Friday, July 30, 2010

... and again.

I'd say we can't seem to catch a break... but in reality, I know we've caught plenty. We're lucky to have Max here at all. We're lucky to have two other happy, healthy children. Troy and I are lucky to have one another.

Even since Max was born, we were lucky that he was bigger than he should have been, that his skin was stronger and thicker, that his brain bleed was minimal and resolved itself, that his vision is not a problem, that he can hear, that so far all of his problems even the life threatening ones, have been treatable, We've never had to face something that they just can't fix.

We are lucky. But some days I just feel like Max has a giant rain cloud over that crib of his! I want so much to get him home to a normal life in his bedroom in our living room with our family, surrounded every minute of everyday by the people who love him most. I knew better than to get my hopes up. But when the doctor told us it could happen in a week or two, I was finally excited. I should have known that other shoe was waiting to drop.

So yesterday, when the doctor told me she had noticed the hydrocele (fluid in his scrotum) on both sides, I was concerned. When she said she was worried that those hydroceles were hiding hernias, I was worried today. Today, when they did the ultrasound and found the 2 inguinal hernias, well let's just say I had a RANGE of emotions.

ANGER: How could this happen? He's had 3 bowel surgeries, a circumcision, and NEVER an ultrasound, how could this be missed until now? (turns out these don't usually present themselves until the testicles drop into the scrotum around the last 2 weeks of pregnancy and guess where we are?)

FEAR: What would another surgery mean to Max? He'll go back on the ventilator, stop eating, have more incisions which risk infection, his airway could be endangered because of the already traumatic intubation (sp?) he had for his most recent surgery. Plus, we just found this, what else could be in that little body, lurking and we don't know about it??

SADNESS: Poor little Max, how much can his body stand? Hernias hurt, is he in pain? He HATED being without food and back on the vent for his last surgery. How can we put him through that again?

FRUSTRATION: What the heck is going on! How in the world are we supposed to survive this? Seriously, Troy and I NEVER have time for one another, the kids have basically been abandoned for the summer, Ella is starting kindergarten and 2 and a half weeks and Alex starts preschool in a month. I've missed our last summer before they both go off to school like big kids and I'll never get this time back. How hard is it for them, will they forgive us for having to sacrifice this time with them to be there to help Max while he's so fragile?

WORRY and DOUBT: Will we EVER get to bring him home. Really? It's been 105 days, and every time he makes it over one hurdle, another one hops right out in front of us. Will he ever be a normal child? Will we every hold him, play with him toss him in the air, like his brother and sister? When can we stop worrying, and just enjoy him?

My wish was to get him home, before school starts for Ella in August. Even if it's just for a couple of days. I REALLY wanted just a day or two, for our family to feel normal to do normal things. To eat together, play together, snuggle and sleep together in the same house. For all of us, I wanted it, even for just a little bit, to feel like we thought it would, when we found out we were having a baby. Today, I felt like that might be impossible.

I want to run and hide and just bury my head under a pillow for a few days or weeks and just cry until I'm over it. But you can't do that with a preemie, and family and a husband. They need me, Max needs me and I need them. We'll get through it, just like we always do, together. But today, it's hard.

Due Date

I was supposed to have a baby today. July 30, today, is my actual due date. It's hard to believe Max should just be arriving. He's been with us now, since they drained the pool in his Mommy Motel 105 days ago.

Since then, we've watched him grow and develop on the outside.

We hope to bring him home soon.... just as we planned... all those months ago... before our lives were turned upside down.

(no poop yet, but things are moving down there)

Thursday, July 29, 2010

Again, praying for poop

Mr. Max is backed up tonight, so we're praying for poop again. They feed him every 3 hours, and before he gets his bottle, they check his stomach to see how much milk is still in there from the last feeding. Tonight at 4:30, he still had 12 of the 15 mls in his tummy. It was partially digested, but not passing through.

The good news is, it was milky clear and not a green color, which would indicate something wrong with his bowels.

The milky color means he is backed up. So they tried to "stimulate" him to poop. A couple of times. But so far, no action down there.

We need poop!! So start praying people! If it doesn't happen soon, they may stop feeding him for awhile and give his body a chance to process things through. He surely won't be happy about that!

In the meantime, he'll have an ultrasound tomorrow to check his scrotum for hernias. We're hoping they find nothing, because a hernia means another surgery.

(look how cute he was under all those covers today, trying to keep his binky in!)

Got milk!

Max is back drinking milk and he loves it!

He gets very small amounts, only half an ounce at every feeding, but he enjoys the milk MUCH more than Pedialyte. (which is what they were giving yesterday) Hopefully it will stick with him a little longer, so he's less cranky!

He does have a new problem that presented today. He has a hydrocele, which is fluid in the spot where guys don't like any surgeon probing. They'll check to make sure he doesn't have hernias as well. We should know more in a few days. It's not critical, but could require another surgery.

Just another bump in the road. But we're getting there...

Monday, July 26, 2010

Still in the tunnel..

But we're starting to see the light at the end. Max is completely off oxygen today and he'll likely start to eat this Wednesday. The doctor told us they'll begin with Pedialyte again, but not nearly as slow as in the past. They'll plan to give him everything from a bottle, only using a feeding tube if he has trouble.

She told us to think about the next 1 and a half to 2 weeks in the NICU and then him going home. WOW! That's the light that we've been looking for, working toward, at the end of this long, long tunnel.

We're so close, we just have to keep pushing a little bit longer.

Sunday, July 25, 2010

100 Days of Max

It's hard to believe that Max shouldn't even be here yet. I was reminded today, by a silly little email that I get every week, that Max should still be inside me. I've kept receiving them each week, even after my early delivery, because I wanted to. It serves as a reminder to me, that everything happening to Max, should be happening inside my body, instead, he's doing it all on the outside, the hard way.

It's been amazing for Troy and I to read each week, and to compare it to what's actually happening with our baby. Here's what it said for this week. Week 39:

Your baby's waiting to greet the world! He continues to build a layer of fat to help control his body temperature after birth, but it's likely he already measures about 20 inches and weighs a bit over 7 pounds, a mini watermelon. (Boys tend to be slightly heavier than girls.) The outer layers of his skin are sloughing off as new skin forms underneath.

In reality, our Max is 8 lbs. He's more than 21 inches long, and his skin is pink and soft and squishy and wonderful now.

Today, we're celebrating 100 days of Max. It's hard to remember life before these 100 days in the NICU and sometimes, it's hard to imagine what life will be like after he leaves and comes home. But when I think that I wasn't due until this coming Friday, July 30, I realize what a miracle it is that we have Max with us. And how grateful I am for every moment of every one of these 100 days that I've been able to spend with him.

POOOOOOOP!!!!

Post surgery, one continuous bowel, Max made poop this morning, twice in fact. He's been crying and bitter for the last 24 hours, because he's hungry. Now hopefully they'll start to feed him a little something and make him happier.

He's also down to .2 liters on his oxygen, which means he could finish with oxygen completely today.

Great morning!

Saturday, July 24, 2010

Waiting for poop... not patiently

Max is HUNGRY tonight, and he's letting everyone know it. He is normally an easy going, content baby, unless he's in pain. He has not needed pain medicine since 4a.m. but he's crabby and that's unusual for him.

His night nurse Ester, is able to console him, because she is wonderful and will hold him. She put a binky in his mouth, but I'm wondering how long that will cut it. Every day, he gets stronger, more hungry and more bitter. He can't eat until he poops, so we're waiting for him to do the deed.

Friday, July 23, 2010

Friday

Max is doing much better today. The steroid treatments seem to have helped the strydor and he sounds less like he's being "water boarded."

He smiled today. It was the first time since his surgery that he seemed happy and not uncomfortable.

They've actually stopped his pain medication drip and instead, he gets pain medication regularly, every 6 hours. That seems to be working just fine for him so far.

He still has the tube down his throat and into his stomach, to help keep gas from building up in his belly. He's "tooting" an stinky... so we wait for the poop and hope he'll get to try liquid again, by mouth sometime next week.

Thursday, July 22, 2010

Stridor

Max is off the ventilator tonight, since around 5 o'clock. He's had a little trouble with his airway being irritated and swollen, making it harder for him to breathe. Something called "stridor?" They are treating him with steroids and it seems to be helping. Best of all, we had almost 3 hours of snuggle time. It was great for both of us. Hoping he will have a peaceful night.

Wednesday, July 21, 2010

Post Surgery Blues

Today sucked! The day after surgery is even worse for me than the surgery itself.

Max was out of it all day, and when he wasn't he was in pain. He gained 9 ounces or 239 grams! He's puffy and his eyes are swollen shut. He had a blood transfusion. (I think it was #11) He is still on the ventilator and his narcotic pain medication drip. I can't hold him yet, oh and most recently, the NICU doctor on call tonight is a jerk!

He was condescending, patronizing, and dismissive. Seriously, he must not realize that I've dealt with egos MUCH LARGER THAN HIS during those 14 years in TV news. I asked to have him call to answer my questions about Max's condition tonight and he told me I was "getting all bent out of shape" and "worrying about things that shouldn't concern me,." That was before I even got to say anything except "hello" and "thanks for calling!" Really, when did he become the one who gets to tell me how to parent? He doesn't scare me, he just pisses me off!

It's really not a good idea to push this Mommy's buttons when she's already on system overload! I don't have the time, energy or patience for this crap.

Tuesday, July 20, 2010

Rest and Recovery


Max did very well. His surgery went as expected. Only a small piece of bowel was removed and then put back together. He didn't lose much blood at all, but they may give him a transfusion overnight if he needs it.

He will stay on the ventilator, at least overnight. Mainly so they can keep him knocked out with the pain meds, to keep him comfortable.

They are closely monitoring his blood pressure and fluid out put. So far he's doing great. He was just starting to come out of the anesthesia when we left the hospital an hour ago. They are knocking him back out with a narcotic drip so he should sleep well tonight.

(**My favorite picture from today, this is when then gave him the first sedatives to help him relax him before putting the tube down his throat. Gotta love those drugs!)

For now, Troy and I are getting some sleep. The kids are sleeping at Laura's in case we need to go back overnight. I'll see him first thing in the morning and update then unless something changes overnight.

Thanks for all the thoughts and prayers! Thanks to Laura for keeping the kids, Pete for taking care of the dogs, and Michele for cleaning our house, folding laundry and leaving us a dinner for when we got home! You are all wonderful!!!!

The fight before surgery

Max is down in surgery now. He just left us at 3 p.m. It took longer than expected to load him into the transport, because he was awake, mad and fighting to get the vent tube out of his throat!

They gave him a 3rd dose of BOTH sedatives and finally calmed him down. It was hard to watch and to hold his face and hands and try to stop the struggling... but he's a baby and babies cry, so it was somewhat normal, and made it less fearful for me, sending him away.

I guess he was just showing us what a little fighter he really is... we should know that by now.

Back on the Vent

Max is back on the ventilator now. It took double doses of Fentanyl and Versed to sedate him. That boy is a little fighter. The doctor said he tried to suck her finger (because he's starving!) when she went to put the tube down his throat.

They have just moved up his surgery time to 2:15. Looks like things are running ahead of schedule.

Saturday, July 17, 2010

Ella's "Date Night"

My parents were in town this weekend to get some Max time before surgery. Ella and Papa were going on a "date" tonight. Of course, all of us were invited.





We went to dinner and Ella whispered to her Papa: "Let's excuse ourselves to the bathroom and then come back and get our own table with no parents, because that's what you do on a date."



Okay, seriously, where does she hear this stuff? She's 4!? I know she's been farmed out to lots of friends lately while Max is in the hospital, but these are reputable people. It must be from a movie or Hannah Montana or something.






Regardless, it was priceless and she and her Papa had a great date night. So did Mommy, Daddy, Gramma and Alex!

Saturday snuggles

Troy and I spent this morning with Max. I fed him him 9am bottle and we snuggled and burped for more than 2 hours. That boy is seriously gassy!

He had to go back on his nasal oxygen for a couple of hours overnight, but it was a short situation. I honestly think it had to do with the burping as well. If he doesn't get those bubble out, he just can't get big enough breaths.

Today, he was a good eater, finished his 3 am bottle and almost all of his 9am and and 3pm bottles as well. Esther (the night nurse) is feeding his 9pm bottle now, so we'll see how that goes.

As of last night he was up to 7 lbs 5 ozs. He's growing so fast and doing so well, it seems a shame to take a few steps back for surgery this week, but it will help him in the long-run to get home and be DONE with his hospital experience, we hope.

He will have a barium enema again Monday. Still not sure what time on that. Surgery is Tuesday afternoon at 3. Troy and I will be with him for the day. They'll sedate him around noon and put him back on the ventilator. It should be several hours after surgery before he regains consciousness and is strong enough after the paralyzing anesthesia to come back off the vent and breathe on his own. Hopefully, it will be a short stay on that front.

We'll keep you updated on how things are going. Thanks to everyone for the thoughts and prayers!

Thursday, July 15, 2010

No Oxygen!

Max has been off all oxygen support since 2:30 this afternoon. He's had a bottle and spent most of the the rest of his time snoozing and satting perfectly! They're just trying him out before surgery next week, to see what he's capable of before he goes back on the vent. They were sneaky, the doctor left he straws under his nose. So he THINKS he's still on oxygen, but we know better.


Wednesday, July 14, 2010

Wednesday morning

I came up early today so I could be here at 9 and give Max his first of 2 bottles for the day. He drank the whole bottle! 54 mls! That's a first! They are now upping his feeds to 57 mls.

He also started physical therapy today. They're checking his muscle strength and tone. They will also give me some exercises to do at the bedside with him.

Have not heard from the surgeon yet today, but do expect to get an exact time for the bowel repair surgery next Tuesday.

Tuesday, July 13, 2010

Surgery and talk of coming home

Max's doctor said this morning that she's looking at surgery for next week. This will be the surgery to back in and make the final repairs on his bowel. His ostomy should be gone after this.

The surgeon will come in this afternoon and they'll discuss how he's progressed on his feeds, respiratory, etc... so we should know more then.

For this surgery, Max will go back on the ventilator, stop eating for several days, etc... so it's a big step backward, but one that we know was coming. They'll wean him back off the ventilator and slowly start back up on his feeds.

It's not as "invasive" a surgery as the last bowel surgery. This time around they do not expect to take ALL of his bowels out and check for holes and leaks, etc.. The surgeon will just repair the ostomy piece that's outside, basically, sewing two ends back together, and then put everything back inside.

He does have to go under general anesthesia, which is always a big risk for babies this small, but we've had that twice already with the heart surgery and first bowel surgery, so it seems less scary this time with him being bigger and stronger. The anesthesia paralyzes him, which is why he'll need to go back on the ventilator. Hopefully, it will only be for a short time, and he'll come quickly back off the vent to less oxygen support.

He may very likely swell up REALLY large again like he did last time around. That time he gained 2 pounds plus in just water weight. Once his organs kick back in after the shock of surgery and start working, that fluid comes off and he'll start to look and act normal again. Then they'll start with small, gradual feeding through his tube.

Eventually, he'll work back up to a bottle, and once he can eat EVERYTHING for all 8 feeds per day from a bottle, and have no "spells" where he drops his heart rate of oxygen for at least 2 weeks, THEN he'll be ready to go home.

We're hoping for sometime in August. But we're prepared for October. (That would be 6 months, which was the far side of what babies his age would spend in the NICU. It's also the longest they could keep him at this hospital, before transferring him somewhere else ((Children's Mercy)) for the developmental care he'd also need at that point.

So, we wait for the exact date from his surgeon. We probably won't know that today, but should know by the end of the week. Troy will take the day off and we'll both be here at the hospital with him until he's stable.

Today, he drank 35 mls from a bottle! That's the most yet! They decided to let him try taking a bottle twice a day now. So we'll see if he has enough energy for that this afternoon or this evening.

Troy is coming up after work, so we'll likely try the bottle at 6pm while Daddy is here. Then we are off to take our infant CPR class, just one of the requirements before he can go home. Next week we have our "Homeward Bound" class from the hospital, which includes how to use the monitors, oxygen, etc... Lots to learn just to take him with us eventually!

Luckily, our favorite babysitter, who is also a nurse, "Miss Sarah" is teaching the class we enrolled in tonight. Hopefully she'll give us extra lessons if we need them!

Monday, July 12, 2010

Pumping him up

Max is getting blood transfusion #10 today and could get another before the end of the week. His hematocrit dropped from 31 to 25 and he needs that good oxygenation before surgery. It looks like they're trying to bump him up for that. Makes me think they may want to do this surgery as early as next week.

He was also started on medication today to help lower his direct bilirubin. This is a liver function issue that results from him having been on IV nutrition for so long. One of the side effects, but oh so worth the fact that the baby Gatorade kept him alive for all those weeks until he could tolerate food in his belly.

He's doing well, but dropping his oxygen and heart rate quite a bit today... likely because his red blood cell count is so low and he just doesn't have the oxygen reserves.

He does have to get another IV for the blood. His broviac, long term IV can't be used for blood, unless it's an emergency. So Mommy is taking a break, while they stick him and in the next hour or so they'll start the transfusion.

Sunday, July 11, 2010

Big Sister's big moment


We had some girl time at the hospital today, just Ella and Mommy with Mr. Max.



Ella had not seen Max for two weeks, because she and Alex were both sick with a bug last weekend. Two weeks ago, when she planned to hold him for the first time, he had an infection in his incision, and just
wasn't up to it.







But today, he was well, she was well, and the stars finally aligned! You can't imagine what joy until you see her little face... and his. He listened to her every word, held her finger and fell asleep with his big sister. I couldn't have been more proud of the two of them.












Daddy and Alex came back after their Costco run for a little family time. This is the second picture of our family of 5. The first with Max out of his isolette, so you can see all of us together.

Friday, July 9, 2010

The Mommy Mafia

That's how Troy and I refer to my WONDERFUL group of Mommy friends! Some are stay-at-home, some work full time, some have done both. Some are former co-workers, some are neighbors, some of us met through our kids, others are my lifelong friends. Regardless of who they are, or where we met, these are the women who keep me afloat on a daily basis.

I've always known how vital, supportive and "connected" they were... That's why I call them the "mafia," because somebody knows everybody you need! They can hook you up with a roofer, a plumber, a painter, an upholsterer. They know where to find leopard print hair bows, dinosaur toothbrushes, and they can help you identify any medical problem that your toddler can bring home.

I had no idea, until we wound up with Max, 15 weeks early, and started shuttling back and forth to the NICU, how irreplaceable these Mommies would be.

This week alone, they've taken in my children, taken them to Deanna Rose, the movie, the dentist, worked to potty train Alex, cleaned my house, washed and folded our laundry, cooked dinner, set the table with flowers, made our beds, fed our dogs, taken fabric and a chair to an upholsterer, brought hand-me downs for Max, brought chai for Mommy, pumped milk for Max and the list goes on and on, and on....

I saw this amazing list on a Facebook page called Mamapedia, and I couldn't resist a re-post. I can identify every mommy on this list in my life. I hope someday, I'll be able to return the favor to each of them!

The Eight Friends Every New Mom Needs

My husband and I chose, for some inexplicable reason, to make our home a good six hours from our closest family members. It wasn’t until I had kids that I realized what a poorly thought-out decision that really was. I have been lucky enough, though, over the last five years to gather together a really spectacular mom community that is as close to family as anything can be. I believe there are certain types of mom friends that every new parent needs, and they fall roughly into the following eight groups.

Mom friend superstars include:

1. The “there-in-a-pinch” mom friend who will do an emergency baby suppository run when your little one is glued to the toilet, and your spouse is out of town, no questions asked (and knows enough to recommend suppositories in the first place).

2. The “exactly-your-level-of-crazy” mom friend – one that you can call and confess that you had cereal and wine for dinner, and that your Tupperware drawer is trying to kill you.

3. The “all-baby-all-the-time” mom friend who will engage enthusiastically in any detail of your baby’s development; including his bowel movements/brilliance and agree on their peculiarity/outstandingness, even though she has three equally peculiar and outstanding children of her own.

4. The “baby-doesn’t-break-her-stride” mom friend – in fact the opposite of number three; who will drag you out for margaritas and ban all talk about family members under the age of 21 for the evening.

5. The “laid-back-playdate” mom friend who agrees that baked goods and feet up on the coffee-table constitutes a much better playdate than the local screaming/rioting community-center activity.

6. The “motivated-playdate” mom friend who will drag your lazy-mom self to the science-museum/toddler music appreciation/pre-school roller rink class.

7. The “repository of all information” mom friend, who reads all the latest studies on childhood development (so you don’t have to), knows the best pre-school in your area, the most highly recommended potty-seat, and will teach you tips like using your empty egg cartons to hold poster paint, and how to make live action puppets out of discarded potato peels.

8. The “well-rounded” mom friend who will talk with you endlessly about just how you’re both going to lose those last few pregnancy pounds (even though you’re both much too deep to worry about appearances); and totally gets how constant repeats of Golden Girls and the occasional Jerseylicious episode are essential to your well-being (even though you’re both far too busy and intellectual for television).

You may be lucky enough to combine two or more types into one, all-star, stupendous mom-friend. I am lucky enough to have a 1-2-5-8 mom friend. Precious and rare. You know who you are.

Peryl Manning is a freelance writer and stay-at-home-mom. She juggles her boys, her writing and her volunteer work with varying degrees of success, and is convinced of only one certainty: Parenting is really, really challenging. Her blog, Parenting ad Absurdum, is featured in the Seattle Post Intelligencer.

Sharing the Love

Max and Mommy were both so glad to see our friend Nicole today. She is the wonderful, former NICU mommy, who was gracious enough to donate her breast milk after the loss of her twin daughters.

Troy and I were so touched by Nicole and her husband and their caring and compassionate spirits, that we wanted to get to know them. We also wanted them to know that they will always have a connection to Max.

Nicole was a special first for us today. She was the first person, other than Mommy and Daddy to hold Max. It's something that means so much to me, because after all, part of her, is part of what's helping him survive and thrive, every single day.

I wasn't sure if I'd be able to let friends, grandparents, or anyone hold him and not be nervous or afraid. But when I handed him over to Nicole, I never even thought about it. There wasn't a second of doubt. She's a Mommy, specifically, a NICU Mommy. She has known the same fears that I feel. She has longed to hold a baby that was untouchable. She has loved a child with wires and tubes and a body that just doesn't look like the baby anyone dreams of or expects. She has cradled and kissed and caressed a fragile, tiny, preemie, just like my Max.

Max was precious and adorable! He was bright-eyed and attentive. He stared and smiled. (and burped, unfortunately) He was so comfortable! He must know that Mommy touch? Someday, he'll know all about Lilli and her mommy, Nicole. He'll know how her selflessness helped him so much! He seemed right at home on her shoulder, and it was a wonder to watch. I hope she enjoyed it as much as I loved watching the two of them together.

Bottles, Day 2

Attempt #2 was a great effort for Max! He doubled the amount he drank to 15 mls.

He is having some fluid issues still, but no horribly bad. He looks a little puffy, but believe me, he's looked MUCH worse, and so far there does not seem to be an effect on his lungs. They're just letting it go, because the option would be to give him Lasix, but that drug also leeches calcium from the bones, and with his brittle bone issues, they don't want to make that issue worse. We will just wait for now and see if his body gets things regulated on its own.

Since the beginning of the week, he's gone from 5 lbs 8 ozs to 6 lbs 12 ozs tonight! It's too much weight gain, but some if it is real weight, so our best guess is that he weighs around 6 lbs.

Thursday, July 8, 2010

First bottle feed

Max had his first chance to try drinking from a bottle today. It wasn't as great as I had hoped, mostly because he was very tired after his morning eye exam and 2 suck therapy sessions, but he did okay and actually got down about 7 mls before we stopped.

He remembered to suck, swallow and breathe and kept his stats on the monitors great for the full 30 minutes.

We get to try this once a day for now, so let's hope he keeps smiling!

Tuesday, July 6, 2010

Mommy Rocks the bag


Okay, I'm over the moon proud of myself today and so excited to say that my first real attempt at putting on Max's ostomy bag, by myself, is a success! As of 10pm tonight, the bag, which I put on at 3pm yesterday afternoon, is still stuck!!!


That's more than 24 hours. Which in my book is a huge success. It's like trying to stick something to a moving gator, with craft glue. It ain't easy. But we've done it once, and we'll do it again if needed. I'm hoping he won't have to come home with the ostomy, but if he does, I'll be ready.



It's like my insurance. I'm prepared, and hoping I'll never need it.

"Getting Close"

Max had a great day today! I hate to say that out loud, because I'm always waiting for the other shoe to drop, but it's true.

He had his first full day of sucking therapy. Three sessions at noon, three and six o'clock feeding time. I was there for the noon and three p.m. and he was a rock star! He sucked for 20 minutes taking breaks to swallow and breathe and his oxygen was perfect!!!

This is a big deal, because they'll cut his feed time down to just 30 minutes tomorrow and then, by Friday, they'll start letting him take some milk by mouth.

They did add iron to his diet today. It will help his body with the red blood cell production.

The doctor this morning, told me that we are "getting close" to his final bowel repair surgery and that he expects another good 2 weeks after that surgery before he'll be off the ventilator, back up to full feeds, and ready to go home.

I asked, because I want to book Ella's birthday party BEFORE Max comes home so we don't have to worry about who will care for him. I asked if I would be safe to schedule it in early August and he said, "schedule it in July." WOW! That makes it sound really soon. Granted, still at least a month away, but it's the first time any doctor has been able to get close to a time frame.

They also gave us information on the "discharge class" which we'll take before we "room in" with him for a couple of nights, learn about all the monitors he'll take him, oxygen if needs it, etc... Both Troy and I are taking our infant CPR class next week, so lots of education for Mommy and Daddy this month.

We still have some big steps ahead, he's got to get completely off the nasal oxygen, learn to take his full feeds from a bottle, and get through the surgery and do it all over again. But we're making slow, steady progress, and in my book, that's how we're going to win this race.

Monday, July 5, 2010

Monday holiday

I had some snuggly, sweet Max time today. It had to be a little brief, since Troy was home with the two kids, but still wonderful!

Ella and Alex are both feeling better after a weekend bug. But still, they're not ready to visit baby brother just yet, and we thought it would be good to keep them quarantined for one more day.

Max had his occupational (sucking, swallow, breathe...) therapy at noon. He was sweet and snoozing, so he was useless for this session.

Not many changes today from the doc. They compressed his feedings through the tube to 1 hour. That means 2 hours with nothing going in, until the next feeding begins. After the first stretch, giving his tummy time to be empty, he actually acted hungry for the first time!

His hematocrit is down to 29, but his "re-tick" shows his body is beginning to make it's own red blood cells, so they'll let that go for now. He's not showing any symptoms of it being a problem. They had expected to start him on medicine today for his elevated direct bilirubin. But that number dropped over the weekend, so no new meds today.

Sunday, July 4, 2010

Binky Blues

Max is really getting the hang of this sucking thing, and he likes it. But it's tough being so cute and trying to stay awake...


Friday, July 2, 2010

Suck, swallow, breathe...


Sounds like porn... but this is what Max has started to learn this week.


In the 11 weeks since he was born, Max has had his nutrition through an IV tube, and now through a feeding tube that goes from his nose to his stomach.... he has YET to eat anything by mouth.

That's a challenge for many preemies, making the transition to breast or bottle. Just this week, Max signed on for a clinical research therapy. He's learning how to suck properly. He's always loved to suck, he had his hands in his mouth in ultrasound pictures, and he LOVES that binky! He even sucked on it with the ventilator in his mouth.

This study includes putting a pacifier in his mouth which is attached to a probe. A computer program pumps air into the pacifier in a specific series that teaches him what to do. Basically, on his own, he sucks about 15 times and then is so low on oxygen, his monitors go off, or he sucks, makes saliva build up in his mouth, and then struggles to catch his breath and chokes. His gag reflex is REALLY sensitive. This computer program teaches him to suck 5 times, pause to swallow and breath and then start the pattern again.

It's amazing to watch him and realize all that his body has had to learn outside, which would have been so much simpler in the womb. He's doing a great job so far. Looks like we have an A student already!!