Well, damn. Sorry, you get raw Kathryn tonight.
We started feeds this morning, just after 10am rounds, and Luke seemed to like the taste and remembered how to suck on the bottle. Small victory. He took quite a while to calm down, though he wasn’t really acting hungry. Can you say flashback to two weeks ago?
I visited with his surgeon, who was very pleased with his progress. We talked details about his reanastomosis (i.e. the surgical repair of his bowel where we will reattach his small intestine back to his colon). Right now, it’s been brought to the outside of his belly, his “stoma”. And, we chatted about his circumcision and when that might take place. All in all, a good, upbeat report.
Finally got Master Luke calmed down and went to lunch in the hospital cafeteria. When I got back he was still sleeping soundly, so I settled in to write some thank you notes. I was three words into the first one when he started crying again. His 2:30 feed didn’t really go that well (keep in mind, he’s only taking about 3cc or 1/2 teaspoon at each one) and that’s when I started to worry. Scratch that, I was worried before we ever started the first feed, but my instinct was to amp up the worry. Done…and…done.
We gave him a quick shot of pain meds, but nothing seemed to calm him down. Not even all my baby soothing tricks worked – and folks, I know a lot. Finally, at 4, he calmed enough where I felt I could leave. Although, I did page the neo and we chatted briefly. I told them to call after his 5:30 feeding if it didn’t go well.
I reluctantly met Scott and the kids out front and we came home. 6:46 the phone rang and it was the doctor. Surprise, surprise. We’ve decided to stop feeds until at least tomorrow and let his belly rest some more. We’ll also be giving him a pH medicine (like Zantac for babies) to help with the irritation.
Scott and I went up to the hospital tonight. We hadn’t been there 5 minutes when Luke started gagging. I immediately sat him up and he threw up all over the bed.
I am telling you…there were so many things that went through my head I felt like the room was spinning. Is the NEC back? Did the strictor happen and is he not digesting the food? Did they do an xray? Are these doctors on crack cocaine? Why is my baby suffering? I could keep going, but that’s enough to get you in my shoes for tonight.
Answers to the above are: We don’t think so. Probably not. Yes and it looked fine. No, but a dose for me might be in order. Only God knows that one.
So, we watch and wait. Again. I told you people it was a roller coaster. Sorry I’ve drug you along…but you can’t get off now! While we continue to ask for your prayers for Luke’s healing, I’d like to throw another one in the ring…pray for our family’s sanity. Pray that our kids will continue to endure this craziness, pray that Scott and I will be the best parents we can. This tug of war on our hearts is so incredibly exhausting. The crying when we put our kids to bed, the crying when we leave Luke at the hospital. It’s hard. And it stinks. And every single day gets harder and harder.
We get a taste of normal and then we get sucked back into the NICU crazy.
St. Luke, pray for us.
St. Mary, Mother of God, pray for us.
St. Joseph, pray for us.
Tomorrow is a new day…here’s to a few more small victories.
Oh, Kathryn and Scott… Please feel Our Blessed Mother's arms around you. She definitely can relate to seeing your son suffer. You know our prayers are with you each day. Your blog is such a blessing. Thank you so much. The message of today's Mass: All things are possible with God.
Oh, Kathryn,
Not much I can say to help you and Scott endure this hell. You ARE already the best parents you can be…for many, many reasons, but most of all because you are open to God and the strength of the Holy Spirit. HE is with you, particularly in those moments when you think you'll never make it. You are already doing more than what is asked – you're enduring with amazing faith. Still praying for you all…
Will keep sending those prayers for Luke, the doctors & Team Whitaker. My heart is hugging all of you.
No need to apologize for taking us on this ride with you…there are so many family members and friends that want to accompany you on this difficult journey, in hopes that we can bring some comfort and peace with our prayers. We will keep the prayers flowing for Luke's healing and for endurance for your family during this incredibly trying time. Sending more love and prayers your way!
Team Whitaker has a LOT of "cheerleaders" and there is no way we're getting off this roller coaster any time soon. Sending you all our prayers and lots of hugs.
Kathryn,
Thank you for allowing us to go on this ride with you. I was linked to your blog through a friend and I know I got several people hooked on it as well. We are all praying for Team Whitaker.
One question (I understand if you don't have time to answer). When you say that you are starting feeds again does this mean oral feeds (bottle/breast) and before he was on a feeding tube?
We're hanging in there, this morning gave me some peace 🙂
Monica, Luke was taking a bottle and latching to nurse before NEC entered the scene. He also had a feeding tube for a couple of days when we really increased his feeds to help him eat. When we start feeds again, we're hoping that no feeding tube will be necessary, but we'll just have to wait and see. For now, when he begins feeds again, we'll do a combination of bottle and breastfeeding.
Kathryn keep looking up, God is there. We are praying for all of you and will continue to do so. You are an awesome mom, trust your instincts they are well guided. Kathryn & Scott you're amazing take care of each other.