Category: Uncategorized (Page 4 of 5)

I’m not sure why today is an emotional hardship.  But I’m being honest and saying it is.  Perhaps it’s because of a friend-of-a-friend’s loss of a child yesterday (I don’t even want to label NICU baby or Preemie–it seems to not do the precious LIFE justice).  Perhaps it’s because Struthers isn’t having a great day, and he slid backwards over the last 24-hours, taking only one feeding orally and seemingly in pain all day long. Perhaps it’s because I’m facing a hysterectomy in the coming weeks, with a date to be determined but imminently hanging over my head.  Perhaps it’s because I know we will surpass 100 days in the NICU, a mark I once thought was unbelievable, and I pitied the NICU family we met who had been there that long.

I realized also that while I sometimes share my emotions here, I rarely share the images that capture the ‘rough days’.  And just as it is difficult to describe the emotions, it’s difficult to tell you what’s “wrong” on these bad days.  But a picture is worth a thousand words. Thanks for the continued prayers!

My sweet little Struthers–

Happy Due Date to my 3-month old! You, my child, have shown us God’s miracles over and over for the past 9 months. I’m so grateful that He chose us to be your parents and that He brought you here in His perfect timing. You were too early at 27 weeks, but you were right on time in God’s eyes. You were too small at 1 pound, 12 ounces, but you were perfect in God’s eyes. You were too fragile, but perfectly formed in God’s eyes. I’m so proud of you, and can’t wait to see what God has in store for a very special little boy.

Mommy loves you. Daddy loves you. Jesus loves you!

Please accept my apologies for the lack of updates lately. We’re in a strange holding pattern, really, and it’s difficult to describe the ups and downs of each feeding and care session, each day and each week without reliving the roller coaster of emotions myself. As I’ve mentioned before, I prefer to just move forward…and that we are slowly doing in typical NICU 2-steps forward, 1-step back fashion.

–Struthers is gaining weight each day, and is now at 6 pounds, 0.9 ounces! He still fits in some preemie clothes, and the newborn ones swallow him whole! It’s also exciting to Mommy that he’s now in a diaper size we can actually buy in the store!

–He’s now back down to 1.5 liters per minute on his VapoTherm (high flow), which is where he was when we left Denver 3.5 weeks ago. We attempted to wean him down to 1 yesterday, but that didn’t go so well, so he’s back at 1.5 and will stay there at least a few more days.

–In addition to his respiratory issues, Struthers has struggled mightily with reflux. A common problem for newborns, especially preemies, it is bad enough to prevent him from what we need him to do now–feed and grow. So he’s on Prevacid for now and spends much of his sleeping time upright or at a sharp angle. We may have to discuss other options soon, as he’s showing signs of not wanting anything in his mouth, and that could present a whole new set of issues.

–When do we get to take Struthers home? Who knows! Last Sunday, the attending Neonatologist said he thought he’d still see us when he was back on in 2 weeks (there are 3 of them that rotate through a week at a time). On Monday, Struthers was a rockstar and did three full feedings NORMALLY (not through the NG tube) back to back, and the nurse asked if we were ready to bring him home and said it would go very quickly from there. Then the rest of the week happened and the attempted wean on Friday left me wondering if he was EVER going to come home!

–Tonight I write this post from a hospital room, where they are having me ‘room in’ for a “feeding challenge”. Most preemies do much better with a bottle and go home taking most of their feeds in that manner–but not Struthers! He much prefers the ‘real thing’, and the physicians are hoping that my availability to provide that through a continuous 24-hours will perhaps get him over the feeding hump, help with the reflux, and give them a better idea of how ready he is or isn’t to cease the tube feeds. I was super excited about this, simply because I’ve been waking up every night anyway to pump, and I’ve so longed for the ability to roll out of bed and cuddle with my son. Just a little incentive works wonders!

–UPDATE: The Feeding Challenge was just that…a challenge. He definitely took more orally than he has through the night, but he’s still struggling so much with the reflux that he often didn’t want to take anything by mouth, in any manner. So this Sunday morning brings a weary and discouraged Mommy whose heart is breaking and wants to take away the pain that’s so bad it makes his throw his head to the right to cut off his airway. It’s such a Catch-22. We could remove his NG tube and the reflux would likely get better since the tube holds his sphincter open, allowing the acids to come back up. But we don’t know yet if he’s strong enough to take all his feedings orally, and we don’t want to give him an aversion to having things in his mouth if we take away our tube feeding option and have to force feed him. Ahh, preemie problems…

–Tomorrow I will go back to work at 50% time. As usual, my employer is being very flexible, and I would expect that we will get into a routine with ease. And then that routine will change when it’s time to bring him home.

I’ve been dealing with a lot of grief lately, and that’s a difficult thing for me to even admit, especially when I see much more tragic stories and things happening around us. And I know we are so blessed to be where we are in all this, so then I feel guilty for even thinking of some of these ‘losses’, because I’ve really lost nothing, only gained, right? Most of my grieving has to do with the fact that none of this has been normal, and yet life must return to normal for me. In other words, I’m grieving that my “bonding time” with my child has been spent in the NICU, with well-meaning caregivers limiting what you can and can’t do with your child. I’m grieving that he’s three months old and hasn’t been out of the hospital, much less had cute little newborn photos made. I’m grieving that I’ve never been awakened by his cry in the night and been able to comfort him. I’m grieving that even when we bring him home, we can’t take him out in public, go show him off at work, have a welcome home party at the house for him, or possibly not even get those photos done. Some of my closest friends and lots of family near and far have not met my child, and might not until this summer…that’s tough on a lot of fronts. I need their support, I need them to see how healthy he is one minute, and how very fragile the next. And I know every new mom deals with the difficulty of going back to work…but most of them have had at least a few days at home with their child. So my grieving is a combination of the stress of going back to work with a child still in the hospital (undoubtedly also mixed with a little guilt), and not knowing when that will change or what things will look like when that long-awaited discharge day comes. And rooming in on the “normal” Mother-Baby Unit…well, that was a sobering reminder of how different and lonely our journey has been. So, with that said, your continued prayers are appreciated. They are carrying me right now, because though I’m praying and at times have literally felt His peace envelop me through this, sometimes I get weary of just crying out to him or plain don’t know what to say. As Struthers is “feeding and growing” with his own little struggles, God is truly “feeding and growing” me with my own share of struggles as well.

I think we’ve finally hit our stride at SFMC, though it took a bit of time for all of us to adjust. It is wonderful to be home, but it’s a bit like I’ve been away in another world. A friend asked me the obligatory “How’s it feel to be home?”, and I’m sure was somewhat surprised by my answer. The truth is, it’s crummy right now. While living in Denver, my priority was only to care and watch over Struthers (and occasionally feed myself too). Now at home, I still have the opportunity to be right at my son’s bedside all day long, but there are other priorities I know in my head I should take care of while Struthers is in fantastic care. So now there is a daily choice…and it’s a difficult one. Because while I know in my head that NOTHING ELSE matters, not the nursery, not the mail pile, not the dishes, it’s impractical and perhaps avoidance for me to sit by Struthers’ bedside while he sleeps all day long. Perhaps God knew I was going to need this transition point. After all, I will transition back to work in just a matter of days (date TBD). For now, I have the opportunity to be home and get a few things done, but still also spend a good chunk of everyday with Struthers. All in all, we are adjusting well to the move…though sometimes it seems weird to just do normal things like prepare and eat dinner at our kitchen table, or watch TV together at night, or go to church together.

Update on Struthers:

–10 weeks old today and 5 pounds, 2 ounces! But he’s still 3 weeks away from his due date…

–The move to altitude has really wiped him out, but I’m glad we did it now while he still requires hospitalization. He still has alert times every now and then, but they’re not quite as often as they were in Denver. So he sleeps hard most of the day, not unusual for any newborn, really.

–After an attempted wean last week, Struthers is back up and remains on 3.0 LPM of high-flow oxygen. To put this into context, he was on 1.5 in Denver. But again, altitude is tough for anyone to adjust to, and a preemie with underdeveloped lungs is no exception. The medical team is happy with where he is right now, and says it will just take a little time. I’m glad they aren’t pushing to wean too hard because I’ve seen him slide backwards a few times when he just wasn’t ready.

–The high-flow oxygen makes it difficult to swallow, so we haven’t pushed the oral feeding too much. One of his therapists gave this illustration: Try to hang your head out of a car while going 60mph. Open your mouth against the wind and try to swallow. That’s what swallowing (already an unfamiliar and new concept) while on high-flow oxygen is like. So essentially, when Struthers is cueing to eat, he has to coordinate not only suck, swallow, breathe (difficult for all newborns), but also block off his airway to do so without inhaling the sustainance.

–That being said, our little superstar insists on occasionally trying (he has a stubborn independent streak), and sometimes does well (he took 30 mL by bottle a few days ago!). The times he does not do well are scary and devastating to mom, who generally is holding him and trying to feed one way or another.

Firsts and lasts:

–First time Eli and I both walked into church was last Sunday! It felt weird to walk in without our son, but at the same time, so refreshing. My facebook post said it all: “So blessed and grateful for this church family that make it feel like it’s not the first time walking through the doors since October. They have been so present when we were not. Now trying to be present with God and His.” We look forward to worshiping with this family in the weeks between now and Struthers’ discharge, and to a lifetime of worshiping with our son thereafter.

–While at church, we ran into a friend (I had only met her once really) who had a daughter born November 18, four days following Struthers. This is the first time I’ve seen a non-preemie since Struthers was born. And I don’t guess she’s particularly big, she was 6lbs something at birth. But she looked and felt HUGE when all I was used to was micro-preemies. And my mind trailed off to realizing that Struthers will be in the same grade, in the same Sunday School and Awana class with her. It’s frightening yet also comforting. The parents of all his little friends have been praying for him since before he was born!

–In October, we purchased a new stove for the house, and I was so excited about using my new double-oven…many jokes ensued about the Bun in the Oven, but the truth is I didn’t even get to use it before I was admitted to the hospital! And while I was in, we also had to purchase a new dishwasher. So…now that I’m home, both of these are a lifesaver. For the last three months, it has been insult-added-to-injury to handwash my pump parts. So now the dishwasher is getting broken in and I’m letting the skin on my hands and my morale recover a bit!

–Struthers has grown out of his first cute little preemie clothes! So if you get tired of seeing photos with him in the same outfits, it’s because I’m already sad for him to outgrow some of them and I just need to see him in them one more time! I’m trying to think of something cute and creative to do with some of the favorites. Others will be donated to the NICU’s, passed along to friends with tiny ones (so thankful for those that parted with theirs and sent them to us), and perhaps an outfit or two provided to the nieces’ Bitty Babies.

–One of the physicians used a term I had heard frequently in front of Eli this week: “Chronic lung disease”. It sounds scary, and it certainly can be. Struthers indeed has chronic lung disease, but he should outgrow its severity over the next few years. Until then, we just have to trust that God is working his miracles at His own pace in our son. Oh, the irony…

Your continued prayers are greatly appreciated!

The last week has been the most emotional thus far in this journey. Right off the heels of the angiogram during which I was told things had slightly progressed but they could be much worse, we decided it was time to stop putting off the insurance company’s push to transfer Struthers to a less acute facility. Our case worker had brilliantly deflected their requests long enough to keep Struthers in the same facility until after we knew what things were going to look like for me. Had my renal or carotid arteries been only slightly worse than they were (see previous posts for background), an intervention would have landed me again as an inpatient, and I wanted to be in the same hospital as my son. But don’t get me wrong, insurance was not the only reason we transferred Struthers to Colorado Springs this week. There was also broad agreement with his primary nursing team, physicians and NNPs that he was stable and this might be a good transition for all of us. Add to that the realization that Colorado Springs is 2200 feet higher in elevation than Denver, and we were all concerned with his being released directly from Denver in a few weeks and we wanted to give him the time to adjust under full medical supervision. So with that, the transfer was setup for Wednesday, Struthers’ 2-month birthday.

All day on Monday and Tuesday, I would go through the normal NICU motions, and couldn’t help but think of all the routines, people and things I would miss. I went in earlier and stayed later those last few days, just soaking it all in. Imagine that…I’ve wanted nothing more than to not be there for the last 3 months, to not have to walk through those doors and back out without my child. And suddenly, I’m walking out the doors WITH my child one day, and I’m overwhelmingly sad to leave. The good news is that Struthers had one last shift with each of his primary nurses and his favorite respiratory staff–and considering their schedules, this could only be God’s doing. And that was confirmation to us that we were doing the right thing.

What I’ll miss:

–Getting off the elevator on the 4th floor and seeing all the physicians, fellows, residents, nurses and staff who cared for me during my stay. They are the ones responsible for getting Struthers here safely. It’s only fitting that I had to walk through that area to get to the NICU…

–Mandy, Lauren and Al, who know my son so very well and loved on him every minute he was there. These nurses also did a great job of explaining things to me and equipping me to be a good mom to a preemie who will need lots of extra care over the next few years.

–Ronald McDonald House–I won’t really miss living out of a hotel room, but I’ll miss the people we met there…they are now lifelong friends.

–Morning rounds where physicians, residents, fellows and NNP’s let you be a part of determining your child’s course of treatment for the day.

–Believe it or not, the lactation specialists, who spent lots of quality time with me, and helped me through the most physically and emotionally challenging part of having a preemie. I will miss Kim, Candice, Erin, Kathy and the crew tremendously.

–Other NICU parents–also now lifelong friends I look forward to seeing over the next few years of “Preemie Party” reunions. Specifically, little Emma was born a day before Struthers at 1 lb and 24 weeks. She’s doing well now and the nurses are all convinced that these two little strawberry blonde preemies were made for each other. We agree with Emma’s parents that we’d be happy to consider that after about 18 years of Preemie Party reunions first.

–TeaTime! For the past 3 months (as an inpatient too), a tea cart would come around, offering stressed out moms a little sliver of peace and warmth. It was always a welcome treat.

–Security Guards, who walked me to my car every evening Eli was not there. These kind souls were some of my favorite people I met, and they shared encouragement from the depths of their souls each and every time. One of them even knew that I was missing Christmas music and enlisted one of the volunteers to play the piano for me to sing in the atrium lobby, and he wouldn’t walk me to my car until I sang. And that was one of the only evenings I walked out smiling.

On the day of his actual transfer, the Flight for Life team was absolutely amazing…they told me during the hour-long trip that this was one of their favorite calls. We video’d and took photos (there will undoubtedly be a montage put together), and the crew was not accustomed to parents wanting to remember any part of what they do. It’s not very often they get to transport children ‘home’, or away from the critical care hospitals. And while our little family of three isn’t quite home yet, we are grateful and blessed to daily wake up in this beautiful place Struthers will one day call home.

• Struthers is 2 months old today and getting close to that 5-lb mark!
• Struthers was transferred to St. Francis Medical Center in Colorado Springs via Flight for Life ground transport today!
  This means lots of things, all good, and I will update those details after I get my feet back under me. This also means that we moved out of our home-away-from-home Ronald McDonald House, and I am officially home!!! Now just to bring Struthers home…in a month or so.
• My procedure went about as well as it could last week, and I was barely down for a day before I was feeling right back to my old self. The contrast allergy was well mitigated, and they were able to image much more than just my carotids. The summary: The left carotid is unchanged and the dissections have healed well. Right carotid has a mild narrowing of about 42% and the 2 aneurysms are slightly larger, but not to the point where coiling or stenting outweighs the risk of the procedure. Renal arteries looked better than expected as well, with only the left renal artery showing mild FMD recurrence of 20-30%, again, not enough to intervene as long as blood pressure remains controlled. So the name of the game now is to control blood pressure (which has been beautiful on a very low dose of the one drug I couldn’t take during pregnancy).
• I’m overwhelmed with the amazing acts of love and service that have been done and sent by so many! Though I cannot respond to each and every comment, please know that I am harboring them all in my heart, and the loving words and prayers are keeping us all going.

  Much love (from Colorado Springs!!!)–

  Cami, Eli and Struthers

Tomorrow, yesterday and today…you may wonder why I’ve placed those time descriptors in that order. But if you know me, you also know that it sums up my life that I much prefer to look forward to tomorrow than dwell on today or yesterday. But today, tomorrow seems much more ominous. Tomorrow, I will undergo an interventional angiogram to take a look at my carotid and cerebral arteries. It’s a fairly straightforward procedure, and one I should get a punch card discount on now, but this time it seems ominous. Not because of anything medical or an “impending sense of doom”, but quite frankly because I’m now a parent. I’d be lying if I told you I didn’t consider writing a letter to Eli and Struthers today. I’d be lying to let you think I didn’t spend today paying and automating bills and making sure Eli had access to all the accounts (and writing some of the overdue thank-you notes). So today, I AM thinking about tomorrow, but perhaps being more realistic than usual, instead of wishing it all away with positive thoughts.

So on that note, here are some specific prayer requests for TOMORROW:

–Prayers for Dr. Kumpe, who has saved my life several times over now, and will be doing tomorrow’s procedure as well. I kind of hope that they decide to finally stabilize my left carotid artery, which has dissected a few times now and formed an aneurysm.

–Prayers for Struthers to have a good solid day and spend some quality cuddle time with Daddy while Mommy’s not there. What a blessing that his primary day nurse, Lauren, will be back tomorrow after having a few days of rotating (but excellent) nurses. Lauren knows my child very well, and I’m glad I don’t have to worry about that tomorrow.

–Prayers that the “flyby” view of my kidneys (they are going through my femoral artery on the way to the neck/head) will provide them with enough definitive evidence to know whether another renal intervention will be needed in the coming week(s).

–Prayers that the prednisone and benadryl pre-treatment work to stave off the allergy I have to the contrast required in the procedure.

–Prayers for us to find comfort in my being flat on my back for the required 4-6 hours following the procedure. It’s always the most miserable part of these angiograms (it’s not easy to keep me down that long), but this time we will have the added difficulty associated with my body doing what it does to provide my son with food ;). And prayers that whatever happens with that tomorrow, we are able to get back on track in the following days and I can continue to provide what he needs from me to keep growing at this pace.

–That the absence management company my employer uses approves the additional short-term disability time requested by physicians. I received a letter on Monday that somehow the paperwork was only in place for approved medical leave through yesterday. Again, my manager(s) and employer have been amazing in working with me and have bent over backwards to ensure I can put my focus where it’s needed right now. So the prayer request is really just a logistical one that the paperwork end be fixed. It’s obvious I cannot return yet due to my own medical needs, much less Struthers’.

Praises for YESTERDAY:

–Struthers continues to gain weight, and is now 4 pounds, 7 ounces, or 2030 grams–this is almost triple his lowest weight after birth (~700 grams). He’s beginning to acquire some of the reflexes that will allow him to eat, but he doesn’t quite have the suck, swallow, breathe thing down yet. He’s still receiving 100% of his 100% from-mom feedings through a feeding tube.

–I’m able to establish a bit of a routine now, and it allowed me a few minutes to catch up on mail and bill-paying and those overdue thank you notes!

–Safe travels for Eli back and forth, and a trio of gracious friends and neighbors who have bailed us out and dog-napped, let in or out, or just stopped and played with Einstein, allowing Eli to come spend chunks of time up here without worrying too much about my fur-baby at home.

Living in the Moment TODAY:

–Mommy spent lots of time just snuggling with Snuggle Bear (I know, he’ll outgrow this name). Struthers was very sleepy and his physical therapist even decided to let him to keep resting so soundly in my arms and skipped the workout for today.

–My appointment with my vascular specialist went well, and we’re all on the same page for tomorrow’s procedure.

–I was able to speak on the phone with my interim manager at work today, and it was nice to just touch base, since I haven’t been to work since she began filling a vacancy left by my previous supervisor. I couldn’t ask for a more gracious and understanding person to be in that position right now. What a blessing, and she knew Struthers’ name!

–There was a moment today when Eli and I were both writing notes to people, and Michele (AKA Gramma Shell) was addressing them, all while Struthers slept on my shoulder. This could have been an almost-normal scene…except for the beeps of the NICU, and umm, Eli writing notes!

Thanks for the continued prayers! Eli, Cami and Struthers

I caught a glimpse of myself in my son today. He enthusiastically approached a new skill, but when he didn’t get it just right on the first try, he got upset and then stopped trying. Wow…how’s that for a sobering reminder of your own, ahem, imperfections?

That same perfectionist personality trait is what has kept me from posting the past week or so. I just want to encapsulate it all with the right words, conveying our true emotions and letting you in on what life is really like for our little family of three in the NICU. But the right words escape me, and like I watched Struthers do today, I just give up and move on (to mastering something new). But I realize that’s not fair to the hundreds of you out there praying for us and following our story. Nor is it honoring of the only perfect person to have ever walked this earth.

So, the hightlights:

–Struthers spent about 6 days off of CPAP, then was placed back on it for the third time. The decision was a surprise to me, but clearly the right one for our little one. He remained on the breathing assistance for another week, then on December 26, was weaned off again. This was a setback in more ways than one, but we are getting back on track slowly but surely. Another NICU mom reminded me that on and off CPAP was better than on and off ventilator, which her sweet tiny child has experienced twice now.

–The third time on CPAP came with its own set of challenges, namely fluid retention. So after a few very puffy days and crazy weight gains that none of us wanted to believe, he was placed on a diuretic. Only three doses later, our little man looks like himself again and continues to put on ‘real’ weight. We are fortunate that so far, the diuretics have not caused an electrolyte imbalance. Even off of CPAP, they have kept him on a mild diuretic (the High Flow Oxygen he’s on is humidified and can still cause water retention, and he accumulated fluid in his lungs during his second attempt off CPAP), so prayers are that all remains balanced as they check his levels every 2-3 days.

–Struthers has more than doubled his birthweight, and is now 3lbs, 12 ounces! I still am blown away by the fact that I delivered a relatively healthy one-pounder. THAT is perfection. His eye exams continue to be encouraging, and the vasculature is slowly maturing, reducing the risk of retinopathy and other common complications from prematurity.

–Christmas was full of emotion that I’ve given up on perfectly describing! I’ve always loved Christmas Eve candlelight services, but we missed it this year. And I distinctly remember crying at the last two years’ services, begging our God to send me a child. I’m overwhelmed at the reminder that He did this year.

–Sometimes my human perfectionist attitude prevents me from seeing that simple answer to prayer. I kept thinking about the fact that this was Struthers’ first Christmas, and we were missing out on all of traditions and wishes I’d created in my mind for that. I was especially frustrated at the fact that he wouldn’t even have a first Christmas outfit (nothing that fit!), and pictures with CPAP were not appealing. So what makes me break down like no other on Christmas Eve than to walk into my son’s NICU pod and realize he’s wrapped in swaddling cloths? It’s amazing how God speaks to us sometimes…

–Christmas Day we spent the morning with Struthers, giving him a bath and moving him from his isolette to a big boy bed! Then we traveled down to Colorado Springs and stopped in to see Eli’s parents and brother’s family on the way home. The reality that Aunt Cami will now have her own little ‘cousin’ at family gatherings is an encouraging new concept. I love being Aunt Cam, but family gatherings have historically been somewhat lonely in the midst of chaos–I wanted so badly to add a cousin to the mix (and have them be close in age). So this year was different–bittersweet.

–My family flew into town on Christmas, and after picking them up from the airport, I spent only the 2nd night since October in my own bed on December 25. It’s wonderful to have my family here, and fun to show them the growth little Struthers has made since they saw him during his first few days of life. It’s also difficult to feel torn between being where I should be–at the NICU in Denver with Struthers or hanging out with my family while they’re in town and I have the most overqualified babysitters we’ll ever find in the NICU nurses? Once again, I’m forced to give up on my idea of perfection, and just enjoy the time and opportunity. I am so grateful my family is understanding and flexible (and able to handle the emotional wreck I can be lately), and it’s nice to know they are enjoying all Colorado has to offer!

There you go–an imperfect recap of our imperfect week that was planned just for us by a Perfect Creator.

Hugs from Eli, Cami and Struthers

For the last six months, today’s date has been circled on my calendar.  It marked the day that all my providers and Eli and I could breathe a bit easier knowing our baby and I both had “made it” to 32 weeks.  And everywhere I went today, I was reminded of that.  I started my morning at the NICU listening to the physicians, residents and fellows round on my Struthers beginning with “Former 27-weeker at 32 weeks gestational age…” and then talking about all the milestones that should mean for him.  Then I checked in for a followup appointment, and they handed me a cup in which to leave my ’32-week’ sample (I declined, politely telling the receptionist I had already delivered).  And yet again, the sweet MA that has triaged me for every appointment over the last two years, looked at the scale when I stepped on and was bewildered, having to check the medical record about whether/when I had delivered.  Sigh…

But, alas, the Lord works all things for the good of His people…Struthers has been here for us to love on for five weeks now.  Five weeks I wouldn’t trade for the world.  I’ve slowly come to the guilt-releasing realization that just as God provided all the miracles that take place inside the womb, He’s also provided all the technology, supplies, structure, experience and providers of the NICU.  And He chose us and all the other special babies in the NICU to exhibit His miracles there.  It’s funny–five weeks ago, on the morning I would deliver, I turned my room’s whiteboard into a countdown calendar.  And on the 32-week post-it, it simply said Praise the Lord–32 weeks.  It’s beautiful to think about the Lord performing His miracles regardless of where we are, literally and figuratively.  So today, we are indeed Praising the Lord.

Apologies for the delayed status update, but Struthers has been busy growing and teaching Mommy how to get things done and take care of herself over the last week or so!

The highlights (for both of us):

Weight: 1330 grams (2.9lbs)
Length: 14″
Age: 30 days old, 31 weeks gestational age (crazy that at a month old, he’s still not supposed to be outside the womb for another 2 months!)

Struthers surprised Mommy and went off of CPAP last Sunday, only to be put back on it about 12 hours later when he began working too hard to breathe. The NICU motto is “two steps forward, one step back”, so I wasn’t surprised. And now, a week later, he was again weaned off of it again this morning and seems to be doing OK thus far! The CPAP requires a little hat with the headgear attached, so we really hadn’t seen his hair or his head too much since all that ‘furry newborn’ look went away. Now that he’s ‘free’ of his little headgear, we can see that his reddish-blonde hair on his head matches that of his little eyebrows, so I guess he got a little bit of red from both great-grandmothers and Mommy. It’s been hard to tell until now who he looks like, but he’s making it more obvious lately when he furrows his tiny heavyset browline…that would be Daddy.

Struthers is what they call a ‘hot potato’ in the NICU…and, no, that doesn’t mean he gets tossed around. It simply means he gets hot easily. He manages to ALWAYS work one foot out of even the most perfect tight swaddle. And they usually don’t like or expect to move his isolette to manual mode until 32+ weeks. But he blew through that milestone early, and is now regulating his own temperature without the assistance from the fanciest little bed you’ve ever seen! That little jump was significant to Mommy, simply because it means we get to dress him in real clothes now! In theory…it’s hard to find clothes small enough or that you don’t mind cutting for wires or tube access. But we have a friend who sent us a few outfits designed specifically for ‘tethered’ NICU babies and they are really cool (and TINY!).

At the prompting of Daddy and our favorite nurse, Mommy made her first trip home in over six weeks, if only for a few hours. The weather was beautiful enough to enjoy sitting on the porch for a little bit. I’d planned on a little hike up to my prayer rock, but I was just too tired and sitting down to relax was what I needed. I also had the chance to finish putting away some shower gifts and inventory the nursery…I had a shower the weekend prior to being hospitalized and had not really put everything away or organized any of it yet (if you know me, you know this little detail has bothered me for weeks!) Then I sat in the beautiful glider lovingly rehabbed by my mother-in-law and sweet friend Jessica. And I just rocked…it felt so normal. I’ve sat and rocked in that chair prior to now, and dreamed of the little boy I would be holding. And now, that little boy has a face and a name and it was the most therapeutic rock there ever was. I can’t wait until he’s in my arms in that chair. I am trying to strike a balance, and will likely try to schedule day-trips home about once a week. Our room at Ronald McDonald House is still a godsend, and we don’t want to lose it by spending a night away.

Mommy is still recovering well, and her blood pressure has stabilized on just one drug for now. But a vascular intervention is scheduled for mid-January, and we will know more about what might be needed to longterm stabilize the carotid in particular after ‘eyes are on target’. I’m still trying to figure out what time off from works look like, given that my leave will be exhausted before he’s even home…continued prayers for that to work itself out would be greatly appreciated. Again, my employer has been amazing, but there are still logistics and practicalities to work through.

Thanks for your continued prayers–

Eli, Cami and Struthers