I want to be purposeful about journaling during this time in our lives as we watch our miracle micro preemie, Asher, continue to grow and thrive. I began this blog during my month of bed rest at the hospital while I was pregnant with Asher and his brother Titus. We continue to hope and trust the Lord for Asher's future. This blog begins with the story of how both of our boys came to be. They came about after many tears, many prayers, and many months of crushed hopes. On February 2, 2012, our boys Titus Bauer and Asher Mark were born at just 23 weeks and 2 days gestation. My water around Titus broke at 19 weeks, so his lungs were very underdeveloped. Titus lived 45 minutes and is now living a perfect life in heaven as he watches over his little brother Asher. Two and a half years later God redeemed our story of hurt with a precious full term baby brother for Asher. We are humbled by how the Lord has loved on us in our journey through parenthood.
So, we did not get the g-tube after all. Plans in the NICU can change fast! We decided since his ng tube has stayed in place, that we don't need to do the g-tube yet. We are just going to see how things play out, and it's an option later if we need it. Hopefully, Asher can grow by eating from the ng for now, and then during whatever we decide to do to treat the stricture (narrowing) in his esophagus. Our big prayer is that the esophagus will heal, either with medical help or without, and that Asher will be able to eat by mouth. So, for now...we are just eating and growing and hanging out. Here are some pics from this week. Asher won a "cuteness" award this week too. Apparently there was a competition this week in the nicu for best dressed or bed or something...and some girls won bc they tend to have more cutsy coordinated gear. If mom had known..I would have whipped out a bunch of our matching boy accessories! Oh well...cuteness award will do for now! :)
Asher coughed out his feeding tube, and so it was replaced again but through the nose. He had to stop eating and be put out again for this procedure because they had to do it with a scope. He will have a g-tube put in some time next week because it can be a more reliable, consistent way to feed him for the next several weeks and possibly longer if he needs it. Regular feeding tubes can come out easily, and we need his to stay in now mainly because it is keeping the esophagus from completely closing on itself until he's bigger and they can get in there and stretch it out. We still have no idea what caused this. We feel so bad for our little boy, but we are thankful something can be done for him to be able to grow and eat! Thanks for your prayers for his esophagus to heal, for him to grow, and for him to be able to eat by mouth sooner than later. :)
After procedure today - tube is now in the nose- hoping it stays better!
The circle is his esophagus and the small black dot in the middle is what is still open in this section. Very small. :(
After he coughed out the tube last night..at least he's still enjoying the paci :)
So..before all this esophagus craziness..we had a pretty fun weekend! First, my shower was on Saturday and my sweet friends blessed me SO much with a wonderful shower!! My sweet mother in law and sister in law came in town too to celebrate with me! I had been waiting for a shower for a loooong time. And then, in January, it was something that I wondered if I would get to do or not. I had to "let go" then of the idea, and just focus on what was really important..healthy babies. But, a shower is just one of those fun, normal things I think every woman looks forward to for her first child. So, it was a sweet time of celebrating Asher. I'm so thankful. The theme was "Little Man"...I loved it! My friends did an amazing job and blessed me so much! I don't know how they did it all. They are all amazing and very busy mommies. Here are some pictures from that and Mother's Day too. My first Mother's Day was sweet, I got to hold Asher for a while...kangeroo style, and I really had to marvel at how he fits on me now when we kangaroo compared to when we first started doing it! He fills up a lot more space on me now! We started Mother's Day with Bryan's parents and ended it with mine and eating a nice homemade meal on our patio in great weather. It was a nice day.
The decor was SOOO cute!
My beautiful mom!
Yes buddy..you definitely were!
Mother's Day Pics
My Mother's Day gift from Asher
Yummy meal on the patio!
Mama Gail holding Asher for the first time!
Aunt Kandace holding Asher!
Dig Dig holding Asher- he loved getting held by everyone!
It was a very nice, calm weekend! We are praying for more "calm" for Asher now that his feeding tube is back down. Please pray with us that it stays in. If it comes out (more likely since its in his mouth), then he will probably have to get a g-tube. This would be a surgery..and possibly a more long term eating method. It is more important that Asher gets to eat...but we would really love for him to get back to working on eating from a bottle and not have to worry about feeding by g-tube. But, we know God is in Asher's future, and he's taking care of whatever will happen. We trust that. We just beg for his mercy on Asher's little body that has been through so many battles.
I read a friends blog the other day who also has a 23 weeker, now a year old..and she had a video of them at the park with her son in a swing. She said they probably looked like any mother and son at the park, but they weren't. It was their first time to do that, and they both knew how hard they had to "fight" to get to that normal moment of swinging in the park. Reading that pricked my heart. I know that feeling...I'm in that battle and am, in some moments, feeling like those days are getting farther and farther away. And I'm so thankful for the many people who are battling with us, who are faithfully asking God for his help and mercy on Asher's behalf. We still can't say thank you enough. I don't want much, I don't have huge expectations, I don't think...I just want to have my baby at home without wires and tape all over him. I just want him to be able to eat. I'm a little bit over not getting to take him anywhere for a year at the moment...this puts a lot in perspective. I just want him to feel well, to not struggle to achieve things other babies do without effort, and to thrive. I want the best for the son I am falling more and more in love with every day. It's been a slow process, but the older he gets, the more like a "real baby" he gets..the more impatient I get for our life at home together to begin. All these things I want, but God knows what I need. I was thinking about Asher wanting food so much the last few days, and how we haven't been able to give it to him because we know the "whole story" or we see the "whole picture"-- Asher doesn't know or have the ability to understand why he couldn't eat. He just had to trust us, and be patient and find happiness in his pacifier and in us comforting him! So, I know sometimes God doesn't give us things exactly when we want them because he can see the bigger picture. He knows what we NEED. So, we have to do the same as Asher..be patient trust Him, and appreciate what we DO have. Just as Asher had to appreciate the paci and his mom and dad trying to comfort him. Gosh, just barely 38 weeks gestation and 14 weeks old and he's teaching us so much.
Everything Asher and Bryan and I get to do together after he gets home will be sweeter, and deeper than we had ever imagined. Taking him home...will be a sweet, sweet day. I had to remind myself tonight that 6-8weeks is really nothing in the span of 18 years of being a child. It seems FOREVER right now. We are so tired of hospitals. But it's a blip. That's what I have to remember. Just as the "one pound" days passed..this too, will pass.
Lord, thank you for allowing Asher to grow past 4lbs and for healing his lungs! Thank you for the AMAZING support and prayers from friends, family, new friends, and even strangers. Thank you Lord for creating and sustaining Asher in the womb for 23 weeks, and now for 14 weeks outside of it. YOU are the Great Healer and we are so thankful. Please continue to have mercy on Asher's body and heal his esophagus and allow him to eat again by mouth some
Asher just got back and they were able to get a feeding tube down his throat. He did really well and is trying to wake up now. His esophagus is almost completely blocked by scar tissue or something. They did some biopsies to learn more, but thankfully they were able to get a feeding tube through a hole the size of a pin prick in his esophagus. They didn't try to clear the blockage today because of his size. The plan now is to wait until he grows about 2 more pounds before they go back in to try to clear the blockage by slowly stretching his esophagus over several weeks. The Doctor said that we will be here at least another 6 weeks to deal with all of this. Please pray for patience and endurance for all of us. We were really hoping to get to take Asher home soon but this will really extend that timeline. However, we are very thankful that he's at a place where they can help him get through all of this! Thanks again for all of your prayers!!!
Asher has had some issues with spitting up thick, clear mucous since we got back to Baylor. It's caused him to not really get to bottle feed much at all. It's been something that we've watched the last week to see if it resolves. Then, last night his feeding tube came out, and they could not get it back in. This morning he had a swallow study and they found a definite blockage in his esophagus. They did not have the capability to do a scope to really see what it is, so...we had to go back to Children's today. After getting there today, they also tried (with u/s guidance) to put the feeding tube back in his throat and down to his stomach but they could also not get it by the blockage. So, the plan was to have a stomach scope in the morning. Well, then we were called late tonight and told the dr who does those won't be there to do it until Wednesday. So, Asher's been on IV fluids since 2 am this morning..and will continue to be until Wednesday. This is a little frustrating because now he's much more aware of not eating than he was when we had to do this all the time when he was smaller. He was getting very agitated today before we left and cried louder than I've ever heard him! (We have been told over and over again that he has a great temperament and doesn't complain much.) So, we just feel so bad for him. He's been so good and patient all day today with 2 procedures, plus moving hospitals. He's such a good sport, and tough boy.
Please pray they find out what this blockage is, and can fix it..so he can get his tube back down to eat--and then hopefully we can start getting him back to learning to eat from a bottle. He was starting to do well at it, but this issue was hanging him up and we just didn't know it was there. Please pray for us to be patient and trust the Lord's plan..especially me as it's hard to watch him get upset and then chomp down on his paci and suck it so hard... I just know he wants some food and I can't give it to him!! Thanks so much for your prayers!!
Asher back at Children's..and being very patient with all he's had to do today. :(
We are thankful for some fun and less stressful days with Asher lately! It is fun to get to do more things with him now that he's a big boy and can handle more stimulation. He is SO good when we give him a bath, it's so fun! He is still having some issues with eating, but we know he will get it eventually. He has some mystery mucus causing problems. :(
Can't wait to add pictures of his Mama Gail and Dig Dig to holding him this weekend for the first time! (B's parents)
Happy 3 months to our sweet, strong, and precious little boy!!!
Birth and 3 months (above) ---- It's a little bit sad to look back on the birth pictures. He was so tiny, and so fragile. But, when I see those, I can't help but thank the Lord right then and there for saving Him and allowing our little boy to live and grow.
"The righteous man perishes, and no one lays it to heart; devout men are taken away, while no one understands. For the righteous man is taken away from calamity; he enters into peace." Isaiah 57:1-2
I'm learning a LOT from my book The One Year Book of Hope by Nancy Guthrie. She lost two babies to a genetic disorder- both at about 6 months old. But this book is not exactly about that, but she draws from her experiences of course. It's about any struggle, or hardship you face, and finding Truth in it. A devotional I read the other day talked about how death is painful..and meaning "death" of yourself and your desires- what you want and think you need in life. And the loss of a child too soon tends to teach you about putting your desires to death quicker than a lot of other things. I would agree that's a lesson I'm learning. And sometimes I get frustrated with myself that I can't just "get" that already. I know all the Truths about what's good in losing Titus, but it's a struggle to get that, and feel that, every single day.
Then today, I'm reading about how when her daughter was still here, she struggled with thinking about all the things she would "miss". And then God pointed her thoughts to all the things she would get to experience instead, and sooner than us. She realized her daughter was "missing" out on a lot of things that God intended for us to enjoy..but she was also missing a lot of evil as well- a lot in this world that's not fun or fair or good. And that where she is now is only perfect and peaceful. There are no disappointments at not begin good enough, no sickness, no annoying allergies, no broken dreams, no friends who hurt your feelings treat as a child or teenager..only perfectness. She said she began to see that her daughter's "quick deliverance" into complete perfectness was not as cruel or tragic as it seemed, but rather a gift. Here's the part that really connected to me- because I have heard and agreed with all of that before. She says "not that it felt less cruel or tragic. This is what I believe. It's not necessarily how I feel, but believing this makes a difference in how I feel."
That was profound to me. And I had a friend tell me recently that faith in her life is sometimes more intellectual than how she feels. That is making more and more sense to me. And it makes even more sense that choosing to believe God's goodness can actually change how you feel! Thank the Lord for that!
Titus is always on my mind a little I think..but more a little lately as we are getting settled back in Baylor Grapevine and we are in close quarters with other babies. There twins in there sprouting up like weeds! Plus, if you watch Grey's Anatomy..the little 24 weeker they've had on there has been all to real sometimes. So, little Titus has been more on my mind. And when that baby on the show passed away, and you could hear the little tiny breaths.. knowing those little tiny lungs were struggling to do their job ..well, it was just hard not to picture Titus. I asked Bryan if he did that. He said "no, that would had been really hard, he was already gone." Although he did tell me at one time that he did see Titus on the bed at first, while they were working on him, and his chest was rising and falling, but nothing else was moving. He looked very different compared to Asher who was very upset and trying to box and kick his way back into mom's belly! So, that image is hard sometimes to think on. The struggle of his lungs. But thankfully, he went very peacefully and quickly and his struggle was not long. And he's in beautiful place where he will never struggle again! So, after seeing that very vivid scene on tv of that tiny baby passing..it brought his death to the very forefront of my mind. And so, again God has blessed the timing of me reading this book. He has been so good to me in that every time I pick it up, something hits me right where I am!
I'm praying to continue to choose to believe how much better Titus's life is right now...in perfect peace in heaven and thanking God he got that gift as soon as he did. Titus didn't have to fight to breathe anymore like Asher did..and now he doesn't have to fight and work so hard to eat and digest food, and grow like Asher does..and any other struggle we see Asher go through, Titus won't have to. And that is a good thing, even though it may not feel that way sometimes. And I've definitely been comforted by these thoughts before. But I have to keep reminding myself I think. I think most of the lessons God teaches us, He doesn't teach us once and then it's over. We go back to it again and again. It makes me think of something being refined or purified..it's a several step process. I get frustrated and tired with myself that I can't just "get it" and move on. But that's me, I like to check things off the list. I don't think I can check off grieving well and move on! As much as I'd like to sometimes. :) And, I think also, God in His perfect wisdom makes that part of the lesson too..the fact that it's not a one time lesson or "easy" to learn. So, I'm praying that choosing to believe this, again and again will get easier..and the sadness I feel some days will continue to be refined to where it feels more and more like a deep joy. Not the flighty joy that has you jumping up and down. But that deep, wisdom- filled joy that is like a warm blanket covering you, soothing you, and embracing you with comfort.
Here's a picture of our sweet Titus. I love that he looks like he's smiling.
On a lighter note..we will be celebrating Asher's 3 month birthday tonight..so I will post pictures soon!!!
"Retired" teacher..taught 7 great years at Heritage Elem in Highland Village. Bryan owns his own business in Highland Village, TX. We have an amazing miracle son named Asher that we are so thankful for!