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
Saturday, December 31, 2011
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.
Subscribe to:
Posts (Atom)