I expect that one day I will feel a sense of normalcy about my life, but currently that is not the situation. Yesterday's appointment was a fiasco and perplexing. I had a shocking realization of how you need to be absolutely sure on what your appointments are for and what the doctor is thinking about. I went into ANW expecting an amnioreduction because that is what I thought I was told I needed only to find out that I was scheduled for another BPP to see how things were doing and if necessitated, a reduction. I am still in shock over the situation and left feeling a little dismayed at how things were handled. As part of the BPP, I have the heart rate and contraction straps attached to my belly to monitor Nicolas' heart rate and any contractions I may be having similar to the monitoring you would receive in labor. As the straps were attached and I was thrown back in the chair, I realized that they were not going to get a good reading. I tried to adjust accordingly, but it didn't work. I was uncomfortable and had to forcefully hold the heart rate monitor with constant pressure to my belly to track Nicolas' heart rate. After several long minutes, someone finally addressed the situation because the Dr. was noticing the erratic behavior on their screens. Bryan and I were approached about the situation and informed that because of the poor heart rate strip that they were considering admitting me for further monitoring. They also mentioned that the dips could be indications that Nicolas was not doing well, but could not be certain because of the Trisomy 18. Sitting there I was a little shocked because they also indicated that given a normal situation if the monitoring continued as such then I would be faced with an emergency C-section.
I personally was not getting why they could adjust the strap or try a better position. The doctor decided to go ahead with the second part of testing which is the ultrasound to check Nicolas and the amniotic fluid. Again, could anything be anymore confusing. The tech that did the measurements found an AFI of 19.75 which was obviously wrong. Did she notice the belly on me? I measure 45 inches round. The good news was that Nicolas although having fallen asleep from his previous antics, was moving well and showed signs that he was practicing his breathing. His score was 8 out of 8 which is better than previous tests. During the ultrasound I was placed on my right side and was reattached to the heart rate monitoring. As I laid there on my side, Nicolas held a steady heart rate and didn't have the fluctuations as the previous test. I have to wonder why on earth would they ever have laid me on my back. That is not normal by any means. You are always told to not lay on your back when you are pregnant because you can cut off blood and oxygen supplies.
In any case, we left the hospital with some things to consider. The doctor, who I have seen before, wanted us to consider the level and amount of monitoring we would like from here to the end. Essentially, possibly not doing any more BPP because the normal approach is if there are dips like we saw yesterday then I would be headed in for an emergency c-section. A c-section is not high on my priority list like most women and I fear not only being cut open, but the road to recovery thereafter. I also still believe in the idea that God has a plan for us and to let things happen as He intended.
I think Nicolas is a very strong baby and I have done everything possible to make this pregnancy healthy for him. I exercise, eat right (most of the time), and take all sorts of vitamins and supplements that are good for both of us. I am constantly told by the nurses how amazed they are by how well I am doing given everything. My body feels strong and I don't feel like labor is going to start any day soon. Nicolas has his daily patterns and is definitely "happier" when I am in my regular routine. We are in tune with each other. I can tell on my off days or weekends that he is out of sync. If something is wrong, I will know or sense it. I think all mothers have that ability.
Yesterday was a learning experience for both Bryan and I. First, we have to make some considerations on how we would like to continue monitoring the pregnancy. We need to decided if the BPP are the right choice and what benefit the test provides given the circumstances if we are trying to avoid any type of emergency c-section. We also need to question the doctors and staff at the appointments and challenge their recommendations. If we jump to quickly then what is the benefit to me and Nicolas. Yesterday could of been one of those days we chose to jump when there was not real reason to do so. Our baby could of been born far to early and I would of ended up with an unwarranted c-section.
The next consideration is the birth plan and what we want to happen during labor, delivery, birth and thereafter. I have started the process and hope to have it completed today. I want to make sure that our birth plan reflects the mutual decisions that Bryan and I have made for our family. Our choices may not be what others would choose, however, we have to do what is right for us. We also have the right to change the plan if necessary. Bryan and I are fully aware of the diagnosis given to our son. We understand the immediate complications he will face, but no matter what he is still our child to love and to cherish even if for a short duration of time.
Will my life ever be normal??? I think yes, some day it will feel normal. But at the moment, I have been on a rollercoaster since June. I have been through so much physically and emotionally that words truly cannot describe or express my life at the moment.
Wednesday, December 29, 2010
Monday, December 27, 2010
Post Christmas Update
Now that Christmas is done, I feel like I have a moment to breathe. LOL. Not really. The past few weeks have been a whirlwind of activities between last minute shopping, wrapping presents, and getting kids to various activities. I find myself looking forward to a few days off of work starting tomorrow <smile>. Of course, I still have to get up and run kids all over town, but at least I won't be stuck in the office.
Week 31 was quite eventful and emotional. My doctor appointment on the 17th was stressful for many different reasons. The most significant reason was because of the pregnancy issues related to the excess amniotic fluid called polyhydramnios. Normal ranges are between 9 & 25cm. My levels were at 41cm as of December 17th and my blood pressure is on the rise at 120/90. Although I was not uncomfortable, the consequences of the excess fluid are not good for me or Nicolas. I could face pre-term labor because of the excess fluid fooling my body in thinking it is further along than it really is. My blood pressure could force me into an immediate delivery if I get preeclampsia.
I continued to workout at Crossfit and taekwondo as time permitted. Last week was a very good week with two excellent workouts. Monday was Fight Gone Bad (not for the weak) and the other was deadlifts. I did scale back Fight Gone Bad a little. I was surprised with what I was able to do and feel good doing. My score was 238. Not bad for almost 32 weeks pregnant at the time.
On Wednesday, December 22nd I went back for another biophysical profile. My stats went downhill a little further. This time my AFI (Amniotic Fluid Index) was at 49cm, an increase of 8cm in less than a week. I did a little math in my head and figured out that this rate of increase is not good. Also, my blood pressure is slowly creeping upwards and is now approaching 130/90 which I have never seen in my entire life. I am normally 110/70 or less than that. While monitoring Nicolas' heart rate I watched as all the alarms were triggered because his heart rate fell below the normal marker. As I lay there watching all of this I wondered why no one entered the room to at least see what was going on. It didn't last very long, but it seem like an eternity. Eventually the doctor and nurse entered the room and had me lay on my side. That seem to help the situation and they think that somehow the cord had gotten pinched. Although I had been told the previous week that I could continue on with my exercise program, I was informed by this doctor that it would be recommended to scale back. I am still trying to figure this out. Also, I have to go in tomorrow to have an amniotic reduction to remove some of the fluid from my belly.
So what does this all mean????? Tomorrow I will be heading to ANW to have a needle inserted into my belly and have fluid extracted to reduce the pressure and hopefully make things a bit more comfortable. Ultimately I also hope it buys Nicolas more time to grow and develop. He is a feisty little boy kicking and thumping about in his big ball of fluid. He has so much room that he can still fully extend those legs of his. Of course, I can't deny the possible complications of this procedure....pre-term labor or birth.....But then what are my alternatives...not being able to breathe when I sleep, inability to sit, back pain, increased blood pressure, possible hemorrhaging at birth, pre-term labor. Any way I look at it, not good. So today and this evening I will say my prayers that all will go well. I hope everything I have done along the way to be healthy and strong will go in my favor. My core strength is strong and mentally I think I can work through the pain of having a needle in my belly for a considerable length of time.
And what about Christmas you ask.....well after all of the flurry of running around was done, we were able to enjoy Christmas Eve Mass at the church and have a nice dinner with my Grandma afterwards. We enjoyed salad, 4 cheese pasta and shrimp. Noelle had steak because she is not a fan of seafood. Even though it was getting late we open family gifts and shared in many laughs. Bryan brought Grandma home shortly after 10PM and the girls wrapped the Santa Paws gifts for the dogs. The girls were in bed shortly after 11PM and Bryan and I fell asleep in front of the TV watching a Christmas Story. Santa arrived promptly in the early morning of Christmas and Noelle made sure that we were all up around 7:30AM to start the festivities. Next year, I am pushing her back to 8AM. She is such a Christmas fanatic. The girls proceeded to dig into their stockings and gifts. Overall, it was a good morning. However, some time later that morning I started not feeling well. I thought that by having some breakfast I would feel better, but I was terribly mistaken. Needless to say my breakfast came back with a vengeance and I spent the entire day in bed or on the couch. No Christmas dinner or treats for me. Although I felt crummy, I didn't want the rest of the family to miss out so I insisted they go to the cabin to be with the rest of the family. I spent the evening drifting in and out of sleep while various Christmas shows played on the TV. Bryan and the girls arrived home around 11PM and we all sacked out until almost midnight.
Yesterday was a better day. I managed to be up the entire day and played with the PS3. I ate a small dinner. I am hoping it was merely a reaction to food as I have dealt with in the past and not something worse.
Enough for now... lunch is calling and so is work....
Week 31 was quite eventful and emotional. My doctor appointment on the 17th was stressful for many different reasons. The most significant reason was because of the pregnancy issues related to the excess amniotic fluid called polyhydramnios. Normal ranges are between 9 & 25cm. My levels were at 41cm as of December 17th and my blood pressure is on the rise at 120/90. Although I was not uncomfortable, the consequences of the excess fluid are not good for me or Nicolas. I could face pre-term labor because of the excess fluid fooling my body in thinking it is further along than it really is. My blood pressure could force me into an immediate delivery if I get preeclampsia.
I continued to workout at Crossfit and taekwondo as time permitted. Last week was a very good week with two excellent workouts. Monday was Fight Gone Bad (not for the weak) and the other was deadlifts. I did scale back Fight Gone Bad a little. I was surprised with what I was able to do and feel good doing. My score was 238. Not bad for almost 32 weeks pregnant at the time.
On Wednesday, December 22nd I went back for another biophysical profile. My stats went downhill a little further. This time my AFI (Amniotic Fluid Index) was at 49cm, an increase of 8cm in less than a week. I did a little math in my head and figured out that this rate of increase is not good. Also, my blood pressure is slowly creeping upwards and is now approaching 130/90 which I have never seen in my entire life. I am normally 110/70 or less than that. While monitoring Nicolas' heart rate I watched as all the alarms were triggered because his heart rate fell below the normal marker. As I lay there watching all of this I wondered why no one entered the room to at least see what was going on. It didn't last very long, but it seem like an eternity. Eventually the doctor and nurse entered the room and had me lay on my side. That seem to help the situation and they think that somehow the cord had gotten pinched. Although I had been told the previous week that I could continue on with my exercise program, I was informed by this doctor that it would be recommended to scale back. I am still trying to figure this out. Also, I have to go in tomorrow to have an amniotic reduction to remove some of the fluid from my belly.
So what does this all mean????? Tomorrow I will be heading to ANW to have a needle inserted into my belly and have fluid extracted to reduce the pressure and hopefully make things a bit more comfortable. Ultimately I also hope it buys Nicolas more time to grow and develop. He is a feisty little boy kicking and thumping about in his big ball of fluid. He has so much room that he can still fully extend those legs of his. Of course, I can't deny the possible complications of this procedure....pre-term labor or birth.....But then what are my alternatives...not being able to breathe when I sleep, inability to sit, back pain, increased blood pressure, possible hemorrhaging at birth, pre-term labor. Any way I look at it, not good. So today and this evening I will say my prayers that all will go well. I hope everything I have done along the way to be healthy and strong will go in my favor. My core strength is strong and mentally I think I can work through the pain of having a needle in my belly for a considerable length of time.
And what about Christmas you ask.....well after all of the flurry of running around was done, we were able to enjoy Christmas Eve Mass at the church and have a nice dinner with my Grandma afterwards. We enjoyed salad, 4 cheese pasta and shrimp. Noelle had steak because she is not a fan of seafood. Even though it was getting late we open family gifts and shared in many laughs. Bryan brought Grandma home shortly after 10PM and the girls wrapped the Santa Paws gifts for the dogs. The girls were in bed shortly after 11PM and Bryan and I fell asleep in front of the TV watching a Christmas Story. Santa arrived promptly in the early morning of Christmas and Noelle made sure that we were all up around 7:30AM to start the festivities. Next year, I am pushing her back to 8AM. She is such a Christmas fanatic. The girls proceeded to dig into their stockings and gifts. Overall, it was a good morning. However, some time later that morning I started not feeling well. I thought that by having some breakfast I would feel better, but I was terribly mistaken. Needless to say my breakfast came back with a vengeance and I spent the entire day in bed or on the couch. No Christmas dinner or treats for me. Although I felt crummy, I didn't want the rest of the family to miss out so I insisted they go to the cabin to be with the rest of the family. I spent the evening drifting in and out of sleep while various Christmas shows played on the TV. Bryan and the girls arrived home around 11PM and we all sacked out until almost midnight.
Yesterday was a better day. I managed to be up the entire day and played with the PS3. I ate a small dinner. I am hoping it was merely a reaction to food as I have dealt with in the past and not something worse.
Enough for now... lunch is calling and so is work....
Monday, December 13, 2010
Happy Monday
The girls (me, Noelle & Jena) made a bunch of tasty holiday treats. It is one of our favorite things to do. Noelle is developing some very good baking and cooking skills. Jena is starting to show interest, but I think she is always in the shadow of her older sister. It is fun watching them grow into their baking skills. Each year they take on more responsibilities. Noelle wrote a paper on baking and the importance of each ingredient so I was not allowed any substitutions or older ingredients. We will be baking a lot of chocolate chip cookies over the holiday break as part of her science experiment. I was very proud of her for taking an inventory of everything we needed to make all of our cookies. I think our "cookie" grocery bill was more than the groceries I bought. The platter I brought into work last until the lunch hour and the teachers received a beautifully put together box of treats that will hopefully last a few days.
Week 31 is fast approaching and the time although sometimes feeling quite slow is moving quite fast. The kids are on holiday break from the school starting next week and will be plenty busy with gymnastics (Noelle & Jena) and taekwondo (Jena). Jena is really excited to use her new ice skates which I assume should happen soon enough once all the snow is cleared away. It is bitterly cold this week so the local rinks will hopefully be ready.
Today I went to Crossfit at noon and got in a good workout. My coach indicated I was a bit sweaty at the end. I would hope so after rowing 2 sets of 500 meters, 50 lunges, and 20 push ups for the warm up. The WOD was FRAN which is 21-15-9 thrusters and pull ups. I used the 45 lb bar for thrusters and did a modified standing wide row with the 45 lb bar instead of pull ups. My time was 9:06. We then jumped on the heavy bags and proceed to pound out 5 rounds of 1 min on your own, 1 minute of coach directed instruction and then 2 sets of planks (can't do a v-sit at the moment). It feels good to workout, but I know my days are numbered. At some point I will have to stop, but at least I know I can always come back to it.
We also had another session with Bella Angel Imaging. I will have to write more on that later and put some new pics out of Nicolas.
Week 31 is fast approaching and the time although sometimes feeling quite slow is moving quite fast. The kids are on holiday break from the school starting next week and will be plenty busy with gymnastics (Noelle & Jena) and taekwondo (Jena). Jena is really excited to use her new ice skates which I assume should happen soon enough once all the snow is cleared away. It is bitterly cold this week so the local rinks will hopefully be ready.
Today I went to Crossfit at noon and got in a good workout. My coach indicated I was a bit sweaty at the end. I would hope so after rowing 2 sets of 500 meters, 50 lunges, and 20 push ups for the warm up. The WOD was FRAN which is 21-15-9 thrusters and pull ups. I used the 45 lb bar for thrusters and did a modified standing wide row with the 45 lb bar instead of pull ups. My time was 9:06. We then jumped on the heavy bags and proceed to pound out 5 rounds of 1 min on your own, 1 minute of coach directed instruction and then 2 sets of planks (can't do a v-sit at the moment). It feels good to workout, but I know my days are numbered. At some point I will have to stop, but at least I know I can always come back to it.
We also had another session with Bella Angel Imaging. I will have to write more on that later and put some new pics out of Nicolas.
Friday, December 10, 2010
Still kicking
Ok, so I am talking about me this time. My kicks are getting a bit lower and noticing the belly is putting me off balance. The white t-shirt shows the belly a bit more :o). My belt still fits twice around, but is starting to look like a bow tie. Working on form Koryo which is one of the two black belt forms I need to know by June 2011. Although for 30 weeks preggo I am not complaining. Last night I got my first glance at the 3rd trimester puffiness. OMG my legs and ankles were huge. Not liking it, but it comes with the territory of being pregnant. Good thing it is winter and my cankles are covered!
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| Taekwondo class Thursday, December 9, 2010 |
Wednesday, December 8, 2010
30 week update
The hustle and bustle of the holidays is upon our family. I have been working very hard to get things in order for Christmas. It is amazing how busy this time of year is for me both personally and professionally. It feels like I will never get caught up let alone ahead of the game. As a family we are still working through the many steps we have to take to prepare for the birth of Nicolas. It is very overwhelming at times. The planning considerations are more than you could ever imagine. You have to work through so many scenarios that are not pleasant such as if he is stillborn, survives for a few hours, or is able to come home. All of which are very possible. So as much as we don't like to think about the death of our child, we have to plan for it not knowing when it may happen. It also means as a parent you have to prepare the siblings. Although Noelle and Jena have experienced death close to the hearts with the grandmother, they have yet to experience it this close to home and with someone so young and precious as their own brother. I am hoping my own personal experiences with death of a sibling (sister died at 10 from cancer when I was 15) and parent will help us become stronger as a family.
On Saturday, we are going back to Bella Angel Imaging for another 3D/4D ultrasound of Nicolas. I look forward to seeing his face and watch his antics again. The girls are both very excited and so is Grandma Mary. I am very appreciative that she is still mobile enough to experience this time with us. When my family is so little and having others in my family who have chosen not to connect, it is very special to have my Grandma with us. She is a great source of strength, love, and spirituality.
Next Friday, December 17th we go in for our next scheduled doctor's appointment. I am eager to see if all my hard work has been paying off and allowing Nicolas to continue to grow and develop. I eat very healthy and able to exercise over my lunch hour when work is not so busy. Combined with some good supplements, I am crossing my fingers that Nicolas is still on the charts and is over 2lbs or more.
During this time of year I always reflect upon my life and wonder where my life has yet to take me. It doesn't seem that long ago that my life was very different than it is today. Change is inevitable. Three years ago, my mom passed away after having complications from her ataxia. It was a sad moment for both me and the girls. It is hard to believe that it was 3 years ago today and on the day of the Immaculate Conception. Although my relationship with my mom was painstaking at times, I did appreciate her love for the girls and how she went out of her way as a Grandmother to them. Noelle and Jena had a very special place in her heart and she never let them forget that.
More later...
On Saturday, we are going back to Bella Angel Imaging for another 3D/4D ultrasound of Nicolas. I look forward to seeing his face and watch his antics again. The girls are both very excited and so is Grandma Mary. I am very appreciative that she is still mobile enough to experience this time with us. When my family is so little and having others in my family who have chosen not to connect, it is very special to have my Grandma with us. She is a great source of strength, love, and spirituality.
Next Friday, December 17th we go in for our next scheduled doctor's appointment. I am eager to see if all my hard work has been paying off and allowing Nicolas to continue to grow and develop. I eat very healthy and able to exercise over my lunch hour when work is not so busy. Combined with some good supplements, I am crossing my fingers that Nicolas is still on the charts and is over 2lbs or more.
During this time of year I always reflect upon my life and wonder where my life has yet to take me. It doesn't seem that long ago that my life was very different than it is today. Change is inevitable. Three years ago, my mom passed away after having complications from her ataxia. It was a sad moment for both me and the girls. It is hard to believe that it was 3 years ago today and on the day of the Immaculate Conception. Although my relationship with my mom was painstaking at times, I did appreciate her love for the girls and how she went out of her way as a Grandmother to them. Noelle and Jena had a very special place in her heart and she never let them forget that.
More later...
Wednesday, December 1, 2010
29 Week Update
So where do I begin...lots of information and I only have one brain to put it all in. LOL. Last Wednesday before Thanksgiving, Bryan and I had the opportunity to start working with MPP and Children's Hospital to establish the relationships with different doctors who will care for me and for Nicolas. Initially I thought we would have a lot of time to kill with an appointment at 1PM and the other at 3PM. I found out quickly that we would actually need all the time given to us. The first appointment was with MPP to do an OB intake where they get all of my medical history (felt like a train wreck on paper) and then do a quick check on Nicolas. Both the nurse and doctor were great and very personable. I felt as though the cared about my well-being more so than what I experienced elsewhere. The nurse attributed that to the fact they deal in high risk pregnancies all the time. She wanted to make sure my nutrition was on target and was happy that my chiropractor had me on some of the same vitamins and supplements they would have recommended. A quick ultrasound scan showed Nicolas has flip flopped and is now facing downward. It might have explained some discomfort I had earlier in the week. We spoke with the OB doc who answered our questions. The doctor has indicated that they do not really want to induce me or pick a date. He said it is very likely that because of the excess fluid I will naturally go early. He indicated that many times when they induce and the body isn't ready they end up with unnecessary c-sections.
After that appointment we headed over the Children's Hospital to meet with one of the neo doctors. I found her also very personable and she had a great conversation with us about Nicolas. She has given us more insight into what we can expect at birth, more about the stomach issue and how it could be repaired. She definitely has more knowledge about Trisomy 18 babies and agrees that no two situations are ever alike. I felt more confident that they will support our wishes to give breathing assistance to Nicolas if he should need it and to also correct the stomach issue for him as well. She explained that once he is born he won't be whisked away to the other building, but that he will be brought into another room where he would get assistance if he should need it. They would let Bryan follow Nicolas over to watch everything as long as he doesn't faint. If all goes well, they would bring him back to me before transporting him through the tunnel over to the NICU at Children's. Nicolas will have to undergo a full evaluation for many things. The stomach is a big one. If all goes well and he is stable, they indicated he could have surgery on day 2 to repair the esophagus to the stomach. BUT they don't know what his condition is yet and how the repair would work until they evaluate him. Probably one of the better things to arise was the decision to forgo the MRI scan on Nicolas. Both the OB and neo doctor felt that it would not provide any additional information and is incredibly hard to do an active baby in utero. I am glad because it would not have been comfortable for me and is quite expensive.
We ended our time with a tour of the level III NICU at Children's Hospital. They have a very impressive setup with each baby getting their own private room and nurse. There are couches for family and wi-fi so I can keep people posted on his situation. They do, however, have a stricter policy on visitors because these babies are so fragile. Adults have to be escorted, need to have a flu shot, and cannot have any illnesses. We are hoping to get an exception for Jena because of the circumstances, but know she may be limited in her visits. It is very limiting and I really hope they will allow her through. I don't think it would be fair if she only could see her little brother for 15 minutes a week. YES. I stated that correctly. 15 minutes a WEEK not per day. They don't allow any children that our not siblings in the NICU because of the risk to the other babies. Just more details we have to work through as a family. I think the hardest part is I will be over a 1/4 mile away and have to wheel or hopefully walk myself over to see Nicolas. We also were told that the esophagus repair could lead to at least a month in the NICU. Ultimately we don't know what scenario will play out for Nicolas, but can only hope and pray for the best.
Last night we had an opportunity to meet with a social worker from Children's Hospital who works with the DEEYA program which provides hospice and palliative care for children. At first I was reluctant to meet with the group because the negative connotation that hospice brings, but then found out more about the group that put my mind at ease. The social worker was very kind and really gave us a sense of what they can do to help our family (all of us) get through this situation. They have specialists who can work with the girls and nurses to answer questions on care. The program has seen all sorts of Trisomy 18 families and uses their experiences to help other families. They respect each family's decision and don't judge you for what you may do or not do for your children. The social worker also presented us with some beautiful handmade quilts for the girls and for Nicolas. They also gave us a baby book that was designed by a mother who went through a similar experience to capture moments. She had some many great tips and ideas to help us. It was very useful and really got me thinking. The other reassuring factor is that if Bryan and I really want to see Nicolas make it home, the DEEYA program will help us with that no matter what the circumstances are.
Well it is time for me to get back to work. I was a tad bit late getting in because I was experiencing some acute abdominal pain around the belly button. I wasn't quite sure what it was and ended up going to Abbott once Bryan got home from work to be evaluated. Turned out to be nothing serious and probably related to my growing waistline from the excess fluid. In the end it was a good dry run to the hospital for Bryan. He needs to get familiar with the route to Abbott. Plus we did some of the admitting paperwork.
I don't think there is ever a dull moment in our house. This week is busy with Jena's taekwondo belt graduation on Friday evening, Christmas Village for the school on Saturday morning and the Peppermint Twist gymnastics meet Saturday afternoon. AND Bryan has class on Saturday. It's all good. I love watching the girls compete although I am sad that Noelle is not quite ready yet because of her back injury. She is working hard to be ready for January. The team photos turned out great. So proud of my two ladies!!!
After that appointment we headed over the Children's Hospital to meet with one of the neo doctors. I found her also very personable and she had a great conversation with us about Nicolas. She has given us more insight into what we can expect at birth, more about the stomach issue and how it could be repaired. She definitely has more knowledge about Trisomy 18 babies and agrees that no two situations are ever alike. I felt more confident that they will support our wishes to give breathing assistance to Nicolas if he should need it and to also correct the stomach issue for him as well. She explained that once he is born he won't be whisked away to the other building, but that he will be brought into another room where he would get assistance if he should need it. They would let Bryan follow Nicolas over to watch everything as long as he doesn't faint. If all goes well, they would bring him back to me before transporting him through the tunnel over to the NICU at Children's. Nicolas will have to undergo a full evaluation for many things. The stomach is a big one. If all goes well and he is stable, they indicated he could have surgery on day 2 to repair the esophagus to the stomach. BUT they don't know what his condition is yet and how the repair would work until they evaluate him. Probably one of the better things to arise was the decision to forgo the MRI scan on Nicolas. Both the OB and neo doctor felt that it would not provide any additional information and is incredibly hard to do an active baby in utero. I am glad because it would not have been comfortable for me and is quite expensive.
We ended our time with a tour of the level III NICU at Children's Hospital. They have a very impressive setup with each baby getting their own private room and nurse. There are couches for family and wi-fi so I can keep people posted on his situation. They do, however, have a stricter policy on visitors because these babies are so fragile. Adults have to be escorted, need to have a flu shot, and cannot have any illnesses. We are hoping to get an exception for Jena because of the circumstances, but know she may be limited in her visits. It is very limiting and I really hope they will allow her through. I don't think it would be fair if she only could see her little brother for 15 minutes a week. YES. I stated that correctly. 15 minutes a WEEK not per day. They don't allow any children that our not siblings in the NICU because of the risk to the other babies. Just more details we have to work through as a family. I think the hardest part is I will be over a 1/4 mile away and have to wheel or hopefully walk myself over to see Nicolas. We also were told that the esophagus repair could lead to at least a month in the NICU. Ultimately we don't know what scenario will play out for Nicolas, but can only hope and pray for the best.
Last night we had an opportunity to meet with a social worker from Children's Hospital who works with the DEEYA program which provides hospice and palliative care for children. At first I was reluctant to meet with the group because the negative connotation that hospice brings, but then found out more about the group that put my mind at ease. The social worker was very kind and really gave us a sense of what they can do to help our family (all of us) get through this situation. They have specialists who can work with the girls and nurses to answer questions on care. The program has seen all sorts of Trisomy 18 families and uses their experiences to help other families. They respect each family's decision and don't judge you for what you may do or not do for your children. The social worker also presented us with some beautiful handmade quilts for the girls and for Nicolas. They also gave us a baby book that was designed by a mother who went through a similar experience to capture moments. She had some many great tips and ideas to help us. It was very useful and really got me thinking. The other reassuring factor is that if Bryan and I really want to see Nicolas make it home, the DEEYA program will help us with that no matter what the circumstances are.
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| Taekwondo class yesterday at noon. I am in the black shirt/white pants. Happy that it isn't a profile shot!!! |
I don't think there is ever a dull moment in our house. This week is busy with Jena's taekwondo belt graduation on Friday evening, Christmas Village for the school on Saturday morning and the Peppermint Twist gymnastics meet Saturday afternoon. AND Bryan has class on Saturday. It's all good. I love watching the girls compete although I am sad that Noelle is not quite ready yet because of her back injury. She is working hard to be ready for January. The team photos turned out great. So proud of my two ladies!!!
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