So yesterday while at work I got a call about a reminder appt. for today. (we hadn't scheduled one so I was thoroughly confused). We obediently and very quickly scheduled our child care to make our 930am, 11am and 2pm appointments. (Thank you to a flexible work schedule and one AMAZING AUNTIE who just happened to be laid off right before we found out about Bennett and has been at our house for pretty much EVERY appointment to watch our girls! Who knows what we would do without her!)
We arrived this AM for an ultrasound, fetal monitoring and a meeting with Dr. Shaffer.
During the US we got to see our sweet Bennett moving around AND most importantly PRACTICE BREATHING! :) We were happy to see this as you can see! The tech mentioned that he did all the things that they wanted him to do at this appointment which essentially meant that his heart rate was great, he was breathing, he was wiggling everywhere, fluid was better, AND his Doppler's remained great.
We then went to fetal monitoring, got all hooked up and sat and listened to Bennett's heart beat accelerate (which is GREAT) and then slow again, we heard him moving all over which is another plus. (This was suppose to be a 30 min session but were only hooked up for 10 or less) Then Dr. Shaffer and his right hand woman came to meet with us while in monitoring. He said that everything was looking MUCH better today. Bennett got an A+. Thank you Jesus!! I asked him why we were being monitored every few days and he explained that our case is rare, and with that, he wants to make sure hes taking all pre cautions to prepare if/when we need to plan an intervention. He mentioned his low weight gain is really concerning so they want to ensure that nothing happens to him (possible death) in a few days time. We agreed! I have another monitoring on Friday, another appt. on Monday and then continuous monitoring to follow. If at any point in the monitoring Bennett shows distress, Dr. Shaffer will have me admitted and they will start discussing delivery and ill be given steroids. Right now he is also only 650grams which is not good "statistically" for survival with his complications. So we continue to wait to see what Bennett is going to do. :)
Chari and I agree that this pregnancy is so much more difficult because with any "normal" pregnancy, like with our two children before, you see your Dr. monthly and for the most part are well aware of when you will deliver. Our pregnancy doesn't give us those comforts with his state at this time so we take it one day at a time and are thankful for every sec, min and day that Bennett is still with us! God has a plan for our lives like we have said so many times before. God is good and as always we will CONTINUALLY thank him even during our many 45 min trips to OHSU and the unknown of what will happen when we walk in the door! Its amazing what God will do for you when you turn your life over to him, knowing that he alone has laid out the path for your life and knowing that he thinks of us and cares what we are going through! Thank you God for the peace and strength you have given me and my husband! You amaze me!
Blessing to you all!!!
Wednesday, February 27, 2013
Tuesday, February 26, 2013
Still thankful...
Hi all, sorry it has been a few weeks but we took a break last week from appointments with the holiday.
We had our US yesterday and then our meeting with Dr. Shaffer. Bennett has only grown 2 oz in 2 weeks (weighing approx 1 lb 7 oz), his heart rate was lower (which happens so not a huge concern), his Doppler's looked good but he got a 6 out of 8 on his test because he was not preforming practice breathing. I mentioned to him that I felt less movement these last few weeks which is hard to differentiate between Bennett not doing well or just because there is less room for him to grow as we get farther along. Dr. Shaffer still felt that with the low weight gain over the two week period, less fetal movement and the low test score he felt it safe to get a stress-test done that day. He mentioned that worse case scenario is the test doesn't go well and he would hospitalize me and I would be induced. He didn't feel that to be the case but the doctors know little of the syndromes so they want to take all precautions which obviously we are grateful for.
We completed the stress test and all went well so were able to go home but Dr. Shaffer would like to preform another test this Friday.
Overall the appointment went well with exception to his surprising weight gain. We continue trusting the lord knowing that his will be done in our lives and our son's and will continue this journey with Gods grace, strength, and a smile on our face. We are thankful at all times!
We had our US yesterday and then our meeting with Dr. Shaffer. Bennett has only grown 2 oz in 2 weeks (weighing approx 1 lb 7 oz), his heart rate was lower (which happens so not a huge concern), his Doppler's looked good but he got a 6 out of 8 on his test because he was not preforming practice breathing. I mentioned to him that I felt less movement these last few weeks which is hard to differentiate between Bennett not doing well or just because there is less room for him to grow as we get farther along. Dr. Shaffer still felt that with the low weight gain over the two week period, less fetal movement and the low test score he felt it safe to get a stress-test done that day. He mentioned that worse case scenario is the test doesn't go well and he would hospitalize me and I would be induced. He didn't feel that to be the case but the doctors know little of the syndromes so they want to take all precautions which obviously we are grateful for.
We completed the stress test and all went well so were able to go home but Dr. Shaffer would like to preform another test this Friday.
Overall the appointment went well with exception to his surprising weight gain. We continue trusting the lord knowing that his will be done in our lives and our son's and will continue this journey with Gods grace, strength, and a smile on our face. We are thankful at all times!
Tuesday, February 12, 2013
6 ounces!
First off, a huge horray for the homecoming of my husband! :) after a week being away from home me and the girls were happy to have him back!!
Had our US first where it was revealed that bennett has grown 200 grams (6 ounces) since our last appt which is GREAT! :) small leaps. I also had some concerns of clef lip/palate and wanted the radiologist to check and she see if that is something they see. Based of this US and reviewing of last US they don't feel that is something he has which was a relief for me because I know how much more difficult things can become with that and bless the hearts of children and parents that do have that!
When we met with Dr. Shaffer and our Genetic Counselor we enjoyed our time. Lots of jokes and giggles which was wonderful for all of us. It was a Monday. Enough said! :)
He went over his weight growth and was very pleased. The dopplers were still great and fluid was great as well. So he feels given this information that we will see him again in 2 weeks.
Last week we had discussed a vaginal delivery so I wanted to express my worry about that. I told the Dr. my hesitations about going through with that due to the stress that could happen to Bennett during that time. I told him I'm leaning towards a c-section because as a mother, your selfless for your child and the thought of causing any stress to him and further complicating things for our son is disheartening. He eased my fears saying that going through with a vaginal is what he feels is best for me AND bennett. He stated that we have had 2 successful and quick labors and he feels that a vaginal delivery won't do any harm to Bennett but of course he had to give us that warning. He mentioned that at any sign of ANY stress we would talk about the c-section at that time but he is extremely hopeful that this experience will go just as the others. We will start monitoring contractions closely towards the last few weeks as OHSU is about 45 minutes away and he understands the stress of having to get there in "labor". I feel much better after discussing it but am also thankful that he will respect my wishes of a c-section if Bennett isn't tolerating the natural way if you will! :)
Chari and I also had our blood drawn to test which/if any of us is carrying the balanced translocation which will help better identify the 11p syndrome. If neither of us have the translocation then they will need to test the amniotic fluid taken but may run into issues with the cells being to old to test, if that happens, they will run tests on his cord blood after birth. We will wait for those results in a week or so.
We had a great appt and meeting as usual with all our doctors. God has still given us strength and overwhelming peace in our situation which we are grateful for. There are many unknowns still to come but we continue to Believe and trust in whatever the Lords will is for our son. He has done miracles already for our son as we see it and will continue to do so throughout his life. God is good and we will continue to praise and thank him in this storm!
Blessings and thank you all for your continued prayers and thoughts over our family. We are blessed with amazing support systems but more importantly with our God who never leaves nor forsakes us. How amazing is that!
You may not be able to tell but here is a picture of Bennett covering his face with his arms and hands not allowing the radiologist to get a look at his face! :) we found lots of humor in this! :)
Had our US first where it was revealed that bennett has grown 200 grams (6 ounces) since our last appt which is GREAT! :) small leaps. I also had some concerns of clef lip/palate and wanted the radiologist to check and she see if that is something they see. Based of this US and reviewing of last US they don't feel that is something he has which was a relief for me because I know how much more difficult things can become with that and bless the hearts of children and parents that do have that!
When we met with Dr. Shaffer and our Genetic Counselor we enjoyed our time. Lots of jokes and giggles which was wonderful for all of us. It was a Monday. Enough said! :)
He went over his weight growth and was very pleased. The dopplers were still great and fluid was great as well. So he feels given this information that we will see him again in 2 weeks.
Last week we had discussed a vaginal delivery so I wanted to express my worry about that. I told the Dr. my hesitations about going through with that due to the stress that could happen to Bennett during that time. I told him I'm leaning towards a c-section because as a mother, your selfless for your child and the thought of causing any stress to him and further complicating things for our son is disheartening. He eased my fears saying that going through with a vaginal is what he feels is best for me AND bennett. He stated that we have had 2 successful and quick labors and he feels that a vaginal delivery won't do any harm to Bennett but of course he had to give us that warning. He mentioned that at any sign of ANY stress we would talk about the c-section at that time but he is extremely hopeful that this experience will go just as the others. We will start monitoring contractions closely towards the last few weeks as OHSU is about 45 minutes away and he understands the stress of having to get there in "labor". I feel much better after discussing it but am also thankful that he will respect my wishes of a c-section if Bennett isn't tolerating the natural way if you will! :)
Chari and I also had our blood drawn to test which/if any of us is carrying the balanced translocation which will help better identify the 11p syndrome. If neither of us have the translocation then they will need to test the amniotic fluid taken but may run into issues with the cells being to old to test, if that happens, they will run tests on his cord blood after birth. We will wait for those results in a week or so.
We had a great appt and meeting as usual with all our doctors. God has still given us strength and overwhelming peace in our situation which we are grateful for. There are many unknowns still to come but we continue to Believe and trust in whatever the Lords will is for our son. He has done miracles already for our son as we see it and will continue to do so throughout his life. God is good and we will continue to praise and thank him in this storm!
Blessings and thank you all for your continued prayers and thoughts over our family. We are blessed with amazing support systems but more importantly with our God who never leaves nor forsakes us. How amazing is that!
You may not be able to tell but here is a picture of Bennett covering his face with his arms and hands not allowing the radiologist to get a look at his face! :) we found lots of humor in this! :)
Monday, February 4, 2013
Worth it all...
Where to start?
Our first appt today was for our routine weekly ultrasound which showed everything to be normal and doing good. His Doppler looked well, his ventricles still normal and he is already practicing breathing on his own which all are really great things. We will measure his growth next week.
The next appt up was for fetal echo which showed that he still has his aortic stenosis BUT it is still mild which is a big plus. The cardiologist went over that when kids have a mild stenosis is generally something they don't intervene with surgery and they continue to monitor it with age. We will be seen back in 6 weeks where 2 things could have happened. 1) his stenosis is the same which he feels is the more likely case or 2) the stenosis has gotten worse which would mean more monitoring to decide on surgery which would entail going into the heart with a valve and balloon, inflating the balloon into the value to open it up and then deflating it and pulling it back out. This is an unknown still at this point and will take additional monitoring.
We then had our meeting with the Dr. and the genetic counselor who received the results of the second mircoarray screening of the chromosomes. They have detected the reasons that have restricted his growth. Our son has two syndromes that involve two different chromosome abnormalities. 1) Is Wolf-Hirschhorn which is a partial deletion of the 4p chromosome and 2) Russell-Silver Syndrome which is a partial duplication of 11p chromosome. Both of the syndromes together explain his IUGR (inter uterine growth restrictions) as well as his congenital heart defect.
These syndromes can mean a lot for our son. They can include a list of things that they expect for him to have such as he will be small with low muscle tone, he may have seizure's (in what i have researched a 50/50 chance), he may have difficulty eating which would mean that he would need to have a feeding tube inserted into the side of his belly, he may have hearing loss, there may be cognitive disorder and he may look different.
All of the above things are something that the Dr's are expecting but they have only pulled 3 cases of people who have these syndromes together. Another big deciding factor is how the extra 11p chromosome will behave depending on if it was inherited by either me or my husband and we can choose to have further testing done which is something we haven't decided.
The Dr also mentioned that now that they know what they are dealing with they don't feel that pre-term labor is a concern and vaginal delivery is a possibility and I have my own hesitations to going through with that and something I need to be in prayer about.
We do not know yet how severe Bennett's case of these syndromes are as we know there are two different sides, mild and severe. We will have to take it when he arrives. We will still be having weekly visits to check his Doppler's and growth, also to plan more about labor.
First off, I had to smile again today at God because when the genetic counselor was starting to explain Bennett's condition, in the same room, and the same weather as our first appt when we received the news, The sun AGAIN came through the clouds and was shining down on my face. And I cant explain to you the relief one can feel in that moment. Its God's way of showing me that he cares for me, gives me peace, loves me and wants me to trust him.
Now to get to my emotions of all this. (My husband is out of town and thankfully my sister was able to attend for support and some healthy laughs) In all honesty, of course my flesh is emotional and somewhat fearful and you have all the Why questions BUT beyond that, I still feel an overwhelming sense of peace. I know that my God loves me unconditionally, loves Bennett more than I could ever know and has given us this sweet little piece of heaven. And to be completely honest and raw...I FEEL HUMBLED!!! Humbled that my God chose me and my husband to have this child, to love this child and walk this journey with him. With tears in my eyes I am thanking God.
This journey will not be easy but with positivity and belief in our hearts we know that our god is a God of miracles and we still believe that. We do not know how long Bennett will be with us but you better believe that every second of every day we will love this boy unconditionally, teach our girls to love him unconditionally and we will continue praising our God. Something that the enemy planned for evil will be for the Lords Glory, and God alone will receive all the honor. Our Bennett is already touching lives and I know my God has BIG PLANS for our boy!!! He is so special and we are so excited to have him apart of this family.
I continue to be thankful in knowing that the Lord never said it would be easy, but that IT WOULD BE WORTH IT. and my son is WORTH IT. He is worth every prayer, every tear, every fear.
We ask for your continued prayers in our journey and will update you always. Blessings upon your households.
The Puente Family xxx
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