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)