Our Growing Gloriana

It’s hard to believe that it’s been 11 days already since Gloriana came home.  Even harder to believe: our girls will be 2 months old on Saturday!  Where has the time gone?

In church on Sunday, some of you heard good news about Gloriana.  More came today.  But before I get to that, I’d like to get everyone caught up to speed.

On Friday, July 2, Gloriana was discharged from the hospital and weighed 4 lbs, 9 oz.  As we mentioned in an earlier post, the doctors really want her to gain (roughly) an ounce a day; continued failure to do so results in the eventual diagnosis of “failure to thrive.”

Last Monday, July 5, we heard discouraging news from her pediatrician – in the 3 days she was home, she didn’t gain any weight.  At all.  The doctor scheduled a follow-up appointment for three days later – the Thursday of that week.  We called Gloriana’s primary nurse from the NICU – Sue – that night to see if she had any tips so that she would eat better and start gaining.  She gave some very helpful advice, and we began to see Gloriana eat much more consistently.

Last Thursday, July 8, we had the follow-up appointment and were extremely pleased with the results: Gloriana was up to 4 lbs, 15 oz – she had gained a whopping 6 oz in three days!  We could look at it in two ways: she either was making up for those days when she didn’t gain anything or she was putting on 2 oz per day.  Either way, that was really great news!

Gloriana continued her great eating habits over the next few days.  For the last couple days, Lisa and I have been noticing how much healthier – and even bigger – Gloriana is starting to look.  She’s beginning to look less like a preemie and more like a newborn (even though she’s almost 2 months old!).

This morning a home nurse (Loreen, who we liked right away) visited.  She checked Gloriana’s vitals and her weight… and the scale showed 5 lbs, 8.5 oz!  She gained another 9.5 oz in the last 5 days – again, a near 2-oz-per-day rate!  Thanks be to God – we are SO thankful!

Gloriana continues to have occasional (every other day or so) Brady’s or apnea episodes, but it’s really hard to tell whether they really happen or whether the belt/contact is loose.  Overall, she seems very stable and continues to look more and more healthy.

Belladia looks great. =) On July 5, she weighed 7 lbs, 1 oz… and I would guess that she’s past the 7.5 pound mark by now.  She’s starting to get some substance to her.

Lisa and I are doing well… Lisa’s mom helped us from the time we came home from the hospital until this past Sunday.  We were wary of how it would go when she left, but the night’s have been okay and during the day we’ve had help from friends.  It’s incredible how God’s strength – directly from Him and indirectly through others – continues to carry us through.

We thank you again for your continued prayers; we feel so blessed.  It’s one of those days when it’s easy to say, “God is good, all the time.” =)

~Jeff 

A very long – yet joyful – day

Here’s what happened yesterday.  Spoiler alert: there’s happy ending. =)

10:45 a.m. – We arrived at the hospital for the 11 a.m. scheduled training session with the monitor.  Lisa went upstairs for the training/discharge while I took the kids to the playroom.

Noon – while giving the kids their lunch in the lobby, the cell phone rang.  I naturally thought it would be Lisa letting me know that they were on their way down.  Instead, it was the nurse, telling me that the person from the monitor company hadn’t arrived yet.  Hmm.  It turns out that the fax to that company hadn’t gone through on Wednesday, so they didn’t know that we needed a monitor.  With the holiday weekend, we were told that the company was really busy and would – at the latest – have someone there by 4.

12:45 p.m. – Lisa and our nurse came down to the lobby to see how things were going.  We chatted for a while…  it turned out that our primary nurse, Sue, wasn’t scheduled to work that day, but she came in on her day off to see us go home.  It was awesome to see her go above and beyond what her job required!  Thanks, Sue!

1-4 p.m. – Lisa, Kruesie, Daylia, (Bella in the carseat) and I played together in the playroom to help the time pass.  We kept waiting for a call, but none came.  The kids did surprisingly well, with only a few meltdowns during their normal rest/nap time.

4:15 p.m. – I went up to the floor to find out where the monitor was/what was happening.  I asked if the nurse who was in charge of discharging would be able to talk to me in person.  I overheard that they paged her as she was walking to her car, and she came back to the floor.  She said that she had talked to the company, and they told her that it would be by 5 at the latest.  By this time, the waiting was getting a little old, and I was a bit frustrated to not hear that we’d been delayed again.  I asked if she could call to find out how close they were to the hospital because it was 4:30 by this time.  I overheard the phone call from the hall, and it included these words, “Oh no, that can’t be.  Isn’t anyone closer?”  She got off the phone and told me that it would be 6 at the latest.  I sighed and explained that this was really rough because we had about 40 bottles of breastmilk that were thawing/being ruined in our van during this longer-than-expected day.

We made several runs back and forth between the floor and the kids in the lobby – sometimes Lisa would get the update and tell me, and sometimes I’d be on the floor while she was with the kids downstairs.  During that time, Lisa gave the kids a snack from the little café.  The hospital had given us $15 in gift cards there – along with a parking sticker for the day – so we enjoyed that.

5:30 p.m. – I asked the nurses in we could have more gift cards so that we could have dinner at the café, too.  They agreed that that would be the least that they could do.  They made some phone calls, and it turned out that the social workers who could provide those were already gone for the day.  Hmm.  Lisa ordered extra food for herself from the hospital food service, and we made do.

6:00 p.m. – No monitor.  A little after 6, the phone rang and it was the person who brings the monitor.  He said he was on the way to the hospital and asked if we’d still be there when he arrived.  I asked how long it would be.  He said he would be there within 30 minutes.  “Yep, we’ll still be here,” I said.

7:00 p.m. – The monitor and trainer arrive.  While he worked on paperwork, the day shift nurse said good-bye and wished us well.  I learned the basics of using the monitor and we finished up around 7:45.

Lisa went upstairs and I went down to watch the kids.  She wanted to make sure that she had everything from the room.  While there, Gloriana was crying a bit because it was time for her to eat.  Lisa fed her and brought Gloriana down to the lobby at 8:40.  After a couple pictures, we loaded up the van.

9:00 p.m. – Time for Bella to eat.  Better do that before leaving…

9:40 p.m. – We finally left.  [Happy sigh]

11 something – We’re home.  [Happier sigh]

Soon after getting home, it was time for the midnight feeding.

And so it begins. =)

We’re thankful.  It was one of the longer, more frustrating days of our lives, yet it bloomed into one of the more joyful days of our lives.  We thank you for all your prayers.  Our little Gloriana was in the hospital for 46 days, which came after 77 days of bed rest.  It’s been a long journey, and we know that we couldn’t have gotten through this time without your frequent prayers.  Every one counts, and for every one we’re thankful.

We’ll try to post some pictures and more updates in the near future.  God is good, all the time.

~Jeff

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.

~Jeff

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.

~Jeff

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 27^th).  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.

~Jeff

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.

~Jeff

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!

~Jeff