Brigham's Memorial Service

A Memorial Service will be held for Brigham on Tuesday, February 1st, 2011

Mountain View Funeral Home and Cemetery
7900 E. Main St
Mesa, AZ 85207

(On the North side of Main St, just East of Sossaman)

There will be a come and go "viewing" at 10:00am in the mortuary chapel. Due to Brigham's extreme jaundice, there is a possibility that we will not be having an open casket. We will still have that time in the chapel though, to allow family and friends to pay their respects and feel of the amazing spirit this sweet little boy has brought to our family. There will be many photographs and mementos displayed in Brigham's honor.

There will be a short graveside service and grave site dedicatory prayer offered at 11:00am.

We invite anyone who would like to attend either one or both of these services to please join our family on this special day as we celebrate Brigham.

The Roller Coaster Ride is Over

Brigham passed away last night, Jan 27th, 2011 at about 11:30pm. We were blessed to have him with us for 20 days on this Earth. Like I said last time, he was taken off ECMO at 11:45am and with the help of the vent, held semi-decent oxygenation levels for a few hours. Towards the evening though, the blood gases were showing that his oxygenation levels were dropping and his carbon dioxide levels were increasing. Even though the xrays showed that his lungs were inflating, they weren't able to function as well as they needed to.

The doctors and nurses tried a few more things like tweaking vent settings and adjusting medications, but the numbers (and his condition) were not improving. We each called our parents and had them come to the hospital to see Brigham and to be there for us. By about 10:30pm, it came to the point where the doctor told us anything more they did would be doing things to him, not for him. He was not going to get better.

We made the decision to have the doctor wrap up his silo and take him off the ventilator so we could hold him. We got to snuggle with him for about 20 minutes before he passed. It was very peaceful and we have already been blessed to know that he must have bigger and better work to do on the other side. His spirit was just too big for his tiny earthly body.

We were able to spend a few hours with him afterward, doing hand and footprints, giving him a bath, doing his hair (of course), and taking a few pictures. It was a very healing, comforting, peaceful time.
Thank you again to everyone who said countless prayers on behalf of our family. We got a miracle, just not quite the miracle we were expecting. Our miracle has been the ability to accept our Heavenly Father's will and remember the Plan of Salvation. Families are forever, and Brigham is so special, the only earthly experience he needed was to come and get a body. We know we will be with Brigham again someday. He will be our sweet little boy forever.

I'll post details regarding his graveside service as soon as things are arranged. Anyone is welcome to come.

The Incredible Hulk

Today's been a roller coaster dip. Yesterday afternoon the echo showed that the PPHN wsa a little worse than it had been on Tuesday. Obviously, this was not good news. We stressed a lot, and cried a lot, and prayed a lot last night.

They weaned his ECMO down through the night to the lowest settings it could go to without it clotting off. This morning when we came in the doctors and surgeons said he basically needed to come completely off ECMO. His body was not strong enough to handle another circuit change. Having been on this long was very stressful on his body, especially the vein and artery in his neck where the cannulas were.

This morning he was taken off ECMO with prettylow expectations regarding his outcome. Almost immediately his oxygen saturations dropeed to the high 60's, but after a little tweaking on the ventilator they slowly creeped back to the low 70's.

We went to get something to eat while they did the surgical procedure to remove the cannulas. When we came back in, his oxygenation had jumped up to the mid 80's!! The best part is that nothing had been changed on any of his settings, he just decided to chill out a little.

In reference to the "incredible hulk" title, since the ECMO's been disconnected, he's not as pink as he'd been. Obviously as his oxygenation goes down a little, he loses a little bit of color, but he's also EXTREMELY jaundiced. He's yellow enough that he looks a little green. All the extra blood products they've been giving him, combined with his liver being in a small state of shock and trauma from surgery, he's having a tough time keeping up with everything. It's not the kind of jaundice that can be treated with bili-lights though. Slowly, he'll catch up and not be quite so yellow-green :)

WE ARE ON THE CRAZIEST PART OF THE ROLLER COASTER YET! PRAY PRAY PRAY!!! IF ANYONE EVER NEEDED A MIRACLE, IT'S BRIGHAM, RIGHT NOW!

Two Tiny Buds!

First, the latest picture of Brigham hanging out with his newest beanie baby doggy. It's helping support his arm in a "down" position. He spends so much time with his arms bent tight at the elbows that the skin on the inside of his arms was starting to get sore. Now with the help of his doggy pal, he'll get his muscles stretched out a little! News update for today:

When they did the trial "extreme ECMO wean" early this morning, the blood gas showed much lower oxygenation (kind of expected), so his ECMO was bumped back up to where it had been. They're trying very hard to get him off this machine! So they're back to weaning very slowly. With the level he's at right now, they're hoping and anticipating him being able to come off sometime tomorrow.... Hopefully :)

As for getting rid of the silo, they're holding off until he's fully weaned from ECMO and stabilized for a few days on just a ventilator. There's no point in putting him through the stress of another surgery and adding abdominal pressure when he's trying to learn how to breath and oxygenate on his own.

The biggest news, however, is on his daily xray at 4am today, it showed even a tiny bit more improvement in the right side and two teeny tiny little lung buds on the left side that had started to inflate!!! YEAH! Remember, size isn't as important as function, but every bit more lung we can see inflating is something to be excited about!

There's an echo ordered for today, but it hasn't been done yet. Cross your fingers, throw salt over your shoulder, toss a penny into a wishing well, etc. and PRAY that the PPHN will continue to go down!!

We've had a lot of people ask us how we're doing and often hear comments on how strong we are being through all of this. It is not without Divine intervention! We have been extremely blessed to feel calm and peaceful most of the time. We're also soooo lucky to have each other to lean on.

We've chosen to have a "glass half full" attitude and I feel like our positive energy is paying off. Of course, Priesthood blessings and tons and tons of prayers are helping too ;) Thank you again to everyone who loves our little Brigham! We'll never be able to properly thank you all, but know that anytime you think of our family, we can feel it and we're grateful!

ECHO! Echo. echo.....

Brigham's echo this morning had some good news to tell us!

On his last echo, his PPHN was almost double super-systemic. Today it was just barely over half-systemic. I know those words don't mean anything to you, but trust me, it's an improvement!! I know I sound super excited, and I am, but it's still baby steps.

I feel like a broken record but his ECMO is down a little and the vent is up a little. His blood gases look good and the xrays are still confusingly just ok. Not bad, but not great either. They tweaked the placement of his breathing tube this afternoon and are hoping that it will help make sure all the parts of the lung have a chance to be inflated.

The ECMO is turned about as low as it can go without risking having clotting problems. During the night shift, they're going to turn it way down for about half an hour, draw the 4am blood gases and turn it back up to be safe (clotting-wise). By looking at those numbers they'll decide what to do next. Maybe a trial off ECMO?.....

We're still unsure of what tomorrow or the next day or the next is going to bring, but so far it seems like the prayers and blessings are working. Keep it up! It's amazing to me every time we hear another new person say they are praying for him. This little boy has captured so many hearts!! His miracle is presenting in tiny baby steps but we'll take it!

Is Anyone Else Motion Sick?

All this up and down and up and down.....

The xray this afternoon at 3:00 basically looked the same as yesterday afternoon's. This is kind of good news because at least it wasn't worse, but it's mostly bad news because at this point, if he's not getting better it's considered worse.

He's been on ECMO for 16 1/2 days out of his 17 1/2 days of life... That's a very long time.

After the 3:00 xray and blood gas (which looked good despite the "yucky" xray), they upped the vent settings again and ordered another xray and blood gas for 8:00.

We just called and talked to the doctor who was happy to tell us she "saw lung" in the xray. There was a tiny improvement since this afternoon. The blood gas also looked good again. She said we'd take one step at a time. We agreed.

One little downside to tonight's xray was she said she can't see any evidence of lung on the left side. This may either mean his left lung is just not inflating or there is so little left lung that there's nothing to inflate...

We're not out of the woods yet, KEEP PRAYING!! It's time for a miracle to kick in! Brigham's already proven he's a fighter but this is bigger than him and he needs all the prayers he can get! Thanks again!

He's Awake?!

I don't know how, but Brigham has actually been awake and a little wiggly a few times over the last few days. Especially since surgery, they've have him on several sedatives and even a paralytic agent so he doesn't wiggle too much and either disturb one of his many important tubes or stress himself out by "exercising" too much.

He's still getting skinnier (with help from the hemofilter) and he's starting to look like a different boy! I hadn't realized I'd gotten so used to him being puffy!

I caught a cute picture of him with his eyes open this morning. :) Enjoy! (and even though you can't tell in this picture, his eyes are really really dark gray-blue, they're beautiful!)

He'll have another chest xray done later this afternoon to check progress on his lungs. They're slowly turning up the ventilator settings. We'll see what happens.

"TWO" AWESOME FOR WORDS!

Ok, nothing is too awesome for words, that would mean I wouldn't be writing! Here's a picture version of Carrie's birthday party.

Awesome decorations!

The purse birthday cake(s), I'm so proud!

The lemon cakeballs. My first attempt of baking her cake (from a box) somehow horribly failed and looked really weird. It still tasted good though so we decided to just make cake balls. They're delicious!

Opening presents. She totally got it! She actually understood that the paper wasn't the "fun" part, and what was inside was the real present

Playing with her new alphabet puzzle. She's getting very good at her alphabet!

A grocery cart to go with her play kitchen stuff from Christmas. It even has a little seat for her baby dolls

A tricycle from Grandma and Grandpa Rogers (with a removable push handle for mommy or daddy to help)

An easel from Nana and Papa Greer

Carrie with all her presents. Holy moly... She definitely didn't lack even with her birthday being a month after Christmas.

She even got a present from Brigham. Mhylee the nurse, put together a little gift bag with premie diapers for her dolls, a little premie bottle for her dolls and several large syringes that she said work great as squirt guns in the bathtub! It was adorable!

Eating yummy cake and ice cream

Say cheese! She walked around all night "taking" everyone's picture with her new princess play camera.

Carrie had fun drawing on the white erase board and then she was nice enough to share her new present with the rest of us. We played pictionary as a family! Thanks again Nana and Papa!

We all enjoyed celebrating our sweet Carrie's birthday! Here's to another great year of life Carrie!

Brigham's Busy Day

I mentioned in this morning's post that Brigham had developed a pleural effusion (fluid build-up around the lungs).

This afternoon, they did the procedure to drain the fluid. It was technically a surgical procedure, but it didn't take very long. They drained about an ounce and a half of fluid from his chest and we were all very thankful that it wasn't blood (something they were worried it might be).

We were sitting right out in the hall during the procedure and one of the doctors came out when they were done draining fluid and said he could already see on the ultrasound that the heart was contracting easier and better. Yeah!

They inserted a new chest tube to make sure any "leftover" drainage was able to get out of the chest. So the tube count is back up to nine.

(1) chest tube
(2) ECMO cannulas
(1) breathing tube
(1) tube for stomach suction
(2) hand/foot IV's
(1) umbilical IV
(1) urinary catheter

*I don't think I mentioned that they switched out his ECMO circuit AGAIN yesterday. Fourth time's the charm?....*

Anyways, back to today. Right after the procedure, they did a chest xray to check the placement of the chest tube. The doctor was pleased to be able to report that not only was the chest tube in great position, the right lung showed a few tiny "air streaks". This means it's finally getting a little bit of air in! Hopefully it continues to inflate well and the chest xrays and echos will look good, and the PPHN will go down!
We're on a momentary roller coaster up, and we're all praying for the best. Remember, things can change by the hour. In the next 2-3 days we should know whether or not his lungs will be able to recover from their stunted development.

Carrie's Special Day!

HAPPY BIRTHDAY CARRIE!

Two years ago today we welcomed our beautiful little girl into our family! Here's a little picture history:

One day old, ready to go home from the hospital. Soooo tiny!

Six months old. Chubby and Smiley!

12 months old. Exploring , learning, playing and running everywhere!

18 months old. Pig-tailed cutie-pie who is learning to use her imagination!

We're having her birthday party tonight, pictures to follow! I can't believe our baby girl is TWO!!

He Must Like Baseball

I say that Brigham must love baseball because today he's thrown us another curveball. This morning right after sacrament meeting, the Dr. called to let us know that Brigham has developed a pleural effusion. This means he has a build-up of fluid in the very thin little sack surrounding his right lung. This is putting pressure on his lung and on his heart.

So they will be doing another procedure/operation. They will have to insert a needle into that space to drain out the fluid and relieve the pressure. It's pretty tricky because all the organs are so close togeter in there that they have to be very careful not to knick something that they're not supposed to. They will have a radiologist doing the procedure and a cardiologist in the room for safe measure. I'll update later tonight. Brigham is sure loving keeping us on our toes!

Since I won't be posting any new pictues of Brigham for at least a few more days (sorry, too scary), I thought you'd enjoy a few pictures of things in his room. Mhylee, one of his nurses got into an organizing/decorating mood the other day and re-did his white board. Our Brother-in-law Brandon (aka, Uncle Boo-Boo) nicknamed him Big-Rig, and all the nurses have adopted it. Hence, the "big-rig" truck on his whiteboard. Mhylee then asked Justin if Carrie had any nicknames. The writing is a little too small to see in this picture, but the little yellow car behind the big-rig says "Bear" on it :)


She also organized a couple of pictures and all his stuffed animal friendsThank you, thank you, thank you again to everyone who loves and supports us! We can feel the prayers, keep 'em coming!

**AND HAPPY BIRTHDAY TO OUR SWEET LITTLE CARRIE! BIRTHDAY POST LATER TONIGHT!!!**

"But if Not"

Day one post-op. There wasn't really anything exciting happening during the night. They tweaked his ventilator a little to see if they could get his lungs to inflate better. The way they "test" this is by loking at a chest xray.

This morning Brigham's xray didn't look "fabulous" so they decided to make the switch from the conventional ventilator back to the oscilating ventilator. I have no idea how to read the settings on the oscilating vent, so I wouldn't know how to say what they are. Anyways, they'll keep repeating xrays once or twice a day to check his progress. Hopefully the lungs can inflate, get some oxygen and nitric oxide inside and get the PPHN down soon.

He's on some nice happy sleepy medicine so he's comfortable and calm. Even though we hate to leave him at night, we're getting some sleep too and it's much needed. Yesterday was an emotionally exhausting day. We appreciate the "phone silence" yesterday. Sorry it sounded so harsh, we just got to the point last night where it was too much to keep answering questions and repeating the same info to several different (well-meaning, caring, loving) people. We're much more stable today, so official "phone silence" time is over :)

We're praying for a miracle because we know it's possible, "but if not"*, we will still have faith and trust in Heavenly Father and we know Brigham will be ok and our family will be ok because we've been sealed for eternity. *(See Daniel 3:15-18, for the story of Shadrach, Meshach, & Abednego)*

Surgery is Done

The surgery went as well as could be expected, according to the doctors. Brigham tolerated it very well and even just as the surgery was over, they said he opened his eyes and looked right at the surgeon. We decided he was just telling the surgeon "thank you".

Afterward, the surgeon was filling us in on what went on during surgery. His diaphragm didn't actually have a hole in it, it had only a front section. There was no diaphragm on the back left side. Basically he's missing 1/4 of his diaphragm. They put a patch in to repair the hole, but in the back of his body there was no peice of diaphragm to stitch it to, so for now the patch is sutured to his ribs in the back. The surgeon said this will mean he will need another surgery to kind of re-patch it in a few months.

Speaking of more surgery, today they did something called a silo. Because of all the swelling, when they did the repair and moved his stomach and intestines out of his chest, there wasn't really any room for them in the abdomen where they belong. For now, they are outside of his abdomen in a sterile dressing. When the swelling goes down in a few days, they will do another surgery to put them back in the abdomen.

As you might imagine, even though everything is covered with a dressing, it's pretty scary to look at. Therefore, I won't be posting any pictures, except this one of just his face.

While we were still in his room before the surgery, I was holding Brigham's hand and told him he had to be good for the surgeons and get better. I asked him, "Can you do that?" and he squeezed my finger. I take it as a good sign.

We've always had the impression that he will be ok. Now we're just trying to decide if that means he'll be ok on Earth, or ok in Heaven. We still have faith and are praying like crazy.

At the risk of sounding rude or ungrateful to all of our wonderful friends, we would politely request phone silence for a little while. We know you mean well and we still appreciate all the prayers and well-wishes! We're back to the waiting game now. We'll try to keep things updated.

Turning Point

The echocardiogram this morning did not show any improvement in Brigham's PPHN. About noon, the surgeon and the doctor came to sit with us and discuss his treatment options.

There are a couple of other medications and/or treatments they could try before surgery, but the chances of them making any progress for Brigham are slim, and we wouldn't know any results for a few more days. Also, because they are so intense, the chances for severe health issues later in life would be significantly increased.

At this point, even the chances of the surgery doing anything to help improve the PPHN are very small, but are still there a tiny bit. On rare occasion, "the problem" is worsened enough by the cramped space in the chest that moving the stomach and intestines back into the abdomen gives the lungs room to inflate and heal. Pretty much though, the problem isn't the cramped space, it's the overall lung development.

Sitting and waiting is not a good choice anymore. If it was going to help, being on ECMO should have helped by now.

We were given some time alone with Brigham. After many tears and fervent prayer, we decided to go ahead with the surgery. They're doing it now. He woke up to "play" with us for about half an hour before we had to leave the room. It was great! We will know more about his prognosis by tonight or tomorrow morning. We'll keep everyone as updated as possible. Pray like you've never prayed before!

Wait, Wait, Wait...

That's all we're doing lately, waiting...

As of today, we're waiting to see if Brigham responds well to the ventilator settings being turned up more. He's up to 40 breaths per minute. We're also waiting to hear the results of the echocardiogram he had done this morning.

This test gives the reading for the pulmonary hypertension. If it looks better today, the chances of surgery happening this afternoon or tomorrow are pretty high. Every day he has to stay on ECMO make his overall prognosis worse. He's two weeks old today, and on day 13 of ECMO.

Like I said, we're waiting. We'll let everyone know when we know something new.

Better Today

First of all, Justin's raise finally went into effect! This has been rumored since SEPTEMBER!! It's not quite as high as we would have liked, but a little raise is better than nothing! We count ourselves very lucky (blessed) that Justin has this job. It's not a fun job, he has to get up very early, and he's definitely overqualified, but we have awesome health insurance, which as you might imagine, is a really big deal right now.

Brigham is looking much less puffy today. The hemofilter did a very good job of helping pull off some of the extra fluid. After looking at his echocardiograms, the doctors said his veins and heart looked a little "dry" though. (Which is not as weird as it sounds. I don't know how to explain it). So anyways, today they turned off the hemofilter and are letting Brigham's kidneys do the work of getting the rest of the fluid off.



They also stopped one of his blood pressure medications, which is good because that means Brigham is holding it up on his own. A few minutes after I got to the hospital today, they took his ventilator off "rest" settings. He'd been getting 10 breaths per minute, now he's getting 20. They changed some of the pressure settings too, but I don't know what they mean and therefore I can't explain that part. The point is, they are starting to "reinflate" Brigham's lungs. By doing this, more oxygen and nitric oxide will be able to get into them and they will hopefully start functioning more like they are supposed to.

The pediatric surgeon explained pulmonary hypertension *PPHN* (high blood pressure in the lungs) to us like this: All babies have PPHN in utero because their lungs don't need to really function; they're getting oxygen from mom through the placenta/umbilical cord. When a baby is born and takes its first breath, the oxygen rushing into the lungs triggers the PPHN to relax and allows the lungs to open and function.

So now that his lungs have had 11 days to rest (on ECMO) turning up the ventilator settings a little and allowing more oxygen and nitric oxide in his lungs will hopefully help the PPHN go down.

The "plan" (remember, there is no real planning when it comes to Brigham's situation) is to recheck an echocardiogram on Friday morning and if it looks "good", possibly do surgery Friday afternoon. Everyone cross your fingers and pray, but don't be disappointed if something changes.

And an extra few notes since everyone keeps asking how the rest of us are doing:

Justin is sad he had to go back to work. He got a week and a half off (including the weekends) and going back to the real world is always tough. He's still my rock though and is amazing at doing whatever needs to be done to help our family, even if he doesn't like it.

I am having up days and down days. More often, it's an up day and I really do feel good, my back is feeling MUCH better and I'm handling the emotional roller coaster ok. Occasionally, I feel extremely overwhelmed and tired even though I'm totally getting sleep. Overall, I'd say I'm doing pretty good :)

Carrie is adorable as always. She's figured out the system though. She knows I "can't" pick her up and will sometimes run away from me (for example, when it's time to get jammies on). She points to the bottles and watches me when I'm pumping and says, "Making milk for Brigham?" (soooo cute!) She's also started to recognize when she sees certain people/friends, it means mommy is leaving and she gets nervous and clingy. Today when I met my friend Libby to drop Carrie off, she didn't want me to go. I told her, "You get to play with Libby while I go visit Brigham at the hospital, ok?". She sniffled and in a high-pitched shaky voice, said, "Ok, visit Brigham..." and the crying was over...

We're holding out. Keep praying. It's working.

One Tube Down, Seven To Go!

This morning they pulled Brigham's chest tube out! The collapsed lung he had immediately after birth has healed enough that the tube has been removed! The other seven tubes are (2) ECMO cannulas, (1) breathing tube, (1) stomach suction tube, and (3) IV's. That's about the only big news so far today.

The hemofilter on his circuit is doing it's job and pulling some of the extra fluid off him, but he's still awfully puffy. Last night we were told they were possibly/likely going to do surgery Wednesday morning, but just this morning, the day shift doctor told me there was "no immediate plan" for surgery. I'm as confused as all of you. I'm going to talk to her again today to try to nail down a better answer. I'm used to "we don't know", but when one doctor gives me a timeline and the next doctor says there is no timeline, I get confused and frustrated.

It's hard to go with the flow when you still kind of have a life... It's especially hard for a 2 year old to go with the flow....

The "Brigham Beard"

The last time Justin shaved was the night before Brigham was born, At first it was because he had forgotten to pack his razor to bring to the hospital and we didn't go home for a week. Now, it has become a tribute to Brigham's stay in the NICU. The "Brigham beard" will be shaved the day he comes home from the hospital. I usually hate facial hair, but the idea was so cute, especially because of the alliteration, I had to "approve".

A view of Brigham's room... Lots and lots of equipment for such a tiny little guy.

The newest picture of our little man. The swelling has gone back up since yesterday :(

Today we got a repeat of last week's switcharoo episode. All the labs were starting to act up again, so they did more blood cultures, started another round of antibiotics and switched out the circuit again. This time they also added an extra component to the machine.

I don't know how well I've explained it before, but the ECMO is basically heart & lung bypass. There is a component in the machine that acts as the heart and one that acts as the lungs. Today the extra thing they added is called a hemofilter. In plain english, this acts as a kidney. Brigham's kidneys are functioning just fine, but this added part will hopefully help get the extra fluid (swelling) out of his system.

Surgery date is still up in the air, but the chances are going up of it happening while he's still on ECMO, rather than trying to wean him off first.

Justin's parents were able to visit this weekend and we were glad to have them come. Life at home is getting back to "normal", but it's hard on all of us. Justin and I are tired; my back still aches a little (I'm all out of vicodin), and Justin has to go back to work tomorrow. I think Carrie is "done" with all the excitement too. I can imagine her thinking "It was fun for a few days, but now can it be over please?"

I feel the worst when she wants me to hold her. For fear of throwing my back out of whack again, I'm not letting myself pick her up again for a little while (at least the next few days). I tell her I can hold her hand while we walk, or I can hold her on the couch, but I can't carry her. It's awful...

We'll figure out a system and get through it all though. Thanks again to all the friends and family who are helping us out so much!

Sieze the Day!

Or, in Brigham's case,"Sieze......ure"

We just got off the phone with one of Brigham's doctors who had called to let us know that the nurse had been seeing some tremors tonight that suggested small siezure activity. We'd seen a few slight tremors in the past few days, but it was usually only one arm, or one foot and there weren't any changes in his vital signs. We brought it up to the doctors and they agreed to keep an eye out.

The nurse said tonight the tiny tremors she saw had involved all four extremities and there was a slight rise in his blood pressure and heart rate.

NO FREAKING OUT!!

The head ultrasound today showed a little fluid build-up around the outside of his brain, which could likely be a contributing factor in his siezure activity. As he continues to "unpuff", this fluid should go down and hopefully the tremors will stop. There is always a possibility that it is related to something else though.

For now, they've started him on a medication called Phenobarb which controls siezure activity and as a side effect bonus, also serves as a sedative. This will help keep him nice and calm and comfortable!

We knew it was going to be a roller coaster! It's becoming even easier to trust in his doctors and nurses though, as we get to know them better, and they get to know Brigham better. As always, we trust in our Heavenly Father and are extremely appreciative of all our friends and family who continue to pray for all of us.

Boring is Good

I feel like I haven't been updating very well the last couple of days, but it's because there's not much to update...

Things are very slowly progressing toward getting better. They're turning down the ECMO settings and letting Brigham try to do a little bit more of the work on his own. How he responds, will determine when they can do surgery and if it will be on or off of ECMO (hopefully soon).

He's started to be more alert more often. It's fun to have him squeeze our fingers or wiggle his feet around. The best though, is when he opens his eyes. I know last time I said he had been opening his eyes a little, but last night and today, he was opening them way more often, wider and for longer! I love it!

The swelling is going down slowly and he's looking even more and more adorable! The nurses have said he looks like a little surfer dude with his spiky highlighted hair and slightly jaundiced skin that looks like a tan. :)

And a side note on me: I'm feeling much better with vicodin, ibuprofen, heat, and rest. It is very sad though to see all my breastmilk getting poured down the drain (vicodin's not such a great thing for babies).... I'm not enjoying being away from Brigham all night, but it's been nice to be sleeping at home again.

Then & Now

This was me yesterday...

And this is me today...

We ended up going home about 6:30 last night to try to "take a break". I took a super hot bath, took my vicodin and a unisom and slept fantastically! I had a heating pad on for a little while and the combo of everything made me feel so much bettter!

Justin doing basically what we do all day... Sitting on the couch either reading a book or playing a game on the computer. Boring is better than too exciting though!
We brought a new blanket from home to put over his isolette instead of the generic cover. We also brought his "little monkey" B.

Yesterday Brigham started to open his eyes for more than just a flicker. We happened to have some friends visiting and got some cute candids. Can you tell how excited we are to see him with his eyes open?

You can barely tell, but he does have his eyes open in this picture. And even when his hair is all gooped down from the ultrasound, you can still see his little highlights. :)

According to his latest chest ultrasound, the blood pressure in his lungs is still slowly, but steadily going down.

The best way to describe what the doctors are saying lately is: They are starting to think about the possibility of maybe talking about when they might be able to start to talk about setting up a possible schedule for surgery.... Confusing, I know. "Wait and see" is the name of the game!

Curveball for Mommy

I think my postpartum adrenaline rush has finally run out.

Yesterday during the day I had a little backache, but nothing too bad. By the evening, it was pretty achy and I was wishing for a massage. By about 10pm, I was crying...

I couldn't even walk. I felt awful. I decided to take some ibuprofen and tylenol and see if I could get a little sleep. Technically I slept, but it wasn't restful at all. It was painful. When I was up to pump at 3:30am, I was seriously considering either Urgent Care or the ER.

Again, I tried to see if I could get a tiny more sleep, mostly because I knew Justin is tired too and I didn't want to wake him up in the middle of the night. I also had a small hope it would just go away.

By 6, I decided to just get up. I took more ibuprofen and tylenol and they didn't even touch the pain. We looked up some local Urgent Cares (to try to save money on a copay) and most didn't open til 8 or 9. Randomly, around 8, I actually started to feel a little better. It was short-lived.

At nine, we headed over a couple blocks to an Urgent Care. After 30 minutes in the waiting room they triaged me, decided it sounded like a kidney infection and I probably needed a CT scan. They fortunately didn't "admit" me to the Urgent Care to save us a copay, and sent me to the ER.

I got in immediately at the ER and they started an IV, and took blood and urine samples. They also gave me some vicodin which started to help with the pain. After a little bit, they said all my labs came back normal and therefore they didn't think it was my kidneys, just muscle pain. I got a prescription for vicodin and they discharged me.

It helped for a little while, but it's already worn off and I can't have another dose for two more hours... I feel like a whiny little baby, but I told Justin and all the nurses/doctors in the ER that this hurts way more than labor did. Hard to believe, but it's true.

Some good news, Brigham is looking great since they changed out his ECMO machine! We don't have the results back from his heart and head ultrsounds today, but all his labs so far have been fantastic. Here's hoping and praying for more good progress :)

Happy Meal and Switcharoo

Today we got to spend a little time with Carrie again. My parents came and hung out with Brigham while we took Carrie out for lunch at McDonalds right down the street. They didn't have a playplace, so once we were done eating, there wasn't really much left to do but go back, but we enjoyed the half hour we got to be together. It's always hard to say goodbye to her... We're looking forward to the day when all four of us get to be home together.

A little update on Brigham. First of all, they did another triple-check head ultrasound today and confirmed that he does NOT have a brain bleed! This is such good news. :)

He has, however, started to require more blood products to be transfused over the last day and a half. This is normal for kids who are on ECMO. Think of it like this. Normally, his body would only have to produce enough clotting factors etc. for his own tiny little body. On ECMO, he has to try to keep up production for at least 3 times the normal amount of blood...

They've been having to give platelets and some other clotting factor products lately. This is increasing the fluid volume that's circulating and helping keep his blood pressure a little higher (which is good). The not so good part is increased overall fluid volume means increased swelling. They've restarted occasional doses of Lasix, which should help him "pee off" some of the extra fluid.

We've lovingly toyed with the new nickname "puff baby", you know, like puff daddy, but he's a baby... Anyways...


Onto the "switcharoo" part of the post. Some of the labwork they've done recently has shown that his blood was too thin (for lack of better words). A couple things that could mean are that Brigham has an infection, or the machine "has a bleeding problem" (again, for lack of better words). They started him on antibiotics just in case, while they're waiting for the cultures to come back. In the mean-time, this afternoon, they switched out his ECMO machine for a new one. They said sometimes after a few days, the machine just needs to be reset up.

For now we're just waiting to see if his coagulation numbers get better. If they do, he won't need as many blood product transfusions and hopefully the swelling will go down.

We also got a little more insight into what they're waiting for and looking for to decide surgery date/time. As they've been doing heart and chest ultrasounds, they're monitoring the blood pressure in his lungs. Once that goes down (as his lungs are able to rest while he's on ECMO), they'll be able to do the surgery. So now it's the waiting game :)

No Such Thing as Planning

I've had a lot of people ask me lately what "the plan" is. When are they thinking he'll go off ECMO? When will he have his surgery? How long until he starts to eat normally?....

In the NICU in general, but even more specifically in Brigham's case, there is no such thing as planning. We plan things out maybe an hour at a time. Things can change on a dime and therefore there's no way to predict what he'll be doing tomorrow, or the next day, or the next.

I know I said earlier that we're guessing he'll have his surgery by the end of this week. That guesstimate is based on the assumption that he'll keep acting exactly the same as he is at this moment. He may get better quicker, he may get sicker in the next couple of days. We just don't know...

Another thing I probably need to re-address. The surgery doesn't fix "the problem". His stomach and intestines being in the wrong place is obviously a problem, but just putting them back in his abdomen doesn't make his lungs magically function.

Because his lungs were cramped for space in utero, they didn't develop properly. This is the big problem. This is the reason he'll be in the hospital for so long.

One of the doctors who's been with Brigham a lot this weekend keeps saying she doesn't care about the size of his lungs. Function is what's most important. If he has "big" lungs that don't work well, it doesn't matter that they're big. If he has "small" lungs that work well, it doesn't matter that they're small.

We had a tiny scare this morning concerning the ECMO machine. The doctor told us that yesterday on his head ultrasound they thought they might have seen the beginnings of a brain bleed. This would mean that ECMO was getting riskier. If he were to develop a full-on bleed, they'd have to take him off ECMO; no good.

We got good news today though... The follow-up head ultrasound today showed NO brain bleed! Yeah!! That means he gets to stay on ECMO a little longer and let his lungs keep resting. (Which he really needs because the blood pressure in his lungs is still really high).

He's holding pretty stable right now and we're just taking things by the hour and by the day. Thanks to everyone for the prayers and messages of encouragement! And also thanks to all our visitors who keep bringing us goodies! :)

Fluids Galore!

Brigham is still pretty swollen, just retaining water. It's still mostly in his face,upper body and arms. His legs are still nice and skinny. I, however, am apparently having some sympathy swelling. My ankles currently do not exist... It's awful! (And if you wanted to see a picture, yeah right... It's gross, I'm not taking a picture.) I'm so glad I don't get swollen like this while I'm pregnant because it's no fun at all. They're a little achy, but mostly, they just look horrible! I'm trying to remember to drink a lot of water and keep my feet up, but I'm not very good at it.

Speaking of fluids galore, my milk has come in and it's just plain ridiculous! Last night I filled 4 of the little bottles in one sitting. 8 ounces in 15 minutes?! The little freezer in Brigham's room is already almost full and soon they're going to start putting my milk in the "donor" freezer (with his name on it still) as overflow! The nurses last night were teasing that it's always the moms who's kids can't eat that get the most milk.

Brigham won't be starting any colostrum/milk feedings until at least next week, if that. Because his stomach and intestines aren't in the right place, using them is not really a good option. Right now he's getting all his nutrition through the IVs.

His GI system does work, however. We know this for sure because early this morning, I got to change his first dirty diaper. There was only a teeny bit, but we know his "pipes" are functional. I love motherhood... That dirty diaper was the greatest thing ever!

He was very awake around 4 this morning. (At least considering the number of sedatives he's on). He was wiggling, making tiny fists,and kicking his feet a little.

He was even having fun playing with a toy. The little stuffed dog "Lucky" was getting kicked around quite a bit!

Time with Carrie

Last night we left Brigham in the care of all the capable medical staff (and my mom,who came to visit and hang out). It was weird! We'd been inside the hospital right by Brigham for 3 and a half days. We really missed Carrie though, so we went to visit for a few hours at my parents' house.

My mom says she talks about us all the time when we're not there, but she didn't necessarily seem to care when we showed up. We decided it's a good thing though. She was happy to have us there, but it wasn't a super big deal either. We're glad she's feeling comfortable and happy while we're away.

Carrie wanted to play the playstation with Justin

We played a little hide-n-seek

Peekaboo!

Blurry picture of Carrie and mommy

Getting hugs from daddy. She was so wiggly because she wanted to see the pictures on the back of the camera instead of pose for them!

We really enjoyed being able to spend some time with our little girl. It's hard to be split between our two kids, but we know they're both in good hands when we're not there.

This is the Way We Wash Our Hair

They've been doing daily ultrasounds of Brigham's brain to monitor for any signs of internal bleeding. While he's on the ECMO machine, his blood is heparinized (they add a blood thinner to it) to help avoid any clots developing in the machinery. This increases his chances for getting a brain bleed. Because he's full-term, his chances are lower than they would be if he were a premie, but it's better to be safe than sorry.

The point of that story is to point out that every time they do the ultrasound they have to put gooey gel on his head (in his hair). His poor beautiful hair gets gooped down... :( So because I'm apparently super prideful about appearances, I've been giving Brigham daily hair-washings.

Warm water and a washcloth to get rid of the gooey gel

A little combing to get the spikes going

And voila! Cute golden spikey hair-do!

You'll also notice that he looks a lot "chubbier" than the pictures from a few days ago... He's gotten pretty swollen in his face, upper body and hands. His urine output has been down a little the past couple days and he's just retaining a lot of fluids. Poor kid is pretty puffy, but it should go down soon.

Before I was combing his hair I was holding his hand for a minute and he was actually responding a little to my touch. He started to wiggle his fingers and squeeze mine for a second. It was great!

Goodnight Kisses