Wednesday, June 30, 2010

Exhaustedly Excited

Friday.  That’s the plan for when Gloriana comes home.  Lord willing.

What came between feeling frustrated Sunday and feeling exhaustedly excited today?  Lots.

On Monday we began seriously talking about what it would take for Gloriana to come home with us by the end of the week.  We wanted to figure that out because we’ve heard that little ones gain weight better at home.  And we’re also simply eager to have everyone together again.

On Monday we also saw the cardiologist.  He encouraged us to see whether going home with a monitor might be an option.  From his review of the case, he was quite confident that her stable health made her a good candidate to go home soon.  He also said that he wasn’t very impressed with her chest x-ray, meaning that he wasn’t 100% sure that she did, in fact, have fluid on her lungs.  Nevertheless, it’s a good idea for Gloriana to be on the Lasix.  He also told us that she was being given Captopril, which will help with her circulation.  He was also very positive about how Bella was doing.  She weighed in at 6 lbs, 14 oz, which is great!  He thought she looked so good (and had done so well with gaining weight) that he decided she didn’t need the echocardiogram.  Woo-hoo!

On Tuesday I talked with one of the nurse practitioners about Gloriana coming home.  She told us that we would need to take a monitor home with us to make sure that Gloriana isn’t having any difficulties with Brady’s, and we would have to learn how to administer her medications/vitamins.  We will also need to have her weighed every 2-3 days – we’re waiting to see whether a home care nurse would be available.

Today the nurses increased the dosage on the Captopril, so they want to watch Gloriana for 48 hours to see how well her body responds to it.  We’re figuring that all should be okay – and of course praying that that will be the case. =)

The next couple days will include getting the car seat test done, getting training for using the monitor at home, filling the prescriptions for Gloriana when she gets home, and trying to sleep despite our excitement.  I guess we shouldn’t have any trouble with that last item – we both tend to fall asleep before our heads hit the pillow! =)

Thank you.  We’re feeling like the end is in sight in terms of the hospitalization, and we know how effective all your prayers have been.  We know, too, that this is the end of one phase and the beginning of another, but we’re eager for the change.

We’ll be overjoyed to share pictures of us all celebrating Friday’s homecoming.  God is good, all the time.


Sunday, June 27, 2010

Due Date Discouragement

Today is June 27, the day that our girls were due to be born.  Belladia continues to do very well – she looks like a full-term baby and is feeding and growing well.  We’re thankful for how well she is.

Gloriana continues in the hospital.  At last check, she was 4 lbs, 5.5 ounces.  Sadly, she continues to have Brady’s – she had them on Tuesday, Wednesday, and Thursday.  Yesterday I heard a bit more discouraging news.  Although her recent echocardiogram looked good, her chest x-ray wasn’t as positive; the doctors saw some fluid on her lungs.  They figure that this is a result of the VSD (hole in her heart), so they are trying to remedy the fluid with medication.  The hospital is giving her Lasix, which is a diuretic.  They hope that the medication will clear up that fluid and also prevent fluid from building up on her lungs in the future.  The nurse practitioner said that we should figure on her staying on the medication until either the hole in her heart closes on its own or she has surgery to repair the hole in her heart.  I asked if having fluid on her lungs was reason enough to think about having surgery soon, and the nurse practitioner said no.

However, the fact that she’s not putting on as much weight as she should might be cause for surgery.

Gloriana should be putting on about 25-30 grams per day; she’s not.  Until she puts on 25-30 grams per day for 3-4 days in a row, she’s not allowed to come home.  So even if she outgrows the Brady’s and is doing well on that front, she won’t come home unless she’s also putting on weight.

While I don’t want surgery per se, I DO want whatever’s best for Gloriana to really thrive.  So I asked – again – whether not putting on weight was reason to think about surgery soon.  She said that if this continues – if she continues to struggle putting on the weight that she should – then they would have to consider whether Gloriana is showing signs of “failure to thrive.”  If that were the case (and it’s NOT right now), then they would have to think seriously about surgery to repair the VSD.  The only trouble?  The surgery is much more safe when a baby is bigger; the doctors would prefer to do the surgery when a baby weighs more.

You probably see where this is going: on the one hand, she may need surgery because she’s not putting on weight; on the other hand, she may not be able to have surgery because she’s not putting on weight.  [Sigh]  You can see after six weeks (tomorrow) of hospitalization why we’re starting to feel discouraged.  I asked yesterday if we were still on track (after the recent Brady’s) to have Gloriana come home on Wednesday; the nurse practitioner looked at the nurse, then looked at me, then said, “Well, she needs to put on gobs of weight before then if that were to happen.”  She didn’t sound hopeful.

So we wait and pray.  We pray the Brady’s will stop.  We pray the increased weight gain will start.  We pray that Bella’s check-up with the cardiologist tomorrow will go well.  We pray that we’ll have patience to get through this season.  On the one hand, we want to cry our eyes out, yet we have to be strong for the girls, our two other kids, and each other.

It’ll be good to have everyone home.  In the meantime – and all the time – God is good.


Sunday, June 20, 2010

Another setback

It’s been a good day overall; I preached this morning to a full sanctuary that was packed with visitors in town for graduation open houses, Father’s Day celebrations, and the five (!) professions of faith today.  It was a joyous day, filled with heartfelt song… thanks be to God!  Now onto an update about our Glory girl…

On Friday, Gloriana had another Brady.  So that set her back a couple more days, moving her estimated home arrival date back to Wednesday.  Just a few minutes ago, we received a phone call from the hospital; this morning, while taking a bottle, Gloriana spit up quite a bit and had a rather strong Brady.  Her heart rate dropped quite a bit and her blood oxygen saturation levels dropped, too.  It took about 30 seconds for her to return to her normal levels.  The nurse said they would be moving her from the transitional care unit back down to the NICU so that they can keep a closer eye on her.  The move downstairs shows that she’s farther from coming home.  At the very earliest, she would come this Friday.

We’re a bit discouraged.  Tomorrow marks five weeks since birth, and we were really hoping Gloriana would have been able to come home this past Friday.  This has been a trying time for us, and our patience is wearing a little thin.

And yet we know that God’s still in control.  We’re thankful that our little one will have a bit more attention in the NICU, and maybe they will figure out why she continues to have Brady’s as she nears her due date (next Sunday, the 27th).  We’re glad, too, that the medical staff isn’t sending Gloriana home before she’s ready; we would be heartbroken if anything happened to her because we pushed for her to come home too early.

So we continue to hold on and cling to the faithfulness of God.  God is good, all the time.


Thursday, June 17, 2010

One month – and one still in the hospital

It’s incredible to think that a month ago at this time, we were watching a flurry of doctors and nurses prepare for Lisa’s c-section.  We’re SO thankful to have two healthy girls – our little miracles. =)

Sadly, our little Gloriana had another Brady on Tuesday and two more yesterday… so she will come home next Tuesday at the earliest. =(  That means both girls won’t be home for Father’s Day, but we still can’t complain.  The only thing keeping Gloriana in right now is waiting for five days to pass after her last Brady.  She’s been eating about 50-55 cc’s each feeding, which is great for her size.  We can be patient until she comes home.

Bella continues to do really well.  She’s eating just about 3 ounces each feeding (90 cc’s) and is as cute as can be.  (Her little sister is adorable, too.)  Because of her size, we’re setting the alarm and waking Bella every 3 hours to eat.  It would be nice to have longer stretches of sleep at night, but (again) we can be patient because we know it’s a only for a season.

Thanks SO much for all your prayers.  We’re convinced that things wouldn’t have gone so well – and that we wouldn’t have been able to handle it all so well – without all your prayers.  We are blessed.


Tuesday, June 15, 2010

Very Brief Update

It’s been a busy few days, but I wanted to give a quick update.

First, Gloriana did NOT need a blood transfusion. =) Her blood counts were good enough that she didn’t need it, and she is producing the amount of blood that she should back into her system.  Thanks for your prayers, and praise God that that’s all working out well!

Second, Gloriana has been struggling with Bradycardias every day – I explained what those are here.  They seem to only happen once a day and while she’s eating; this makes the doctors think that it’s a problem that has to do with coordinating her sucking, swallowing, and breathing.  This simply means that when she eats, she forgets to breathe, which causes a drop in her heart rate.  It hasn’t happened since Sunday; if she can go five days without one, they believe she will have outgrown them.  So our new prayer request is that she won’t have any more Bradys, so that she will be able to come home this Friday.

Thanks for your prayers – we can’t wait for all of us to be home!


Thursday, June 10, 2010

More progress and a prayer request

It’s hard to believe that a week from today will mark one month since our girls were born.  What a whirlwind!

Belladia is doing quite well at home.  She was released from the hospital a week ago today, and the biggest difficulty she has is being protected from her (overly) loving big sister. =) We’re just happy that Daylia doesn’t show any signs of resentment or jealousy – more than anything, she absolutely LOVES having a baby sister. 

Bella and I had a good time watching the Blackhawks win the Stanley Cup last night… for a moment (just a moment) this thought cross my mind, “Wouldn’t it have been memorable to be with a group of people, at a restaurant with lots of TVs, so that it would have been unforgettable?”  But then I came back to my senses and thought, “THIS is as unforgettable as it gets – no one has an experience like mine: an incredible pregnancy/delivery/several weeks and now holding this precious gift from God.”  That’s all to say, I think she’ll always like the Blackhawks. =)

Gloriana has had a very memorable week, too.  She started bottle feeding earlier this week; to this point, she has virtually exclusively received nourishment from the nasal feeding tube.  Yesterday she did particularly well; she took an ounce (30cc) every three hours!  She did so well that they decided to take out her feeding tube!  Also in the last week, she was moved from a warming bed to an open air crib, meaning that she’s been maintaining her body temperature by herself.  She also had the central line taken out because she’s getting enough nourishment to her tummy without supplement through the IV.  And less attachments (tubes, machines, lines, etc.) mean more progress.

Things looked so good yesterday that our nurse hinted that Gloriana may even be able to come home before the end of this week!

But we hit a little snag this morning.  When I visited, the nurse asked if I thought she looked a little pale.  I thought that she did.  Also, there were a couple times when her blood oxygen levels dropped a bit.  Our nurse (Sue) said that those could be symptoms of low blood counts, so she’ll have a sample taken first thing tomorrow to test those levels.  If they’re rather low, then Gloriana may need a blood transfusion to get the levels where they should be.  Sue said that it may be due to the fact that she’s having so many blood tests, and her little body may be unable to keep up with the blood that’s taken.

So that’s where the prayer request is: could you please join us in praying that Gloriana’s tests will come back positive so that she won’t need a blood transfusion?  Thanks.

When I asked again today about when Gloriana might come home, Sue asked when Father’s Day is.  I told her that it’s a week from Sunday – June 20.  “Maybe she’ll be home for that,” she said.  Wouldn’t that be great? =) Then she can watch some sports with her daddy, too. =)


Friday, June 4, 2010

One home, one to go

This week brought another surprise: we had been told earlier in the week that Belladia would come home on Friday, but she was allowed to actually come home on Thursday!  We have been unbelievably busy since she was released from the hospital, so this is the first chance to update. =)

Bella was up to 5 lbs, 7.5 oz when she was released; Gloriana at the time was 3 lbs, 8 oz.  The kids were SO happy to have one of their sisters home – I’m not sure they really knew that they had sisters.  Seeing Bella in person helped them realize that we’ve been telling the truth. =) 

Here’s a picture from when they first saw her in the hospital lobby.

Daylia has been a very (overly?) committed little mommy to Bella – at every little squeak or whimper, Daylia says, “Ohhh, baby…” in an extremely sympathetic voice.  She was also very upset anytime that she had to stop holding her baby sister. 

Here are a few pictures of them holding their new sister.

 Kruesie is a proud (and happy) big brother.

Daylia did a great job holding her little sister (and holding her hand!).

The big kids got a little giddy and were laughing uncontrollably. =)

We’re eager to have Gloriana home, too, yet we are thankful that we have a little time to adjust to having just one out of the hospital first. =)  Thanks SO much for your prayers – it’s awesome to see how beautifully God has provided for us in allowing for Bella to come home.  We’ll continue to keep you updated… and may even add some videos for your to enjoy.  God is good, all the time.