Walking with Jesus

Here are my girls! Today is Micah Ahava Elise's 100th day!     So, what are some of our favorite things about Micah?   1. She is alive! 2. All her labs are normal 3. She is 5 1/2 pounds 4. She is awake a lot 5. She is breastfeeding 3 times a day 6. She is 14 weeks, 1 day (37 weeks, 5 days gestation) 7. Her steroids have stopped (really this time) with no signs of stress 8. She smiles 9. She makes sounds while she is eating 10. She burps! 11. Her eyes look good and healthy 12. She has a strong heart 13. She had a good echo-cardiogram 14. She squeaks 15. She follows you with her eyes 16. She likes to "nuggle" 17. She is progressing on her O2 support 18. She is strong 19. She is really cute! 20. She has done everything they have asked her to do 21. She already has lots of friends (including you!) 22. God has amazing plans for her life 23. She has 10 toes 24. She has daddy's hairline (temporarily) 25. She is an answer to prayer 26. She...

Not much has changed since our lat update, but I wanted to communicate something at least. I did make one mistake in my last update: Micah is still on minimal steroid support this week, and will try going completely on her own next week. We should also be breastfeeding 3 times per day by Monday. They continue to go up on Micah's feeds and that caused some difficulty with breastfeeding yesterday (she was still full), but she is doing much better again today. Thank you for your continued prayers. We need strength to finish this race well. There is so little yet to be done, but it is all critically important and painfully slow. Long days. Long nights. And, all of them flying by so fast. :-)

It has been a busy few days for Micah Ahava Elise. She has gone up on her feedings, including now getting two meals directly from Mama every day. She may go up to 3 by the end of the week. This is a huge deal, obviously, and Micah has done exceptionally well. After such an extended time on a feeding tube, and due to prematurity, many babies in her situation have a difficult time coordinating the suck, swallow, and breathe reflex in order to feed effectively. Micah, however, seems to be a natural. After she eats with Mama, she is usually wide awake for about half an hour before falling into a deep, contented sleep. In fact, she is usually so satisfied, that the nurses have to wake her for her next scheduled feed. Micah prefers to be on her belly, which is fine for now. We know this because of her physical cues, and the O2 levels in her blood (read by a meter strapped to her foot). When she is stressed, her O2 concentration goes down, because she is not breathing as f...

Micah Update: Micah is doing really great right now. We can hold her anytime we want to now (as long as she tolerates it). She can breastfeed once per day, and to say that she is doing very well with that is a real understatement. She switched to vapotherm last Tuesday and has done very well on it. Her eye doctor's latest evaluation was "It looks like there was never anything wrong" with her eyes. She has had two tub baths (loved them!). And, she now weighs an amazing 4 pounds, 14 ounces! Overall, Micah is doing amazingly well, and we may even begin working toward home as early as her due date (September 13th). We feel incredibly blessed, and look forward to achieving Micah's remaining goals before we get her all to ourselves for a little while. We do plan on having a celebration for Micah, but not until her first birthday. The doctors have encouraged us to avoid groups (especially at the holidays), to keep her visitors very limited, and have as much "us...

Micah did really well on the Bubble CPAP. And, she loves to be swaddled. Of course, we keep a close watch over her at all times. Micah celebrated her 12 week birthday on Monday. Gestationally, that's still only 35 weeks, 4 days. Even if she were born today, she would be a preemie! To celebrate, she got her fingernails trimmed for the first time. Snuggling with the CPAP on is a team effort. Either that, or Olivia is trying to strangle me. Lots of laundry. Lots of pink. Lots of joy. Today we had a phone call from Micah's doctor... Surprise! Micah's has done so well and her labs have been so good... N O   M O R E   B U B B L E   C P A P  ! (It will take a couple of days for her nose to unsquish completely) Mommy said she's missed Micah's head. Without the CPAP cap, they have finally been reunited. Micah's hair is long enough now to comb!

Micah had her first bath today. We have some pictures, but they are on Olivia's phone so we may try to upload them later. Frankly, some of them are hard to see, which brings me (quickly) to the point of this post. Micah still needs prayer. Almost two weeks ago the doctors changed Micah's nutrition. The hospital policy is that at a certain point babies have to change from human-based breast milk fortifier to cow-based breast milk fortifier. Of course, it is apparently pretty common knowledge that newborns do not digest bovine dairy products well, if at all. Unfortunately, Micah needed certain mineral supplements in addition to extra calories, and this seemed to be the only answer. Micah has not reacted well. The fortifier has not agreed with her, and she has had diarrhea for over a week (they say it is normal), leading to a bad diaper rash, which has caused skin ruptures on both of her butt cheeks and lesser sores over the majority of her rear end. Add this to the swelling...

The first time Olivia saw Micah face to face was so different than what I am looking at right now.  Right Now They brought Olivia through the back entrance to the NICU on her bed on the way from Labor and Delivery to the Recovery floor only a half-dozen hours after Micah was born. (The transporter wasn't very good at steering, and he ran my sweet wife into the wall more than once.) Micah was in her incubator, and Olivia couldn't quite see her. She sat up as high as possible and leaned over as far as she could but still couldn't quite see inside. I could see the panic starting to build in her. After all, this was to be their first meeting. I thought she was going to cry, because her heart yearned for our little Ahava. Today, she holds her skin to skin. No bed barrier. No IV pole banging into things. No steering issues. Nothing separates them physically. Even the CPAP Micah needs for breathing is easy to see past. Micah is learning to know Olivia, and Olivia is l...

WARNING! THIS UPDATE CONTAINS SOME VENTING.  :-) I don't want to be up right now, but I am. I don't want to be wrestling with the frustrations I am wrestling with, but I am. I don't want to be out of control, but I am. I feel like I'm trying to surf the internet on someone else's cell phone in an area with bad service and a sign-on page that never really lets you sign on. And, I don't like the internet to begin with! Isn't that funny? Does anyone else ever feel that way? Am I the only one? I especially don't like AOL. I don't like their format. I don't like their ads. I don't like their "news" articles. I don't like the way it takes over your computer. I don't like how slow it is (no matter how new your computer is). I don't like how you can't decide what you see and what you don't. It is just too much, too big, too bulky, too, one-size-fits-all, too in-your-face... The fact that my sweet wife uses AOL on o...

Please visit Olivia's site for the latest updates. I am posting the links below. She will have more to write in the future, I am sure, and I will try to keep you posted. Sorry I haven't been on myself recently; I'm just at that point. I am tired, and it takes all of my energy to keep up with life here, much less report on it. We continue to be so very thankful for your prayers, and need them now as much as we ever did. We especially need prayers in relation to Micah's caregivers. The doctors and nurses present themselves as "a team", all capable, and trustworthy with our daughter. But, this self-assessment is overly optimistic. In any group that large there are less capable people, and now that Micah is getting older and more stable, some of these have begun to be assigned to our daughter. Most are still fine, a few are fantastic, but a couple in particular have required our direct intervention. often, we just don't know what Micah's care will be lik...

 (photo of a glossy print, sorry) Micah's eye procedure went very well this morning. It was quick, easy, and should produce some great results. The doctor will return tomorrow to check on her progress, because it starts to work that quickly! We were able to be there with her, and our Ahava is recovering nicely. Surprisingly, this was actually Micah's first truly invasive procedure. She really is doing well overall. There are some many potential issues for micro-preemie's that she has been spared, because of God's grace and your prayers. (I know, she isn't a micro -preemie anymore. She is closer to 4 pounds now than to 3. Perhaps I'm in denial about how quickly she is growing up.)  (same photo, different lighting) I'll try to explain the picture a little bit: This is Micah's eye, or more precisely, a portion of the back of her eye. The image the camera takes is circular, giving the illusion that you are seeing the whole thing now matter ...

Micah will be getting injections for her retinal development tomorrow at about 9 AM. This is sort of like a "reset" button for her eye development, and should allow the arteries and veins in her eye to return to their normal developmental track (interupted and forced into clumps by the early extra Oxygen her body needs out of the womb), thus preserving the sight she has (newborns only have centralized sight) and allowing her distance and peripheral vision to develop. This procedure is fairly normal for preemies, and helps prevent severe nearsightedness. Just a few years ago, the only way to save her current site was to destroy the potential for continued growth and development. Please pray for this bed-side surgery as you continue to pray for her to do well on the Bubble CPAP (see previous post).

Her face keeps drawing my eyes up from the keyboard. She is breathing, really breathing, without a tube down her throat for the first time. 9 weeks and 4 days later. She shouldn't even be here yet. Then again, she really should. She wiggles. She squirms. She sleeps. She sleeps a lot. It's one of the best things she can do right now. She is so amazing. She has no idea. It's hard to imagine how someone so small could have been so much smaller. It's hard to imagine how someone so alive almost wasn't alive at all. It's hard to imagine how someone so suddenly important to our world can barely recognize that there is a world at all beyond herself. I haven't even tried to post in days. There have been too many changes; too much going on in Ahava-land: vent settings, vent changes, amazing growth and weight gain, increases in portions of Mama's milk.... Olivia has posted a couple of blogs, so please read those. She posted the first on Wednesday and the secon...

I've made a lot of poor choices in my life. I've been selfish when I should have been giving. I've been angry would I should have been content. I've been jealous when I should have been rejoicing for someone else's good fortune. I've lied to, used, and neglected people in my past, when I should have treasured and valued them. I've fought when I should have reconciled. I've exploited when I should have protected. Again and again, I've chosen myself over others and my way over God's way. Most of my biggest regrets in this regard are further in the past, when I was younger and still figuring out what it meant to become a man. I still make mistakes, and I've made some big ones, even since Olivia and I got married (5 years, 10 months, and almost 22 days ago). But, for some reason it's those bad choices from my formative years that are keeping me up tonight: High School, College Undergrad, even Junior High. They keep playing over and over in ...

Micah continued to make some progress last night. All of her levels have improved some, but still aren't where we would like to see them. Hopefully, we will get there either later today or tomorrow, and then she can get back to work growing into the wonderful child of God I know she will become. Thank you for your continue prayers. This was a discouraging several days, and I've been challenged to claim the truths I know in the midst of it. Here are seven: 1) Jesus loves our family. 2) God is in control. 3) Micah is God's miracle. 4) Micah will thrive. (Remember, God told us early on that this would seem like the hardest thing we ever did, but that He would not fail to reward those who fear Him.) 5) God will restore ALL the enemy has stolen. (Promised in 2004) 6) By God's grace and the Spirit's power, we can do this. (All things are possible with God.) 7) I will not become lost. (This traumatic series of events will not make me forget who I am in Chri...

There really is no way for me to properly thank all of you who have been praying for Micah over the past 24 hours. I've literally lost track of the text messages and prayers. So, while it is hardly adequate: THANK YOU!! Micah began to improve a little last night right before we left, and only lost a little of that ground overnight. Her blood gas (CO2 and Ph) is now slightly better, which indicates that we may be dealing with an infection (as we had hoped) rather than a broader, more critical failure in her lungs. She has also been able to go down a few points on her O2. They even backed off on her ventilator pressure, which should help her be more comfortable. These improvements are slight, but they are improvements, and we are very thankful for them. The next couple of days are still going to be trying, and all three of us need your continued prayer support. There is no way we can do this without Jesus.  I really do not understand how non-Christians survive! W...

Micah is not having a good day. Actually, the last 48 hours have been pretty bad. She seems to be trending the wrong way right now, and we can't be sure why. She may have an infection, so they are treating that.  Her O2 support is the second highest it has ever been, and her CO2 has been creeping up as well. She already had a blood transfusion, but her lungs simply aren't exchanging the air the way they need to. Additionally (though far from her biggest problem), she just had her first eye exam and will need another exam early next week to determine for certain if she is having retinal blood flow issues (it appears she is) and needs treatment. We are concerned, but hopeful. We don't really have any other choice. We thought we were past the life and death stuff, but right now things could go either way. They expect good results, but they aren't the only possible outcome.It all depends on how she does over the next 4 to 5 days. Additionally, she had a really bad nurs...

Micah is now officially 3 pounds! I can't believe it. Really, I can't. I also can't believe she is over 8 weeks old! She is doing pretty well, but our days are not without incident. Today is an example: Micah had a rough night, needing more and more support. Her CO2 levels in her blood had been creeping up. She looked pale (low red blood cell count). Her oxygen needs were increasing. And, she was tired from fighting a recent infection from an old IV site. Her caretakers also discovered that her breathing tube wasn't able to keep her lungs open as much as she needed, and it needed to be adjusted by about 5 cm. So, an x-ray was taken and her tube was adjusted, a blood infusion was given, lassix was administered again (repeating yesterday) to combat edema (water-based swelling) by making her pee, and pressure was added to help re-expand her lungs. Now we wait, probably for most of the day, to see how she improves. This is the roller coaster. Early results seem good: ...

Please visit Olivia's site for an update she wrote on Sunday. It really provides a glimpse into her heart. Thank you for your continued prayers for our family.

Here are some recent photos. I played with the idea of having a competition to see which of the first two photos of Micah was the cutest, the one with Mama or the one with me. So, if you'd like to express an opinion, please do. I can't decide. BTW Micah is now 2 pounds, 13 ounces!!!  Micah and Papa Micah and Mama 

This week we had a Care Meeting for Micah. We met with Micah's primary doctors and nurse, a nurse practitioner, social workers, a respiratory therapist, the nurse manager, and some others who have regular interaction with Micah or ourselves. It was a very good meeting and we have a good idea what to expect for the next couple of months. Micah's progress from here will be slow (and hopefully steady). It will be measured week to week, rather than day to day. Her biggest issues are her lung development and weening her off of steroids. All mirco-preemie's have lung issues, but the difficulty getting off of the steroids is less common. Progress in this area will be measured over months. Trying to reduce them at closer to the normal pace has been the cause of Micah's worst days thus far. She has moved beyond the danger of several frequent issues for micro-preemies, and unless something particularly hard and unexpected happens, Micah survival is no longer an issue. The big...