this early. It was at this point that they checked her cervix once more and saw that she was dilated 5cm. By the time they rushed her into the O.R. at 11:50, she was dilated 8cm. Jude was coming and was not wanting to wait. So, they whisked her off, after what seemed like forever after saying they were delivering and I'm sure seemed ten times longer to her, and a short time later Jude Micheal was born at 12:34 PM. He weighed 4 lbs 0 oz and was/is 17 and a half inches long. Several doctors (He had a room of between 15 and 20 doctors and nurses working on the whole procedure) came and told me shortly after that the procedure went flawless and he was doing surprisingly well. They said that all the things they check for, oxygen saturation, blood pressure, breathing (followed by some mumbo jumbo medical term) was all doing great. They all seemed pleased but generally surprised that he was doing so great and was so stable.
I was able to see if about 45 minutes later and Tracy got to see him just before he went down to the NICU about and hour and a half after he was born for just a moment. I went with him down to the NICU and hung out with him. I even got a chance to hold his hand. Tracy was able to make her way down to see him later at night. She got to hold his hand and be with him for awhile. She is still incredibly sore, unstable on her feet, and gets nauseous easily. You would hardly know it though when she's in bed. She talks normally and unless she has to move around a bunch is just fine.
I've been able to spend significantly more time with Jude. He is bigger than I expected him to be and stronger. He will hold your finger if you offer it and has a pretty good grip actually. The mass is quite large and prevents you from seeing his chin and pretty much anything below his nose. We have no new information regarding the procedure(s) needed to remove it. All we know is that he is currently stable, which was not to be expected, and that while he's stable there's not immediate rush to remove the mass as it doesn't necessarily have an adverse affect on his growth and development. Plus, his recovery from the procedure to remove it will go better if he is bigger. He does have respiratory something something disease that is indicative of all premature babies. Basically, our lungs create something that helps them work properly and since he is premature he doesn't have as much of that so they are giving it to him. He has a tracheostomy tube (a tube that is inserted into his throat through an incision just above his voice box) and he is on a ventilator to help regulate his breathing (although he shouldn't need to be on the ventilator for an extended period of time.
Anyway, we are grateful for how God has blessed us this far. Tracy and I agreed earlier this evening that it was obvious God wanted to work through this pregnancy but he also wanted us to have to learn to rely on Him and trust in Him. I must confess that today I felt truly humbled as a simple man. As Jude and Tracy were in the O.R., I got down on my knees in my room and prayed. I had to admit before God that I was but a simple man. A man who has not done anything to expect special treatment from God but who could also not help my son on my own. There was literally nothing I could do at that moment or at any other to help my son. I begged God not to take my son, but to deliver him (no pun intended, at least not at that moment) from danger. Now, I have learned from Dave Weidner over the past few months to think of myself in such humble terms. Through Dave I had to pray through and discuss the idea with God that I am not as great, powerful, etc. as I might think I am at times. To be honest, part of my almost daily prayer consisted of me admitting to God that I, to steal a term from a poker player getting called on a bluff, "got nothing." Today, however, I really understood fully what Dave meant and how I think God wants us to feel. Not powerless, as if we should be afraid. Not, defeated as if we are hopeless. But humbled and thus empowered knowing that it is not up to me whether my son lived or died, but it was up to God. When faced with the possible loss of my son I could do no more than seek comfort from the only one who could have provided it to me at that moment. God not only delivered my son and wife safely, but he delivered peace to me during a time when anxiety reigned.
Pre-labor Update
Well it is a good thing I started off this blog by stating that I am not good at blogging because man I have been horrible about it the last month, it’s ok I know you are shaking your head in agreement. It’s like your favorite tv show when the season ends on a cliff hanger and you have no choice but to wait till next season. Ok so I hate that too so I promise to try and not leave you hanging this long again!
With that said it has been a whirlwind of a month full of ups and downs and little time to breath. After our initial trip to KC we went to Seattle and took a week of from reality. It was a much needed thanksgiving week and enjoyed every minute of it, ok that is a lie disliked the getting stuck in traffic for two hours! When we got back to Boise we had just short of two weeks to pack up our stuff say our temporary good byes make sure all of our ducks were in order. The second day we were back, December 1, I had my final doctor’s appointment in Boise. I was 27wks and measuring 31inches and had gained 9lbs. this told the doctor two things; first I am still underweight but steadily increasing which is good, second you should only measure 2 at most 2 inches above what your week so 31 meant that a I already have a lot of fluid. This means that the baby is not swallowing the fluid and if I continue to increase too much it can cause premature labor. … I’ve never before been told that I am too small and to large all in the same moment!
After getting everything packed up I flew to KC on Monday the 12 and Chris,with my brother Jacob, drove out the next morning. I had my second MRI on the 13, this was done at Children’s Mercy, yep you are thinking right everything was child size, if I was any bigger I would not have fit into that MRI machine. When I was all suited up for the MRI the lady handed me a piece of paper and said pick a movie I was confused and thought it was some kind of psychological test, haha, turns out I actually got to watch a movie while I had the MRI done. The guy who was hooking me up to the machine described the netting going around me as being like an ice cream waffle cone, clearly he works with children! I am a huge baby when it comes to enclosed spaces around my head so I felt a little embarrassed when I kinda freak out while they were sending me through the machine…. Ok done w my tangent…. The following day I had another Ultrasound. They should that the mass had grown even more. I was now at 29wks and measuring 35inches, after seeing the ultrasound Dr Bennett told me that I have Polyhydramnios. He knew I would have extra fluid but I don’t think he was expecting this much fluid this soon. They also could not see the baby’s stomach for the second time and knew the baby is not able to swallow or is swallowing little fluid. Dr. Bennett had not been able to see the results from the MRI the day before but told me he would call on Friday after looking them over and speaking to the ENT (Ear Nose & Throat) specialist. I left the appointment feeling a little grim and knowing Dr. Bennett was not feeling great about what he had seen that day.
On Friday late afternoon Jill, Dr Bennett’s nurse, called. I knew one of two things either they had not been able to see the MRI or they didn’t have real bad news because he himself was not calling. Jill said that Dr Bennett was very happy with the results he had seen from the MRI and that after speaking with the ENT they both felt very optimistic about being able to do the EXIT procedure and establish an airway. They said the mass is up higher, which means that it is more towards the front of the mouth and does not seem to be filling up the mouth but mostly coming out. I said very little on the phone and I realized when I got off the phone that it was the first time any doctor had said they are happy or feel positive with the way things are going in this pregnancy.
Monday the 19th was a big day. We had an appointment with the specialist, met with the anesthesiologist for health approval (I passed), then met with social worker, had a tour of the hospital and finished the day meeting with Dr. Bennett and another quick check up. ……This is where the blog ended last night. As Tracy was finishing this up on Tuesday night, the 27th, her water broke and we rushed to the hospital. So, I’ve posted this as an update up till last night, although clearly A TON has changed in the last 24 hours that trumps this information.
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