Bennett's first month on the outside!

A few days late but wanted to try and do a quick update on how our sweet bennett has done on his first month "on the outside" (when he should be in).

He has come from he may not survive after birth, to thriving, from he will most likely need to be int abated to breathing on his own with VERY LITTLE HELP, From heart conditions to we cant find any concern in this area. and so many more little areas along the way.

Professionals-0   God-to many to count!

Besides thus far beating all the odds that have been against him. Today he is growing wonderfully. Yesterday he weighed in at 2lbs 8.7oz. He is still needing a little bit of O's (oxygen-about 21-25%) and still has tachycardia. The Dr's feel it all wraps around his small size, he may be a 38 week baby but his lungs are still small so growth is very important. He "nippled" from a bottle 4 ml's yesterday which is great! Practice makes perfect, sometime this week the speech therapist will see him and I will let you all know how that went. My main focus is for him to learn to suck and we will continually practice nursing but I'm not pushing it yet. The poor boy is underdeveloped and not even suppose to be out yet. :)

So overall I believe our son is doing great. He has some amazing nurses round the clock that just adore him which makes it a little easier for me to leave him there. I am getting the hang of the rounds and am happy that I can walk in the NICU and really understand and assist his nurses with his care. Especially to give the nurses a little break to catch up on charting. :)

Bennett has such a beautiful spirit, which i know is the Lord in him. Ministering even now to everyone who works with him, even to chari and I. The connection the lord has allowed me to form with bennett in this short time is much more than a mother-son relationship....its so much more. One that I cant explain. Our life will never be the same, our life changed in January when we started attending OHSU and then even more so the moment Bennett came. But I can tell you that I am so happy it did. I feel like the lord is giving me a second chance with life, the way I perceive it, a reminder of why we are here in the first place. God has taught me a deep gratefulness for our girls, our crazy life, what we have rather than what we don't. He has helped me understand that bennett is a precious and special gift, from the moment he was formed in me!! no matter how many times professionals give us their "diagnosis", no matter how hard it gets, I am to keep pressing on without allowing it to phase me. I am not to question god why?, I am to faithfully trust this process.  Chari and I have been chosen by God to have Bennett and His WILL be done in and through his life and I can trust that because it is for a hope and future.

God has not given us an ordinary blessing but an extraordinary miracle.

Prayer requests, his growth is always a must but really ask for extra prayers in the breathing and eating department. That is really what needs to improve before he can come home. He holds his temperature wonderfully, but he needs to be eating by bottle or breast and breathing on his own with no cannula. So please help us pray in those areas. We so appreciate it

Here are some photos of the last few weeks. :)

We looovee fat!

Here we are week 3 on our journey in the NICU.

(Since friday the 5th) As some of you know Bennett is off his IV's and up to full feeds and tolerating it well! :) they have fortified it with extra calories and you are really starting to see some weight gain. It will never be acceptable to say "you need to get fat", or "I love that your getting fat and filling out" other than here in the NICU. Bennett, Benny, BT, TJ, BP, lil man or whatever you like to call him is almost 2lbs!!!!!!!!!!!!!!!!!!!!!! 1lb 15oz or 880grams!!! He has pooped alot today (he's a puente) so we think he will hit that mark by tomorrow or Friday!! (I will throw a mini party because its a BIG DEAL!) The nurses also tried feeding him by mouth yesterday (tuesday) and he took 3ml's which isn't a lot out of his 16ml's but good! The nipple was just so large for his mouth. Feeling grateful, blessed and amazed by this little guy! He's such a fighter.

Today he has been on and off his nasal cannula. So we are praying that over time, he will be fine without it. :) so far, he has been doing well and needed it at one point when I was holding him today. We couldn't be more thankful for this.

I'm amazed although I shouldn't be by Gods grace, peace, joy through this journey. We are starting to adapt to this "new norm" although we know it won't last forever. We had to transition into this time and in the same note will have to transition out when the time comes. I'm getting more familiar with how things are run and I'm sure soon will be able to do this job in my sleep! ;) jk. ( This is a tough position and pray over the medical staff daily, they are amazing.)

Gods given me this time to allow His work in my life on all levels. He's taught me through spending time here what's really important in life, he's allowed this time to look at my priorities, he's taught me to be grateful because although our situation is hard, someone has it worse and to be thankful for our version of "hard". He's taught me a deeper appreciation, love and compassion for the families of the NICU, he has brought me a passion of prayer for this field and for these people I encounter daily. And for all this I am humbled and blessed.

We really can't thank everyone enough who have stepped up to help his financially, spiritually, with meals and overall support. Continued prayers are always appreciated for all these areas below. His heart condition is not a current issue and just prayer it wont be. :) Please pray for development all around. Hearing, eyesight, weight gain, breathing. All of these things that come so naturally to a full term baby but come slower for him. Although he has continued to amaze and capture the hearts of doctors and nurses, prayers for these areas are always appreciated. :)

Here are some pics of the last few days and one from today!!! Happy 3 week birthday little man!!

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)