Bradys

Just a quick update for now. I'll probably write more later, but I'm still processing the concern and disappointment right now.

I talked with Phoebe's nurse about an hour ago.  She is having some episodes of bradycardia (bradys=heart rate dips) again. Last night around 4:00 am, she went all the way down to 39 and needed some mild stimulation coming back up. Would you please pray with us that these bradys stop? At this point, they are still thinking the bradys are being caused by prematurity or her anemia, but the older she gets, the less she’s supposed to be having these. They are the only thing keeping her in the hospital, and they are serious enough that she must stay in the NICU at least an extra week after each brady. While we certainly want her to come home, we most want her to be healthy and well and to not be having these heart rate dips.

Thank you so much for your prayers for our little preemie and for our family. We know God is at work and holds her in His hand, and we are just trying to keep that in mind and rest in His timing. Sometimes it's hard to do that, especially when I'm worried, but I'll get there.

It's Beginning to Look A Lot Like Christmas

Once the Christmas decorations start showing up in stores...you know, in October ... I start singing that song to my kids. Well, sorta. I sing the verses I can remember, or some wrong combination of verses. I'm not gonna lie, I get a definite degree of pleasure out of walking through Target singing that song while Joshua tries to get me to stop embarrassing him!  David and Andrew could care less if people look at me funny and of course, Phoebe has yet to experience that certain kind of torture. So right now Joshua carries all the weight of my public silliness. He can handle it and some days I can even get him to sing along!

I'm still singing that song this Christmas season, but every once in a while, I throw in a little "I'll Be Home for Christmas." But I sing that in the NICU when I'm sitting with Phoebe. I'm just trying to subtly get her on board with the idea of being home for the holidays. Because it is totally up to her. I tried to explain to her that there's this big family holiday coming up and wouldn't it be wonderful if all four of my kids could be home for it. I told her about Santa and stockings, about our traditional Christmas Eve finger foods dinner, about how Chris and I take turns eating her advent calendar chocolate, about how it's taken us a whole week just to get the tree in the living room and the lights on it and that hopefully we'll get the ornaments on by December 25. Of course, she could care less about all that and just wants me to focus on feeding her. So I sing "I'll Be Home for Christmas" as my personal way of brain-washing my little preemie into stopping these silly bradys so she can come home. Am I slowly losing it? Yeah, maybe. :-)

But back to Phoebe: she continues to do very well. She's now eating as much as she wants (up to 2 oz) every 4 hours. She moved from 24 calories/ml formula to 22 cal/ml. Her body temp has been good. Her CBC came back on Friday and showed that her blood count is on the rise and her anemia is slowly improving. She is now 5 lbs 3 oz. She hasn't gained any weight since Friday, which was also the day her formula changed and she moved to 4 hour feedings, so they aren't too concerned with that. Her blood oxygen levels have been good for a while, so today they removed her from the pulse ox monitor.  All in all, she's just doing fantastic.

Except for those bradys! I haven't checked in with her nurse in about 6 hours, but the last brady I know about was Saturday evening around 7:30. She dipped pretty low on this one, into the 40s, and needed some mild stimulation to come back up. Lately, all of her bradys have been self-stimulated, so this mild-stim one was a little surprising. Dr. Lantzy said he wasn't sure what to make of it and that we'd just watch and wait. At this point, her bradys are the only thing keeping her in the hospital. And I'm trying to keep things in perspective: if she has to stay in the hospital for Christmas, it really will be OK. Her growing in a safe environment is more important than anything else right now.

So our prayer request: please pray that her body gets about its work and that she does not have any more episodes of bradycardia. Please also pray that her anemia continues to improve. She has another neuroscan today (Monday) so please throw in some prayers for that to have all good results as well. Thank you!!

This past Friday, one of the sweet girls who babysits for us occasionally watched the boys so Chris and I could go to the hospital together for a while and then sneak in a quick date for our anniversary. Chris got to feed Phoebe for the first time in a while and I realized that I am going to have major sharing issues when she comes home. Then on Saturday, we took the boys downtown for a little Christmas outing to see the sights. It was a beautiful day and everyone had a lot of fun.

That night, Joshua slept over at a friend's house. It sounds like they had a lot of fun, but Joshua did get a little blue at bedtime and want to call home. I think he's processing Phoebe's hospitalization in his own way. It's good for me to remember that this journey is affecting the boys as well.

When we were eating lunch on Saturday, two different waitresses commented about me being a mom of three boys. When I told the first one about Phoebe, I suddenly realized I am no longer a mom of all boys. I have a daughter!  There is pink in my house! Whoa. :-)

As always, thank you so much for your prayers for our little preemie and for your encouragement and support for me and Chris! 

Here We Sit Like Flies on a Garbage Can...

So as many of you know, that's a tried and true camp song. "Here we sit like flies on a garbage can...waiting for our food." (Oops, now I'm going to have that song in my head all night.) Anyway, I'm not waiting for food, I'm waiting for my little preemie to come home. And some days I do feel like pounding on the table and screaming, like the kids (and counselors!) do at camp. :-)

Today was one of those days. By all accounts, Phoebe had a very typical preemie day. She ate all of her bottles, but got really tired with some of them and required extra work. She had two heart rate dips today: one with me sitting right beside her at 11:00 am and one sometime after 7:00 pm. It is not unusual for a preemie her gestational and chronological age to still be having bradys. BUT...yesterday we were told that her Dr. was considering her for discharge much sooner than we expected. So I got all excited and caught up in that idea. We started making plans for Chris to be home and for what needed to be done to be ready for her at home.  But then she had that first brady and the timeline automatically changed. Now we have to add 5-7 days to her stay before she can be considered for discharge.

"Here I sit like flies on a garbage can..."

I was so disappointed. I knew what the brady meant as soon as it happened, but Mary Ann had to break the official decision to me. I must've looked so sad.  Which is kinda silly, because she is still doing so well. She's eating by bottle...she's in an open crib...she's gaining weight...her PDA murmur closed and her PPS murmur doesn't seem to be causing any problems.  Her infection cleared, her lungs cleared, she has no brain bleeds, her ears passed, no evidence at this point of retinopathy of prematurity in her eyes.  She turns her eyes to sound, especially her mommy's voice. And she feels more like a newborn baby and less like a preemie every day.  She's doing great!  You should see some of the babies in that NICU. Some of them have vents and computers and contraptions I've never seen before. Some of them can't be handled because they are too fragile. Some don't get visited much, if at all. Some will go home to a life more hectic than the hospital.  From the outside looking in, it's obvious they are struggling more than Phoebe has. I am SO GRATEFUL that her journey has been fairly gentle and fairly unremarkable. And my heart goes out to those babies and their families who are walking a journey we very well could've walked.

And yet..."Here I sit like flies on a garbage can..."

I just want her to come home. I'm tired of going to the NICU. I'm tired of having to cut my time with all of my kids in half. I'm tired of looking for parking spots on Friendship Ave so I don't have to pay to park in the garage. I'm tired of scrubbing my hands like I have OCD (I'm getting worse and worse about it). I'm tired of double checking with someone else if it's OK for me to hold my baby. I'm tired.

Thankfully, I serve a God who is in that NICU with all those babies and their parents:

²⁸ Have you never heard?
      Have you never understood?
   The Lord is the everlasting God,
      the Creator of all the earth.
   He never grows weak or weary.
      No one can measure the depths of his understanding.
 ²⁹ He gives power to the weak      and strength to the powerless.
 ³⁰ Even youths will become weak and tired,
      and young men will fall in exhaustion.
 ³¹ But those who trust in the Lord will find new strength.
      They will soar high on wings like eagles.
   They will run and not grow weary.
      They will walk and not faint.

Phoebe will come home when she's ready. There are families with babies in that NICU who would give anything to just be worrying about bradys and anemia. We can be patient. God has been at work in little Phoebe's life from the very beginning and He's at work now. She'll come home in His time, not mine.

So now, my heart sings a new song:

In His time, in His time,
He makes all things beautiful in His time.
Lord, my life to You I bring,
May each song I have to sing,
Be to You a lovely thing, in Your time.

In Your time, in Your time,
You make all things beautiful in Your time.
Lord, my life to You I bring,
May each song I have to sing,
Be to You a lovely thing, in Your time.

Doesn't she look peaceful? It's like she and God have a plan and we just need to trust them!

Thanks for reading along as I process this phase of our journey! And thanks for praying along!

Phoebe's Progress 12-1-10

OK, first: snow? Really? I so do not have time for this. :-)

Anyway, Little Miss Phoebe is doing really well. She is now up to 5 lbs 2 oz and eating 40 ml per feeding (about 1 1/3 oz). She's been eating just about every feeding by bottle so her nurse pulled her NG tube tonight. I walked in to the NICU and surprise! I could see her upper lip!


She has Angels' Kisses just like Joshua and David, but I'm sure they'll fade. It doesn't matter...she's beautiful and perfect!

Phoebe has had a really good week so far. I am thrilled to report that we are beginning to talk about when she might come home! In order to come home, she has to (1) maintain her own body temp, (2) eat all her feedings by bottle, (3) continue gaining weight, and (4) not have any bradycardic episodes for at least 7 days. She also needs to get her anemia under control, or at least improving. She's doing really well with 1,2 and 3. We just need to get her to stop having occasional bradys and for her red blood cell count to come up. We're getting close! We can't wait for her to come home, but of course, we don't want her to until her little body is ready so we are trusting the Drs and nurses decisions. We'll be ready for her to join us whenever she is.

Of course, by "ready" I mean, "happy and excited." We still don't have anywhere for her to sleep and the girl clothes we've received as gifts are still being stored in a corner of our office/play room and in her NICU drawer. My bed rest table and baskets are still by my side of the bed, which is where Phoebe will sleep in her bassinet as soon as I get that all put away and we find, clean and set up the bassinet.  I still haven't sorted out where her clothes will be stored. She'll be sleeping in our room, but should I keep her clothes in David's room/her future room? Or should I make some sort of temporary drawers for her in our room?  And I should probably, you know, dust and vacuum. :-) Ehhh, we'll figure all that out.  I'm not worried, we'll get everything ready in due time. I just want to get her home and get about the business of building our family's new normal.

Not the last embarrassing picture she'll have to deal with!

Thank you so much for your prayers for our little preemie. Look at how she's gained from them! I just cannot say thank you enough for your prayers and encouragement. It's really humbling, you know? I have been changed by this experience in so many ways and I thank God for His faithfulness, comfort and guidance, and for your friendship, prayers and support.

We are a blessed family.

Cold Stressing and Mom Stressing

Today (Sunday) was a big day for Phoebe. Around 2:00 pm, her incubator bed was turned off, which means it was no longer keeping her warm. The doors were left open and Phoebe's job was to get adjusted to room temperature and maintain her own body temperature. I visited her at 5:30 and when I left at 7:00, she had just been moved to a new room. When I returned to the hospital at 10:30 pm for another visit, she was already out of her incubator and in an open crib...or as we call it, a big girl bed. :-) Her weight tonight was 4 lbs 13 oz, which is a nice little gain from yesterday.


 This is all definitely good news, but it seems like the "cold stressing" happened pretty quickly. She went from a heated incubator (at a low temp, but still heated) to an open crib in about 7 hours. That seems fast!  Then, when I was giving her a bottle at 11:00 pm, she had a brady (heart rate drop). She hadn't had one since Thursday. I don't know if it was related to the cold stressing, or to the stress of bottle feeding, or just to prematurity. Nonetheless, it's a little scary when your baby's heart rate drops while you're holding her! She came back up pretty quickly, but she ended up taking the last 5 ml of that bottle via her NG tube. I cuddled with her for a few minutes and tucked her back in to her big girl bed and she was sound asleep when I left.

So it was mostly a good day, but that brady was a bummer. Hopefully she will quickly get adjusted to her new job of maintaining her body temp so she can concentrate on doing better with her bottles. Right now, she's doing pretty well taking every other feeding by bottle. If they try to get her to take two feedings in a row by bottle (like we did tonight), she tends to have a hard time.

So our prayer request remains the same: please pray that Phoebe stops having bradys, maintains her body temp, keeps gaining weight, and gets a handle on bottle feeding. Thanks!

Today was also a big day for the boys. Despite David and I having colds, we went to Grupp's Christmas Tree Farm and cut down our Christmas tree. We'd never done that before, but it seemed like a nice little treat for the boys. And we figured we could go and get our tree without sharing any of our germs!  It worked out...the boys had a blast. The weather was beautiful, the farm wasn't too crowded (we went during the Steelers game), and we feel good about our selection.

Yesterday (Saturday) was also a big day. We celebrated David's 3rd birthday with family and then I took grandparents and aunts to visit Little Miss Phoebe.

Chris's mom made the cake...David LOVED it!

It's kinda weird going on with life while Phoebe is in the hospital. I want to be there with her all the time, and want to be with Chris and the boys, too. On the one hand, I want to do fun outings and activities with the boys, especially since I couldn't during the bed rest. But on the other hand, I feel guilty doing those things instead of going to the hospital.  What an absolute blessing it will be when I can be with everyone at the same time!!

Happy Thanksgiving from All SIX Of Us!

Normally we spend Thanksgiving in our hometown, Wheeling. But with Phoebe in the hospital, we decided to stay home for the holiday. We visited Phoebe in the NICU in the morning and took our first family picture with all six of us. It was wild for sure...but our nurse was patient and we got a couple good shots. And it was exciting to be able to disconnect Phoebe from the monitors for a few minutes for the picture. After that we headed home and had a delicious turkey dinner. Then I went back to the hospital for a little while and Chris and the boys had a movie night.

Meanwhile, our favorite NICU nurse and friend, Mary Ann, worked that afternoon and surprised Phoebe with a 1st Thanksgiving outfit!! I just cannot say enough about what a blessing she has been for us.

Yes, it's a tad big, but it was perfect!

So our first Thanksgiving at home wasn't exactly traditional, but it was filled with blessings.

Phoebe is still doing well. She's been having one or two bradys each day lately, and we're praying she outgrows those soon. She didn't have any today. She's still taking every other feeding by bottle and doing pretty well with that and her bed temp is down just about as low as it will go. The current plan is to leave her in her incubator until she's gotten a little better with her bottles so she doesn't burn too many calories at once. It's hard work for a little preemie to eat by bottle and maintain her own body temp. She's up to 4 lbs 10 oz., which is excellent, and we don't want to stress her so much that she stops gaining or even loses weight.

Last week, when she had a CBC, her hemoglobin and hematocrit had gone down again. It's been low consistently, and the numbers were pretty low last week. But her reticulocytes were high, which apparently means she is making new blood and they are hopeful that her other levels will rebound. They will do a CBC again on Wednesday.

So our request: Please pray that Phoebe's blood count comes up. Please also pray that she continues to mature and that she "gets" bottle feeding and is able to maintain her body temp and that she continues to gain weight. And please pray that she stops having bradys (heart rate drops).


Apparently, preemies put their hands up like this when they are overstimulated and can't settle because of what's happening. In this case, "what's happening" was her mom taking the blanket off the top of her bed and taking her picture because she was wearing a sleeper for the first time!

Hope you had a blessed Thanksgiving and are enjoying the weekend! We are spending our Saturday having a birthday party with family for our son, David. He turns 3 on December 7.

God Has a Special Place in His Heart for Little Phoebes

A friend of mine messaged me recently and told me the story of her mom. Her mom's mom had health problems and was advised against ever getting pregnant. When she did get pregnant, this strong woman of faith pressed on.  A few months later she went in to pre-term labor and her daughter...my friend's mom...was born early. She was tiny and badly bruised from the trauma of the troubled delivery. But she made it, and she went on to raise three beautiful daughters in the same faith her own mother displayed. My friend's mom's name...is Phoebe. So my friend told me this story and then said this: I think God has a special place in His heart for little Phoebes. I agree.

As for my little Phoebe, she had a pretty good day. She had one brady this morning; hopefully she'll mature out of those soon. She did so-so with her bottles today, but her nurses only tried to bottle feed her twice. Her weight tonight was 4 lbs 6.9 oz. Her bed temp was down to 28.9 when I was there this afternoon, and one of the neonatalogists, Dr. Lantzy, told me that around 28.5 is when they start thinking about moving the baby to an open crib. So she's getting close.  I really like Dr. Lantzy. I talked to him tonight because he answered the phone for the NICU and must have seen the caller I.D. so he asked how I was doing and we talked about Phoebe. He's the Dr. who examined Phoebe in the delivery room and took her to the NICU and began her care. He's also the Dr. who told Chris he was impressed with how calm he was. :-)

One new prayer request: Phoebe will get a CBC tomorrow. Last week, her blood count was low, so we're praying it goes up tomorrow.

I hope you have a blessed Thanksgiving! Chris, the boys and I are visiting Phoebe in the morning, then coming home to prepare our first Thanksgiving meal at home. We're excited! I'm, of course, sad that Phoebe will spend her first Thanksgiving in the NICU, and we'll miss our extended family celebrating in Wheeling.  But it's OK because we certainly have a lot to be thankful for this year.