Gloriana’s Heart

After a long hiatus from updates, I’m back… with extremely good news!

On Tuesday afternoon, Lisa traveled with our girls to the University of Chicago hospital to see their cardiologist.  We wanted to find out what was happening with Gloriana’s heart – how the hole in her heart was and how much longer she needed the monitor.

First, we were pleasantly surprised to find out that the hole is nearly completely closed up!  Amazing, incredible, astounding!  This didn’t seem possible – especially considering that she had a moderate-plus sized hole and that we were told multiple times that surgery was virtually unavoidable.  So we praise God!  From many angles, the doctor was unable to even see the hole.  He believes that the hole should be completely closed up by the next doctor appointment, and we should be able to avoid surgery.  Wow!

Second, we found out that the heart monitor will (Lord willing!) soon be something of Gloriana’s past!  She is currently off the Prevacid for her reflux, and we’re making sure that her body responds well to that change… that’s why she still has the monitor.  After a couple weeks characterized (we pray) by no alarms going off, she’ll be able to be free from the monitor!  Another HUGE answer to prayer.  Again, praise God!

Gloriana continues to do amazingly well.  She is gaining weight – now over 10 pounds.  Bella continues to hold just over a 3 pound weight advantage over Gloriana, which will likely even out at around their second birthdays.  The doctors and nurses are impressed with how good Gloriana looks… each time we go in, they can’t get over it.

We’re blessed.  We’re SO thankful for your prayers, for the love you’ve shown, for how faithful God has been through the rockiest yet most-growth-inducing year of our lives.  May God’s richest blessings fall on you in this new year!

PS - Check out the girls' belated six-month pictures!

~Jeff

Belladia Faith - from Dec 28, 2010

Gloriana Joy - from Dec 28, 2010

Bella & Gloriana... so adorable!

Praise God - good news!

The title is a bit of a spoiler for the rest of the this update, but I couldn't resist!  We are SO thankful for the way that God answered our prayers for Gloriana's heart. =)

First things first, the cardiologist was explicitly surprised at how good Gloriana looked.  He was further surprised to hear how well she has been since the last appointment: good apetite, putting on consistent weight (up to 7 lbs, 4 oz today!), no difficulty breathing, and no bouts of sweating.  He said any or all of those characteristics would have been warning flags that something is wrong.  Not having any of the above problems shows that things are going quite well.

The doctor listened to Gloriana's heart and said that her heart murmur was significantly quieter than 3 weeks ago, which indicates that her VSD (hole in her heart) is reducing in size.  Praise God!  The rest of his exam left him impressed, too - her respiratory and heart rate were both right where they should be, which are even more good signs.

I asked what the prognosis/possibilities/probabilities are from here on out.  He said that there is a 30-40% chance the hole in her heart will continue to close and won't have any problems.  There is a 50% chance that the hole will close more, but not completely - and then surgery would be necessary sometime after her first birthday to make sure everything is fine.  There is a 10% chance that the hole would close incorrectly, causing problems in the tissue around the hole and resulting in surgery to correct that.  Overall, we were encouraged with the set of news that he gave us about the VSD.

I reminded him that 3 weeks ago there were concerns with the mitral valve.  "What's the status of that concern?"  He said that it's likely NOT a valve issue at all - in fact, if it were, we would be seeing difficulties in the areas I mentioned above.  "What, then, caused the enlarged chamber three weeks ago?"  Most likely, he said, it was the change in bloodflow because of the VSD healing, along with the increased volume of blood in that area of her heart from the VSD - "an artifact from the VSD" were his exact words.  "So what about the valve, then?  Any need for treatment?"  He said that valve problems are best avoided and said that they were quite certain we could rule out that problem.  Instead, the chamber has likely already reduced in size due to the VSD reducing in size... and both that chamber and her entire heart should eventually go back to their normal size on their own.

"On their own" is a funny phrase because we know that nothing ever happens "on its own."  "In him [Jesus] we live and move and have our being."  So does Gloriana.  We'll never know whether there actually was a valve problem 3 weeks ago... whether it was merely an artifact from the VSD... or whether - seen through the eyes of faith - that the valve didn't require surgery because the Great Physician Himself healed Gloriana.  Amazing.

We are moved beyond words.  This day - along with so many through the journey of the pregnancy, surgery, bedrest, NICU stay, and the rest of the roller coaster ride since - is one of those "immeasurably more than we can ask or imagine" kind of days.  We were cautioned that we're "not out of the woods yet" by the cardiologist, but this is still very good news.  If all continues to go well - and we don't see any of the abovementioned concerns - we'll see the cardiologist again in about a month.  Incredible. =)

Thank you again for your unwavering prayer support.  I think of the old African-American spiritual song: "If it had not been for the Lord on my side... where would I be?  Where would I be?"  This journey has been - and continues to be - unceasingly marked with grace.  We're reminded today of what Gloriana Joy's first and middle names mean: "God's glorious grace brings JOY."  Praise God!  God is good, all the time.

~Jeff

Midweek Pause

We’ve had an incredible stretch of a week or so, and I thought – if you’ll promise to pray for all three families involved – that I would share a bit of what’s on my heart.

First, my best friend and his wife had a healthy (very) little girl who was born at 28 weeks last Tuesday.  It’s ironic that they’re in the same NICU where we (felt like we) lived for several weeks, but it’s a blessing that little Emily is doing well and that they know the ropes a bit because of our experience.  Please pray for the Darlings – you can follow their progress and hear a story of God’s faithfulness in the delivery here.

Second, tragedy struck our church on Sunday morning.  During the service, news came that a 25-year-old member of our church – Devin Dorn – passed away suddenly that morning.  It came completely out of nowhere, and no one knows how/why it happened.  Devin had graduated from Purdue University last year and left behind a loving extended family along with the love of his life and longtime girlfriend, Jamie.  I saw his heartbroken loved ones at the visitation tonight and saw how loved he was by the number of people there to visit.  Pray for them as they’ll face another long day tomorrow with the funeral.  They’ll need God’s sustaining grace everyday as they mourn his loss for a long time.

Third, our family needs your prayers for three big reasons:

1. Munster CRC has extended a call for me to be their Senior Pastor.  We hope to respond to the call this Sunday and would appreciate your prayers for discernment in the days to come.
2. We had mixed results at our urologist’s appointment on Monday.  At one time Gloriana had a slightly enlarged kidney, but now it appears to be normal in size – praise God!  Belladia, however, still has an enlarged left kidney – something that’s been watched since here.  At this point, they think that it’s a Ureteropelvic Junction (UPJ) obstruction.  This simply means that the tube that is connected to her kidney and brings the urine to her bladder is narrow and/or obstructed.  When the urine doesn’t totally leave the kidney, the kidney becomes enlarged (strangely, it’s parallel to the reason why one chamber of Gloriana’s heart is enlarged – the narrowing of the valve prevents blood to flow properly).  The risk for Bella’s kidney is that an infection will develop – and, if left untreated, the infection could cause the kidney to quit functioning at all.  Now what?  We’ll go back on November 15 to see how the kidney is looking, with prophylactic antibiotics to prevent infections from forming.  There’s an 80-90% chance that she will need surgery, which entails a 2 inch incision at the site and inserting a synthetic tube to bypass the UPJ.  The urologist assured us that there is a 98% success rate with the surgery, and an unsuccessful surgery (meaning an infection starts in the synthetic tube or scar tissue forms on the tube and becomes an obstruction) would simply mean doing the surgery again.  Of course, we’re praying the UPJ heals itself (more properly, that God would heal her UPJ) or, if need be, a successful surgery.
3. Gloriana has a big cardiologist appointment on Friday morning at 9:15.  We’ll be following up on our appointment from 3 weeks ago (seen here), and we’re still hoping and praying that her heart will be healed.  If not, we’re praying for wisdom for the doctors as they determine how best to treat her.

Needless to say, our plates are full this week.  Lots to pray about.  We’re SO indescribably thankful that God hears our prayers and that you’re praying alongside us.  Please pray this week for the Darlings, the Dorns (and Jamie), and our family as we each have our struggles.  Thanks.

~Jeff

A quick update and prayer request

First, our girls are continuing to grow.  Bella is up to 9 lbs 8.5 ounces, while Gloriana is up to  6 lbs 4 oz.  Every little bit helps… they’re still on the every-three-hour schedule, so it’s been a little tiring for all of us.

Many of you know that we had a cardiologist appointment at the University of Chicago on Friday.  We received mixed results.  We’ll go with the good news first.  They couldn’t really hear Bella’s VSD (hole in her heart), and they had trouble being able to see it on the echocardiogram!   Woo-hoo – great news!  She pretty much has a clean bill of health in terms of her health; it looks like the hole in her heart has closed up!  Praise God!

More good news: it looks like Gloriana’s hole in her heart is getting smaller, too!  Very encouraging news – and reason to give thanks!

However, we got some not-so-good news, too.  The echocardiogram showed that one of the four chambers of Gloriana’s heart looks enlarged.  Although the doctor couldn’t make any definite diagnosis, an enlarged chamber of the heart is typically associated with a problem with the mitral valve in the heart – that valve is most likely reducing in size.  Of course, we wanted to ask a million questions – “What’s the prognosis?” “What kind of treatments are there?” “Will this be tough to treat?” – but they wanted to follow up in 3 weeks before doing anything else.  What we do know is that trying to fix a valve is quite a bit more complicated than the one-time-surgery-fix of a hole in the heart.  That’s a little tough to hear.

But our hope is in God.  We trust that He will bring good out of this.  We are praying boldly that things will look a lot better in three weeks and that the chamber is back to normal size.  Please join us in calling on our mighty God during this new challenge.  God is good, all the time.

~Jeff

Baptism Video

Today we rejoiced at the baptism of our two girls.  We are so very thankful for the way that God blessed this day - we had hearts full of joy to see God's faithfulness in such a powerful way throughout the last year.  Church was full and so was our home... and, of course, we wouldn't want it any other way. =)

One of the special parts of the service was a video we put together this week.  It includes a song that's very significant to us - my sister Laura put it on a CD to encourage us during our week in Cincinnati for the laser surgery.  The name of the song is That's What Faith Can Do, and it's by a band called Kutless.  (If you'd like to see the video a bit larger, you should be able to double-click on it and see it on its youtube page.)

Enjoy!

An Overdue Update

First, an apology: I am very sorry for neglecting my responsibility to update everyone who has faithfully prayed for us throughout this journey.  You – both near and far, both close friends and folks we haven’t met – are vital components to the health and well-being of our girls.  Your prayers have been effective, but I have not with regard to keeping you updated.  My sincere apologies.

Second, an excuse: for years I’ve said how busy our family has been, but it truly doesn’t compare to the pace of life right now.  On a typical day, I get up and help with breakfast for the “big” kids, go to work until noon, come home, eat lunch, clean up lunch while Lisa feeds the twins, put the big kids down for nap, go back to work until 5:30, come home for supper, clean up dinner/do dishes, go outside (sometimes) with Lisa and the kids, bathe the big kids, give them snacks, put them to bed, feed the twins with Lisa, soothe Bella between the 8:30 and 11:30 p.m. feeding (that’s her most awake/irritable time), feed the twins one after the other, and get to bed between 12:30 and 1 a.m.  Repeat. =)  Oh, and sometimes church meetings get mixed into the evenings.  So it hasn’t been a lack of desire to keep you informed, it has been a lack of time.  Nevertheless, I’m sorry and will do better in the future.

Third, an update: (this feels like a sermon with three points!) the girls are doing really well.  Gloriana’s weight gains have been up and down at times – from losing 6 ounces over 6 days to gaining 2 ounces per day.  Our doctors and nurses see this as normal – as long as she’s gaining over sustained periods of time, then everything is fine.  And she has been.  She’s up to 6 pounds even, as of yesterday morning.  Just like the last update, I can honestly say that she’s looking more and more healthy.  She still has occasional Brady’s – it seems like when she gets into a really deep sleep her body forgets to breathe… it makes us thankful that we have the monitor because it usually startles her enough to get her breathing back on track.  Belladia continues to do extremely well.  She weighed in at 8 pounds and 14 ounces yesterday.  She doesn’t seem to have any major health concerns, so we’re very thankful for that.

Our next big doctor appointments come at the end of the month – on August 29, we’ll be seeing the cardiologist at the University of Chicago again.  That could be the time when we figure out what – if anything – to do about Gloriana and Belladia’s VSDs (holes in their hearts).  We’re already praying for clarity and discernment as that date approaches.

It’s a celebratory week here at our home… Daylia turned 2 on Thursday, our marriage turns 6 today (Saturday), I get to baptize the twins tomorrow morning (one of the things we prayed about here), we’re having 60 (!) of our closest friends/relatives to our home for lunch to celebrate tomorrow, and Kruesie turns 4 on Wednesday.  Did I mentioned our lives are busy? =)

We truly thank you for your prayers.  If you happen to be around DeMotte tomorrow morning, the worship service at First CRC starts at 9:30 central time.  We’d love to have you celebrate God’s faithfulness with us.  If not, continue to rejoice with us wherever you are.  God is good, all the time.

~Jeff

PS – Enjoy these (long overdue) pictures, too! =)

This was the night we took Gloriana home!

Gloriana on the left, Belladia on the right.

A very happy and thankful Daddy

Bella on the left, Gloriana on the right

Daylia is showing her personality in this picture!

Yes, they do cry on occasion... and sometimes at the same time!

Here's our whole family - we are so blessed!

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