(This is part of the problem we've had to deal with in the NICU. The nurses taking care of Chloe are often caring for her for the first time ever. It's amazing how many nurses there are! She's lucky enough to have a FANTASTIC primary nurse at nights but she only works 3.5 out of 7 nights. She gets random nurses the rest of the time that have never seen her before and have no idea what she's like, what her trends are, what she usually looks like, etc. And she has a Resident following her case who's only there during the day. If anything happens at night, the Resident on call puts off any possible decision-making until the next morning when her Resident shows up. This is probably best since he usually hasn't the faintest clue about her case. And, franky, I also find it slightly disconcerting to have a 27 year-old Resident as the primary decision-maker for my daughter's medical care...I'm *sure* she turns to the neonatologist for anything big. Right? Yesterday, when Chloe's belly became distended her nurse didn't even know that Chloe had received any fortifier because they had just started her on my hind milk without fortifier before she came on duty. So she thought Chloe was probably just swallowing air and that made her belly distended. When Dave mentioned she was probably reacting to the fortifier the nurse responded, "Oh, no, she hasn't received any fortifier yet." Seriously, shouldn't that kind of information be passed on during shift change? I would imagine a statement something like, "Chloe started receiving breast milk fortifier two days ago so watch her stools to make sure she's tolerating it" should have been a part of the changeover. It's amazing to me how little her caregivers know about her while they're caring for her! It's like they don't even talk to eachother sometimes... Dave's considered going back to Miami Valley. She had neonatologists and nurse practitioners that (usually) seemed to know her and we were in constant communication with them. We seem a bit lonely here. I've been tempted a few times but I'm nervous about making the move and then having buyers remorse. I seem to recall being less than thrilled with a few people and/or goings on over there.) ANYWAY, ignore me. I just needed to vent a bit. I'm sure this sounds totally familiar to other NICU parents but maybe horrible to a NICU "novice" so don't freak out if you've never experienced the joy of NICU...
As it turns out, they decided to start Chloe on half feeds today. She's receiving half her nutrition from milk and half from TPN (IV nutrition). She's been tolerating it well and they measured her belly at 1.5cm smaller this afternoon than it was this morning. Dave just got home and said it was smaller again tonight! This is great news! Here she is during her noon care. Poor baby.
The plan is to increase her feeds as she tolerates them and then leave her on milk alone for a couple of days once she's on full feeds. I was very happy to hear that. Prior to this conversation I had decided to insist on milk only for at least three days before even considering fortifier again. So very reassuring they were already on that wavelength! I would tell them to forget the fortifier but they say she needs extra calcium and minerals for her bones because, due to the extended TPN nutrition, she's behind the curve on bone growth. We'll see how it goes. I think I'm going to be extremely active in he decision-making process on fortifier from now on. We'll be moving forward much more slowly than I think they anticipate. Fortunately, she's at least getting some extra calories from my hind milk. Which is, by the way, an extremely huge pain in the butt to gather! But soooo worth it if it helps my sweetness grow!
In other news, the opthamologist paid a visit yesterday. With all the belly troubles I had forgotten to ask for the results but also thought we were in the clear. Apparently, they saw something and think she might be on her way to needing laser surgery. I didn't think she would develop eye troubles now but it seems she can. The report was via a nurse, of course, and they can't ever seem to make out the opthamologist's notes, so we'll need to wait until he returns tomorrow to get more info. Fingers crossed that it goes well tomorrow!
This picture was taken on 10-25-09, my dad's 63rd birthday AND Chloe's 63rd day of life. Isn't that a cool coincidence!?
This was kangaroo care from the 20th. She's already much bigger! I just brought the picture home from the hospital today, though, and love her eyes so I just had to share. Is she not crazy adorable? I have two blankets that I use during kangaroo time. This one is a prayer blanket sent to me by a group of ladies from the Prince of Peace in Houston, Texas. It is to remind us that we're "covered in prayer." Such a lovely thought. I think of all the people from around the country praying for Chloe every time we use it and marvel at the love we've received throughout this journey. The other is a cute duckey blanket that my friend Jen's TTTS survivor used to use. That one reminds me of the close friendship blessings we've received over the past few months. I swear, after all the love we've received I will never be the same person again. To be on the receiving end of so many blessings is life changing.
Yes, my little granddaughter is absolutely adorable! God bless you,Chloe.
ReplyDeleteFortifier is NO FUN. Darbi had to be stopped 2 different times and she was a lot bigger than Chloe was at the time. You really need to put your foot down when it comes to that stuff! It seemed, with us, the doctors would do anything to get D to gain weight, even if it meant pushing her bowls into uncomfortable calorie levels. The nurses were always on our side on that regard at least, in wanting to take it slow. We ended up fortifying with Nutramigen instead of Neosure. We are fortifying at 26 kcal (I didn't want to go any higher than 22) but D tolerated it and we are still doing it at home. Be strong girl! Chloe WILL gain weight!
ReplyDeleteWe had the same issue with the eyes. I thought we were way in the clear but we got SUPER close to needing the laser surgery. They were checking Darbi every 2-3 days because ROP progresses rapidly but we were lucky. You've got prayers coming your way!! All those pictures of her are so beautiful!! She is so bright eyed! I love how wide awake is!
Daphne had fortifier issues too - they were adding it to the SSC 24 at one point, so she was getting major calories. Our issue was heart surgery, they didn't think she was going to make it without it. Of course, she ended up not getting it till 6 months. She did better with MCT oil as a fortifier, because she tended to be constipated and the oil got things moving.
ReplyDeleteI second Audrey's comment about the eyes. Daphne got SO close to laser surgery, but ended up just fine. I will add Chloe's eyes to my nightly prayers ;-)
You are your daughter's advocate and don't hesitate to speak up for her about the fortifier. Of course I am not a fan of it, either. Breast milk is best. Give her time on that. It has taken her so long to get to this point, so why mess with things when she is tolerating the breast milk. I had the Dr.'s stop the fortifier. The boys were gaining weight without it and it just caused issues for them.
ReplyDeleteAs for changing hospitals...... Unfortunately, we had our babies transferred to a closer hospital. It was great having them 30 mins away, but as it turned out, I wish we hadn't. The 2nd hospital was not into kangaroo care, bonding time, or breast feeding. Breast milk, yes- just never believed the babies were actually getting enough just nursing. I was only allowed to hold them every other feeding, during their feeds. I missed the hours of kangarooing at the first hospital. When they went to the 2nd hospital, they were stable feeders and growers, so I was confused and frustrated with their attitude. They believed that leaving the babies alone was the best.
As for nursing- I had nursed my other children 6 children fine and was pumping 3 times their consumption, so supply and ability wasn't an issue. They nursed exclusively, successfully, from the day I brought them home, but the hospital never allowed that there. I knew my only ticket to getting them home was to allow bottle feeding my breastmilk.
I am a former pediatric RN, who had some experience with preemies, so really didn't understand their logic. I am still traumatized over the whole experience. I know it would have been different if I had stayed in the first hospital which had a supportive staff toward parents and that bonding. Anyway, go with your gut, be an advocate. It is so hard having a baby in the NICU. Change hospitals if you feel her care is at risk. Not always is the grass greener in another hospital.
Sweet Chloe has come a long ways. So cute and precious. My heart goes out to you in your loss and through the challenges you have and are facing. It is also hard having another child at home.
Take care
Praying for Chloe and better communication in the hospital. I'm so happy that you have all these wonderful NICU moms to give you their support and valuable advice!
ReplyDeleteLove you..
-Leticia-
She really does have the most amazing eyes; the way she is looking at you almost says, "Hey, Mom, how's it goin'? I'm just hangin' out here."
ReplyDeleteYou are on the right track about speaking up. Just because they have medical degrees does not necessarily mean that they know Chloe best and how to best meet her needs.
I definitely went off on some of the nurses a few times, you are Chloe's best advocate. I remember one nurse, in particular, who used to leave trash in Ava's bed. I know there was a very small chance it would hurt Ava, but still! How degrading is it to have someone just leave trash in your bed? We are talking bloody gauze, not small pieces of paper. You have all of our support when it comes to your daughter's care. I used to be embarrassed, but eventually I became more angry than embarrassed and spoke up :)
And because her eyes are just so gorgeous, I have to tell you again how beautiful they are! She is truly adorable.
Hugs and Prayers,
Jen
You are amazing, Cyndi! I loved hearing about the blankets that you use! That's so cool!
ReplyDeleteI totally understand!!! We were at 2 hospitals during our NICU experience, and the private hospital was our best experience. We were at a teaching hospital for a month and... well... I... probably had a really bad reputation. There's nothing more obnoxious than some kid who has taken a class thinks she knows more than you about your baby!!! The private hospital took more interest in Daxton as an individual... And that's important to me. Great job advocating and pushing. You're a great mom!
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