Tuesday, January 29, 2013

No news is good news....

Yesterday we had our weekly check up to monitor Bennett's dopplers. It went well. Everything is still the same and at this point, no news is good news in our situation. The results of the other test should come back late this week and they will call us with the results. Please be in prayer.

We also had a meeting and a tour of the NICU. Of course the wonderful neonatalist we met with had to give us statistics if Bennett was to be born right now with his growth restrictions. She went over what it will look like in the operating room. Right when Bennett is removed they will wrap him in plastic (because he will be so little and they need to keep him warm, his little head will be out) then they will rush him to the next room (cant remember the technical term...pregnancy brain) to look over him and start setting him up with all the tools he will need for breathing, all during this time I will be finishing up with my surgery and I won't get to see my baby. :( my husband will be able to take pictures and bring them back to show me but mothers out there can understand how hard of a journey this will be. The next 3 days of his life will be most crucial and he will have little hands on care (maybe 2x a day) because that is the timeframe they are ensuring no bleeding in his brain. It is unknown at this point when we will get to hold him and when he will be stable enough. We have to take his case when it comes. She also told Chari and I to take the statistics with a grain of salt because they do the studies based on a whole bunch of NICU babies within an area and we aren't talking about a whole lot of babies, We are speaking of Bennett and his case. She told us NICU babies are fighters and very strong even given their size. So again at this point, it's a waiting game and another unknown. :)

Next Monday my sister will be accompanying me to my appointments as my husand is flying out to PA again for work. I am excited to have her with me during this process to see what all this entails each week. They can only measure Bennett every other week so next week we will see how much he has grown, check his dopplers again, have a echo to check on his heart and possibly more testing depending on the results.

We can't thank everyone enough for their prayers and support. We have an amazing support system of family and church family helping step up with our older children and we just ask everyone to please be in prayer over Bennett. We are praying for growth and health over him.
Please also pray for strength for my husband and I. If anyone has experienced this type of situation then you can understand what we are going through, if you haven't, just know that it's exhausting on every level. It's difficult as a mother to have two full term babies and then with your last to have these complications and the unknowns. We keep our faith and trust in god which is how we have managed over these last few weeks that feel like years. God is a man of miracles!! The doctors can say what they have to say because their education has taught them to but we know that our God is in control, and his word is the last word.

Blessings over all of you!

Thursday, January 24, 2013

In God We Trust....

Yesterday we went to OHSU to have our 2 week ultrasound and follow up from our last meeting with the Doctor.

We had our ultrasound and then right after were able to have our meeting with the Dr. to discuss the results on the amnio and how Bennett is doing

He told us that Bennett is still not growing as much as they have hoped. He is about 15 ounces (just under a pound and the 500 gram mark). He went on to tell me the positives of today's follow up were... Bennett's Cord Doppler's are great and better than before, I have more amniotic fluid then I did before, The Ventricles in his brain are NORMAL now (they went from 10mm on both sides to almost 7 on one side and almost 8 on the other and this news of the ventricles is AMAZING), and his heartbeat is strong (we wont know the progress of his heart until 2/6/13 echo scheduled). He also mentioned that the amnio tests came back NORMAL but they are going to run one more in depth test on the remaining fluid to see if that shows anything. He ruled out placenta difficulties Becuase those would normally show up on the amnio but they will test the placenta under a microscope when he is born to try and get answers but overall the doctor is happy with today's results but still concerned to why Bennett is not growing. He said our case is still a "mystery" which i heard from 2 ultrasound techs as well.

We made a plan to be seen every week now to monitor his cord Doppler. Dr mentioned that there is a chance that we could come back next week and Bennett has died but he doesn't feel that will happen because death would be progressive and not overnight. (i.e if his Doppler's were low yesterday they would have admitted me into the hospital and monitored him). He discussed that as long as his Doppler's are normal every week then we need to keep Bennett in there as long as possible and not worry about an intervention until that changes. He still asked us if based on the information we wanted to do a c-section now and I felt it was not a good idea based on his weight. If he is thriving in my womb even if his growth isn't what we expect, we need to keep him in there safe.  More so I believe the lord has more miracles to show these staff.

We are overall happy and thankful for these amazing results. The Genetic Counselor shared how she is always amazed at how a Doctor can give some straightforward advice and how a family will choose against it regardless and then have miracles happen with in weeks. She is amazed. I simply told her we are thankful and expressed that Bennett is not my own, I do NOT get to make the choice to end his life. If its Gods will to have Bennett, that will be a decision that God alone will make not Chari or I or any Doctor. She smiled and said "okay".

So we will be moving forward and just asking your continued prayers over our Bennett and all the staff. I pray these results come back negative as well and that Bennett's case will remain to be a mystery because we all know God works in mysterious ways. We also pray for Bennett to GROW. We are praying and believing that by next appointment he has grown LEAPS and continues to amaze us!

We are so grateful for all your prayers and thoughts and will continue to need them. When Bennett is born he will spend a long time in the NICU and at this time, still has his heart condition but we are praying for miracles there too! God is Good and faithful if we put our trust in him. This is still a faith walk but one that we are more than happy to walk knowing that God will use this journey to further his kingdom and what more can we ask for? Of course my flesh has moments of being sad and mad (and I do mean moments). But I am NOT mad at God. How can I be mad at the man who gave me everything, gave me life?

This may not be the same situation that you may go through in your lifetime, but we all go through our rough times (big or small) and I urge you to put FULL trust in God. Remembering that we serve an AMAZING AND FAITHFUL father that loves us all unconditionally and wants nothing more than for you to rely on him in every aspect of your life! It WILL NOT be easy but he said it would be WORTH it!

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

Abundant Blessings,

The Puente Family

Wednesday, January 16, 2013

Surprise Visit to OHSU....

I wanted to start off by letting everyone know that we still don't know the results of the amnio. We have an appointment with OHSU again on Monday where an ultrasound will be done to check on Bennett and his growth. At that time we will hopefully have a more definite plan of what will take place.

Last night I was taken to OHSU to be checked due to bleeding and they needed to ensure that my water hadn't broken and if it wasn't, get to the bottom of my bleeding. They brought in a smaller ultrasound machine to make sure he was still alive, thank the lord he was. His heart was active and so was he. Small leaps. They did an exam, and ran some blood tests and the Dr. on call felt that my water hadn't broken but he wanted to order a formal ultrasound to understand the bleeding. The ultrasound revealed that I have a hemorrhage in the placenta. He said that he doesn't feel the hemorrhage is a concern and the blood doesn't irritate the baby, which was good news. However he felt that I needed to be put on bed rest until my appt due the many other concerns they have with Bennett and they will re-evaluate on Monday.

There were a lot of questions asked and more answers. He expressed again that it is most important for them to get the full results of the amnio back to see what they are dealing with.  If the Amnio comes back negative for any viral or Chromosome abnormalities, they will run a more in depth test for other gene or more chromosome abnormalities. The first stage of tests on the fluid is to rule out the major viral infections or chromosome abnormalities. But at this point that is all a waiting game.

He and the Neonatologist also talked about the importance of Bennett growing and staying as long as he can inside. The longer he is inside, the more chance of survival. If they were to take him out anytime before he was 500 grams, he probably wouldn't survive due to the other medical complications that he is having and resuscitation would be more damaging to his little body as well.  A baby born early, at a normal weight for their gestational age would likely be fine. But the odds are really stacked against Bennett at this point and its a rough stage for us to be in. My husband had to fly out on business and cant be here with us right now which i know must be hard for him but we have family and friends surrounding us with help for our two older children.

The Dr. also mentioned that he doesn't expect me to last longer than 30 weeks which means 3 weeks from Friday, we will most likely be looking at his delivery. It will have to be a c-section because the baby doesn't need any addition strain to his body and will be very fragile when delivered. I have had 2 quick and successful vaginal deliveries up to this point so I am very nervous about a c-section but more importantly my son. The Dr. also talked about steroids 2 days before delivery to mature his lungs but if he is not above 500 grams, they wont discuss those options. there is also a large chance that I will be admitted to the hospital to continue to monitor Bennett and how he is growing in the last weeks of pregnancy to see how well he is thriving inside. Its a scary time right now realizing that my son could be here in a matter of weeks and that his survival is all in how much he grows over those weeks and there is nothing that I can do to help him, only the lord can do it.

It was a relieving evening to see him moving and heart beating but it also brought a lot of more unknowns about our son and if he will survive this with all the odds against him. We are still firmly believing in miracles for our son and trusting the lords will for our Bennett. We don't get to know what the lords will is at this point but can rest in knowing that he cares so much for us and our son. We ask for your continued prayers. That Bennett will stay in there as LONG as possible and grow grow grow. We also want prayers for the doctors and specialists that we are working with, for wisdom and insight.

I cant thank you all enough for your prayers and support. Blessings upon you all.


Friday, January 11, 2013

Long day & it's results....

I decided to start a blog to document our journey with our sweet boy, I know there are many that want to know details of what is going on and I feel this is the best way to explain our journey thus far.

I had a routine ultrasound done to find the gender and at that appointment the tech mentioned that his heart was to small to get all the pictures they need done so I needed to return in 4 weeks for a completion.

We returned in the 4 weeks and completed the ultrasound. I had a feeling in my heart that something was wrong, I couldn't explain it. I just knew.

The weekend came and we received no call from our midwives and we were getting anxious. I received a call after the weekend while i was napping and by the time i saw it the office was closed. I couldn't sleep all that night because after the voicemail, I could tell something wasn't right. I called them first thing the next morning and spoke with the midwife who informed me that everything looked OK but there were a few concerns. He was smaller than they expected him to be and there were some concerns about his heart. She told me they were sending us to a specialist to have further testing and get some more definite answers.

OHSU called us later that week and set up the appointment for 1/9/13 where we would have an echo cardiogram, ultrasound and meeting with the doctor in the late afternoon.

Wednesday arrived all to soon and we left the house quite early that morning to make it in time for our 9am echo. We arrived and had that echo done. Directly after that appointment we met with the Dr. who came in and explained what she found. She first went over with us what a "normal heart" looks like and how it flows, she then unfolded the piece of paper to then show us how our son's heart was working. She explained he had a mild aortic stenosis which in short means that his pulmonary artery was measuring small/narrow but unlike other infants with this problem, his heart chambers measured OK. She gave us a helpful analogy explaining if a large amount of people were in a small room and the fire alarm went off but we all needed to escape from the same door but the door would only open half way, in essence making it more difficult to get through. Same concept, his heart is working hard to pump the blood through the valve. She explained that she would like to monitor his heart more closely and see us in 4 weeks to look at the stenosis and see if it is worsening or staying the same. She mentioned surgery is a definite possibility but she just doesn't know at this point. We felt a relief that it was a mild condition but were still concerned about his size.

We headed over for the ultrasound, had that done, (we didn't get any answers from that test because we would have a meeting with the doctor after we had a lunch break), We then went to eat some lunch and both found it hard to eat. The spirit was heavy and overwhelming and we just wanted to get the meeting over with.

After lunch came our appointment with the Dr. We sat down with the perinatlolgist and a genetic counselor. He went over the echo again and then moved on to explain the findings in the ultrasound. He told us they found that he was measuring 3 weeks behind (he is only 12 ounces) and he should be over a pound, close to a pound and a half. He also explained that the US revealed a mild ventriculomegaly-Lateral ventricles in his brain are enlarged. He went on to say that the combination of the 3 issues they saw (heart, brain and overall size) that he feels that our son could have contracted a viral infection in the first trimester that would be causing his growth to stop, or a chromosome abnormality. He explained the viral infection, depending on the many he could have contracted are most of the time extremely lethal to an infant born with them (He mentioned a few, CMV or Herpes). In the same note, a chromosome abnormality of and extra 13, 18 or 21 could be lethal as well but they cant give us more information until they know what they are dealing with.

The Dr. explained our options, we could continue with the pregnancy with further testing every 2 weeks to check on the above issues as well as our son's growth. If we did continue the pregnancy, he highly recommended we have testing. An amniocentesis that day or blood testing. The benefits of An Amnio (being a diagnostic test) are highly recommended because it pinpoints the above issues. A blood test is not as accurate. He also gave us the option of terminating the pregnancy up to 25 weeks gestation.

He expressed that the findings they reviewed are not looking well at all and we need to make the decision and their would be no judgement either route we decided to take. Another worry of the Dr. that was made aware is even if we continue the pregnancy, there was a good chance he would not survive based on his growth. He gave us some time to talk and decide and left the room.

We couldn't believe in a million years what we were about the sit down and listen to. We cried, prayed and made our decision to have the amniocentesis. I also felt the word of the Lord strong in my heart asking me over "how far are you willing to go to trust me?". Termination of the pregnancy was not an option for either of us and we both understood that the lord gave us this blessing and we needed to see our way through this even if this meant a tough road ahead. As we continued crying & praying, (it had been raining, stormy and cloudy ALL DAY), all of a sudden the clouds opened up and the entire sun was shining what seemed to be just in the room where we were at. We couldn't believe it. It didn't matter what anyone else thought. That was our confirmation from God, the presence in the time that we needed him the most, his spirit in the room with us. I prayed that the lord use us in this opportunity, to be examples of his love and glory to EVERY person we work with in this process. That they will see miracles happen.

The Dr. came back in to ask us our decision and I told him that we will continue with the pregnancy and the amniocentesis (there is a 1-200 risk of a miscarriage with this procedure). We decided the small risk i was willing to take was worth the understanding of his medical condition better and to prepare. I explained to the Dr. that our god is BIGGER then all of these findings and we will continue to trust the process and whatever God's will is for our son. They completely respected our decision and explained that we would be seen again in 2 weeks for another US to see where our son is at and we can continue to make plans as we go down the road based on the findings.

I was taken back for the Amnio and prepped, the procedure was done and we will wait to hear results back in 7-10 days.

It had been a long and emotional day for us but we felt at peace with our decisions. We decided the next day that we better come up with the perfect name for our son. We had both liked the name Bennett prior to all these findings, but we knew it was meant to be when we decided to look up what it meant and beside his name the meaning "little blessed one".

You may ask how are you feeling? and all i can tell you is I have an overwhelming amount of peace and calmness over our situation. The unknown is always scary but we will continue praying, trusting, and believing in miracles and we ask for your continued prayers and we go through this journey with our sweet Bennett. He IS OUR sweet blessing, an innocent and perfect gift from our God, and we are so in awe that God has chose us to be his parents. Grateful doesn't begin to describe.