Baby update

Hi everyone,

Thanks so much for continuing to pray for the babies, especially Seth. There doesn't appear to be any infection, praise God, but it's baffling as to what is wrong with him. He is still on greatly increased machine settings but less oxygen (down in the 50s tonight). His blood gases looked okay this morning, but his x-ray tonight is still pretty bad/hazy from his chronically damaged lungs. As his nurse said, he needs to grow new lungs! Another nurse said miracles happen in the NICU and is praying for Seth (I love how many staff members are). We do pray Seth will be a miracle, of course, but we know God will glorify Himself whatever He chooses to do.

Psalm 138:2b "I praise your name for your unfailing love and faithfulness; for your promises are backed by all the honor of your name. As soon as I pray, you answer me. You encourage me by giving me strength."

He does encourage us, largely through you all and His own precious Word, and He gives us strength! Thanks for praying for that. We need it.

Seth is growing well, praise God, and is at 4 lb 12.4 oz. A HUGE praise (especially in my mind) is that he is comfortable and tolerating being touched and cared for and treated, all of this while he's been weaned down on the morphine and Versed. He's much more alert and active as a result. It's fun to look in his eyes. His one hand discovered the other yesterday and he was rolling them over each other while I visited with him, staring right into my eyes.

David is having a bit o' trouble gaining weight (but nursed - and burped - great today!) and is a little skinny boy compared to his "husky" brothers. He's only 4 lb 7 oz. He is stinkin' adorable, though! Please pray he gains well. He had to have a blood transfusion (not a big deal) and his feeds were stopped as a result of that since blood transfusions can increase the risk of necrotizing enterocolitis, so he's coming back from that little set-back.

A praise is that Gracie has gained well! She is now 3 pounds 8.4 oz. We pray she can move off the CPAP and onto cannula soon, too. Tonight she's at room temperature in her isolette, happily swaddled. When we were there earlier she had wiggled out of her little cocoon (which is supposed to simulate the womb) and was all stretched out, spread-eagled, like she was sunbathing in her sleep. It was too cute, needless to say. ;)

Marcie needs to remember to breath. She's still on 5 liters of air per minute via nasal cannula "vapotherm." She has low heart rate spells too frequently to be weaned down on the pressure going in. Otherwise, she is doing great. She weighs 4 lb 6 oz.

Will is almost 5 lbs 13 oz! Wow, he's like a REAL baby! ;) Both he and David are taking their bottle well. He was too tired to nurse today when I was there. Oh well!

Love and gratitude,
Carrie

God's provisions

Last night we had a wonderful time meeting a family for the first time who wanted to bless us with a vehicle that would fit our family size!  We drove home with a new-to-us 15 passenger van!  God provides in wonderful ways!  Thank you Nelsons!  What a blessing for us as we get closer to the time when we'll be transporting more than just the three of us.

Isaac took advantage of the bench seat in the van for some shuteye on the trip home.

There's not much new to report on the babies today.  Seth is still about the same, needing high settings on the oscillator, but healthy and growing in every other aspect.  Will is almost 6 pounds! The girls are happy and David is nursing like a champ.

Gavin

Seth tonight

Seth's situation is not good right now.  They have gotten his carbon dioxide down to acceptable levels, but at the cost of his oxygen being quite high in the 70 percent range.  They are frustrated and baffled, not knowing what is wrong with him right now.  Needless to say, we are as well and pray that the Lord's wisdom and power would fill the NICU, the doctors, NPs, and nurses, and little Seth's body especially.  

quickly . . .

Good Morning,

I just called the NICU and heard they had to increase machine settings for Seth and that his carbon dioxide was in the 70s. Thanks for your continued prayers. I'm heading up there in an hour.

Here's a cute picture of Marcie. :)
Love, Carrie

Not much new; Friday the 28th

Hi all,

I just wrote this to a dear "auntie" of mine and as I am very tired will copy it here and call it a day. :)

I thought Gavin did such a nice job on the blog! Aside from mixing up Marcie and Will, of course. ;) I admit I am very tired/weary and very grateful to have a husband who can manage so very well everything I am too busy and overwhelmed to tackle. Thank you for your prayers - they sustain us; or rather, the Lord sustains us through them!

I am sad tonight about Seth. We got to visit with him for a while today while the top of his incubator was off and the sides were down. He looked straight into my eyes as I sang songs to him, tears rolling down my face. He is so precious and vulnerable and "trapped," although he "should" be trapped in my body still, so I need to think of it that way. But the tube down his throat is such a sad, hard thing, especially the silent crying. All this to say, thanks for the prayers. I need them! Seth needs them; obviously we ALL need them! So thankful to KNOW God is loving and actively controlling everything that happens. He is good all the time. I have rarely wanted Jesus to return as much as I do now, watching my little baby boy struggle and hearing of all the suffering in the world around us and overseas. I am so glad there is a Redeemer who will make all things well and who cares more than we can imagine in the meantime, even turning evil into good.

The silent wail (but isn't he cute?!)

Swaddled and sleeping peacefully after staring into my eyes for a while as I sang and talked to him.

There are so many people who have blessed us so amazingly with cards and gifts and meals and service and handmade items for the babies! I am shockingly behind on thanking you individually, especially those who have sent gifts to our account. I think/hope you understand and would rather I spend the time/energy on the babies right now. (I am feeling stretched, to say the least.) We thank God for you, truly, and pray His richest blessings on you, too! 

In His strong and loving grip,

Carrie

Another Marcie pic

I love being able to dress my baby in pink! Can't wait until Gracie can join her.
Thanks, Shauna and Sarah, for the blankie and hat!

Did you catch my screw-up?

How well do you know your child?  Well, apparently not that well.  The picture I (Gavin) just posted as Marcie was actually an image of a child posing as Marcie whose name is really Will.  I just assumed that the white onesie was for a girl.  I also think Will and Marcie both look the most alike of the five.  (I wonder if maybe they're identical?)

Just to give Marcie equal screen time, here she is:

I'd sure say she's smiling!

Thursday, September 27

I (Gavin) tried to come up with a unique post title that we haven't used before, but decided two minutes later it wasn't worth my brain effort.  Two minutes wasted . . . .

We didn't post yesterday, so there's quite a bit to catch up on regarding the quints.  

Seth:  Let's start with the precious little guy that needs a mighty work of the Lord done on his lungs.  He's still doing quite a bit better on the nitric oxide treatment for the pulmonary hypertension.  Yesterday they did another echocardiogram that showed the the hypertension is gone, so they have started to wean the nitric oxide down, hoping to be off it early next week.  

Unfortunately, a side effect of the gas has been that his PDA (artery in his heart that should be closed) is open and large.  The good part of the PDA report is that the blood is flowing just one way and not both, which is worse.  The bad part is that the PDA is contributing again to fluid on the lungs.  He will get another echocardiogram on Monday to determine if the PDA has closed with the weaning of the nitric oxide.  If not, we're not sure what will happen.  Having a surgery like Gracie did would be the desired thing to do if his lungs were not so sick and compromised already.  They have to move the left lung out of the way when doing the ligation surgery, so Seth would likely not do well with that.  Please pray that the PDA will close and Seth will not need surgery!  

The doctor said that he has seen many babies with Seth's lung problem and, barring a very significant improvement, is expecting that he will be going home on a ventilator through a tracheostomy (ventilator tube to his trachea through the neck).  Our prayer is that God will do a mighty work in his body and heal his lungs quickly and effectively.  He is able!  He did comment on how healthy Seth is overall.  His lungs are his ONLY problem!  He is so healthy in all other aspects, unlike so many other babies with significant lung disease.  The doctor said that is really incredible that the other four are doing so well without serious problems of our own.  

An aside:  I am reminded of a comment sever that elementary school age kids aren't old enough to be a witness to God and Christ.  Aside from the proof to the contrary I've seen in Isaac's life, our little babies in the NICU who are learning how to breathe are being used as a witness to the goodness, grace and love of our great God!  We're never too young or too old.

We can't wait to finally hold little Seth!

Marcie:  Marcie has graduated to her own open air crib!  Three down, two to go!  She is still on the vapotherm machine.  She's had a little trouble with bradycardia events (heart rate dropping when she forgets to breathe), so they've put her flow back up to five liters per minute from three, but overall she continues to do well.  Grandma was holding her today and she just got so comfortable and happy she just decided it was easier not to breathe.  She'll learn.

Marcie finally wearing clothes

Grace:  Grace is doing well also.  She's gaining weight consistently and at least trying to get onto the weight charts.  She's on the CPAP machine, but are thinking that she might be able to move to the vapotherm in a week, plus or minus.  

Carrie spending time with Gracie

Will and David:  Will is now on "the blender" with David  This is the next step down from the vapotherm cannula.  So now he and David are both just getting moist air through their nasal cannula with oxygen mixed in as needed.  For the most part they have been on room air (21% oxygen) but every once in a while they need a little O2 boost.  Three days ago, we started their "nipple trials."  I had to laugh when, in all seriousness, I heard the nurses use that term.  It sounds like our babies are trying out for some kind of kiddie olympics-- "Attention, all participants in the first heat of nipple trials, please proceed to bay six of the NICU."  Sorry, I just found it amusing.  

Seriously, though, it is the first time they've been given a bottle since up till now they've only been getting fed through a tube directly into their stomach through their mouth.  They haven't really tasted the milk before Monday.  Both Will and David did great from the start, so that was encouraging.  Last night, Carrie tried breastfeeding both of them (the second try) and they did a wonderful job.  Big steps.  It's funny how we're celebrating all these little things that I have always taken for granted-- that's life in the NICU.

Carrie really wanted Will's fat legs on the record

Grandma holding Will this afternoon

Poll time:  Who does David look like?

I think that's most of the news about the small kids.  The big one?  He's doing pretty well.  We would appreciate prayer for what to do about school for him.  He is quite bored in his current class.  The work is not at all challenging and tends to be more first grade or kindergarten-ish sometimes.  His homework tonight was: 70,___,72  Fill in the missing blank.  We were a bit incredulous.  He is testing this week to get into the GATE (Gifted And Talented Edumucation) program, but are wondering about the wisdom of bumping him up to third grade, which is where he belongs age-wise.

Carrie and I are doing well, I would say.  Now that Carrie is going to the NICU twice a day, things are a bit more challenging and she is not getting the rest she needs.  We'll have to figure a better schedule out, but we know it's going to just keep changing, especially as some kids are home and some are in the hospital.  It could be as soon as 3 weeks from now when David and or Will come home, according to the doctor!  

I've been keeping myself busy in the mornings and sometimes longer at the Center here doing a variety of things: servicing and repairing lawn mowers, chainsaws, backhoes, trucks, Bobcats, building shelves, etc, etc.   I'm very happy to get my hands dirty and exercise the other parts of my brain.  

If you've read this far, I'm proud of you.  I'm done, though.  Good night!  Thanks for your love and prayers!

Gavin 

Quick update on Seth

The head of neonatology for UT Southwestern came to consult with Seth's doctor and says that it is NOT the rare mutation that is affecting Seth. He would know, because he has worked at a center for babies with that surfactant deficiency! Praise God for his knowledge in this area! He says Seth has bronchopulmonary displasia (which we knew from the other doctor), not unexpected given he was a quintuplet born before 28 weeks. What IS unexpected, and what the whole staff is cheering about, in the head neonatologist's words, is that the other 4 are doing so fabulous!

He said Seth is responding excellently to the nitric oxide and will stay on it. He's had babies on it for weeks to months with absolutely no negative side effects. This is doing a world of good for Seth's lungs, decreasing the pressure his little heart and the machine are having to fight against. Thank God there is no heart change or damage yet, and we want to keep it that way!

One thing is that Seth will need some heavy-duty diuretics over the next two days to pull the water off the lungs that is accumulating as the nitric does its job. They will be attempting to correct his potassium and sodium levels, too. Thanks for praying!

Nitric oxide for Seth; updates; pictures

Suspecting some pulmonary hypertension (which, as I understand it, would explain the crazy variation in his blood oxygen and his oxygen needs), the doctor started Seth on inhaled nitric oxide to help dilate his little blood vessels in his lungs. Their constriction is what causes the hypertension. He is down in the 40%s on his oxygen needs and has been weaned two settings on his machine, praise God! We just pray it continues this way, if the Lord is willing to heal our precious boy.

We don't have any test results back yet. One test was for an infection that would be treatable/curable, the other was for an incurable, fatal genetic mutation. We will let you know when we know (by Friday and perhaps not for another 3 weeks, respectively) - THANK YOU for praying and caring!

We got to touch and talk to him yesterday. He was doing so well on his oxygenation when we did that and as I sang to him "I am Jesus' Little Lamb" the nurse had to turn down his oxygen delivery percentage! What a special time. Today I am going to be there while they change his bedding. I'm sure Gavin will run up too if he is able to get away from his other appointment early.

Seth with all his tubes (still gorgeous!) :)

Marcie is in an open crib! Pictures to follow. :) She's also on a lot less air flow (3 liters per minute vs. 5) through her cannula and on no oxygen! She's doing great, praise God!

"What was THAT!?" (Will)

David and Will are on the minimal airflow settings, nasal cannula only, receiving 1 liter per minute of room air. We are so thankful for that, as well as for their bottle feeding success which began yesterday. Those boys went to TOWN on their bottles! Amazing when you think everything has just gone directly to their stomach via tube prior to this. They've never had to suck, swallow, breath before. David was actually sucking faster than was good for him and had to be paced. :)

David

Will

A reflective moment afterwards

Mom and Will after his bottle

David with Dad and in his Navarro clothes!

Gracie is precious and doing well, gained 10 grams last night (we'd like to see more than that, obviously, but are grateful nonetheless). I need to go hold her, so I'd better close now! She's hard to take pictures of because it's too dark and she wears the big CPAP mask.

Love and gratitude for your prayers and all the ways you show you care,
Carrie

pictures from yesterday

Marcie asleep on Mommy (hat from Shauna)

She's awake!

Breathing treatment time for Will

Will checking out his hat from Arlene, looking cute in Justin's(?) outfit, lying on Shauna's train blanket!
These babies are LOVED and provided for by so many, praise God!

Will all cozy now!

Sunday night Sept 23rd

Hooray, Grace passed 3 lbs! She's 3 lb 1 oz. THANK YOU FOR PRAYING!

Double hooray: David is up over 4 lbs (just barely)!

Triple Hooray: Will is just 0.3 oz shy of 5 lbs!

Quadruple Hooray: Marcie is only an ounce behind David at 3 lb 15 ounces, but she actually looks "fatter" as she is shorter than he is. :) Both of them need to keep gaining, of course.

And a hooray around here tonight is that Seth is needing less oxygen than he did this afternoon, which of course you all didn't know about. He was up to 88% for no discernible reason, but thank God when I called he was back down to 58%. However, that's only 2% below the "high oxygen requirement" of 60% or greater, and the doctor and nurse practitioner both said that his case is perplexing; why is he not getting any better? They had to go back up on his machine settings (mean airway pressure, for one), although they did wean one other setting by one point. His current settings are "significant," though. For that reason they are repeating the heart sonogram, doing a bunch of lab work, sending out some blood for genetic testing to rule out a mutation affecting his body's production of surfactant (critical lung fluid for oxygen and carbon dioxide gas exchange), and scheduling a consultation with a pediatric pulmonologist. We sure hope and pray the genetic mutation isn't the issue as it is fatal (protein B).

We want to hold and cuddle our baby! It's SO hard to see him in that isolette, addicted to the drugs he has to be on so that he can tolerate the oscillator that's keeping him alive. He's almost always unresponsive when we are there due to the drugs. We're glad he's not in pain or distress, though. Thank God for that.

He's got water on his lungs and pitting edema (swelling). WE DON'T KNOW WHAT'S WRONG (arg!!), but I cling to the truth that our Father knows exactly what's happening and is in complete, loving control, no matter how I might be tempted to feel. It doesn't matter a whit whether I know what's wrong or not. Seth is God's boy; we wouldn't have his darling blond body if not for the Lord. I deeply, passionately hope and pray his little blond head is bobbing around with his brothers' and sisters' one day soon. Thank you for joining us in the battle.

In His Hands, together with all the babies, Gavin and Isaac,
Carrie

Big brother!

Quick prayer requests:

Gracie really needs to gain weight still, although she's gained a tiny bit. She's not even on the charts! I got to hold her for almost 3 hours; so precious.

Seth is not doing well. A pulmonologist should be coming from Children's Medical Center early next week to check him out; please pray for wisdom. Also, they are testing him for a rare disease characterized by failure to be able to make the necessary lung fluid, "surfactant." We pray that's negative, of course, and we ask the Lord to please heal Seth and meet all his little needs in the meantime. 

The other three babies are thriving, praise God. Here are some pictures to prove it! :)

He kept saying to both Will and David, "Hi, little guy!"
This is David, the baby he named.

With Will. Isaac says it felt amazing to hold them.

"Please, no papparazzi" (David) Thanks for the hat, Sarah! SO soft; the nurses loved them.

Two little boy heads over a darling little boy blanket (thanks to Shauna again!)
I'm almost completely better - thanks for praying!

Awww, they're touching! Bald David and Hairy Will. Everyone says David looks like Gavin. Wonder why . . . 

Marcie Jane on cannula "laughing" and looking at Daddy

Carrie is sick

We would appreciate your prayers for Carrie, since she has a bad sore throat that may be turning into a cold. She can't go to the NICU when she's sick, so that will be pretty tough on her, especially if it lasts long.

Seth is about the same. Yesterday his oxygen needs were lower but today they have gone up a bit. He is resting well and gaining weight, which is a praise.

Marcie is doing well on the nasal cannula and we are hoping she will move into an open crib soon along with Will and David.

Grace is doing ok, but today has been having some bradycardia events. She did gain a little weight yesterday but still has a long way to go.

Gavin

 

prayer answers Sept 18th

Thanks for praying! Seth's heart test showed improvement rather than increase in heart stress, and Gracie gained an ounce for the first time in days. Thank you, Lord!

Thank you for your continued prayers for both babies, particularly for Seth regarding his lung disease. All the numbers were better today, so we hope and pray this is the beginning of steady improvement and evidence of God's healing in his lungs. Please pray he remains infection-free and can be stress-free, pain-free, and continue to grow well and heal completely!

Grace is on more oxygen and the CPAP mask and is a bit sensitive to movement or touch still, so I pray she gets stronger and more tolerant so we can hold her longer and more. :) She looks and is indeed SO tiny compared to her siblings!

Weights: Will is 4 lb 9 oz, David is 3'13, Seth is 3'14 (heavier than David!), Marcie Jane is 3'10, and sweet Grace is almost 2'13.

Marcie Jane is on nasal cannula as of today and is doing GREAT, as are Will and David, and all three are on room air or just the tiniest bit of oxygen (Will). We pray this continues and they can start learning to eat by mouth next week! [They are still fed my milk by stomach tube. Will and David had their first tastes on their tongues and pacifiers today, thanks to the therapist who will help teach them to eat. Will was very interested and alert. David was not so sure. He seemed a bit concerned, furrowed brow, thinking about it. Wonder what I ate!]

Will loving his pacifier (I think he's gorgeous! I think they ALL are, of course!)

David trying out the taste of what's to come!

This picture of Will getting his pulmonary therapy (to vibrate loose lung congestion) shows how big our biggest baby is. Imagine: Grace is almost 2 lb LESS! No good pictures of her today, though.

I am really battling a BAD sore throat. Maybe because I stay up until 12:30 blogging. Off to bed - thanks for praying for me, too, and for the babies not to get it. I wear a face mask. No kisses. :(

Love,
Carrie

quick requests, praises, pictures

Gracie needs to gain weight. She is the same 3 days in a row, after losing more than 3 ounces. Please pray her body can suck up the nutrition and calories she needs.

Seth is having a heart test tomorrow to rule out any heart issue caused by his chronic lung disease. His oxygen requirements remain in the 60s and 50s, and his carbon dioxide remains in the 60s. We are very grateful for normal liver and kidney function tests today. He also gained a good amount of weight and is heavier than David now. The fact that he is growing and remaining infection-free (normal blood test today; looks very healthy on physical exam) is a big encouragement to us. We pray that continues, especially that new lung tissue will grow and his heart will be unaffected by his lung challenges.

Grace's retinopathy of prematurity eye exam was normal, a delightful answer to prayer. She did GREAT during the exam - not a squeak! - largely thanks to friends who recommended Sweet Ease (sucrose) given with a pacifier. She loved it! She actually grabbed her pacifier with both hands like she just couldn't get enough when I was cuddling her afterwards. It was so cute. :)

Marcie is gaining weight, David thrives on the nasal cannula, as does his brother Will, so we are thanking God for His mercy towards them.

We know the Lord is merciful towards Seth, too, and are waiting on Him. We recognize His sovereignty and that He has a perfect plan even in this fallen world. I like to speak verses and sing songs with Jesus' name over Seth since Jesus is the One through whom we have all victory, thanks to His work on the cross, setting us free from the burden of our own sin, as demonstrated and verified through His resurrection! I love thinking about Him ever living to intercede for us at the Father's right hand in Heaven.

We were warned the NICU would be like a roller-coaster. David clearly agrees. :)

CUTE! We love seeing David's face better again!
(Another vest from Shauna! The boys have already outgrown their preemie hats!)

Will peeking at me as I held him today

Gracie is wiped out from her eye exam. Still holding the pacifier close! Sweet little doll.

Update, Monday Sept 17th

Hi all,

Thanks for your continuing prayers, especially for Seth. His carbon dioxide has been in the 60s since Saturday night, I think, and he's needing anywhere from 48-65% oxygen. His machine settings were weaned a little bit, which probably explains the changes.

This is a constant balancing act for the doctors and roller-coaster for us! I don't even know how often to post, things change so quickly. I get excited and post, only to have the numbers look worse again in a few hours. Rest assured I will post (or Gavin will) the instant anything urgent happens, but basically Seth's needs are ongoing and serious. Even his "good" days, for which we are grateful, are days of needing lots of specialized machine support and opiates to help him stay comfortable. I am SO grateful for pain medication for my little guy!

Some pictures:

My dad's hand and mine

He was smiling in his sleep and looks like he's laughing in this photo!

Happy news:

David is in an open crib and back on cannula, no oxygen, and doing great! 

Marcie is doing really well on lowered CPAP settings, no oxygen needed, and is gaining weight slowly but steadily.

Will is getting some oxygen but is also only on cannula still and in an open crib. Fun!

Grace is on CPAP still rather than the vent, although she is having some "normal" preemie apnea and bradycardia we pray goes away.

Gracie needs to gain weight, so please pray for that. She's actually lost 3 ounces over the past few days. The move between hospitals was stressful for her.

Isaac is doing really well. I am fighting a sore throat so will be wearing the face mask when I visit the NICU. Gavin is working part-time at the Center here in Dallas and is at the NICU part-time, of course, not to mention parenting Isaac before and after school. I am at the NICU every day for a few hours, which I love. 

Thank you all for your prayers and every way in which you are standing with us and encouraging us!

Carrie

Marcie's tiny hand

More pictures of Will

Thanks to Shauna for the preemie flannel vests!

Looking for captions

Will has entertained us regularly with all his grunting, funny faces, and crossing his eyes while making those faces.  Carrie and I have laughed quite a bit at his "antics."  Here is one example.  It is common for preemies to cross their eyes as their vision is still developing and they're learning to use their eyes.  I threw a couple captions in, but thought you all might be able to come up with some more entertaining ones.