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.
Comments imported from CaringBridge (18 comments):
Love you Cami! Praying!
—Tina, February 9, 2015
Praying for you all! Bless your heart as a mommy, going through all these struggles and emotions! you are doing great and it sounds like Strut is too. I am praying for the feeding and the reflux issues to improve quickly! I know it’s hard, but he has come a long way and soon you will have your baby home and it may be a little longer for the “normal” living and baby stuff, but one day you will be busy as any normal family with little Strut! Love and prayers for you all!
—Susie Short, February 9, 2015
Still praying for you, Struthers, and your sweet family. Cami, I know so well the emotions you are feeling.. My heart, too, has felt the same things that you are feeling when I was a new mommy to Riley. Unless someone has had a medically fragile child I don’t think they can fully understand the complexity of all of the emotions that go along with that experience. I know the pain, the joy, the guilt, the loneliness, and the very real power that prayer brings in those moments when you literally feel God’s comfort that is beyond all understanding… You will get through this sweetheart! And it is hard! It will change your heart!! And one day you will encourage others and celebrate with families that God places in your life to do the very same thing that I hope to do for you…to pray, to hurt, to love, and to celebrate with them as they travel a path that is similar to your own. And you will never forget! But it will get easier as Struthers grows and become more of the little person that God intended for him to be. And then one day, you will blink your eyes, and find yourself staring in complete joy, overwhelmed by Gods GREAT love as you look at the incredible miracle the Lord created in that child just for you. Just keep holding on honey! And if you feel like you can’t hold on, and can’t be strong, just let it go, knowing that there are so many people who love you and are praying for you, and we will hold you up in the moments that you feel you can’t hold yourself up any longer.
—Mandy Pipkins, February 9, 2015
Blessings on you, dear friend! I can’t begin to imagine what you are going through; but I know with so many prayer warriors on your side, your strength through Jesus will get you through these tough times. We will continue to pray for Struthers’ strength; for his breathing to normalize; for his reflux to be healed…and we will continue to pray for your healing as well! You are loved!
—Heather George, February 8, 2015
We are still praying for cousin/nephew Struthers! Now we know how to pray more specifically. Someday, Cami, I truly believe, you will get to do all the things you are longing to do with Struthers. He is truly a blessing and a miracle and you are a wonderful mom. The kids and Max and I will be lifting you all up in prayer, Sister!
—Tamsey, February 8, 2015
Dear dear Cami. You certainly have my contined prayers. I think of you so often and cannot even begin to imagine your struggles. I love that you share a few if them with us…not only so educational but I hope it helps you, too. These days must seem never ending but they are…three months already! Minute by minute Struthers IS aging and growing. Hang in there…keep on praying…”funner” times are ahead. Lots of hugs. (Great to see Eli yesterday! Thanks for sharing him for a few hours.)
—Catherine Rice, February 8, 2015
Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. We are so blessed in so many ways and it’s so easy to get depressed about our situations. None of us are without struggles. You are blessed and you are a blessing to so many of us. Praying for you. This too shall pass.
—Sherry Askey, February 8, 2015
Thank you for sharing! I pray for baby Struthers daily. You can do this! One day at a time. Love you!
—Evania Ku, February 8, 2015
I read the following devotion this morning:
When you feel yourself sinking in the sea of circumstances, say “Help me, Jesus!” and I will draw you back to Me. If you have to say that thousands of times, daily, don’t be discouraged. I know your weakness, and I meet
you in that very place. Ephesians 2:16; Matthew 14:28-32. It’s hard to stay strong and understand why. Keep giving your heavy load to God and trust that he has the best plan. Thank you for sharing your emotions and the details of the challenges you face. My heart hurts for you! Please know that I will continue praying for all three of you.
—Jill Lindsey, February 8, 2015
Life is never a straight line but full of crocked paths with ups and downs, just a part of God’s plan for each of our lives. He’s in charge and somehow gives us strength and joy to continue moving forward and upward. I know you will continue the course, perhaps for helping others someday. Struthers is our little blessing from God. You both are beautiful examples. hugs
—Marj Wise, February 8, 2015
Stay strong, Cami. I understand your whirlwind of feelings. I’m a mom too. Praying for continued success even though it is happening oh so slowly.
—Debbie Smelley, February 8, 2015
Cami, my heart hurts for you! I appreciate so much your openness about what you are going through! We will be praying that you will have the distinct sense of being watched over by El Roi, the All Seeing God, who never slumbers and who saw Hagar in the dessert….I will share with Don also!
—Brenda for Don also, February 8, 2015
Oh, Cami…praying, grieving, and rejoicing with you three!
—Sarah Brenner, February 8, 2015
Thank you so much for sharing so many details of the challenges you are confronting! Just this morning as I was praying for you I was thinking of the great advantage your milk has been for Struthers, and your willingness to get that milk to him at great effort. No one will ever know how much his success and growth so far is because of this. You are an expert on Struthers, and you have also been his champion in every other area of his care. He would not be where he is without you. Motherhood is a lonely time in many ways, and you share that loneliness with all the moms of less challenged babies. There is only One other who loves your baby as much as you do, and He loves you every bit as much, so cling to Him. Know that you have my continuing love and prayers.
—Michele Bremer, February 8, 2015
Praying with you and for you Cami! Thanks for being so real with us. God is good, and I’m so thankful you have Him to hold you and little Struthers through this. Love you!
—Kristie Willis, February 8, 2015
Cami, I feel your helplessness in your disclosure of your day in day out struggles. You are a strong person and I pray that God will strengthen you physically and mentally to endure. I pray you & Struthers will be at home soon together.
—brenda geer, February 8, 2015
So sorry for all the hurt in all directions. I feel as helpless to help you with this as you do to help Struthers, and my reminder that “this, too, shall pass” seems an inadequate attempt at solace. Please know that those of us who love you most do see the yo-yo sliding back and forth between strength and fragility, and it makes our own hearts ache, too, both for Strut and for you and Eli. It’s OK to admit that the struggles for you have been very real, and it’s OK to yearn for what seems to be normalcy for other new moms; that’s only OK with me because I know that you also have times of relishing the many miracles you’ve also experienced and the world-wide witness of the power of prayer that both you and little Strut have experienced throughout these not-quite-three months. It’s hard to know how to pray sometimes, but I think my prayers for now will center around your own need for peace and comfort; for encouragement not only from others but also for an intrinsic satisfaction and tranquility; for a return to your normally visionary outlook that allows you to see not just where you are, but also where you’re going; and for enough joy along the way to balance out the sorrow that must certainly also rear its head every now and then. Thank you, Cami, for being so honest with this. It really does help that people know more closely what to pray for and where things stand. I know you well enough to know that this was difficult for my normally optimistic daughter to admit to such a broad audience. Love you, Baby. Wish your daddy and I were closer.
—Mommy, February 8, 2015
Praying and crying with you! You are an awesome mama! Remember that God is leading and guiding you, He sees and knows your joys and your fears.
—Jo Cochran, February 8, 2015