Well after much waiting we finally got the shunt placed, though not without lots of anxiety. We went in yesterday (Tuesday morning) thinking we were going to have it put in then. However, baby Caleb was in the absolute worst positioning, even after hours of trying to get him to move, the doctor did not want to risk injuring other parts to get to his chest wall, which I completely agreed with. So we went in again this morning and low and behold he was in the perfect spot. Honestly, I had prepared myself to go to work this morning thinking he wouldn't be in the right position again, so I was taken a bit off guard. I had to get prepped for the operating room, get an IV placed, etc to decrease the risk of infection and other things. Caleb was very active this morning before we went to the OR and every time I felt him move I would feel like I was about to start crying. I just feel so bad to be putting my 1 pound baby through such a traumatic experience. Ryan saw me off and as they were wheeling me to the OR I was crying uncontrollably. I have had surgery before but it is a completely different experience knowing it is being done on your child and even more weird when that child is in your belly. I was so scared of all the dreaded "complications" they discussed with this procedure. I got to the OR and the anesthesiologist gave me some medicine and suddenly I was relaxed and instead of crying said the "Our Father" over and over again until it was over.
The pain of the procedure was nothing for me. Unfortunately, the first attempt of putting the shunt in did not work. Apparently they have to "pigtail" the catheter on each side once they get it in so it doesn't come out and this part of the procedure didn't work the first time. This may or may not have to be removed after Caleb is born, depending on where it ends up. They then attempted to put in another shunt, this time with success and great positioning. We will not know for a while whether the shunt is actually doing any good or not. My next appointment isn't until Tuesday next week so a whole lot more waiting. In the meantime, as they put a large needle into the amniotic sac, I am at risk of preterm rupture of membranes, probably for about the next five days or so, so will be taking it easy and was advised to not travel or do any heavy lifting. Our doctor said the reason they are not seeing me earlier is there is nothing they would do in the meantime to intervene at this point. Starting week 23/24 is when the plan kind of changes as Caleb would technically be big enough to potentially survive outside the womb. After they put the shunt in Caleb was doing well and has been very active since.
Thank you everyone for all the well wishes, texts, messages, prayers, and phone calls letting us know you are pulling for our little man.
Love,
Ryan and Raquel
I also want to give a big shout out to my little sister Peyton who is graduating from high school this weekend. We are devastated we cannot make it there to celebrate all your amazing accomplishments with you. We are so very proud of you and love you to pieces. Congratulations, my sweet Peyton.
Prayer requests:
1) The shunt works and Caleb keeps growing strong
2) No other complications happen (water breaking, infection, etc)
3) Ryan and I can relax this weekend and reflect on the past three weeks
Wednesday, May 28, 2014
Tuesday, May 20, 2014
Caleb James
If you are reading this for the first time, you may want to start at the beginning.
We have decided on baby boy Jahnke #2's name, Caleb James. This time we didn't have a list of 20 names to go through. We saw the name Caleb and learned it's meaning and we knew it was the one. In the bible, Caleb was one of the ones chosen by God to spy on the promised land, and he was forever faithful. No matter what obstacles or "giants" he faced, he wholeheartedly followed God. He followed God for 40 years before God "gave him the mountain". The name spoke to us as we have to wholeheartedly put our faith in God at such a difficult and scary point in our lives, for our family and our unborn baby boy's sake. We have to have faith that our precious Caleb is in the hands of the Lord and that He will not leave us. If anyone has a better knowledge of Caleb, please share, I'd love to hear it. James is in honor of both of my grandfathers, who I admire, respect, and love dearly.
Another good 3D image of baby Caleb's face, he is so cute!
Our appointment on Monday went as it had before. The fluid has fully re-accumulated to what it was in the beginning, with no signs of hydrops (heart failure) or other problems. Caleb is so active he had actually flipped himself from head down to breech in a matter of four days! Our doctor discussed with us that we are at a very sensitive time point right now. Essentially we want to have the shunt placed two weeks before hydrops develops (if it ever does), which is unpredictable. He decided to hold off on draining the fluid again as Caleb is doing well otherwise and to reduce the amount of times they have to put needles into the amniotic sac (risk of infection and preterm labor). He is worried about doing the procedure at this point in my pregnancy because if there were complications, though only a 2% risk, there is nothing they could do to save the baby. If we waited a few more weeks, we would have more options if things go awry but we also don't want to risk developing hydrops before then. Our doctor is planning to consult with the expert on this disease via Skype who is in Denver to discuss my case and get his ideas on the next steps. I have told Ryan, I do not want to be a doctor in this situation. The only perk is I feel like I understand what is going on. Whatever decision they make we have to trust they are making it in Caleb and my best interest. I just don't want this decision burden on Ryan and I. We have a great respect already for our doctor and trust the decisions he makes. Tentatively, we are scheduled to have the shunt placed on Monday morning, depending on what this doctor in Denver thinks. They will place a needle into the amniotic sac and "thread" the catheter through and place it in the side of the baby's chest with the hope that the fluid will go into the amniotic fluid instead (thoracoamniotic shunt). I will be sedated for the procedure which I am actually glad, it's way too scary to watch the whole thing.
You may be wondering, how are we doing? We are generally more somber but are trying to keep our normalcy for Jonah's sake. We have had a few moments full of sadness and fear, but I don't think it would be normal if we didn't. We just love Caleb so much already and want him to be healthy and not suffer and it's difficult knowing that it may not end up that way. In the end, thinking about all the "what if's" and buts doesn't do any of us any good. Regardless of the statistics, we have to have hope that things will be OK and trust in God, there is no other way for us.
I also want to wish Ryan a very happy 30th birthday. I feel bad that this momentous time was not as special as it should have been because of what has been going on. However, Ryan is a wonderful man and was not bothered by this at all (he went to bed at 8:30 the last night of his 20's, I don't think he was too concerned). All he wanted for his birthday was to spend it with Jonah and me relaxing with a steak dinner on the grill. I can definitely handle that. We are also going to Branson this weekend to celebrate which we have had planned for several months. We figure since there's nothing we can do to change the circumstances or do from home, we may as well get away. Ryan's parents are joining us so we are really looking forward to spending time with them.
We wish everyone a happy and blessed Memorial Day.
With love,
Ryan and Raquel
Prayer requests:
1) That we can wholeheartedly trust in God during this time as a family
2) Baby Caleb continues to thrive
3) If we have the shunt placed, that the procedure goes well without complications
We have decided on baby boy Jahnke #2's name, Caleb James. This time we didn't have a list of 20 names to go through. We saw the name Caleb and learned it's meaning and we knew it was the one. In the bible, Caleb was one of the ones chosen by God to spy on the promised land, and he was forever faithful. No matter what obstacles or "giants" he faced, he wholeheartedly followed God. He followed God for 40 years before God "gave him the mountain". The name spoke to us as we have to wholeheartedly put our faith in God at such a difficult and scary point in our lives, for our family and our unborn baby boy's sake. We have to have faith that our precious Caleb is in the hands of the Lord and that He will not leave us. If anyone has a better knowledge of Caleb, please share, I'd love to hear it. James is in honor of both of my grandfathers, who I admire, respect, and love dearly.
Our appointment on Monday went as it had before. The fluid has fully re-accumulated to what it was in the beginning, with no signs of hydrops (heart failure) or other problems. Caleb is so active he had actually flipped himself from head down to breech in a matter of four days! Our doctor discussed with us that we are at a very sensitive time point right now. Essentially we want to have the shunt placed two weeks before hydrops develops (if it ever does), which is unpredictable. He decided to hold off on draining the fluid again as Caleb is doing well otherwise and to reduce the amount of times they have to put needles into the amniotic sac (risk of infection and preterm labor). He is worried about doing the procedure at this point in my pregnancy because if there were complications, though only a 2% risk, there is nothing they could do to save the baby. If we waited a few more weeks, we would have more options if things go awry but we also don't want to risk developing hydrops before then. Our doctor is planning to consult with the expert on this disease via Skype who is in Denver to discuss my case and get his ideas on the next steps. I have told Ryan, I do not want to be a doctor in this situation. The only perk is I feel like I understand what is going on. Whatever decision they make we have to trust they are making it in Caleb and my best interest. I just don't want this decision burden on Ryan and I. We have a great respect already for our doctor and trust the decisions he makes. Tentatively, we are scheduled to have the shunt placed on Monday morning, depending on what this doctor in Denver thinks. They will place a needle into the amniotic sac and "thread" the catheter through and place it in the side of the baby's chest with the hope that the fluid will go into the amniotic fluid instead (thoracoamniotic shunt). I will be sedated for the procedure which I am actually glad, it's way too scary to watch the whole thing.
You may be wondering, how are we doing? We are generally more somber but are trying to keep our normalcy for Jonah's sake. We have had a few moments full of sadness and fear, but I don't think it would be normal if we didn't. We just love Caleb so much already and want him to be healthy and not suffer and it's difficult knowing that it may not end up that way. In the end, thinking about all the "what if's" and buts doesn't do any of us any good. Regardless of the statistics, we have to have hope that things will be OK and trust in God, there is no other way for us.
I also want to wish Ryan a very happy 30th birthday. I feel bad that this momentous time was not as special as it should have been because of what has been going on. However, Ryan is a wonderful man and was not bothered by this at all (he went to bed at 8:30 the last night of his 20's, I don't think he was too concerned). All he wanted for his birthday was to spend it with Jonah and me relaxing with a steak dinner on the grill. I can definitely handle that. We are also going to Branson this weekend to celebrate which we have had planned for several months. We figure since there's nothing we can do to change the circumstances or do from home, we may as well get away. Ryan's parents are joining us so we are really looking forward to spending time with them.
We wish everyone a happy and blessed Memorial Day.
With love,
Ryan and Raquel
Prayer requests:
1) That we can wholeheartedly trust in God during this time as a family
2) Baby Caleb continues to thrive
3) If we have the shunt placed, that the procedure goes well without complications
Wednesday, May 14, 2014
Quick update
We just wanted to post a quick update of the appointment today.
Fetal echocardiogram: The baby's heart is anatomically normal and has strong cardiac output meaning it is not showing signs of heart failure at this point, praise the Lord!
Follow up appointment with the maternal fetal medicine (MFM) doctor: The fluid has returned, almost completely to what it was prior to the thoracentesis. :( We were hopeful that the fluid wouldn't re-accumulate so fast but were prepared to hear these results. For some good news, the baby's chromosomes look normal, no viral infection was found, and the fluid building up is for sure lymphatic fluid (chyle); all of which are good things.
Again, what do we do now? The MFM doctor wants us to try the thoracentesis again next Monday as in some cases the fluid will not re-accumulate after the second try. The reason we did not do it today was to give baby boy some time to recover from having the procedure on Monday. He said that having that pressure/fluid shift in such a rapid amount of time can put strain on someone and best give him time to recover before we put him through that again. One thing he mentioned about looking ahead is if the fluid re-accumulates after the second procedure we may have to consider moving to putting in a shunt. However, he is cautious to rush attempting this procedure given the fact that baby boy has one perfectly healthy lung and though his heart is pushed to the side, it is functioning very well. The shunt will fall/come out or even get pulled out by the baby 30% of the time so often this has to be repeated as well. Currently I am only 20/21 weeks along. The doctor said if anything were to progress or get worse prior to 28 weeks there is not much they could do aside from placing a shunt, so we are in for a very long 7 weeks. Please pray our little boy continues to stay strong and active over this time.
We are thankful that our baby boy has stayed healthy up until this point. We even got to see him sucking on his hand during the ultrasound. Though I would prefer it the other way, it is nice to see him on a regular basis; it's almost like he knows we are looking at him and is communicating back to us. So far he is not very photogenic, though.
Sorry again if we did not call all of you personally. Ryan and I have found we have spent so much time calling and explaining all of this to everyone else that we have barely had any time (the two of us) to sit down and discuss it ourselves. We are trying to stay patient with each other and keep peace around the house for Jonah's sake.
Again, we will update as things happen.
Sincerely,
Ryan and Raquel
Fetal echocardiogram: The baby's heart is anatomically normal and has strong cardiac output meaning it is not showing signs of heart failure at this point, praise the Lord!
Follow up appointment with the maternal fetal medicine (MFM) doctor: The fluid has returned, almost completely to what it was prior to the thoracentesis. :( We were hopeful that the fluid wouldn't re-accumulate so fast but were prepared to hear these results. For some good news, the baby's chromosomes look normal, no viral infection was found, and the fluid building up is for sure lymphatic fluid (chyle); all of which are good things.
Again, what do we do now? The MFM doctor wants us to try the thoracentesis again next Monday as in some cases the fluid will not re-accumulate after the second try. The reason we did not do it today was to give baby boy some time to recover from having the procedure on Monday. He said that having that pressure/fluid shift in such a rapid amount of time can put strain on someone and best give him time to recover before we put him through that again. One thing he mentioned about looking ahead is if the fluid re-accumulates after the second procedure we may have to consider moving to putting in a shunt. However, he is cautious to rush attempting this procedure given the fact that baby boy has one perfectly healthy lung and though his heart is pushed to the side, it is functioning very well. The shunt will fall/come out or even get pulled out by the baby 30% of the time so often this has to be repeated as well. Currently I am only 20/21 weeks along. The doctor said if anything were to progress or get worse prior to 28 weeks there is not much they could do aside from placing a shunt, so we are in for a very long 7 weeks. Please pray our little boy continues to stay strong and active over this time.
We are thankful that our baby boy has stayed healthy up until this point. We even got to see him sucking on his hand during the ultrasound. Though I would prefer it the other way, it is nice to see him on a regular basis; it's almost like he knows we are looking at him and is communicating back to us. So far he is not very photogenic, though.
Sorry again if we did not call all of you personally. Ryan and I have found we have spent so much time calling and explaining all of this to everyone else that we have barely had any time (the two of us) to sit down and discuss it ourselves. We are trying to stay patient with each other and keep peace around the house for Jonah's sake.
Again, we will update as things happen.
Sincerely,
Ryan and Raquel
Monday, May 12, 2014
Good thoracentesis results
We went in for our second consultation with a perinatologist at the Children's hospital today. Overall, the vibe Ryan and I felt with this doctor was a complete difference from the last one. Even though I am a physician myself, I do not want to be talked to as a physician, but a mother. The doctor today talked to Ryan and I about our baby, not "the fetus", he held my hand and told us he was going to do everything in his power to help our baby, and he did not sugar coat the facts and risks. Plus, he threw in some much needed and appropriate humor from time to time which in my book can never be a bad thing. He explained in further detail that pleural effusions in the neonate can either be primary or secondary, with primary causes having a much better prognosis. Right now all signs are pointing to the fact that this is a primary cause; however, in order to rule out the other entities (infection, genetic disorder, etc), testing has to be done. The doctor today felt that the thoracentesis (drawing fluid off the chest) was not an emergent procedure, but that it did need to be done fairly soon. So we decided today was as good as any. I was so scared going into the procedure thinking of all the things that could go wrong, but more scared of what could happen if we don't do anything.
Ryan decided that he did not want to be present during the procedure as he has a bit of a needle phobia and did not want the concern to be on him during such a delicate procedure. Luckily, I was able to have Savannah there with me holding my hand the entire time. As happy as I am that baby boy is very active, it made it a bit difficult to stick the needle into his chest in the right spot when he is just under one pound which made mommy so nervous she had to close her eyes. However, the doctor was able to get the needle in and drew off around 20 mL of fluid from the baby's chest (which is quite a bit in such a small baby). When they were done the ultrasound technician quickly went to image his heart and it was beating strongly and I broke down in tears (so did Savannah). The heart had immediately shifted back to a more normal position (not completely but much better) and the lung inflated. Though they were not able to get all of the fluid off it was much improved. Medicine is so amazing. The doctor said that poor baby boy was a bit shocked right away but went right back to his normal activities immediately after.
So what's next? We are getting a fetal echocardiogram (imaging of the baby's heart by a pediatric cardiologist) to completely rule out heart abnormalities on Wednesday as well as a follow up ultrasound to see if the fluid is re-accumulating, decreasing, or staying the same. While the doctor was doing the procedure he also pulled off some amniotic fluid to do chromosome and viral testing on so we should have those preliminary results as well.
Overall, today I am relieved. I realized too how important it is to me that this baby growing in my belly be considered my baby, because he is and always will be. Seeing his little fingers and toes and face makes me love him even more. I am so thankful he is strong (80th percentile in size). I am most thankful and overwhelmed by all the support we have received from everyone.
Thank you Mom and Savannah for being here the past few days and helping take care of Jonah and everything around the house. It has been a very peaceful and thoughtful time and I love you both so much. We are just sad you have to leave tomorrow.
Love,
Ryan and Raquel
Here is a 3D picture the ultrasound tech took of the baby for us. You can see his face and ears and his hand is covering his mouth.
Prayer requests:
1) The fluid accumulation in the chest decreases further or stays the same by the next appointment
2) No heart or chromosome abnormalities are detected
Prayer requests:
1) The fluid accumulation in the chest decreases further or stays the same by the next appointment
2) No heart or chromosome abnormalities are detected
Saturday, May 10, 2014
Baby Jahnke #2
This Wednesday at my 20 week routine ultrasound and appointment Ryan and I learned we were having another precious baby boy. We are so excited that Jonah is going to have a little brother. Jonah had told us that from the beginning, guess he knew something we didn't. About 40 minutes later my OB (who has never been late to an appointment) came into the exam room shaking and said, "I'm so sorry to tell you this, but something is very wrong with your baby." She began to explain that he has a large pleural effusion (fluid around the lung space) that has collapsed his lung and displaced his heart so much they couldn't even get a good image of the heart anatomy. She referred us to a perinatology appointment for the next morning who confirmed the same thing my OB told us the day before. They were able to image the heart that they believe looked completely normal. They did note a small mitral valve abnormality, but thought it may be because of the pressure on the heart and not a true defect. The doctor believes that because everything else looks healthy that this is not due to a genetic/chromosomal disorder but probably due to a maldevelopment of the thoracic duct causing chyle (lymph fluid) to leak and accumulate in the lung space, though we can't be 100% sure (and may never be). Some good news is that the effusion is isolated to only one lung and he has not developed hydrops (fluid around other portions of the body), both of these things increase mortality significantly. Some bad things are that I'm so early in my pregnancy that he couldn't survive outside the womb, he could develop hydrops if we don't intervene soon, and the effusion is so large it is displacing the heart and could cause him to go into heart failure. What does all this mean? The perinatologist told us to hope for the best but prepare for the worst. The statistics? Babies diagnosed with this condition prior to 32 weeks have a 40-45% survival rate. If treated, the chances can increase but the treatments aren't without their own risk. This is a rare condition with only 1 in 10,000 to 15,000 babies diagnosed per year. In my mind this means not many physicians are familiar with the best way of treating it.
The next steps? We are getting a second opinion from another perinatologist at the large children's hospital in Kansas City on Monday morning. We believe we will have to have a procedure (intrauterine thoracentesis) to remove the fluid within the next week to allow baby's lungs to develop and prevent heart failure/hydrops, it's more of a matter who will be doing the procedure and when. The problem is 90% of the time, the fluid re-accumulates within days after this procedure. If this is the case we may have to consider placing a shunt in the chest that will remain there through the remainder to the pregnancy, but this is a more high risk procedure.
It took me a while to process what was going on, I'm still not sure if I've processed it yet. Though I knew going into the appointment there was a chance of bad news, nothing can ever prepare you to hear it. We are just so scared for our precious baby boy. Right now he is getting oxygen from me, so this is not bothering him whatsoever, which is a comfort. However, if that lung does not develop there could be severe consequences once he is born. Baby boy is very active at this point which his mommy is very thankful for! I appreciate the support of everyone. If we have not told you in person, it's not that we don't want to talk about it or for you to know. It is simply too difficult to talk about over and over again. We will keep you updated on the appointment on Monday.
Above is the sonogram of our precious baby boy. We think he looks a lot like Jonah already. The large black space to the left of the picture is the effusion (fluid) around the lung and white ball at the top is his poor little collapsed lung. We are working on his name and may share once we decide. Below is a picture of our sweet little Jonah. Thank God for him. I think he has picked up on the sadness through the house as he has been very polite and is giving extra long hugs.
Prayer requests:
1) At the appointment on Monday they do not find any further fluid accumulations or hydrops.
2) We can determine the best course of action and get the procedure done as soon as possible.
With love,
Ryan and Raquel
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