Saturday, August 9, 2008

NICU Pirates

I haven't posted in a long time, obviously.  For a while, I was too frustrated to post.  Then, I just got lazy, though I'd rather call it "exhausted and busy," as I'm trying to learn to cut myself some slack here.  Every now and then it occurs to us that our life is, indeed, even crazier and more stressful than the norm (which is generally pretty crazy for us anyhow).  But we're used to it now, and in a pattern, so we usually forget that we're carrying a lot right now.  Yesterday, for example, John said, "It seems like it [meaning life] should be easier!"  After I reminded him that our newborn (that we thought wouldn't even live) has been in the hospital for 7 weeks (and an hour away), we just moved, we just started a new ministry (for us), we're trying out this whole co-pastor scheme and working closely together at it, and we're still trying to sell a house in Louisville, he conceded that, well, there's really no way it could be easy.  And it's not.  Especially now that I've gone back to work (albeit part-time), I'm finding that we end every day utterly exhausted, both physically and emotionally.  I'm just ready to take my little baby home.  I'm done. 

People often use the analogy of a roller coaster ride when talking about life in the NICU, and I definitely see what they are getting at.  For me, though, it seems more like the pirate ship ride at the state fair.  You know, the one that constantly goes back and forth and back and forth and back and forth, getting higher and higher with each swing.  And that's the kind of motion that really makes me sick.  Because Becca has been so stable, it hasn't seemed so much up and down as a roller coaster, but we definitely seem to be taking several steps back for each step forward. 

Take last week, for example. 

I wrote on here on July 27th that Becca had hit full feeds.  Just a few hours later, however, they stopped her feeds COMPLETELY.  According to her doctors and nurses, her belly had started looking big and she had been having more spells, which made them suspicious that she was developing an infection.  Apparently it's not all that uncommon for babies to get an infection right after their PICC line is removed; there's a theory out there that a few bacteria lingering in the end of the line are shaken loose when it is removed.  So they stopped her feeds completely (dropping to 0 from the 13 we'd just finally worked up to), gave her IV fluids, put her on antibiotics, drew a blood culture, and (the next day) put another PICC line in and started TPN feedings again.

Big step back.

It had taken weeks to finally get her up to full feeds, and she was only on them for less than 12 hours.  The really frustrating part, though, was that she didn't seem sick to me.  She was still acting like herself, poochy little belly and all.  Obviously, I'm not a professional, and I'd rather be safe than sorry, but this momma was pretty darn sure that she wasn't getting an infection.  I think the timing was just off.  Because Vanderbilt is a teaching hospital, Becca's doctors rotate every 3-6 weeks, as do her primary nurse practitioners.  Her primary nurses, however, stay the same, thank goodness.  Well, the rotation happened to hit right when all of her primary nurses (who know Becca very well by now) happened to be off, so she ended up with a new doctor, new NNP (neonatal nurse practitioner), new day nurse, and new night nurse, all at the same time.  Becca has always had a poochy belly, even before she started eating, and those of us who know her well are used to it.  I have listened to and watched many brilliant and talented doctors, NNP's, and nurses be very tentative with her belly at first and then eventually get used to it.  She's just got a big belly.  (Let's face it; it runs in the family.  ;) )  But when she ended up with all these new folks at once, there was nobody to say, "Let's give her a chance - that's just how Becca looks.  If she's really sick, she'll give us another signal."  And, so,  because we've got to be so paranoid about NEC (it's BAD news), they stopped her feedings cold turkey. 

That was July 27th.  It's now August 9th, and we're just now halfway back up to full feeds.  They gave her a few days of "bowel rest" (great phrase, right?) and eventually restarted her feedings.  When you restart, though, you've got to start at the very beginning again.  So we're back on the long road up to full feedings.  They did keep her on antibiotics for 7 days, though her culture never grew anything, meaning she either never had an infection or they caught it so early that the antibiotics knocked it out right away.  I'm sure you can tell which I thought it was.  Some of her regular nurses and I were quite, um, annoyed that they automatically stopped all feeds instead of backing off some and seeing how she would do then.  When I tried to ask the attending NNP if she had seen Becca's belly normally, I was (for the first time, I'm glad to say) met with some resistance to my input.  Resistance, that is, along the lines of, "I know what I'm doing, thank you very much."  Yes, you do, but, like I said, I've also watched lots of other professionals be scared about her belly and then come around to it.  But it was late in her 24-hour shift, so I'm willing to cut her some slack...but, darn, I wish that this bump in the road - legitimate or not - had not put us back at least three weeks behind.  And that makes me want to make my pirate face, hook my finger, and say, "Aaaargggh!"  I'm a NICU pirate. 

But her time has not been totally wasted!  She has still been growing, and she's now up to 2 POUNDS!  Wow!  What a fatty!  She's also starting to take a bottle, which she's getting to try once a shift.  (Because it takes  a lot of energy to suck - and thus burns precious calories - they limit it to twice a day.)  She's doing pretty well, sometimes taking up to half of her that feeding P.O. (that is, by mouth), though it's usually much less (I think overall, she's taken an average of 12% of the bottle feedings she's been offered).  She's also started breastfeeding a bit, though "feeding" is too strong a word for it.  We're not depending on it to actually get any food (so she's still getting her 8 cc's even when we nurse) - her NNP (named Nancy, by the way!) says that we're just doing it "for fun" right now.  And it is fun!  It's nice to have her so close to me, and I think she likes it, too.  I can imagine, though, how frustrating it must be for new moms and babies who actually are trying to get the whole breastfeeding thing down while trying to meet all their nutritional needs through it.  She probably won't be able to exclusively breastfeed because we'll need to monitor her caloric intake (to make sure that she's getting enough), even when she goes home, but it's nice to be able to do it some now, and eventually, she may be able to nurse a few times a day.  In the meantime, she's up to 8 cc's each feeding (down the tube, unless she takes some of it from the bottle).  With her new chubby weight - 900 grams! - full feeds will be somewhere around 16 or 17 cc's, so we're halfway there. 

I'm awfully proud of her these days!  When I'm giving her her bottle or nursing her and she looks up at me with her puffy baby cheeks and her pretty eyes open, I just melt.  It's like she takes a suck and looks up at me like, "Is that what I'm supposed to do?  Am I doing it?"  It's so cute!  She's pretty much the cutest thing ever. So that's the update.  Sorry it took so long.  I really appreciate all the comments, though.  I read them, even when I'm keeping my own (electronic) mouth shut.  So keep those prayers and chubby thoughts coming!  I'll have John post some more pictures below.  They're adorable!

 



 



 

28 comments:

  1. Good to hear news from you again! Sorry for the setbacks... You will be in GREAT hands with the feeding specialists (Gwen, Tiffany, etc.) @ Vandy-- hopefully they have been helping get little Becca back on track. Glad that she's nursing and on her way to full feeds again! I check the blog and pray for your family daily even when I am keeping my (electronic) mouth shut, too! Love and prayers!

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  2. It's great to see her back on the road to eating and gaining weight. I really liked the pics you were able to take with the feeding tube out--it's good to see her whole face.

    Sorry life is tough now--I think it is tough for all first-time parents, but y'all have had a lot going on the past few months.

    Take care of yoursleves and Rebecca.

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  3. It's great to have an update on how you and Becca are doing. It sounds like she is now back on track and that is wonderful news. Her pictures are adorable! I also check the blog daily and have been keeping you in my prayers.

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  4. Nancy- i know I've said it before (facebook), but she is soooooo adorable. The new pics are absolutly presious. I"m so glad that you all are doing so well, even with a few minor setbacks. Becca will be back up to full feedings soon hopefully. you've got lots of prayers from me and my family as well. I miss you.

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  5. wow, nancy, she is SO big! and cute and pink!
    I have to visit soon!

    love you!

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  6. You, John, and Becca are never far from our thoughts and prayers. It was so good to see the new pictures and hear how well Becca is doing. We love you.

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  7. whoa..Becca your getting to be a big girl!!!and sooooo pretty!!you and your mommy and daddy are still in our prayers!!!Cant wait to tell everyone at church in the morning how much better your doing!!!!!God Bless YOU

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  8. Yay for bottles!

    Sounds like you're going to be ready for a big Talk Like a Pirate Day celebration on September 19.

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  9. what a cute baby!!!! my friends molly and brent had their baby on july 24th, ainsley frances. for weeks they've been asking me about becca...and after spending time with brent's mom (kathy) at the hospital when ainsley was born, she often asks brent if there are any updates on the little baby in nashville. so happy thoughts and prayers are coming at you from lots of places :-)

    have a great day!!!

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  10. Nancy, so sorry to hear that the last couple of weeks have been so rough. I'm glad Becca is gradually working her way back to the full feedings. The pictures are so adorable!!!!
    Take good care, and we at Baptist East are keeping Becca, you and John in our prayers,
    love, Jan

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  11. She looks so great. I love seeing her little hand there in front of her face. We pray for you guys often. We think we are coming to Nashville for a wedding in October, so hopefully we can see you guys then. Love, kisses and prayers--Suzy, Derek, Molly and Emily

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  12. she is getting so fat! i love it when even itty bitty babies can look fat. and the one of her smiling is precious... also, be looking on your facebook in a day or so for an email. be good!

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  13. Thanks for the update! She looks beautiful! We are praying for you guys.
    Marissa

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  14. You guys are all CHAMPIONS!!! hugs all around...

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  15. I'm SO glad to get an update! My small group was asking about Becca on Thursday night. I know you obviously already know this, but Becca is absolutely adorable!! Elizabeth keeps coming up to the computer, saying "I was to see baby Becca." I think the three of you are all AMAZING ... juggling so much and staying so positive. YOU ROCK!! Know that we're still sending warm thoughts your way often and continue to pray for you all. Much love ... Denise

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  16. Hi Nancy-

    Give that itty bitty girl a hug & kiss for us. You're in our thoughts and prayers.

    Rachel and Don

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  17. I am so sorry that the last couple of weeks have been a challenge, but that little girl is determined to thrive and I know she will be on track soon. You guys are always in our prayers. Love, Pam and Jimmy

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  18. Lots and lots and lots of love to you! Go, Becca! You can do it! And Nancy and John, I will pray that the pirate ship slows down just a little. In the meantime, keep saying "aarrgghh!" when you need to!

    Rachel

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  19. Hi, Nancy --

    I loved reading your latest update, and the pictures are marvelous. Having worked in a large teaching hospital at one point in my life, I can say that you are exactly right about what happens when there are big staff changes. Just hang in there and keep on advocating for Becca (great name, by the way ... that's what family and close friends have always called me :0) ) Hope things are going well in the ministry realm, too. I'm looking forward to seeing the you and John in person at the end of the month. Lots of love and prayers, Rebecca

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  20. Carol Cavin-DIllonAugust 12, 2008 at 10:44 AM

    What great pictures! I'm so glad to see you holding her and to hear that she's breastfeeding "for fun" right now. I'll keep praying chubby prayers. And, just so you know, Martha mentions Sisi and Baby Becca in her prayers almost every night. Last night, she ended her prayer not with "in Jesus' name," as we usually do, but "in Jesus Christ's baby." On another note, thanks so much for the birthday card. I hope y'all had a good anniversary. We love you!

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  21. Nancy,
    It is so great to hear how well Becca is doing! She is such a miracle! Thank you too for mentioning the Berlin's on your blog. They are still really struggling, especially Greta, but they have mentioned several times that they "feel the prayers". I'm sure that you can understand that more than anyone! Best wishes for continued feedings and growth. Give her, and John, a hug and kiss from us.

    We love you all!!!

    Lisa, Will & Tyler Martin

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  22. What a treat to see these pictures of your precious Becca! She's working hard to come home with you and John. We love you and can't wait to meet her in person!
    Love - Lisa & Lonnie

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  23. You are starting to reap the real rewards of nursing. They can look up at you with eyes that reduce you to a complete and total puddle. I am glad the bump in the road wasn't very big!

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  24. Hey Nancy, I've been off the blog (thinking it hadn't been updated) and relying on facebook. But I've been thinking of y'all. One of the first things any mom--even the mom of a full-term baby--learns is that you have to cut yourself slack. Not everything is ever how we imagined it would be, it's harder than we think it's going to be, but at the end of the day, it's more rewarding than we could have imagined, too. Hang in there, Mommy.

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  25. Wow, she looks amazing. Hang in there, you are incredible people. Many prayers for all of you.

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  26. Michelle Facchinello JonesAugust 21, 2008 at 10:26 PM

    Nancy and John- I saw Itty Bitty's picture on my friends refrigerator and asked about you all. My story is a bit different, but I ruptured at 20weeks, stayed in the hospital on bedrest and antibiotic for 9.5 weeks. Ashton, my son, was born at the 29wks, but weighed 4lbs 5oz( very big for his gestational age). He spent 4 months in the NICU. I totally relate to what you are going through. I'm sure they have told you that Itty Bitty will take steps forward, then have a slight set back then take off again, which I'm sure you are already riding the roller coaster. I do want to make sure Nancy that you have a "pump" bra. This is where you can be hands free while pumping, so you can at least eat, read, and not feel so tied down. You will not believe what a difference this makes. I pumped for 14 months, glad I did it, but it is very time consuming and then frustrating when they can not take it. If Vanderbilt does not have them, you can purchase one at Centennial Women's Hospital on the 1st floor in the Mothers store on the right hand side (10 minutes from Vanderbilt). Would love to share and help you through this tough time. My home email is Facchinello@comcast.net. Work number is 615-344-2473. My son came home on oxygen (on oxygen for 21 months) and later put on a feeding tube at home. Remember it is hard to suck and swallow when you can't breathe. He is now 41/2 years old and doing AWESOME!! Love and Prayers, Michelle

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  27. She is so precious!!! Hang in there Nancy.

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  28. I'm very glad to hear Becca's doing alright. My pastor has a sermon called, "The Bumps Are What We Climb On." Becca is going to be super strong!

    She's really beautiful. You're all still in my prayers!
    Patty in DC

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