Family Time

Yet another first for Sawyer was attending a major family reunion in Idaho where he got to meet his great grandparents and many other Martin relatives. Besides meeting so many new family members, his highlights had to have been attending the baptisms of his cousins and uncle in a hot springs ... and staying in Brad's uncle's RV for a couple of nights.

with his Martin great-grandparents!

with Aunt Mere & smiling at cousin Avy

with cousin Ainsley

RV livin'

Wild Wild West

So another first was that Sawyer took his first vacation - all the way out west to Montana, Wyoming, and Idaho. He was a phenomenal traveler! I think his highlights of the Big Sky, Montana leg included seeing the bison in Yellowstone Nat'l Park, getting lots of hugs from Jon and Abby, and a surprise visit from Aunt Kristen. 

Coach Wallace explaining the benefits of SFC's new 3-3 stack defense

enthralled with Abby W

ride 'em cowboy 

(thankfully this horse doesn't buck, Abby)

enjoying the porch in Big Sky with Aunt Kristen

super traveler!

hiking

Old Faithful Geyser in Yellowstone

Tuck Graduation

Sawyer has had many firsts in the last couple months. One is that he attended his first Ivy League graduation ceremony - for his dad at Tuck! In true East Coast prep style, he wore a tie and khakis. 

so happy and proud that his dad completed the MBA program

A Hunk of Burnin' Love

Hello everyone!

So sorry for the long delay in posting! Life with Sawyer at home has been wonderfully full and busy. He is now approaching 13 lbs and is smiling, giggling, and cooing. We love the interaction and are so pleased with his continued growth and grateful for his health. Enjoy the photos!

Happy Mother's Day

Homeward Bound

...drum roll please...

SAWYER is home! As of Tuesday at noon, he is no longer a resident of the ICN, but rather a resident of casa Regier! We are thrilled that he managed to be discharged before his due date on the 8th! (As one of his nurses in the ICN has been saying to him, "You're not born yet!") And in case you're wondering, he is now 7 lbs and super cute. See photos for proof.


It's so great to begin establishing a new normal of family life at home, though he is on a bit of house arrest. We had a big infection scare last Thursday and Friday. The doctors were concerned that he had the same life threatening bacteria that took Jacob's life. After 48 terrifying hours of x-rays, blood tests, no food (yes - he was so miserably hungry he became hysterical), and antibiotics, they determined that he didn't in fact have that but instead most likely a viral infection. As a result, he is sequestered here at home with no visitors allowed until his really low white blood cell count goes up (plus, it's April and still flu season). We aren't complaining - house arrest is a serious upgrade to hospital arrest. Enough said.

So hopefully the update from here on out is little more than normal newborn stuff - eating, sleeping, growing. We'll keep you posted!

Regier Family Update

We apologize for the delay in updating you … and we will get to that shortly. But first, we want to say a very heartfelt THANK YOU to all of you for your support, love, and prayers. Your cards, emails, flowers, etc. have been an enormous source of encouragement and comfort to us. This has been such a devastating and heartbreaking time as we grieve the loss of Jacob. Jacob's death was such a shock to Brad and I, and even to the medical community in the ICN. He had a number of hurdles in his life, but he always recovered pretty quickly and wasn't "sickly." The deadly infection that so quickly killed his bowels and abruptly took his life was something that he shouldn't have been at risk for at such an "old" age (7 weeks) and bigger size (5 lbs). No one here could believe it. We desperately miss our son! While we are so grateful to have Sawyer, he is also a reminder of who is missing. We wanted both! We feel a hollow emptiness and void in our lives and know that, while the intense pain of the loss will subside, the void Jacob left will always be here. So thank you for joining us on this journey and knowing and loving our boys even from afar!

Regier family photo on February 28, 2009

(Jacob in white and Sawyer in blue)

Sawyer is doing great! He is thriving at around 6 lb, 6 oz and is known in the ICN for his chubby cheeks. In fact, most have forgotten that he is a 27.5 weeker! Shortly after Jacob’s death, he began breastfeeding exclusively. He quickly took to it – and not only was it a wonderful feat but it was also one of the steps necessary to come home. His final step is being apnea (forgetting to breathe)-free for 7 consecutive days. Last week, we thought he’d be coming home on Wed. but on day 6 of 7, he had an apnea event and the clock was restarted. Yesterday we again were saying our goodbyes and, in the morning of day 7 of 7, the little bugger again had an apnea event and the clock was restarted. He also had his car seat test (sitting in the car seat for 90 minutes without apnea or dropping oxygen levels) and he failed for the latter reason.

Sawyer during his car seat test!

Clearly he is telling us that he isn’t ready to come home, though obviously he doesn’t know what he’s missing! I think he isn’t ready to leave his many ICN “grandmas” and “aunts” who love to cuddle with him. So, while we are ready to have him home, we want HIM to be ready to be able to come home. Until then, we continue “living” at the hospital. I mean, after about 10 weeks, what’s one or two more weeks?! We are confident that at some point we will be able to establish our new normal at home and hope that it happens before Sawyer goes to kindergarten.

Arja, Sawyer, Uncle Peter, and Uncle Jonathan

(Arja's brothers)

Never too early to start coaching Sawyer

Notice the intensity and focus!

Memorial Service on Wednesday

Brad & Arja would like everyone to know that there will be a Memorial Service for their son, Jacob Bradley Regier on Wednesday, March 4th at 1:00p.m. EST. at the following location:  

Valley Bible Church

851 Fairview Terrace 

White River Junction, VT.  05001

(Phone #: 802-295-5000)

*Located behind Gateway Ford at Exit 11, off I-91.   

Some have also asked about sending a card or flowers and should you desire to do so please send to: 

Ricker Funeral Home: 

56 School Street

Lebanon, N.H. 03766 

(Phone #: 603-448-1568)

Thank you for your prayers, your friendship and your concern.  We greatly appreciate it.

Grandpa Jerry Regier

Memorial Service for Jacob

Many of you have asked about a memorial service for Jacob. There will be a service this Wednesday. We are still working out all the details and will let you know as soon as we can.

Jacob Bradley Regier

It is with profound sadness that we share that our sweet Jacob passed away last night at 8:50 pm. We are so grateful to have known him and loved him for these past seven weeks. We take comfort in knowing that he is with his four older siblings and our Lord in heaven.

We are in the process of planning a service for Jacob and will let you know the details soon.

Brad & Arja

praise...

Hello all.  Jacob made it through the night, but he is not out of the woods.  He hasn't really gotten better yet, but the good news is that he hasn't gotten worse.  The doctors think his fluid and dehydration as well as his kidney issues are contributing to his condition.  His case is extremely unique, and therefore difficult to figure out, because he is a preemie with nephrotic syndrome.  The cultures that will tell us more about his assumed infection should come back tonight or tomorrow.  Thank you for your support.
 
Arja & Brad

urgent prayer, please...

Please pray for Jacob.  His infection has worsened and he is in very critical condition.  The hospital has told us that we should stay here tonight and they have provided us with a room, which implies that the ICN is not sure that Jacob will make it through the night.  He is getting antibiotics and we hope and pray that they will contain the infection.
 
Arja & Brad

good and bad news...

The good news from today is that Jacob seems to have made it over the hurdle with his breathing. It sounds like the swelling is down and he seems to doing great off the ventilator. We are very grateful. The bad news is that he seems to have another infection - he lost a bunch of weight overnight, his coloring is really grey, and his white blood count is up. He also wasn't digesting his food. So please pray with us that the antibiotics can catch the infection so it doesn't worsen - make him really sick and force him to be put back on the ventilator. This poor kid seems to tackle one hurdle and then be faced with another. These last couple days have been extremely stressful. Thank you for praying for our sweet boy. We'll keep you posted...

update...

Today was a very long and stressful one, but as of a bit ago when we left the hospital, Jacob was still off the ventilator (and has been since 9 this morning). He spent most the day very upset and unsettled but he has worked hard to breathe and hopefully we're going to make it over the hump. He is one tough kid! Please continue to pray that his airway swelling decreases and that, in the meantime, he has the strength and stamina he needs to breathe through a smaller and swollen airway. 

jacob

I wanted to write to ask you all to pray for Jacob tomorrow. Tomorrow morning they're going to try to extubate him - ie, take out the ventilator tube - AGAIN. They attempted on Friday and Sunday with no success. As I said in a previous post, the problem seems to be upper airway swelling (from the vent tube being in there for so long AND the trauma of having to reintubate him after the failed extubations) and NOT due to respiratory issues. He desperately needs to get off the ventilator, so we're praying that the different steroids they're giving this time around do the trick in keeping the inflammation at bay so he has a chance with CPAP. 

As for other updates, the kidney doctor said he was "very guardedly optimistic" that the steroids could indeed be having an effect on Jacob's kidneys. He said it's way too soon to say anything definitive, but we continue to pray that they are helping heal his kidneys and thus his problem isn't genetic but curable! We also found out yesterday he has a hernia, which I guess can be common for premie boys. That poor kid will have to undergo yet another surgery at some point before he's discharged, though it's hardly urgent at this point. It seems almost certain now that he will be the toughest kid on the playground.

As for Sawyer, he continues to do well, though today he has some yellow/green stuff coming out his nose so we're praying it doesn't become a more serious infection.

We will keep you posted. More photos soon! Thank you for praying!

new family photo

6 weeks old!

The boys are 6 weeks old today! The last couple days have been eventful ones. We'll start with Sawyer, who, within the last 24 hours has had some great progress: first bath last night (and now the fuzzy hair looks extra blonde!), he's again off the nasal canula and is doing great breathing on his own, AND he got promoted out of his isolette and into an open air little crib! This means he can regulate his own body temperature and is thus another step closer to going home. Yah!

Jacob has had a fairly good week. Overall he seems to be feeling well and has great times of alertness. (Unfortunately none of these moments get captured well by the camera since he's usually in his isolette.) He had a few protein plasma doses over a week ago and since then the protein levels in his blood have remained stable, so again we're grateful for his body's response in managing his protein leaking. The protein in his urine has gone down some and his swelling is almost gone. His UTI never progressed to something terrible (thankfully!) and so today he was able to start the steroids as a step to treating his kidneys. We are praying this works, as it means his kidney issues are most likely curable. He will be on steroids for 2 weeks and we're praying especially that he'd be protected against the potential side effects - ulceric stomach and suppressed immune system. He'll be on Pepcid and an antibiotic preventatively because of the side effects. We should know within the 2 weeks if this is working and thus if he has Minimal Change Disease. He also had some genetic testing done, so if he doesn't have MCD, we should know the results of his genetic testing in 2-3 weeks. 

He is still on the ventilator to help him breathe, but the doctors have been talking for weeks about trialing him off it. Well, yesterday they did it with no success. It was a traumatic hour for him (and me!) as his vent tube was taken out, CPAP put on, a miserable Jacob wheezing and struggling to breathe through a tiny airway, and then a couple attempts to put the vent tube back in. It turns out that his lungs are most likely strong and capable to be off the vent, but he has a lot of swelling in his vocal cords and throat from having that tube in there for almost the entire time he's been alive! The solution for the swelling is steroids - so the idea is that the ones he's just recently been put on for his kidneys should help with that. Consequently, tomorrow they'll take him off the ventilator again ... hopefully with some success, in which case he'll be on CPAP (the snorkel gear). We're really hoping and praying this is successful! We can't WAIT to have him off the ventilator at long last - and to be able to hear him make noise again!

I think that's all the news for now. We're especially excited to share the photo with the boys together. It's the first time they've been together since they left the womb!

the boys together again

update

We were very gung ho to start the steroids today as a possible diagnostic and treatment for MCD. He was all set to begin and then one of his urine tests came back with bacteria suspicious of a Urinary Tract Infection. Since his situation is more precarious regarding infections, the doctors are taking no chances and have put him on antibiotics just in case. Apparently steroids  compromise the immune system, so, as a result of the possible UTI, he has to wait a week to start the steroid treatment. This is a bit disappointing because we were so eager to start and thus get closer to an answer and possibly even a cure. So we won't know for a bit but will be sure to let you know when we do! Jacob's protein level in his blood has remained good, as has his urine output. We are so grateful for his progress.

Something else we're grateful for - weight gain! Sawyer has officially graduated to the "5 pound" club, having weighed in at 5 lb, 1 ounce tonight. Woo hoo!

more visitors!

sweet jacob

sawyer, eyes open

sleeping Sawyer w/ Debbie & Judy

p.s.

THANK YOU to the SFC folks for the adorable baby gifts and their incredibly generous contribution toward a larger item or two (I'm thinking stroller or car seats!). I thoroughly loved my mini-shower! We are continually overwhelmed by your continued love, thoughtfulness, and generosity! 

THANK YOU!

Update

Regarding Jacob's neuphrotic syndrome and the results we were expecting to get today...

Unfortunately, we didn't find out today exactly what the cause of Jacob's protein leakage is, but we did get some answers. (They couldn't tell from the biopsy if things were such due to Jacob's prematurity or due to something else.) They have concluded that there are 3 possibilities to explain his issues (3 instead of about 15). The first two are genetic defects and the 3rd is Minimal Change Disease (which is extremely rare in premies - ie, there are a handful of cases worldwide). If it is Minimal Change Disease, due to his young age/premature birth, the doctors believe that the normal course of treatment, corticosteroids, could/would actually cure him of his protein leakage issues. Cure! So they are putting him on these steroids, along with a couple other medications to treat the possible risks/side effects, for 2 weeks. If, by the end of that time period, things haven't changed then they will rule out MCD. If what Jacob has is indeed MCD, we should see improvement within the 2 weeks and they will continue the steroids for a number of subsequent weeks. In the meantime, Brad and I will have some blood work done for genetic testing to determine or eliminate the two genetic possibilities.  So obviously we are fervently praying that Jacob has MCD and that, consequently, he would be cured of his kidney issues. The doctors plan to start him on the steroids soon.

The doctor said there is nothing now that indicates or leads him to speculate which of the three it is. He did say, however, that he is pleased with Jacob's response thus far to the plasma protein and diuretics and that that gives him a good prognosis for the future, whichever of the three paths it may be.  

We feel relieved to have some more answers and continue to wait expectantly for more answers. We continue to ask God to miraculously intervene and provide a prognosis that includes complete healing. Until then, we will keep you posted... THANK YOU for praying!

In other news, Sawyer is off the nasal cannula and spent the day breathing 100% on his own. He has been doing fabulously thus far! In addition, he is just starting to breast feed. We are extremely proud!

Also, we have had a visit from two dear friends who worked at the high school in San Diego with us come visit for the past couple days. We have LOVED seeing Debbie and Judy and introducing them to the boys. They have been an enormous help with meals, errands, and overall moral support! Thanks for making the long journey from CA to visit us and big HUGS to all our fellow Eagles in San Diego! We miss you!

S&J's first visitors!

Uncle Jonathan & G-ma Ramey visited back in January

G-ma Nancy holding hands w/Jacob

Arja & Nancy holding Sawyer

more photos!

jacob's scar #2

sawyer, bright eyed & bushy tailed

a happy jacob

sawyer sleeping

just a short report

Jacob continues to have albumin (protein) doses and that combined with his diuretic medication have really helped reduce his puffiness and helped him lose weight. The protein level in his blood has increased a bit and the protein in his urine has gone down quite a bit. He has also started to look around more (thanks to being able to open his eyes finally!), smile, and overall seem to be back more to his old self. We are so pleased to see some progress at long last! Thank you for your continued prayers for this guy (and us!) as we wait to hear the results of the biopsy.

Sawyer is doing great! He continues to gain weight and will be approaching 5 lbs before we know it! He has been doing great with his breathing (needing almost no oxygen), so soon they'll try removing the low-flow nasal canula and see how he does breathing 100% on his own!

That's all for now...

s&j photos

sawyer & brad's ring

jacob smiling

sawyer KCare w/brad

jacob & dad

Update

Today was another full one! We met with the kidney specialist again and learned more regarding Jacob's condition. Like we mentioned before, he has a neuphrotic (kidney) syndrome, which means his kidneys are unable to retain sufficient amounts of protein. It is either congential (genetic) or acquired (non-genetic - in his case perhaps from medication). Regardless of the type, it is serious in that it affects his overall nutrition (which affects growth), causes higher cholesterol, and causes higher risk to infections and blood clots, to name just some. (I'm not going to attempt to explain why this protein leakage results in these risks, though if you're really interested you could check out wikipedia.) So the biopsy results will tell us if it's genetic or acquired, as well as, if genetic, if it's two of the possible 10 types. In addition, in three weeks we'll learn the extent of damage of his syndrome, regardless of the type. While we learned all that is potentially involved in either scenario, at this point there's not reason to go into it until we know more. All I can say is that the genetic types aren't really treatable but are able to be managed with different levels of medical intervention. The acquired ones are often treatable through medication, protein supplementation, and overall self-repair. We were told we'd find out the results late Tuesday afternoon at the earliest. So until then, we're praying that it is acquired and that God would miraculously heal the tough little body of Jacob's that He so wonderfully created. 

Last night Jacob had his first dose of protein (albumin, for you medical junkies) in the form of blood plasma via IV, along with a diahretic medication to help flush out fluids. That helped his urine output increase dramatically (yeah!) and helped him not gain weight last night and thus is less swollen. In addition, his first blood test showed increased protein, which is good, AND his urine has showed decreased protein from the last day or two. (Simply put, in his case increase in protein in urine = bad; increase in protein in blood = good.) We are so grateful and relieved that he has made great strides already! They'll monitor that level to determine when he'll need another dose of protein. His recovery has been good; he's back to full feeds of breast milk and he's back to his pre-surgery ventilator settings. Again, we are very relieved and proud of his recovery! 

So thank you in advance for joining us in prayer and praise for Jacob's health and recovery. We are praying that his kidney issues are not genetic and that God would miraculously intervene to heal him. We'd also ask you to pray for discernment for the medical team as they determine the juggling act between restricting his fluids until his fluid retainment problem resolves, yet getting enough calories for him nutritionally (since breast milk is obviously a fluid) and overall fluids for his hydration. This is unusual so there are no textbook formulas. 

The words in Isaiah 41:10 kept coming to my mind yesterday - to not fear because God is with us and will strengthen and help us. We are thankful for God's presence, strength, and peace; we need it!

Thank you so much for your prayers and support! We'll update you on Tuesday or whenever we learn the results.

P.S. So as not to neglect the "older" brother, Sawyer is doing great! His feeds just increased and he continues to do really well and grow. (Oh, and he's earned quite a reputation as a super pooper in the ICN... you can use your imagination on that one!) He is now 4 lb, 10 oz! We are so thankful for his health and great progress!

update

Jacob ended up having the surgery today to remove some of his kidney tissue for a biopsy - and he just got back. We are grateful that it went well and he is now recovering. He's now got a scar on his lower back right to complement the one on his upper left.  We'll know more regarding the results of the biopsy in the next couple of days - hopefully by Monday. Thank you for your prayers! We are so relieved that he is back and it all went well!

Baby Jacob

We just had a text msg from Brad and Jacob was taken to surgery for the kidney biopsy.  please pray for his safety and wisdom for the doctors.  Thank you!

 

Grandma Sharyn

J update

Friends,

Yesterday we got very devastating news back from Jacob's kidney consultation. In short, he has an unusual congenital kidney syndrome that is very serious. He will have surgery probably today or, if not, tomorrow to get a biopsy of his kidney tissue to determine if the syndrome is the result of a genetic defect or of some potent medication he took to try to close his duct (which didn't work and thus he had the heart surgery). Obviously we're hoping it's the latter, as anything genetic isn't really treatable and would potentially affect Sawyer and future kids as well. But either way, the best case scenario is a very long, slow, and difficult road. We feel weary, scared, and disappointed as we anticipate another procedure as well as the outcome. We covet your prayers, especially for Jacob's safety and healing.

I will have more info once we meet with the kidney specialist again today and also when we know the results of the biopsy. For future updates, instead of sending out emails, we now have a blog that you can check or subscribe to: www.regiertwins.blogspot.com

Thanks to Meredith for setting it up and maintaining it.

In Him,

Brad and Arja

32 weeks

Hello everyone,

Today the boys are at 32 weeks! It's crazy to think that if they had been born today, they'd still be TWO MONTHS EARLY! Anyway... just wanted to fill you in. Since Jacob's update is longer, I'll start with Sawyer...

Sawyer is doing "terrific" as everyone in the ICN keeps telling me. He's on a low flow nasal canula (1/4 liter of pressure) and room air for oxygen. This means that he really needs almost no support breathing; just a tiny bit of oxygen when his belly is full after eating. He weighs 4 lbs, 7.5 oz. That's right, folks, almost 4 1/2 lbs. Wow! He's eating well, growing ... nothing too new with him, as he continues to be the MVP of premies. 

Jacob continues to be doing just okay. We've learned a little more about what seems to be the issue: that his kidneys are spilling a lot of protein. Instead of utilizing the protein, he's peeing it out. This has caused the fluid retention and consequent puffiness. The good news is that his urine output has increased and is now good AND that he has finally lost weight (ie, fluids) the last couple of days. The bad news is that he still has a lot of protein in his urine and the doctors are completely puzzled. They said they don't typically see it in a baby this late after birth. His kidneys are clearly functioning, but they can't figure out the protein leakage.They originally thought it was linked to the staff infection and/or nutritional deficiencies, but he's now done with the antibiotics and the staff infection seems to be gone, AND he's had good feeds for a bit now. So those don't seem to be why. We are waiting on a consultation with a renal specialist and hope to get some answers there. It's interesting because in looking through his chart, I realized that he hasn't always done this. Interestingly, it started at the time they discovered the staff infection and started him on some potent antibiotics. It's obvious his kidneys were taxed. He's still needing the ventilator to breathe and, because he's on such low settings, it seems to be linked to him just not feeling good. I think he's close to getting off but not sure he'll be able to make the leap until the swelling is down and he's back to feeling like himself. They've restricted his fluids so his breast milk feeds haven't gone up, which has raised concerns that he's getting enough food to grow. So I'd continue to ask for prayer for this little guy - that God would give wisdom to the doctors and that ultimately God would touch and heal his kidneys & his body would be able to utilize the protein - and then he can move forward- get off the ventilator, increase feeds, etc.  Otherwise, he eats well, poops and pees well, his lungs look really good in the xrays, and his heart is great - so everything else seems to be normal. They guess that his real weight (minus the fluid puffiness) is 3 lbs, 12 oz. 

As their parents, we know we have much to be thankful for, and also obviously have some big things to be concerned about. One of the Bible verses that has meant a lot to me since I found out I was pregnant with the boys is Psalm 33:20-22 which talks about WAITING IN HOPE for the Lord. And that is what we are continuing to do: wait in hope.

Thank you so much for praying!

Love,

Brad and Arja

p.s. The photo is of Sawyer with Brad's mom, who just came to visit and was an ENORMOUS help! Thank you, Sharyn!

G-ma Regier w/Sawyer

Sawyer in clothes!

update on Jacob

Thank you so much for praying for Jacob! Yesterday and the day before were tough days for us and your prayers have been truly invaluable. I apologize for the delay in updating you since I requested prayer. I wrote an update yesterday morning but, in my haste, lost the email and didn't have the time to rewrite it. And then I wasn't home again until late at night. So here goes:
Fortunately Jacob hasn't gotten worse regarding his urine output, vitals, etc. The antibiotics seem to be helping with his infection. Unfortunately, however, he has continued to gain a lot of weight each day and has not starting peeing off the incredible excess fluid he has. When we spoke with the neonatalogist on Thurs. morning, he said that at this point he's not too worried about Jacob's kidneys or lungs - that the problem is with the fluid retention. He thinks the retention has to do with the infection, antibiotics, and nutritional deficiencies - and that it will take time for all this to resolve. Unfortunately, the "waiting and seeing" since Thursday hasn't really resolved anything - he continues to retain fluid and, while thankfully his urine output volume has improved (they weigh their diapers) and is now back in the "normal" range, it isn't nearly what it should be to get rid of the fluid. I'm not sure what they'll recommend this morning, or if there's much to do besides "wait and see." That poor kid, though, his entire body, but especially his bottom half, is so puffy I don't know how he pees. He must be so uncomfortable.

The good news with him is that he is at full feeds with breast milk, so once his course of antibiotics is over (in maybe a week or so), then they'll be able to take out his IV. This is especially good because it's less risk for further infection - and, due to the swelling, they have to put in a new IV line almost every day. Ugh. Also, they are starting to wean him off the vent, which we don't want to push since he has other areas more pressing to focus on, but we'd like to see him off that ventilator!

So overall, I wish I had more (good) news to report. We continue to pray that God would mobilize his fluids, protect him from further infection, and heal his body. This poor kid has had a rough and long recovery from surgery and we are ready for him to be healthy and move forward like his brother! So we ask that you continue to join us in hoping and praying... hoping and praying.

His brother Sawyer, on the other hand, who didn't have to have surgery and such, is doing exceptionally well. He improves with his breathing abilities, eats well, gains weight, poops and pees like a champ - he really is a star premie. We are very thankful.

THANK YOU for all your prayer support. Today is their one month birthday and it literally brought a lot of tears to my eyes to know how much people support, care, love, and pray for us. We love and need that - so thank you! When there is a significant update, I will be sure to let you know. Until then, no news is just that - no news. I will most definitely email with good news.
Enjoy the attached photos!

With much love and GRATITUDE,
Arja and Brad

swollen j

sawyer smiles

prayer request for Jacob

Dear friends,

I'm writing to ask you to pray for Jacob. He's just not doing well. They discovered a couple days ago that he has a staff infection (probably from one of his IV lines) and has been on antibiotics to clear it, which seem to be helping in some respects. But he's clearly not feeling well as he's still relying on the ventilator to help him breathe and he's become more sick. The biggest concern, however, is that he's been storing fluids. He's been gaining an inordinate amount of weight for the past few days - not real weight but fluid retention weight, and hasn't been peeing out the excess fluid as he should. The concern is why he isn't mobilizing his fluids, why his kidneys aren't functioning as well, and that the excessive swelling/puffiness will cause his very stretched skin to break down. They believe the root of this is nutritionally based, as he's had a number of diahretic medication treatments (which by nature flush everything out), antibiotics, surgery, not to mention not being able to get breast milk feeds for a number of days (related to surgery), etc. - all things that have thrown off his nutrition balance. They're trying to figure out the problem to then correct it, but each day it has gotten worse and consequently is a more serious issue now.  (And they aren't even going to try to get him off the ventilator, which needs to happen, until he recovers.) So the big prayer request is for overall nutritional balance, that he'd mobilize all that excess fluid, and that his kidneys would start working better. 

This is a bit scary for us parents and we're asking God to touch and heal his little body and ask you to join us in that!

Love,

Brad and Arja

chubby jacob

sawyer

jacob

update on Jacob & Sawyer

Dear friends,

Happy February! We can't believe it's been over 3 weeks since life as we had known it so drastically changed with the arrival of our boys! Here's an update...

Jacob:
Overall Jacob is doing pretty well, though his recovery from surgery has been slower and longer in regards to his lung support than we had hoped and expected. He is still on the ventilator and doesn't seem in a hurry to get off of it. While he needs minimal oxygen, he really needs the pressure support. The doctors speculate it has to do with the fluid retention issues he's had, which is really common post-surgery. He's had to go on a few rounds of a diahretic medication to help him pee out excess fluid, specifically that has collected in his lungs. After the medication, he seems to be able to be weaned off the vent but then a few days later his settings need to be turned up and xrays show he has fluid again in his lungs. One of the things that helps premies not retain fluid is protein, so as his breast milk feeds increase, we're told he should have less of an issue with this (as has been the case with his brother). So the big prayer request for Jacob is his overall recovery and health, and that his lungs would be strong enough for him to get off the ventilator. The vent has a lot more potentially damage effects when on it more long term - from higher chance of infection (such as pneumonia) to tissue damage to his lungs, vocal cords, etc. We'd like to see him "promoted" to CPAP (the snorkle-like gear, which he was on for a day this past week but wasn't ready and had to go back on the vent). The other concern with all this is that he's developing more chronic issues, which we're hoping and praying isn't the case. They also suspected an infection last night, so he's on antibiotics. As you can see, this little guy has had more than his share of tests, procedures, and medication in the 3+ weeks he's been out-of-utero! We continue to trust that the end result of this is a healthy, strong boy who's more than tough enough to take on his beefy older brother! The good news for Jacob is that all other systems work great: he tolerates breast milk well and continues to have his feeds increased daily; his kidneys and bowels work great (need I say more?!); and his heart is functioning fabulously and the little murmur they'd heard post-surgery turned out to be a flow murmur (in other words, just how the blood flows - nothing abnormal or worrisome and something he'll outgrow). He is alert, growing, and overall super cute (photos attached as proof!). I think he's up to around 3 lbs, 4 or 5 ounces.

Sawyer:
Sawyer is doing fabulously! He has been on CPAP (the snorkle gear) because he, too, needs the pressure - ie, keeping his lungs open when he exhales so the little balloons of air don't collapse. Earlier last week, he had two days off CPAP and on the nasal canula, but then tired out. I think they're going to try taking him off today and put him on the canula. That is extra exciting to us, as it allows us to better see his oh-so cute face and hair. It also has enabled him to get familiar with the breast in preparation for breast feeding! His feeds have increased to where he's at full breast milk (through the feeding tube in his mouth, of course), which means he's eating a LOT of milk and that he no longer needs extra food through an IV (and thus his IV has been taken out). That is great progress! His kidneys, bowels, heart, etc. continue to work fabulously. (In fact, Brad can tell you just how well his bowels work. During Brad's 1st poopy diaper change, Sawyer began to spray poop all over his isolete and covered himself, his dad, and his little home in poo! Brad's gone down in diaper infamy at the ICN...!) So overall he's doing really well. As of yesterday morning, he weighed 3 lbs, 14.5 ounces. That's right folks - a little over one more ounce and we've hit the 4 lbs mark. Woo hoo! Like his brother, photos are attached as proof of his cuteness. (Sorry for the huge file size...)

They boys are approaching 31 weeks. We've been told that as they get older, most likely they'll outgrow a lot of these prematurity issues. While life continues to be overwhelming, exhausting, and scary at times, we are so proud of our guys and so happy to have them in our lives! We can't WAIT to introduce them to you! They are just as precious as can be!

Much love,
Brad and Arja

sweet sawyer

jacob's scar