One Month at Home- Isaiah 44:3

"For I will pour water on the thirsty land, and streams on the dry ground; I will pour out my Spirit on your offspring, and my blessing on your descendants." Isaiah 44:3

We've been home 1 month! So, he's just about 6 months old (next week) and his adjusted age or the age he is developmentally is 2 months! So, we will say 2 ages for Asher for a while. He has his actual age...from when he was born, and then his adjusted age, which is developmentally the age of his body and mind. Eventually...by the time he's 2 probably, it will all be one age and he'll look and act like a 2 year old!  I can really say this month has gone by very fast. Even though the pace of life is much different, it's still moving kind of fast. Sometimes it feels like a day might drag on, but really it never does. Before I know it, it's time for the next feeding and Asher's nap is over! So, it's been harder to find time and energy to blog. I recently gave that verse to a friend who has 24week twins in the NICU as an encouragement to her. I quickly realized that verse is for me too. It's a reminder of all God's done, and is doing in Asher and in us. 

Asher is doing so well at home! He's such a sweet little baby. He still isn't crazy about napping, but he's getting better. I think it's really funny (and slightly annoying) when I finally get him out of his bed after a long nap of off an on sleeping, and then he yawns at me for the next 3o minutes or so. And I just want to tell him "SEE? I knew you were tired and needed to sleep!!" Oh well. He's too cute to get too upset at just yet. He is sleeping like a CHAMP at night! We started trying that about a week after he got home because he was so sleepy for all the middle of the night feeds. So, it has worked pretty well! Some nights he stirs at 1 or 3, but we just ignore it and he goes back to sleep. What a blessing that is! No sleep is no fun. He's still eating some by bottle and some by feeding tube. He starts every feeding with taking some from the bottle. Since we've been home, he's rarely finished a bottle. And we keep adding how much is in there to make up for him sleeping at night, so poor guy can't keep up! He usually takes about an oz by bottle but some feedings he doesn't want to take any. We've been working with the GI clinic dr.'s that have been doing his dilations and trying to come up with a plan. It seems right now, his esophagus is staying open, so that means the stretching procedures have worked! That is a huge blessing considering the dr has NO explanation for why he had this stricture (narrowing) and so in the beginning, he wasn't sure if this treatment would work. However, Asher is still not eating well. We (along with all the smart people helping us) think that his struggle with eating is a combination of reflux, and being a preemie. Preemies often are averted to eating because of being born early, and being exposed to way to much too soon. They spend their first few months with lots of things put in their mouths and down their throats. A full term baby only experiences the joy of mom's breast, or a bottle right after they are born, and so they associate a positive experience right away with things in the mouth. Preemies have a lot of negative associations with things in the mouth for most of their NICU stay usually. Asher had feeding tubes, breathing tubes, suction tubes, and random suctioning a LOT. So, he has to learn and realize that now, things in the mouth aren't so bad, and hey, they fill up my tummy and make it feel good too! So, this will be a process. Today, I met with a speech therapist and she will be coming 2-3x a week to work with Asher. We are so excited about this! She feels he just needs some time, and help with pacing. He tends to tire himself out really fast and then he shuts down. She's hopeful he will be able to be a non-tube baby after several months of therapy. We hope so too! As long as his stricture stays open, then we know that his eating struggle has more to do with all of this, than with his "plumbing"! 

So, being at home and watching him struggle with eating has been a struggle for us in some moments. Feeding time is supposed to be sweet, calm, and bonding. Our feeding time looks different. There's crying and refusal, breaks to calm Asher down, and finally after a few tries, exhaustion for all 3 of us. Sometimes it goes well, and Asher is happy and politely refuses what he can't take. So, we've had to constantly re-align our expectations to whatever he can do at the moment, and being ok with whatever Asher's "best" is. I feel like the experienced parents out there are probably thinking..."yes, brace yourself for a lifetime of that!" I have to admit, we have SO much to be thankful for, but this eating business has really affected my heart some days. It's just I want the best for Asher. I think any mom does. And so, I don't want him to have to struggle with eating. And really anything if I'm honest. He's just a baby...literally a 2 month old! And nothing should be hard for him. He's had a lot of hard in his almost 6 months of life. I know he won't remember any of it, but we remember it enough for him! But I know whatever is hard for him (which becomes a hard thing in my life as his mom) is ultimately an opportunity for all of us to learn and remember Who is in charge and Who we need to rely on. Even knowing this,  there have been days I've been down about having a baby who can't eat. It's the same struggle I've had all along...even back to the infertility days. Whatever I'm struggling with is most sensitive. So, when I was struggling to get pregnant, all I "saw" everywhere I went were pregnant people who I assumed had an easy time getting there. When I was on bed rest, all I saw were healthy pregnant people who could carry their babies and do everything else in life they wanted to. After I delivered my sons, all I saw were pregnant people with strong cervix's who carried babies to term. Once Asher was in the NICU for a while, all I saw when I was out was moms with healthy newborns running their errands, something I knew I wouldn't do with Asher for 2 years! So, now that Asher has so much trouble eating, all I "see" are babies who gulp down tons of ounces in record time and don't bat an eyelash doing it! In all those scenarios, the lesson is the same, I think. Those times have and still do challenge me to "see" differently. Instead of seeing everything I don't have, choosing to see everything I do have. That goes against our nature and culture I think! We are "me monsters" as I think our pastor once said. It's all about me and what I want. That's ugly to admit, but that's really how my heart is a lot of days. We want more and more. And when we get that we want more with some more on top!

I am reading out of a devotional book called The One Year Book of Hope I read one this week with great timing (of course, this is one of the many things that makes God so cool). The verse for the devotional is, "Two of Jesus' followers were walking to the village of Emmaus. Jesus himself came along and joined them and began walking beside them. But they didn't know who he was, because God kept them from recognizing Him" Luke 24:15-16. The lesson is about being too busy to enjoy the presence of Jesus or appreciate what he's doing. It says "He's right here with us, and we don't recognize Him. We're so disappointed He has not come through for us in the way we hoped He would that we can't appreciate His presence." 

Ouch. 

That is definitely true for me. And I started thinking about, praying about, and remembering that I know several preemie mamas and mamas of babies in the hospital who'd LOVE to be at home and just dealing with a feeding issue and using a pump to help their baby eat. And when I think of myself just a month ago, I was SO ready to be home and didn't care if we had to do that.  I was ready to tackle whatever being at home meant because I knew it HAD to be better than driving to Dallas in traffic 2x a day. How quickly I can forget these things. And just the other day someone said to me something about stones of remembrance from the Bible and I was talking about how many parts of Asher are those stones of remembrance for us. In Joshua 4:5-7 it says "Each of you is to take up a stone on his shoulder, according to the number of tribes of the Israelites, to serve as a sign among you. In the future, when your children ask you, 'What do these stones mean?'  tell them that the flow of the Jordan was cut off before the ark of the covenant of the Lord. When it crossed the Jordan, the waters of the Jordan were cut off. These stones are to be a memorial to the people of Israel forever." So, the Israelites were crossing over into the Promised Land, and they came to the Jordan River which was at a "flood like" stage, and when the ark touched it, the waters receded, and they were able to cross. So, those stones were a way to remember not just God's faithfulness in crossing the river, but His faithfulness in all they had been through to that point. 

Asher is a living pile of many "stones" of remembrance of God's faithfulness. As I type this, he's sitting on the couch with me in his lounger pillow finishing eating (by tube) and snoozing. He's so tired at this feeding, he can't stay awake for it! I'm watching him and his steady breathing as he sleeps and that in itself is a "stone". His breathing. I remember posting about his breathing and the steady rhythm that God created breathing to work. And how Asher was, at that time, trying to learn that rhythm. He had to be reminded back then either by a machine, or a person rubbing him, to keep in that pattern so that his body could get the oxygen it needed. So many nights and days we watched those levels. We watched how many breaths he was taking, that was a white number and line on the screen. We watched how much oxygen was in his blood, a blue line and number. And then of course, his heartbeat and that was red. Many of those days I wondered when he could breathe on his own. Many of those days I wondered if he would. He was a very sick little boy for the first month and a half to two months of his life. His lungs were so bad at one point, they had to collapse both lungs just to let them heal. At that time he was on a ventilator with 100% oxygen. There is no further breathing support than that. There's no where to go for there if you need more help. That was one of the scariest times in his life for us! I thought for sure, and we were told it was very likely he would go home on oxygen. 

Then, within a week's time, he went from the ventilator, to c-pap (less support) and then to the nasal cannula (even less support)! We were AMAZED. I didn't expect to see the cannula until much later. And he remained on a smaller amount of oxygen until he was 39 weeks corrected. It was taken off, slowly, and he did great! I have a picture of that day, I LOVED looking at his face with one less thing on it! I was so proud of Him and so amazed and God's healing power in him. 

Asher's eyes are another "stone". He had some ROP- which is a product of being born early and needing oxygen support. It's unavoidable. When he was on 100% oxygen, Bryan asked a doctor "what about his eyes??" And that dr said "he needs to breathe before he needs to see". And so, we had to "let go" of yet another risk of being premature. Asher began to have weekly or bi weekly eye exams to check the progression of his eye damage. If it progressed far enough, he would need treatment to prevent blindness. By 44 weeks, his ROP had completely resolved. His eyes looked great and we were just told to follow up with an eye exam in 6 months. He could still need glasses one day, but I have bad eye sight so his chances of that were 50/50 either way! 

Asher's brain is another "stone". It is VERY remarkable that Asher did not have a brain bleed. They are very common for babies born before 30 weeks, and often cause developmental issues. Asher may still deal with some developmental issues because of all the different medications he needed when he was born, but that we won't know until he's older, and that's all in God's hands as well. 

Asher has a 2 inch scar on his back that is another "stone". At 1lb 10oz, he had heart surgery. He had is PDA clipped. Every baby is born with a PDA, and full term babies PDA's close when they are born...when they take their first breath. So, preemies, and especially micro preemies (born 2lbs and under) usually need intervention to close the PDA so that blood can efficiently flow through the body to all the parts it needs to go. Once the PDA is clipped, it's fixed, and that problem is over. Asher did so well after he recovered from his PDA surgery. 

Those are just a few of the many stones of remembrance God has given us over the past 6 months. So, when I get sad about his eating, I have to stop and remember all God has done. He has done SO much. He has shown His power in this little boy, we have really witnessed miracle upon miracle in him. And we are so quick to forget and ask for more! Geez, thank goodness we serve a God of mercy and patience. I'm thankful for that too. God knows I will struggle with this. He knows it will be a process. It's hard not to compare, and want "normal". But again, I am reminded that normal doesn't and shouldn't define my joy. Circumstances shouldn't define my joy. I wish I could say they never did. God should always define my joy, and when He doesn't because I choose that, all I can do is pray for forgiveness and His grace and mercy to change my perspective. 

So, here's the perfect way to end this blog-- with some visual proof of these "stones"- Asher's newborn pictures! We had his newborn photo shoot a couple of weeks ago and it was so fun! That is one of those "normal" things I longed for and it was a huge blessing to get to do it. We had an amazing photographer who donates sessions to NICU families. I wanted to do pictures with Asher once he had everything off his face, but now we aren't sure how long we'll have this tube, and I wanted to have newborn pictures while he was still a newborn! So I asked the photographer if she could edit out his tube. She said she could! So, we have several sweet pictures of our beautiful boy with nothing on his face. This is how I "see" him when I look at him, but it was SO special to see these wonderful pictures of him looking like the big, healthy, beautiful boy he is and with no wires/tubes attached! 

Asher's Room

Asher's room is just about complete, finally! I'm still working on a shadow box of all our NICU keepsakes like blood pressure cuffs, c-pap head gear, leads, tiny diapers, mom and dad name tags...lots of little things that were our "norm" for 5 months! I think I'm going to need a bigger shadow box after I gathered up all we had. The desk and chest of drawers were my bedroom furniture growing up, and before that they were my mom's furniture! We will add the glider we got to his room once he is staying in his crib. It was fun to work on his room in the midst of our long nicu stay. Some days it was a fun escape, and others I avoided it because it made me sad because I wondered when he'd really be here and be using all these things we had for him. It's so fun to have him here! Exhausting some days...but fun and a huge blessing. I still can't believe I walk around my house with a baby and walk into my room and he's there sleeping. Just incredible there's this little person with us God created in me. Since I wasn't pregnant very long, I have to remind myself sometimes I actually carried him and he didn't just come from the NICU! 

On top of chest of drawers

Monthly pictures

Wall above the desk/changing table area

We are so thankful for this beautiful crib from Bryan's parents!

Above the crib 

   

5 Months Old!

"I will lead the blind by ways they have not known, along unfamiliar paths...I will turn the darkness into light before them and make the rough places smooth. These are things I will do; I will not forsake them." Isaiah 42:16

Happy 5 Months to our sweet Asher! 

It was so exciting to take these pictures at home this month in Asher's crib! It's been surreal to have him at home a week now. We still look at him and say "he is really ours??" My life changed dramatically from driving to Dallas 2x a day to driving no where all day! It has been so nice to be around the house. We were getting so drained driving to Children's everyday. It's nice for Bryan to come home, and we eat dinner together at home, and then relax some! We've waited a loooong 5 months to do that! Asher still has difficulty eating. Sometimes he can take 1/2 of his bottle, other times he takes most of it, and then other times he takes hardly any at all. We put whatever is left down his tube either by gravity (just holding it up and letting it drop down) or with a pump we got from the hospital before we left. Sometimes feeding times are hard because he's often uncomfortable. Other than that, Asher is a sweet and sleepy boy most of the time! He is quite grumpy in the evenings, and doesn't want to fall asleep. But, I hear this is a baby thing. They all must have gotten together at some point and decided that evenings was a good time to give mom and dad a hard time. S.T.U.B.B.O.R.N. Not sure who he gets that from! 

We are so thankful for all the Lord has done in Asher! It is remarkable how He's healed this little boy. We were told over and over again before we left the hospital that it's amazing that he is not on oxygen, had no brain bleeds, has no ROP, and has no other major issues besides this random stricture. The nurse practitioner who checked us out when we left told us she couldn't think of another 23, 24, 25, or even 26 weeker who had done as well as Asher and she's been in nursing for 32 years! We know God acted on Asher's behalf because it was His will, and because He wants to make Himself known through our lives and Asher's. But we also know He hears the prayers of His children, and we KNOW so many prayers were sent up for Asher, and again...we are overwhelmed by the number of people who already love our little boy and ask about him, and still pray for his full healing! We will never forget the love we've been shown these past 5 months. A lot of times people want to keep their struggles private because they think it's easier, or they are embarrassed, or just don't want to deal with questions from people. I have to say, that being so open in this journey has blessed us immensely. Because we all have hard things in our lives, we all have moments of struggle, of doubting God, or questioning Him. Sharing this with, literally, the world has done more in my soul and Bryan's than anything else in our lives so far. We never want to do it all again, but we can look back and say we are thankful for all of it, and there are a lot of painful moments to look back on. When I think of my emotions shortly after coming home from the hospital and then throughout the last 5 months, it can bring tears to my eyes to remember the pain we've experienced. Why am I thankful for that? Well, for one...because I now know a deeper pain than ever before. And God has already put my knowledge about that to work. I can truly relate to others experiencing similar pain. And THAT is a blessing, and makes it worth it. To see "beauty come from ashes"..that is God's work. And where He works, there's always a beautiful picture as the result. And seeing it's beautiful is sometimes a choice we have to make. Asher is a big part of that beautiful picture for us. He is a perfectly formed baby boy. He's amazing- and my prayer is that every time we marvel at how cute he is, or how well he's doing, that we see God alone. Not "luck", not an advanced medical world who had the ability to save him, not something we did or created with our own power or strength, but God alone. 

I also want to start writing to Asher on here as well. I read my friends blog message to her kids yesterday and I love this idea! 

Asher you are a sweet boy. I love being able to stay home with you and hang out with you everyday. It's something I have been waiting to do for a long time. I just can't believe you are really our baby! We feel so blessed to be your mom and dad. You love to cuddle with mom and dad on our shoulders and you dig your head into our necks and under our chin. You usually fall asleep that way. But sometimes you hold your head straight up and look around! Your neck is getting so strong! When you are awake, you like for people to talk to you, and you like to focus on them. You are trying really hard to eat from your bottle right now, and sometimes it is easy and other times it hurts you. This makes us so sad to see you sad! But, hopefully the more the doctors work on your esophagus, the easier it will get. You always try at the beginning of eating to take from the bottle. We are so proud of you for always trying and giving it your best. We love you so much and we thank God for you everyday! Happy 5 month birthday!! 

 From 1 day old to 5 months old...wow! 

Sweet boy! 

First time in my crib! 

Asher is Home!!

"You have turned for me my mourning into dancing; you have loosed my sackcloth and clothed me with gladness, that my glory may sing your praise and not be silent. O Lord my God, I will give thanks to you forever!" (Psalm 30:11, 12 ESV)

We are beginning a new phase in our life with Asher today! Because of the Lords great mercy, our miracle boy born at 1 lb 2 oz and 17 weeks early is on his way HOME after 147 days in the nicu!! Your prayers have played a HUGE role in Asher's healing. We do not have words to express our thankfulness! We have been told again and again how amazing it is that he has done so well. We know that's all the healing power of our loving God! Please pray for him to continue to grow and stay healthy! Please pray for us as we continue to trust the Lord with Asher. We are used to knowing his heart rate, breathing rate, and how he's oxygenating and he won't be hooked up to any of that at home!

Asher will return to children's a few more times to get his esophagus stretched, so please also pray that continues to go well. He's going home with a feeding tube just in case he isn't able to eat all his food by bottle, or in case his esophagus begins to close up again. We were excited to be tube free last week, but after this weekend and the frustration of him not getting to eat- we are happy to keep that tube in for now!

Thank you again for ALL the love and prayers we've received over the last 6 months! We are forever changed, and blessed by them and by this entire journey. We will never forget the many nurses, nurse practitioners, doctors, respiratory therapists, physical and speech therapists at Baylor and Children's who watched over Asher day after day. We will never forget nurse practitioners who stayed up at night worrying about Asher. You all loved on Asher like he was your own, and you were and always will be a part of Asher's family. The passion you have for your job is a tremendous blessing to the patients you serve!

We are hoping for calmer days ahead, and sweet days of loving on our baby boy at home. And we couldn't be more blessed by God's timing, today is our 4 year wedding anniversary!! Couldn't ask for a better man to be by my side in these past 6 months!

Getting in the car! 

On the way out the door! We unhooked the monitors just before this! 

Car seat..good thing I have my paci, I'm not sure about this. 

Praise the Lord, I'm home! 

My sweet friends decorated! So fun! 

7lbs and NO TUBES!

Asher is now a little over 7lbs!! He also got his feeding tube out again yesterday and they decided not to put it back in and see how he would do with his feeds. He's been taking MOST of his bottles at every feeding!! We are praying he can keep it out, as it causes some irritation and probably makes eating a little more challenging with that back there. We are so excited and just in a constant state of "can you believe he's this or that??" We are beyond thankful for all the Lord has done and healed in this sweet boy! We KNOW the many prayers said for Asher have been a HUGE part of his healing and growing so well. We again, thank you and everyone who you know who asks you about Asher and tells you they are praying as well. We continue to hear those stories and they continue to overwhelm us! We will hopefully have our miracle boy home before July! We will see..NICU life is very unpredictable. Thank you again for prayers for Asher... he will have another dilation this coming Monday. Please pray it goes as smoothly as the others, (risk of tearing the esophagus) and that he is able to wake up quickly, get off the ventilator, and get back to eating and feeling good. Thank you so much!!

Enjoying a big boy swing the NICU let him borrow. 

Showing off his tube-free, tape-free face! 

Really posing now...this is ALL dad! 

Father's Day- "And these Words that I command you today shall be on your heart. You shall teach them diligently to your children. " Deuteronomy 6:6-7

   We celebrated Bryan's first Father's Day today! What a blessing it is to have a son, and especially our miracle boy Asher. We are beyond thankful. Bryan is such an amazing daddy. He EVEN changes DIRTY diapers! (Something he swore he wouldn't be able to do!) More than that..he's an amazing provider for us, and loves us both so well. He is so sweet with Asher and gentle, and I just can't wait to see them together in the future! Asher already looks so much like his daddy and if he acts like him too...well, I'll have my hands full!! I'm also so thankful for how Bryan took care of Titus. I'm so proud of all he did for him when I couldn't be there. He's the only family member Titus was with before he passed away, and I was blown away with how his daddy proclaimed, and still does proclaim God's goodness through all of this- even in the moments immediately after watching Titus pass away. His strength is rock solid and I know that's all the Lord, and I'm just so thankful that Jesus got a hold of my husband's heart when he did!  I know I am a better woman, wife, and mother because of Bryan. I know my son will be a better son, and hopefully one day a better husband and father because of the example he grew up with. I look forward to all the joys and challenges of raising Asher together with my Godly, loving husband.

ALSO- Asher has been a CHAMP with the bottle the past 4 days! On Thursday the Dr's decided he could start trying to take a bottle since he had one dilation to stretch his esophagus. He blew us all away! He's been taking anywhere from half to his entire feed from a bottle on every feeding! We are so proud! He has another procedure tomorrow to stretch it again. Hopefully it happens in the morning so he can get back to eating sooner than later! He's becoming very very aware of eating, and is READY to eat pretty much exactly 3 hours from the last feeding. Guess he's liking routine...like his momma. :) And his love for eating has helped him gain weight too! He's up to 6 lbs 11 oz!! 

Update after Surgery...

(Yesterday) Asher just got out of surgery and he did great! His esophagus dilation went really well and the stricture is a lot smaller than expected so we hope that means that he will be able to have less dilations than we thought. He also had 2 hernias repaired while he was under and they went well too! The doctor planned on leaving him on a ventilator for 12-24 hours after surgery, but he woke up quickly and pulled out his ventilator tube which was a great sign that he's doing well and able to breath on his own!

We plan on having the next dilation procedure next Monday. It's hard to imagine having to go through all of this again in 6 days, so please pray that he continues to do well with no side effects and that this heals his esophagus! Thank you again for all the kind messages and continued thoughts and prayers for our sweet Asher!