Welcome home Sam!!

Two down, two to go! Sam came home from the NICU on Wednesday, May 27. So far, he and his brother Henry have taken it easy on us and not caused too much trouble. :) We've been fortunate to have the generous help of my mom and best friend Jen (who arrived Thursday from Amsterdam) to get us through the feedings - and to keep us fed!

Here's a shot of Sam and his proud parents just before leaving the NICU. Henry was there with us that day and actually took this shot for us. :) He's very advanced.


Getting all those car seats in and out of the new minivan isn't as easy as one might think...


Sam snoozed on the way home - once he got settled into his car seat.


Our next exciting news is that Joe will be coming home tomorrow (Sunday)! We are thrilled to have three of our boys at home, but will certainly find it difficult to leave Tom at the NICU without the company of his brothers. The nurses, nurse practioners and doctors have assured me that Tom will get plenty of extra TLC in his brothers' absence. And I'm holding them to it!

More homecoming photos to come soon!
Lots of love,
Kristin, Tim and the boys

Welcome Home Henry!!

As many of you may have already heard, we brought Henry home from the hospital on Friday!! We're all adjusting pretty well, though it's still difficult for me to grasp the notion that we're now fully responsible for him! :) He seems happy and to be adjusting well - though I'm sure he misses his brothers. :) We go to see Dr. Rougeau (pediatrician) tomorrow for his baseline check-up. I honestly can't believe the "fun" is offically starting after 9 weeks. He's already made one trip back to see his brothers in the NICU - and will probably make a few more before any of his brothers make their journey home. The nurses have even set up a small crib for Henry to hang out in - right next to the big crib his 3 brothers are sharing. We're still working out the feedings (who's getting up at what time to feed him) and how Henry's schedule will adapt to work for all the boys once they come home. It was certainly helpful to have my mom here this weekend. Three adults to one baby is a great ratio. Too bad we can't maintain that... :) Here are a few photos of Henry's big weekend:

He slept through his car seat test.


How can Henry and Joey NOT be the identical twins?! (sorry Valisa!)


Henry and his proud parents upon their departure from the NICU. The nurses all said "goodbye and good luck". We said "thanks! we'll see you tomorrow!" :)


(Henry had a great first night home, but we couldn't keep him out of his dad's beer fridge. (I take no responsibility for this photo.)


Here's a quick recap on the other boys and a few photos too...

On Tuesday, Joe and Sam got their circumcisions. Both of them handled it like champs - though Sam was certainly more vocal about it - no surprise there. On Thursday, Joe, Sam and Henry got their 2-month vaccinations. I'm not sure if Tom has gotten his yet...I need to find out. That evening, all 4 had their bi-weekly eye exams. Their eyes are still "immature", but nearing maturity - and the good news is that there are no indications of any eye issues. The bad news is that they'll all need another eye exam in 2 weeks.

Joe came off oxygen this week - except during feedings - and has been doing very well. Just this morning, they removed his oxygen monitor and will not give him oxygen unless he demonstrates a need for it. He's been eating very well and gaining weight: he's finally joined the FIVE POUND club with his brothers! Here's a shot of Joe getting his bath on Thursday evening - after eye exams.


Tom came off CPAP on Thursday - yippee!! He started out on 7 liters of air flow in his cannula, but is now down to 5 liters. Tom has been getting albuterol treatments all week (just stopped them today) and they definitely seem to be helping. When at rest, he is breathing easier and not working quite so hard - which is a step in the right direction. He took his first bottle yesterday with Dad. We're allowed to bottle feed him once a day, as long as he seems up for it. He took 18 cc's, but we're thrilled to have him truly eating again. This is a sleepy Tom after his eye exam on Thursday - with his CPAP-free face!


The nurses have informed us that Sam is a bed hog! He manages to shimmy closer and closer to Joe - eventually crowding out him and Tom. :) Sam had been hanging on to his 25 cc trickle of oxygen for a while now and we've finally been able to take his oxygen off. Like Joe, they've also removed his oxygen monitor. We'll watch his heart rate and color cues to see if he needs oxygen support. When he and Joe make it 2 days without oxygen help, they'll be able to come home. So right now that could mean Wednesday...we'll keep you posted! (Mom - are you on stand-by for an emergency trip down here mid-week?) Sam, the most expressive of the group, let us know his feelings about being bothered after his eye exam on Thursday:


Just a couple more shots from Henry's first visit back to the NICU on Saturday. I took the first photo in the car on the way to the hospital - so sweet. And the second photo is of Henry's 3 brothers in their shared crib with their pacifiers.




Gotta run! We've got babies to feed in the NICU. I'll be posting another update soon with information/rules for visitors and some options for those of you that have offered to help us out. Stay tuned!

Lots of love and hugs,
Kristin, Tim and the boys

Photos to go with last week's post

I don't know where the time goes, but I can't believe it's already been a week since my last post. Anyway - here are the photos I intended to include with that post:

These are the photos the boys gave to Dad for his desk on his birthday - one of each boy:

Henry getting a bath (okay, this was staged, but he just had a major blow-out and needed some serious cleaning).


Sam testing out his car seat.


A peaceful shot of Tom sleeping (on high flow cannula, between sessions on CPAP).


Joe smiling - as always.



Decorations for Tim's birthday party at the NICU.



Our new digs in the NICU - back out into the main room.


The gang on Mothers Day at Yesterdays, one of our favorite restaurants in the area.


More updates and photos to come... Love, Tim, Kristin and the boys

The Week in Review

Hi everyone! It's been a busy week (okay, 10 days) since I last posted an update. Here are the highlights:

My mom and Tim's parents came to visit for Mothers Day weekend. We all attended CPR training at the NICU and the grandparents got some training on bottle feeding our preemies. Since they'll be helping us quite a bit once the boys come home, they all need to have this important training and information. Plus, it was nice to have our moms here for Mothers Day - and for them to spend time with four of their grandsons.

I met with another pediatrician last week (I've "interviewed" three of them) and have decided to go with Dr. Rougeau. She impressed me right off the bat when she brought a note pad into the room to take notes on each of the boys. :) I think I'll get along very well with her!

The final chapter of the milk saga has been written and gone to print - so to speak. Bronson milk bank pasturized my milk last week and shipped it to me just this morning. We now have 140 bottles of milk in our freezer - plus all the bags that I add to the collection every day. (Thank you again to Uncle Tim & Aunt Sarah for that chest freezer!)

Tim's birthday was the 14th and the boys wanted to throw a little birthday party for him. Valisa helped decorate our room at the NICU to celebrate. We put up a photo of each of the boys and a bunch of streamers. The boys gave Tim some photos of them to keep on his desk at work.

The 15th was a big day: We ALL tested negative for MRSA!!! Since this was our second negative result, we're no longer in isolation. No more gowns and gloves!! Yippee!! On Saturday, the nurses offered to move us out of our tiny room and back into the main part of the unit - in the room we started in. So we've got our new digs set up where there's plenty of natural light and space for us to move around. It's so nice to not feel like the local lepers any more! AND - the best part is that I've been able to start nursing again. I'm only doing it once or twice a day, but the boys are doing very well with it.

Jim & Carrie MacCaughan visited the boys on Saturday. It was great to see them and the boys were so happy to finally meet Uncle Jimmy and Aunt Carrie. :) I'm sure our boys seemed so incredibly small to them - since "little" Jimmy Walter is pushing 18 pounds already!

Joey has been doing amazingly well! Since our last post, the flow on his nasal cannula had been reduced gradually. As of Sunday, he is off the high-flow cannula and just getting a trickle of oxygen (25 cc's). We hope to ween (sp?) him off oxygen completely over the next week. He's doing well with his feedings - and has had his feeding tube removed on Sunday as well. That means he's bottle-feeding or nursing for all his feedings now. If he falls asleep during a feeding, he'll wake up hungry the next time around. "Tough love", as Dr. Vitale puts it. :) Joe is weighing in at 4 lbs 12 2/3 oz - my little peanut.

Tom started getting steroids on Mothers Day. His oxygen requirements had been going back up and he seemed to be working harder to breathe. On Tuesday, they put him back on CPAP. That was not a good day for Mom, let me tell you. Its clear to me that Tom is so uncomfortable on CPAP and it's so hard to see him unhappy. But I guess the alternatives are much worse. He received a full dose of steroids on Monday and Tuesday, but has been weening since. I'm not sure Dr. Vitale has seen the results he'd hoped for with the steroids, as Tom is still on CPAP. They've reduced his flow from 6 to 5 and hope to move him back to the high-flow nasal cannula in the next few days. He does continue to gain weight (he's getting all feedings thru his tube, as he can't bottle feed while on CPAP) and is currently 5 lbs 6 1/3 oz.

Sam, like Joe, is at 25 cc's of oxygen - and dangerously close to coming off oxygen all together. On Tim's birthday, Sam's feeding tube was removed - more "tough love". He's doing very well with his feedings and gets just over 2 ounces in his bottles. We've nicknamed Sam the Spokesperson for the group. He's definitely the most vocal and doesn't shy away from telling you exactly how he feels. :) Sam is one of the "big boys" weighing in at 5 pounds 8 2/3 oz.

Henry is HOMEWARD BOUND!! Last Monday Henry was moved to just 50cc's of oxygen, then weened until his oxygen was removed on Sunday. He's doing very well without any oxygen support - and it's so nice to see his face without anything going up his nose or taped to his cheeks. :) He's been eating like a champ: losing his feeding tube and eating 2 ounces just like Sam. Right now we're targeting Friday (yes THIS Friday) for Henry to come home. He's got a busy week ahead of him, so we'll see how he fares. We may need to wait until the weekend to bring him home, depending on how he handles his circumcision (this morning - he did very well), vaccinations (tomorrow) and eye exams (Thursday). (All the boys will get vaccinations and eye exams this week.) We also need to test him in his car seat to make sure he fits and that he can maintain proper oxygenation while seated in that position.

Sam and Joe won't be too far behind Henry - potentially heading home next week. We'll see how well we can ween them off oxygen and how well they do with their feedings.

The toughest part of our journey may be yet to come: dividing our time between Tom at the hospital and the other three at home. Tom is in for the long haul and probably has another 3-4 weeks ahead of him at the NICU. We'll be recruiting all sorts of help to care for the three at home so I can spend ample time with Tom - who will certainly need some TLC in the coming weeks.

I really wanted to post some photos with this update, but I've run out of time. I have to get to the hospital to feed the boys. I've got photos of the boys, our new digs, Tim's birthday party, Mothers Day and more. I'll get them out here soon - I promise! Gotta run. Thanks for all your prayers and support. We couldn't do it without you!

Lots of love,
Tim, Kristin and the boys

Henry's stats

I neglected to include Henry's weight and length in the new post: He's the heaviest of the group, weighing in at a whopping 5 lbs 3 oz. And he's a bit shorter than Sam at 17" long.

The generosity of strangers (and those we know)

Hi everyone! Thank you for your patience (or for not expressing your impatience) in waiting for a new post on our blog. I'm happy to report that we have a lot of good news to share in this update. Unfortunately, I left the camera at the hospital last night, so I don't have any new pictures to include today. Hopefully tomorrow.

Joey is recovering wonderfully from his MRSA abscess. His incision is healing nicely and he's been eating like a champ. He's down to 2.5 liters on his high flow cannula and not too high on his oxygen requirements. Joe is a whopping 4 lbs 6 oz and 16 1/4" long. He's the smallest of the gang, believe it or not!

Tom was put back on CPAP last Friday night, but has since been put back on high-flow cannula. Tim and I are thrilled about that - but I think Tom is even happier. He really didn't seem to like it at all. He's still pretty high on his airflow/oxygen requirements (5 liters & 50-50% oxygen) and is getting breathing treatments. We thought he might have pneumonia, but now it looks like he's got chronic lung disease. He's got a fairly long road ahead of him (3-4 more weeks at least). He's a little behind the other boys with respect to bottle feedings because when the others first had their bottles, he wasn't eating due to his urinary tract infection. Then he was taken off bottles again while on CPAP. Hopefully we'll start him back on bottles in the next couple days, but but since his oxygen requirements are higher, bottle feeding may be tougher for him than the other guys. Tom will most likely be the last to come home from the NICU - and is expected to come home on oxygen. But we'll cross those bridges when we get there. Tom weighs in at 4 lbs 12 oz and measures 16 1/2" long.

Sam has had a good week - not much to report (and in this case, no news is good news). He's still off the high-flow air and on minimal oxygen support (75-100 cc's). Sam does really well (most of the time) with his feedings - eating his entire feeding a lot of the time. He may be the first to come home - in 10-14 days. He and Henry are running neck & neck. Sam weighs in at 5 lbs 1 oz and 17 1/2" long. We tested Sam in a car seat this week. (I've got great photos of that.) His shoulders are just below the height of the straps, so hopefully he'll grow just enough in the next couple weeks to come home in the car seats we've already got.

Henry has been a bit of a yo-yo with respect to his oxygen and airflow support. Last Friday, he went down to 1 liter of flow, but had to come back up to 2 liters a couple days later. Fortunately, he's gotten back down to 1 liter again - just on Thursday - and so far he's doing pretty well. If he continues to do well, we'll take him off the high flow support next week and put him on the same oxygen system as Sam (which is one step closer to going home). Henry is also very good with his feedinigs and has finished all bottles in a 24-hour period. Most of the time he's a little more hit-or-miss, but just as good as Sam. He may be able to go home with Sam in 10-14 days.

The breast milk saga continues...but thankfully with a very happy ending. I contacted the milk bank in Kalamazoo (where South Bend Memorial gets their donor breast milk) to see if they could pasteurize my MRSA-positive milk. They can do it - but the prices they quoted me were cost-prohibitive. One of the many reasons I'm such an advocate of breast feeding is because it's FREE. Its hard to rationalize spending hundreds of dollars to use the approx 11 gallons of milk we have stored. I spoke with Dr. Vitale about it earlier this week and he suggested finding a "sponsor" to cover the costs for us. Before I could make any calls to places like the South Bend Tribune, he made some calls at Memorial. I'm not sure who he sweet-talked or what he said, but he was able to secure funding from the hospital to cover the cost for pasturizing my milk!! (THANK YOU VITALE!!) Someone that we'd never met was generous and kind enough to help us. That was, of course, wonderful news that we certainly didn't expect.

Vitale also spoke with Cindy, the manager of the milk bank. We've got it set up for her to pick up the milk from our house tomorrow. As luck would have it, she'll be in the area to visit family. She offered to bring coolers with her and pick up all our milk on her way back to Kalamazoo. We certainly could have driven the milk to K-zoo ourselves, but Cindy was generous enough to offer to do this herself. Amazingly generous.

Thursday, the results came back on the 2nd culture of my breast milk: NEGATIVE!!! That afternoon, the boys were off formula and back on breast milk. Yippee!! At the NICU, a couple visitors came to see us: the pastor and his wife from Michiana Community Church of God. We've never been to the church and probably don't know any of its members - but someone at the church saw our story in the paper and "just wanted to do something nice" for us. They came bearing gifts: diapers, clothes, crib sheets, etc. What a wonderful - and completely unexpected - surprise. Thank you!

Later that day, the boys had their bi-weekly eye exams. All are still immature with no issues evident yet. (That's exactly the result we wanted to get.)

On Friday, we got the 2nd culture results on the boys: NEGATIVE for MRSA! Fabulous news! If we get another negative result next week, they'll be able to stop the isolation procedures in the NICU (gowns, gloves, etc.).

Obviously, our lives are on quite a roller coaster ride. The issues that came up last week have all changed and progressed and we're on to more issues already. The staff at the NICU - the nurses (Kiam, the boys' primary nurses: Valisa, Jugenia, Gretchen, Robyn and Kathy...who am I forgetting?), Karen the social worker, Bonnie the parent relations person and of course Dr. Vitale - have been incredibly supportive. In addition to the spectacular care they provide 24-7 for the boys, they've also taken care of us. Thank you to all of you for going above and beyond! Seven weeks (and more) in the NICU is an incredibly intense and stressful experience for any parent. We can't thank you guys enough for doing all you do to make it as smooth and easy for us as possible. Thank you to all our friends and family for all your love and support. The events last week were definitely the proverbial straw that broke our back - and I'm sure that will happen again before all the boys come home. We find comfort in knowing that you'll all be there to support us when that happens. We're sending big hugs to all of you!!!

Lots of love,
Tim, Kristin, Sam, Henry, Tom & Joe

An Emotional Week

I intended to post a lengthy update to the blog today, but just don't have it in me. It's been a long week - but I do want to give you all a quick update. Here goes:

Joey's abscess came to a head on Wednesday and it was lanced by the same ENT that did Sam's. Due to the location of the head, he was able to put the incision in a much less conspicuous spot, so hopefully he won't have any visible scars. He's back to his charming self and will be moved back into the room with his brothers today. We're very relieved.

Since it is more than a coincidence that 2 of our boys developed the same abscess in the same spot, the NICU staff - particularly Dr. Vitale - has done some research and consulted with several MRSA experts. We ended up testing my breast milk for MRSA - and it has come back positive. ALL of it - even the GALLONS stored in the NICU freezer. (I'm guessing we have about 10-15 gallons of frozen breast milk that may have to be thrown away.) The experts say that the milk should be sterile unless I have an internal infection (for which I have no symptoms) - so the most likely cause is that I have MRSA on my skin. We're all undergoing treatment to de-colonize MRSA(antibiotic ointment in our noses, oral antibiotics and an antibacterial wash for Tim and I to use in the shower). We'll test my milk again next week to see if the treatments have had any effect. In the meantime, I feel defeated. The ONE thing I can provide for our kids while they're in the NICU has made them sick and it can't be used. We're looking into pastuerization, but I'm not hopeful that this will pan out. Its so hard to see all my hard work and emotional investment go down the drain.

Some very good news: Sam may be ready to come home the week after next - and Henry shouldn't be far behind. Tom and Joe will require more time in the NICU. Tom's chest x-rays and oxygen requirements are pointing toward Chronic Lung Disease. I need to find out more info on that. Preemies that have this tend to have issues with asthma and other pulmonary issues down the road. He's getting breathing treatments (started yesterday) for that and we'll see how he responds. Since Joey was on similar oxygen support before this mess with his abscess, he may also have chronic lung disease, but we'll need more time to determine this, as he just got off the ventillator yesterday.

So given that Sam and Henry are close to being ready for discharge, we've started the ball rolling with the discharge nurse in the NICU. We met with her for 2 hours this week and have made plans for CPR training with Mom, Pat & Don since they will be helping us out when we bring the kids home. (Jen Morris - do you have CPR training? We might be able to hook you up when you get here...I'll have to investigate...)

Anyway, to say the least, it's been a hell of an emotional week. Sure, the breast milk thing isn't life threatening like so many of the issues the boys have faced. But after 6 weeks of life in the NICU with 4 babies and all the stress we've dealt with so far, this was the proverbial straw that broke my back this week. We'll get through this, I'm sure. But - wow - it's amazing just how much one family can be tested, isn't it? I have to remind myself that we're only given what we can handle...and that I need to live up to the "handling" end of that deal. Thanks everyone for all your love and support!

Love,
Tim, Kristin & the boys