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!