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...