1st Eye Exam

I helped hold Asher during the eye exam!
The Lord continues to pour out His grace and mercy on our little Asher. Today He had his first eye exam and it was all clear! One of the major risks of extreme prematurity is loss of eyesight or even blindness due to ROP, which is caused by ruptured blood vessels in the eye due to too much oxygen from the ventilators. We were very concerned about this because of all the oxygen that he's required to just keep him alive. However, when they did the eye exam they saw no signs of ROP and said that his eyes look really good! Thank you Lord for your continued blessings on our little boy! We pray that everyone who sees Asher will see you, Lord!

Update: Just Trying to Grow!

Wide awake tonight! We are thankful for another good day. Asher's up to being fed a 1/2 oz every 3 hrs and he's now 1 lb 14 oz. Now we just need to grow! Maybe 2lbs for his 2mo birthday? We'll see! Thank you for prayers!

More Kangeroo Care and Working on my Paci!

Big Moments and Letting the "Mysteries" Nourish

We've had a big week! First, Bryan held Asher for the first time and we got our first family picture! Then, today when I walked in...I noticed Asher was not on Cpap anymore! He has what's called a nasal canula which is a another step down in the oxygen assistance world. We are so blown away at how the Lord has blessed us in one week. During the hard days after surgery last week, I really prayed for some refreshment. Isaiah 49:10 says:

"They will not hunger or thirst, neither will mirage (mislead) or scorching wind or sun smite them, for He who has mercy on them will lead them, and by SPRINGS OF WATER He will guide them."

So, I read this at one of my lowest points last week, and just asked the Lord for something refreshing..a "spring of water" in what was beginning to feel like a vast, overwhelming, depressing desert. I had had a dream the night before that Asher couldn't breathe anymore and Bryan had come to tell me that it was just too hard for him, and he didn't make it. I can't explain to how vivid my sobs and the pain I felt were in the dream. I've never had a dream like that. I've never dreamed of losing my life or anyone else's. I've never really struggled with that type of fear. This is when I knew I was really operating in a state of extreme stress, worry, and anxiety. I took a walk that morning an just prayed the entire time. I felt weak, and defeated. And then while I was walking I felt God pushing me to "get up and get to work." He was nudging me to go up there to see Asher. Moments before that I didn't want to go up there because I was afraid of what I would see, or how bad it would be..and I just wanted to avoid getting more upset or afraid. And now, I was feeling He was saying "don't be afraid- get up there and pray and be faithful and trust Me." And that's what I did. And when I went up there, Asher's oxygen level had improved. My mom and I prayed with him, and I felt much more peace after being obedient to what God was telling me to do. Imagine that! This was last Friday, and by early Sunday morning Asher was back on the cpap, and now on Tuesday he's stepped down again by being on the nasal canula! Again, the roller coaster of the NICU. I was dreaming he died on Thursday night and then just 2 days later he made a MAJOR improvement. Gosh, this boy is going to give me gray hairs for SURE. :)

On the same theme of the "desert"...I was reading the book One Thousand Gifts and the author was talking about the Isrealites in the desert and how God nourished them with manna. She said the word manna literally means "what is it". So, she talks about how the Isrealites were choosing to let something that they didn't even know what it was, a mystery, nourish them and sustain them. And when they did eat it, they described it as honey on their lips. So, she talked about all the "mysteries" in her life that she had refused to "eat" or allow to nourish her. She was saying at some point in her life, she had not allowed herself to see or experience the good that came from the hard things. So, what are the mysteries in my life that I need to let nourish me? All the things that cause me to ask "why" or things that I can sometimes say "I don't know what this is" . Obviously all the hard things that have happened the last 2 years, but especially the extremely premature birth of my twins, and the death of one of them. It is not a complete mystery to me why this happened, but it definitely has elements of mystery in it in that I don't know all the answers or reasons why. So, I was reading this and feeling God say "eat the mystery, and let it nourish you". What does that look like? Well, here are some ways I/we've been nourished by accepting our story, and attempting to glorify God in it. We have been blessed by so many people in their messages, gifts, and service to us during this time. We've received many sweet, very thoughtful gifts with our sons names, or initials on them...just amazing gifts that have blessed us immensely. We've had delicious meals left on our doorstep..something as simple as eating a home cooked meal together at home is something we've been incredibly thankful for. It has nourished our souls to have people tells us with tears in their eyes that our story is changing them and people they know who've read our story, or are following it on Facebook. To have moms tell me my story and experience has changed how they mother their children or view their role as a mother. To have complete strangers tell us their relationship with Christ is different and changed because of what we are experiencing and sharing. To have sweet conversations with new friends about the hard realities of infertility and loss. If those things are not "honey" on our lips I don't know what would be. If those stories don't nourish our souls, and soothe the aches deep in our hearts, I don't know what else could. THAT is what God does through pain. He makes the ugly into the beautiful. Ashes to beauty. Those are powerful moments and in those moments Bryan and I look at each other and we don't say it, but we are thinking.. "Really? We had that affect on someone? Really?" By the grace of God alone is that possible! We are two really sinful, messed up people! ;)

Another book I read a little from recently is called When I Lay My Issac Down and in this book the author talks about how before Jesus dies, he compares himself to a wheat germ seed. The book talks about how the seed has to leave its familiar seed covering, be buried in dirt and in the dark, and then hope that new life will spring forth after that. Even lush life. The verse is John 12:24:

"Very truly I tell you, unless a kernel of wheat falls to the ground and dies, it remains only a single seed. But if it dies, it produces many seeds."

The author goes on to say "in the same way, we need to be willing to give up whatever is most familiar, comfortable, and precious and allow ourselves to sink in the darkness, and trust God will bring life out of what feels like death." I was forced to give up something comfortable and precious to me, a normal pregnancy and the life of my son, Titus, and I had to allow the darkness of that reality to be in and around me- to accept how dark and hard that was (and I will have to continue to do this), and then trust that God would bring life from it, and good things. The Lord has already brought good things from that darkness and that loss of what's normal and comfortable and precious. And I pray He continues to show Bryan and I more and more of His perfect purpose in all of it and that new "life" continues to come forth, and even lush life!! What great hope there is in thinking about that. That makes me so excited to see what God will do next. I need to come back to that Truth, and these words in the hard, discouraging moments!

This first video is our sweet boy with no mask or anything else covering his face! We haven't seen him a whole lot like this..where we can just truly take in all of his face and features..another blessing!! Just getting to LOOK at our son, and take in all the details of how God physically made him is a treat. And then, the second video is from last night when I caught him sucking on his paci like a big boy! The nurses have told us they really don't develop a sucking reflex until 34 weeks. He was 30 weeks yesterday! Another thing to be thankful for.

An Example of the "Roller coaster" of the NICU

Here are Bryan's updates from this week!

3-17-12

Asher update: it's been a rough week. Sorry we haven't posted any updates in the last couple of days. There hasn't been a lot of positive things to share, and we've been emotionally exhausted.

Asher's had a difficult time recovering from his heart surgery. He developed something called P.I.E. which is essentially emphysema. If he were an adult it would be irreparable, but since his lungs are still developing they've allowed his lungs to stay collapsed to have time to heal. It's been hard to watch him struggle all week and to see him on so much oxygen. We really thought his lung issues were behind him so it's been frustrating to see him take such a major step back. However, the plan seems to be working. His right lung is still partially collapsed, but they are going to take out his breathing tube and see how he does on the CPAP again. This is pretty aggressive to go from the jet ventilator back to the CPAP, so we pray he does well! Thanks for all of your prayers!

3-18-12

Asher's doing much better today! He's off the ventilator and back on the CPAP and he's breathing pretty well! Thanks for all of your prayers! We can't explain how much all of your thoughts

and prayers mean to us!!!

Things change SO fast in the NICU. In one day we went from, "it could be 2 weeks before he's back on cpap" to "oh, he's back on!" We have to confess, we struggled a lot with faith and hope in God's plan this week for Asher's life. It was incredibly hard to see Asher struggle so much after surgery. We had been told that ups and downs are normal. We just had NO idea what that really meant. Asher's poor lungs are just so fragile and immature, and he is trying so hard to learn how to breathe long before he was meant to! We are thankful for a good day, and learning to be thankful for the bad ones...because without those, what makes the good ones so good and sweet?

Please Pray for Asher's Lungs to Recover...

Asher had a tough day recovering from surgery. His left lung has collapsed and he's had a lot of trouble maintaining his oxygen level. He's got some pretty significant lung disease already due to being so premature and on so much oxygen, so they're trying to get his lung to reinflate while not giving him too much pressure that will cause more lung damage. He's been through a lot and we hope that he can recover from all of this quickly! Please pray for his lungs to heal and not have any long term side effects from all of this!

PDA Surgery

It was decided yesterday that Asher would have surgery on his PDA (hole in heart ventricle) at 7:30 this morning. Here is a picture with his battle scar..if he's anything like dad, he will have quite the EMBELLISHED story one day as to how he got this scar. :) It is only about an inch long, so as he grows, it will look smaller and smaller.

The surgery actually got under way about 8:30 this morning. Bryan and I were back at his room right up until surgery time. This surgery was done at his bedside so Asher did not have to move! For tiny babies like him, it's important for him to maintain his body temperature, and moving him to an OR would cause his temp to drop. So, yesterday, he was moved to a room with a door, so it could be sterile for surgery. He will stay in this room, and it's better for him anyway because it's more quiet! There were probably 15 people in and outside of his room for surgery today...pretty amazing. The surgeon talked with us before and after, she was very nice and we really appreciated getting to talk with her. There has been a lot of talk to us and around us about how this surgery is very common. And this dr had just done a heart transplant yesterday, so Bryan said something to her about knowing that this was a very common surgery, but we still appreciated her so much. She said " I don't treat any surgery as common, when I'm teaching how to do this surgery..I always emphasize that if something goes wrong and you are not careful, then you have a much bigger problem..you just don't have room on these babies for mistakes". So, we felt much better hearing that. It's comforting to know it's a common surgery...but you also want to know no one is asleep at the wheel on your tiny baby!

Asher is recovering well and we are so thankful! We are praying he continues to recover, and that his little lungs can start healing much better. He's on a ventilator because of surgery, but hopefully he can get back on cpap soon. We have learned a lot about those two machines. The cpap is much better for his lungs. He already has significant damage to his lungs just from them being so premature, and from having a ventilator tube in and out several times. The tube is life saving, and a must for premature babies..but as with everything, it has it's side effects. The tube causes more damage to his fragile lung tissue every time it's down there. It has become so apparent to me how important the lungs are, and how much I have taken them for granted! I was resting yesterday, and since I was still and quiet, I was suddenly very aware of my breathing and how that is the biggest challenge for Asher right now- learning to breathe and having the strength to do it on his own. Everything a premature baby does takes more work and more energy than for a full term baby. And that includes breathing! I'm so thankful that God is blessing Asher with breaths whether they are from a machine or not, He's giving Asher life with every one of them. I hope and pray he can do it on his own one day not too far from now!

Please pray with us that this surgery will help his little body get blood to all the right places more efficiently, and that because of that Asher can focus on eating and growing for a while..something he has not had the opportunity to do since he was born. Thank you so much for your prayers, we have felt bathed in them and have felt so much peace and we KNOW it's the holy spirit and God honoring all the prayers of the saints. Revelations 8:3-5 talks about the prayers of the saints and how God adds "fire" to those prayers and throws them back to Earth. It's such a powerful picture to me of each prayer being magnified in power and strength by the Lord. We are not worthy of all the prayers we have received on Asher's behalf and we can never truly communicate how thankful we are. We have been completely blessed by the love and faith of friends, family, friends of friends, and then complete strangers whose hearts were moved to pray for Asher and us by the prompting of the Holy Spirit. Just saying thank you does not feel adequate enough at all!

First Time to Hold Asher!

Had to add this sweet belly picture too- this was right before he was moved Friday!



Yesterday, in our conversations with the dr it came up that I had not held Asher yet. The dr said to Bryan that I needed to hold him, and that if he did ok, we would try today. We were there for rounds this morning, and he told the nurses that we needed to do that today, and then he came by once I was holding him to check in and chat with us. We really like him and are so thankful he made this happen! We were expecting it to be a while before this happened, so what a blessing coming off such a stressful weekend!

It was quite a production to get our little 1 1/2 lb baby in my arms with the wires, iv and breathing machine, but once he was there and settled, it was a completely natural and sweet moment. We were supposed to have 30 minutes and then just see how he did. He stayed with me an hour and a half! I was looking at him...and was just in awe watching his little mouth and tongue move, hearing little breathing sounds and feeling his whole body jolt against mine when he hiccuped, and feeling his little hands and legs, and looking in his open eyes that were looking back at me, and all I could think is, "he's really alive and he's a real baby and he's OUR baby!" Sounds simple, but I just can't explain it any other way. Not holding him has made him somewhat of a display like you would see at a museum..like you're not sure if it's real until you get your hands on it! After a while, the nurses left us alone, and then came back later to check on us and we just started talking with them. The best part to me was sitting in a rocking chair, rocking my baby, while we talked to them. It was just a few moments of normalcy.... a normal mommy rocking my baby while talking to friends! I'm so thankful for today. But to be very honest, it made me thankful, but also made me so ready to do it again and again- and not in a hospital! But, I know I have to pull my mind back to this moment, right now. Today. Because God has things to show me and teach me in each moment, and right now one lesson is definitely a lesson of patience..on so many levels. But basically I'd say it's patience waiting for "normal". Man is that hard! And then at the same time, it's a lesson of having patience and grace for not only where I am right now, but where Asher is. A good friend just convicted me on this! Part of being a mom is having grace for where your child is-- and not pushing them to be more or better, or what you or the world defines as good or normal. Ouch. So, Asher is not a fat, healthy baby. And I need to enjoy him and encourage him where he is, and not just be wishing for something different! I'm praying for this truth to sink in.

If I can do that..I can definitely survive the next 3 months, and not only survive, but hopefully honor God doing it. So I have to focus on each day, and I was feeling like I was doing a good job at that at Grapevine. We had our routine. And then our new "normal" got all jostled around with moving to Children's. So, it's time to get settled in again with Dallas now being Asher's home! My impatience reminds me of Psalm 13. I have really loved this Psalm many times in this whole journey..all the way back to my miscarriages and the long, long stretches of time (not long in reality, but emotionally VERY long) in between pregnancies. I love this Psalm because the first few verses do something that we all need at one time or another. They relate to being in hard time..they affirm that those hard times can be agonizing to your soul, and I found comfort then and do now in reading that. It shows me that we don't have to have it all together all the time, and it's okay to struggle in your heart with what God has given you. But, I also know it's not okay to stay in that spot. And that's why I love the end of the Psalm..because it quickly brings the reader back to a place of reflecting on Truth and God's goodness. I'll leave you with that Psalm and pictures/video from today!

"How long o Lord, will you forget me forever? How long will you hide your face from me? How long must I take counsel in my soul and have sorrow in my heart all the day? How long shall my enemy be exalted over me? Consider and answer me, O Lord my God; give light to my eyes, lest I sleep the sleep of death, lest my enemy say 'I have prevailed over him', lest my foes rejoice because I am shaken.

BUT, I have trusted in Your steadfast love, my heart shall rejoice in your salvation, I will sing to the Lord for He has been good to me. "

Psalm 13

A New Phase- Children's Hospital

So, if you haven't seen Facebook...we were told Thursday night we could possibly be moving to another hospital. Asher's heart echo showed some irregularities and the staff at Baylor felt it would be best for him to be in a place with pediatric specialists. They also felt like his symptoms were showing that the PDA was causing problems again..mainly for his kidneys. They really stressed the urgency of him getting surgery soon for his PDA/hole in the heart ventricle. So, we had to wait until Friday morning to know for sure if we were moving or not. Needless to say, Thursday was a stressful night! So, Friday morning we were told Asher would be moving, and we decided he needed to go to Children's. The Children's transport team came and the room quickly looked like a movie or an episode from Grey's Anatomy. There are some pictures above of this and then of him once he got settled in a Children's. I rode in the front of the ambulance and Bryan followed behind. It was not a relaxing ride! We went slowly because every little bump is something that could stress Asher out, his little body is just so sensitive! After what seemed like forever, we arrived at Children's and got him settled in his new room. It's a totally different experience and NICU, and we are quickly adjusting. There are several things there that are nice, and you can tell it's a hospital geared toward families, moms, and children. We will miss our friends at Baylor- we spent 2 months there between bed rest for me, and the 1st month of Asher's life. There are so many WONDERFUL nurses and doctors there..and they were hard to leave, especially for me! I think they are hard to leave for a lot of reasons, but especially because they were with us for this entire journey so far, and many were in the room when Titus passed away and have grieved with us. That is just such a tender experience to share. But, we know Children's is where Asher needs to be and we are so thankful to live close to such a great hospital that can do anything and everything he needs. We know God has placed us at a new hospital for bigger reasons than Asher's care, and we trust that!

After we arrived and they started doing their own assessments of Asher, it seemed as though no one was in hurry any more to do the PDA/heart ventricle surgery. It's hard to constantly wonder if you are about to be in a stressful situation or if things will stay calm. Everything in your mind and emotions is heightened during that time..it's hard to describe, and basically it's stress but none like I've ever experienced before! That's been our whole journey so far with Asher, but we have had good stretches of days (maybe 4 ) where nothing "big" is going on and those stretches of days are SO nice. We pray and hope for more of those days!

Today we were told he's doing better, his kidneys look better and he's breathing fine. He's actually back on the si pap (similar to cpap) because his tube, again, came out last night! That's the 4th time this week! So, the cardiologist feels he will have surgery..and soon, it's just not urgent at this time. So, most likely at the beginning of the week. We are ready to get it done if that's what he needs, but at the same time we are thankful for another day without that stress added to it. Thank you so much for prayers!!

Ps- I LOVE seeing Asher on his tummy- he looks so peaceful and cute! :)

First Bath with Mom

Today I helped with one of Asher's "baths" for the first time! It's pretty much a sponge bath for him at this point because a real one is too stimulating for him. It's a very slow process..and probably slower because I was doing it! His whole body is wrapped up and the nurse would just uncover one area at a time for me to wipe with a soapy cloth, then a wet one, then a dry one. It was a little nerve wracking wondering if he would tolerate it or not ..meaning would his oxygen level drop during it or his heart rate?? He did fine! He did make faces at us, so I know it wasn't his favorite thing to do..but he tolerated it well. And it was neat for me to see more of his tiny body and all the details. Each little part that I wiped was like a new discovery for me, just getting to take it all in..all the amazing parts that God formed perfectly! This was pretty special and I didn't really process that until later today. Wiping behind his tiny, paper thin ears was neat and also a little scary! They feel like they could so easily be torn with the wrong move. So tiny and so fragile, yet every day he's stronger and able to handle more. I even got to brush his hair! It was fun to be able to interact with him more, but it also just made me so ready for when I can give him a real bath, and just hold him like a real baby whose not in a plastic home all day hooked up to tons of wires with a very finicky breathing tube that if bumped makes his oxygen level drop! I know God wants me to be in the moment now though, and I'm praying for the grace to do that each day! I think I am and will be appreciating Asher and just all the little parts of him so much more than if this had not been my experience. Our bonding experience is much slower than a full term baby and mom, and some days that's hard and it seems God moves too slow with time, but this is our bonding story..and I'm learning to be thankful for that. I didn't get a picture of bathing him..but here's a recent one. He has a little iv burn on his head..poor guy, has one on his leg too, but it should heal and go away eventually. I look forward to more and more milestones of things we can do together!

Back to the Vent...and Psalm 30:11- Mourning to Dancing!

Asher is back on the vent. The cpap was just too much work for him. He doesn't have the muscle development yet to handle doing all that work on his own. It's a little step back, but we know he'll get back to the cpap when he's a little stronger. They did say it was amazing he was on it for 48 hours. I think it's unusual for a baby his size to be trying that already!

As we were singing a song at church last night...I had future images flash through my mind. Here's the chorus :

You take my mourning

And turn it into dancing

You take my weeping

And turn it into laughing

You bring restoration

You bring restoration.. To my soul

I had a vision of Asher dancing one day and laughing- what a sweet moment that will be!

" You have turned for me my mourning into dancing; you have loosed my sackcloth and clothed me with gladness, " (Psalm 30:11 ESV)

Off the Ventilator! Job 12:10

Last night our little fighter decided he was tired of having a ventilator tube down his throat so he pulled it out! He was doing so well that the doctor decided to not put him back on a ventilator and instead just a CPAP machine to help him breath. This is a major step forward and we pray that he continues to improve and never have to go back on a ventilator!

Job 12:10 says, "In his hand is the life of every living thing and the breath of all mankind." We praise the Lord for this small step forward in this long journey that we're on!

1 Month Old!! "Come and see what God has done, He is awesome in His deeds toward the children of man." Psalm 66:5

Happy 1 Month Birthday to our baby boy!!! Thank you Lord for no surgery today and a good day!