Aortic stenosis what?

Here we are on Bennett's 2 week birthday. Him and all his 1lb 10.5oz glory! :) Yes yes, he has gained a whole ounce and a half since birth which is great considering his long journey with the PICC line and being poked and prodded daily. :)

This has been such a journey these last few weeks and months, but let me tell you, one I wouldn't take back. I have learned so much, built lifelong relationships and have gained so much empathy for other parents in my situation. I can walk past each pod in the NICU and smile at the other parents who I have never met because we are connected in a way that many will never understand. I can walk past these pods and pray heavily over these children's life, over their families and medical staff. I can talk and bond with mothers and offer my prayers and a listening ear to vent their fears, frustrations and experiences. And for all of this, just feel extremely honored, humbled and blessed.

Bennett is doing amazingly well. There wasn't much of a change lately but he is back on the high flow and seems to be doing a lot better breathing after the blood transfusion. (By the way that went well. I posted that on my facebook but always forget to put that here. sooo sorry)

Today I had my 2 week postpartum visit with the Dr. and all went well, incision healing nicely and they were surprised to hear I haven't taken pain meds since leaving the hospital (I just didn't see the point when my body was rejecting the medication anyway and not providing much relief). I am back to driving and will very slowly start to lift again. I am actually quite sad to be closing the chapter with the Fetal Therapy Program. All the staff have been so amazing and my husband and I will just down right miss them! Although, they wont get rid of us that easily. We send them updates and pictures often. :) We don't know how to thank them other than to continually pray over them in their professions, and over the people they encounter on a daily basis.

Ready for a SERIOUS SERIOUS praise report my friends????!!! ready? ok....

When visiting Bennett today and during kangaroo time, one of the neonatologist came bedside with me to discuss some news they received. She went on to tell me that the cardiologist preformed and echo today, the results revealed that his ductus has closed...AND THAT THERE HAS BEEN NO AFFECT OR NARROWING TO HIS AORTIC VALVE IN THE PROCESS!!!!! God is soooooooooo good to us. I just started thanking God and praising him with the Dr. right there!! This was such good news and I was just overwhelmed with happiness! I asked her if there was a chance that it could narrow over time and she told me that wouldn't be an issue, if the narrowing were to happen it would have already. She told me that the cardiologist are going to really back off at this point and preform an echo a month from now to still monitor his bicuspid valve but are overall extremely pleased with these results. They will no longer have to constantly monitor his blood pressures and can remove one of the pulse ox.

Ready for more great news....

She also mentioned that Bennett is almost up to full feeds and tolerating it well which means if he maintains (14 ml's) well (which they foresee), they will be removing his PICC (IV) in a few days and beginning to fortify my milk for his feedings!!!! :) They wont start trying to get him to feed by mouth until he has gained some weight. He cant afford any weight at the moment and needs to be continually gaining. Feeding by mouth (nursing or bottle) burns calories becuase its so much work for premies so we will eventually meet with a speech therapist who will gradually introduce him and me to the process when we all feel comfortable. At this point, we need to take one milestone at a time and I must be patient. I think I can do that. ;)

So at this point, with his heart concerns mostly behind us, we are focusing on his weight gain and getting some fat on his bones to keep him warm. we take one step at a time and at this point, we are all just so thrilled by the above news and feel thankful and blessed!

I really cant thank all of your for your continued prayers for our family. We ask for continued prayers as we meet each goal and Bennett continues to amaze us all! Through Bennett God has taught us so much about this life and we are forever grateful. I really cant stress this enough!

Below are song lyrics for Forever Reign by Hillsong. this song has been stuck in my head over the past few days. I hope it is as inspiring to you as it has been to me.

You are good, You are goodWhen there's nothing good in meYou are love, You are loveOn display for all to seeYou are light, You are lightWhen the darkness closes inYou are hope, You are hopeYou have covered all my sin

You are peace, You are peaceWhen my fear is cripplingYou are true, You are trueEven in my wanderingYou are joy, You are joyYou're the reason that I singYou are life, You are life,In You death has lost its sting

Oh, I'm running to Your arms,I'm running to Your armsThe riches of Your loveWill always be enoughNothing compares to Your embraceLight of the world forever reign
You are more, You are moreThan my words will ever sayYou are Lord, You are LordAll creation will proclaimYou are here, You are hereIn Your presence I'm made wholeYou are God, You are GodOf all else I'm letting go

Oh, I'm running to Your armsI'm running to Your armsThe riches of Your loveWill always be enoughNothing compares to Your embraceLight of the world forever reign

My heart will singno other NameJesus, Jesus

Oh, I'm running to Your armsI'm running to Your armsThe riches of Your loveWill always be enoughNothing compares to Your embraceLight of the world forever reign


(Here is me and our 2 week old miracle)

Blessed...

Sorry there hasn't been much of an update, its because things haven't changed much.

Late Monday night an x-ray revealed fluid in his lungs so they took blood and sent it to the lab to check for infection but started him on antibiotics right away. They rule out infection if bacteria hasn't grown within 48 hours usually and will stop antibiotics. Today my nurse advised me they are stopping antibiotics tonight and they believe that the fluid is not an infection because he has no other clinical symptoms of it being so. They think that the fluid is related to his lungs need for extra oxygen support and put him back on the CPap, although still breathing on his own and room air. Just needs a little extra help keeping his lungs from collapsing. Its very common for babies prematurely but more so his size. I will certainly thank the lord for the Cpap and take that over the breathing tube! :) I know with time that he will not need the cpap but for now am grateful for it. Continued prayers in this area would be greatly appreciated.

In my last post I touched on the PICC line they need to insert as the umbilical line is coming up to its expiration. Today when we arrived, the nurse informed us they would be trying for the line again shortly (they had tried one time before and were unsuccessful after much searching and attempting) so we headed down to the cafeteria to eat and wait for them to be done. I prayed over the staff preforming the line and the procedure. After about 3 hours of searching and attempting again, they were unsuccessful. They explained that his skin is tough and every time they would get through the skin the vein would move and they weren't able to get it, so tomorrow they will be making an incision in his skin which will make it easier to locate the vein for insertion. Please pray with me that tomorrow's procedure is successful and quick. Third times the charm right! :) Please pray over all the staff preforming it as well, although they do this everyday, it has to be difficult to attempt 2x and be unsuccessful. I just pray tomorrow is successful and its in the lords will.

Bennett has been doing well with the diuretic and is tolerating his feeding really well. So they have upped him to 3ml's every 3 hours. :) mama is happy about this. My milk has come in, obv not as much as maybe it would be if bennett was with me all the time but I need to give my body some credit. I had my son, 6 weeks early and not the "natural way". Its going to take some time for my body to catch up.

No news on his ductus closing yet, that takes time. We ask for continued prayers in this area as this is one of the biggest concerns at the time. We are praying that when the ductus closes is causing NO NARROWING OF HIS VALVE and he is able to continue to grow and not require surgery!!!

I just have to shout from the rooftops that I just adored our staff & nurse today. All of our nurses have been wonderful but the nurse today just made me feel at home. I am still learning the In's and outs of the NICU and still learning that I am Bennett's advocate and I have a say in what goes on (although I haven't needed exercise this at all). When it comes to holding him (especially today after 3 hours of the procedure), I would do it every second but am hesitant at times because I'm adapting to my new normal of holding a 1.5 lb baby as opposed to a 7lb, not wanting to get him upset or overly tired and burn calories he cant afford, ect. My nurse today suggested Kangaroo Care without me mentioning it and got everything ready and was just so accommodating to me. It made me feel important, like I was just as apart of his care as his IVs were. :) So overall, even though it was heartbreaking to see my little man go through this procedure two times, my love tank was full from a good chunk of bonding. Resting on mommy to soothe him after his rough time.

Blessed...why? Not because everything is going our way, not because things have improved drastically overnight, not because our life has been easy these last few months. We are blessed because despite all the circumstances, God remains faithful, constant, unchanging, amazing, near, worthy. In times like these, you make a choice to find the good in it or crawl in a hole. And we choose to find the good in it, to understand the meaning of it and if we cant understand, have peace knowing that its OK if we don't. God has shown us miracles through Bennett, god has used our story and his life so far to touch many, to be a witness, How aren't we blessed?

10,000 Reasons

Here we are, Day 2 being home. Its been such a transition, and I have to admit an emotional one. Darn those raging hormones. ;) Overall, my tears have been of thankfulness, awe of God's greatness, mercy, love and there have been times of sadness. The enemy wants to instill fear into my heart and I wont allow it. Fear is not of my God. Where would I be without my savior?

I realized that I was so drugged that I didn't update you with where there concerns are with his heart condition. As we know, Bennett has an aortic stenosis. They found a little more information that would reveal he has a bicuspid aortic valve (he has two leaflets instead of three). The cardiologist doesn't feel that this will cause an issue until much later in life where he would need surgery. Their more main concern at the moment is his aortic valve but the only way they can really know anything for sure is with time. We wait to see when his ductus closes to see if that will cause narrowing in the valve. If it does cause narrowing, he would need surgery and would not survive being so small, so they would give him a medicine to make him think he was still in utero, then reopening the ductus and wait until he is big enough to survive a surgery. So at this point they have him under alot of monitoring. He gets his blood pressure checked on both arms and legs 2x a day to make sure there are no changes as the ductus starts to close. So at this point, like much of his journey we wait and see. :)

Today, our sweet bennett is doing good. When we arrived for our visit she mentioned last night he required a little more oxygen then he has since birth, but not alot. They wanted to get to the bottom of why the change, so they ordered an echo to be done to make sure that his valve is not narrowing. They also wanted to rule out infection but she mentioned that he is not showing any signs of infection so they don't feel that is the issue.

The echo was preformed today when we arrived and the tech could not reveal much but said the ductus wasn't closed yet so we have to wait for the cardiologist to let us know if anything else was found during the exam. After the echo the nurse mentioned that he needs a PICC line (an IV) because his umbilical line has an expiration date to avoid infection, she told me they would be putting that in today and I could call at 6:00 to see how it went.

I called back around 6 and they mentioned that after we left today, he needed additional (2L)  oxygen (he had 1L before) but couldn't say why. She also informed me they attempted the PICC but couldn't get it in just right (in his scalp) so they would be trying it again later tonight possibly if not tomorrow. She was working on getting him calm because he had a pretty eventful day and was just tired. The nurse also mentioned that he needed a diuretic because he had more fluids in his body and wasn't releasing it as quickly as they wanted, they said after the diuretic was given that his oxygen became a little better, not back to what it was but still a positive! So at this point we are just praying that his oxygen goes back to 1L, that there be no infections, no complications with his heart after the ductus closes, and he starts to gain weight and continue to stump the medical team! :)

We thank you for your prayers and walking this journey with our sweet Bennett. God is so good. I cant even begin to express to you what comfort I have knowing that when I leave the hospital, God is there. That when I feel alone, God is with me. That when I shed a tear, God is catching it. That in this journey, my God loves me and cares for me. That this journey with our son is for a hope and a future and not for harm....10,000 reasons for my heart to find. These lyrics below describe everything perfectly.

Standing on this mountaintop
Looking just how far we’ve come
Knowing that for every step
You were with us

Kneeling on this battle ground
Seeing just how much You’ve done
Knowing every victory
Was Your power in us

Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful

Kneeling on this battle ground
Seeing just how much You’ve done
Knowing every victory
Was Your power in us

Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful
You are faithful, God, You are faithful

Scars and struggles on the way
But with joy our hearts can say
Never once did we ever walk alone
Carried by Your constant grace
Held within Your perfect peace
Never once, no, we never walk alone

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful

Every step we are breathing in Your grace
Evermore we’ll be breathing out Your praise
You are faithful, God, You are faithful
You are faithful, God, You are faithful

You are faithful, God, You are faithful
You are faithful, God, You are faithfu

Bennett Timothy James Puente

Here is the quick story of his birth and updates until now! :)

Right before they took me back for my somewhat scheduled c-section, my family was sitting in the room and I looked out the window and there was a beautiful rainbow. Yet another reminder to chari and I of God's promises. It’s exactly what we needed to make it through the scary time, the Peace we needed. God is caring for us. 

When we came back to the OR, the plan was to go through with an epidural c-section manly because as they discussed our case, they wanted this to be a smooth & safe surgery for Bennett and I. They had to be careful not to lower my blood pressure to much because that could directly effect Bennett and they didn't want that to happen because that could quickly turn into an emergency c-section. 

They inserted the epidural and slowly started to give me the doses until I could get numb enough for the surgery. It got to the point where I could no longer have any more doses of the meds but my body was rejecting the medication and was not numb enough in the areas it needed to be so they decided I would need to have the spinal after all. That was preformed and it took longer than normal for it to set in but it did well enough for them to start the surgery. Chari came back and sat by my head as they started. Within about 10 min or less, the Anesthesiologist stood and told us that he was almost out. Chari really wanted to see so they allowed him to look. Chari and the Anesthesiologists eyes widened and they started to tear and tell me he was so small. I then heard his little cry and immediately tears of joy started flooding my face. My sweet miracle was here, alive and crying. They couldn’t show me so Chari followed the NICU team and he took pictures and brought them back to show me while they finished up the surgery. The pictures just didn’t do him justice. He is perfect!!

When they moved me to the recovery room next to the OR, The issue became pain management. My spinal started to wear off quicker than they expected and they didn’t have any pain meds on board at that point so I could feel pretty much everything. It was an intense feeling, like my insides were melting. Haha. They were able to pump me with lots of meds that made me extremely drowsy which wasn’t eventful for the family that was there to see me after my surgery. :) Before moving me to my room back upstairs, they brought Bennett for me to see before he went back to the NICU. I got to hold his little hand and talk with him before being to tired to see straight.

When I felt better I could come back down to see Bennett but It took me until really yesterday to feel better and be able to walk around and go see him, although chari did wheel me down a few times before. I have learned much about my body in this time but I will spare all the details. ;) My pain is finally really under control, walking around has helped. The main pain has been the air that they pumped me with. I just felt it heavy in my shoulders and chest which made it impossible to lay flat to fall asleep but praising and thanking god that it is for the most part out of the way. 

Bennett since being in the NICU has done AMAZING! At this time he is only receiving 1L of oxygen for backup but is breathing in all the air that we do. He is just an amazing little man! They think that I will be able to hold him today, but we will see if that pans out. They have to be extremely careful because of the connections that he at the moment. He has wiring in his umbilical cord and that cant be moved to much. So I am just waiting to get my skin to skin time with my son. Something most mamas get within minuets of birth! I am just in awe of God's promises when I look at him. He is a sweet reminder of how much God cares for his children. Pictures don’t do his small size justice!! It will be a long journey for our sweet boy BUT we believe in miracles. We are praying growth and health over our son. That the Lord will use him to abundantly bless every nurse that comes in contact with him. That the Lord uses him even when he is not awake, that Peace, Love & Grace surround his isolette.

Not that his name needs explanation but there is a lot of meaning behind his names and want to share. 

Bennett- (Little Blessed one), Benito is Chari's dads name and Emmett is my dad's middle name, so combine the two and you have Bennett (with an extra n because I like to throw those doubles in my kids names, makylee-brooklynn). Our fathers have been instrumental in our lives and we want to honor them and their amazing character by gracing our son with a mixture of them. We couldn’t be happier that his name also has a lot of meaning behind it and something we hold close to our hearts. 

Timothy- (To Honor God). My uncle Tim passed away and it was a devastating time in my life and the lives of my family. What I do know is he was an amazing man! Loving, Kind, giving and all the qualities that I want my Bennett to have. 

James (to supplant) was Jesus’ brother, He took up his ministry. I did a study over a year ago on James and quickly fell in LOVE with him and what he teaches us through his word. A strong, faithful servant. I look back now and understand why the Lord connected me to that study and why it had such impact on me then. Preparation for now! 

So there you have it, Bennett Timothy James. Our strong, faithful, kind, giving, and loving boy. 

I cant thank you all enough for your prayers! Our Bennett is such a blessings, but we understand that he is not only a blessing to us but to all of you! The lord has given us gifts of his spirit that we can use to encourage those around us and is why we choose to share our story! Prayer works, and we ask that you continue to pray over our son and his health. God is so good. There is no denying that when you look at Bennett. 

I will keep you updated on his progress; right now I am just waiting for my milk to come in so he can start to eat!!! Pray for my liquid gold to flow. Haha. :) 

Blessings to all of your households, may the Lord bless you for all the diligent prayers that you have lifted for our son! 

God is in control...

So after the drs staffed today on my monitoring, they feel it the best and safe way to proceed is to have our c-section today with my husband here and it happening in a controlled environment with all the team prepared for Bennett's grand debut!

I am excited to meet our son and anxious for surgery all at the same time. I don't know what The Lord has in store after today, but I do know he is Faithful. We leave Bennett's life in his hands and know that all things work together for our good.

Prayers for my nerves of having a c-section. My first ever real surgery. Pray for everything to go smoothly. Pray over all our dr's working on me and Bennett. Pray over our girls and family at home. Just overall peace and safety. Thank you all. I will update you as soon as I can.

Oh the joys of decels...

So, as most of you may know I have to have monitoring multiple times a day, but they moved me to a more comfortable floor for the last week to do so. Where I had more freeness to walk and get up and not be connected 24/7.

Yesterday during monitoring he had two decelerations in his heart rate within 15 min of each other and then a large acceleration to try and catch up. Basically that tells us that the two decels were a lot for his little body. Given that information, they moved me to labor and delivery for extended monitoring in the morning. I was only hoping to be here overnight at the longest but as monitoring progressed, he started having frequent decels so they tried moving positions when they happened, left, right, back, sit up. That didn't seem to he helping so they gave me oxygen to see if that would help bennett and started an IV fluids so I would not get dehydrated also because I cannot eat when down here just incase they need to do a c-section. The oxygen seemed to help and I went almost 4 hours without a decel so they decided i could finally eat after 12 hours!! A good friend brought me some pizza and even though I felt as if I could eat a horse my small stomach size reminded me differently! ;) after being pregnant with makylee I trained my stomach to eat small meals all day so even to this day I can rarely finish anything, despite my fooling body figure. ;) shortly after eating he dipped into a decel that went pretty low (almost 60's) and 4 people where in the room trying to readjust me and get his heart rate back up. After that last decel I was put back on no food or drink and that's where I have remained.

Throughout the night he had decels but non that caused them to preform an emergency c-section But the decels are happening more frequent then they want and can never be sure if its him compressing his cord or a true emergency. The doctor just came into review my strip from the night and explained that they probably won't be sending me back upstairs today and ill need to be continually monitored again and they aren't sure for how long. They are stuck in a place where they don't want to wait for his decel patterns to become severe and dip into long patterns where they need to preform a general anethestia but they also don't want to take him out yet either.

So we wait in the gap of the unknown. Not knowing when our son will be born or if he will be ok. I do rest in the fact that god knows which puts my heart at ease. This threw off my plans for the day as chari was going to bring up the girls to visit and spend the day. But now, being in labor and delivery on constant monitoring really puts a kink in my plans and that is the part that upsets me the most. I miss my girls and I just wanted to spend the day with them and try and make it semi normal. (As normal as one can be in the hospital that is.) I am on constant monitoring with an IV and can only get up to go to the bathroom. It's not the time or the environment I want my girls to be in. So I am praying tonight goes well and I can be moved tomorrow so I can visit my girls !

Although tired, hungry, aching in every part of my body from probably the most uncomfortable bed known to man, missing home, missing my husband and girls, missing the normalcy that our "old" life gave I know that God has this all covered and as much as my day is constantly changing, his plan for my life and Bennett isn't. It's constant and He is my constant. He hasn't left my side during this and I know He won't. He has challenged me from the day he asked me the tough question of "How far are you willing to go to trust me?", that is the day my life changed, the day I started living for a different purpose, the day God blessed me with all that I needed to make it to the end of this journey, whatever that may be.

I end as I always do, Thank you for your prayers, your visits, and encouragement. I can't say enough that God is GOOD. And until your in a circumstance where every being of your life is tested, you may not fully grasp that or be able to say that. But if i can still say that, and all the countless before me tested can say that, cant you?

Week 1

It's been a week since I have been admitted to OHSU. :) I am not going crazy yet, although I miss my girls and husband terribly and wish I could be with them daily.

We had a US this morning that revealed my fluid to still be getting lower. Friday it was 4, sat it was 3.2, Sunday it was 2.9 and today it is 2.8. Has my water broken you may ask? No, he is not producing it is what they are thinking due to his "anomalies". His cord dopplers are high but apparently they have been since Monday which is different info then we received previously however he is still moving as he should and breathing which shows he is not in stress. Which is great.

We then had our 6 week echo with the cardiologist which revealed that nothing has changed or worsened with his heart condition. The only real way to know if he will need surgery is after he is born and they complete an echo at that time. It is hard with his fluid being low to get all the pictures that need but he is confident with what he did get. The reason his heart condition could need surgery is due to areas of his heart closing after birth (which are suppose to, the opening keep babies alive in utero) and causing his aortic value to narrow, but like I mentioned above, we must wait until they preform the echoes after birth.

As for his birth, we know I won't go til may but we don't know how soon he will come either. So as it has been, we wait until we get the word that he needs to come out. :) until then, I am admitted and don't have plans on going home anytime soon.

As always, we appreciate your prayers, encouraging words, thoughts, and visits! It helps make this experience that much more worth it!! I feel thankful and blessed for the strength, grace and peace God has given me and my family. He is ever so present with me daily and we are waiting for his will for Bennett's life to unfold.