Back on track with "Team Max."

Our primary nursing schedule is back on track, thank GOD! I mean, literally, I can't tell you how thankful I am for this. It's the one thing that keeps me sane.

These last few days, have been especially frustrating. I can't say that we have EVER had a bad nurse. But I still wanted the primary nursing for him. It means we have a pool of nurses, days and nights, who they try to keep with Max. The best thing about the best primary nursing is the consistency. It's great having people know what's happening with him, knowing his quirks and most importantly knowing the delicacy of those DARN OSTOMY BAGS!

The past 3 days, those bags have been the bane of my existence! But finally, after trying EVERYTHING, Betsy, Lori and Charlotte have been able to get bags on that have stayed for 8 hours plus! The longest stretch so far, was a bag that stayed on for 16 hours today. WOOHOO!!! This means more time for Max to not be bothered and stressed. He can just sleep, heal, grow, and love on his mommy, of course.

I love having primary nurses. I can leave Max, knowing that he's with the handful of people of people who care for him on a regular basis. (just look how content he was this morning, when I found him snuggling with Charlotte!!!) They are the people who have come to know and love or at least tolerate his quirks. They have agreed to care for him, and they are all part of "Team Max." We couldn't do it without them.

Lilli's life

I wanted to take a few minutes tonight and write about Lilli. But I just couldn't find the words. What can I say about a little girl so precious, so loved, so fragile and yet so strong for the 10 short weeks of her life.Lilly was a twin who lost her sister, even before they were born. She battled premature lungs, a perforated bowel, and eventually, she succumbed to NEC.

She and Max have so much in common, including the breast milk that her family was generous enough to donate. Here are a few of the wonderful words, which her Mommy, Nicole, wrote to us:
"Since our Lillian passed away, I have continued to question the purpose of her 10 weeks of life. I want to do whatever I can to make her life meaningful, and having this opportunity to help out your baby, who is in need, is really so special to us! We are happy to share this gift with your son, and pray that it will help him to grow healthy and strong! ... It is truly special to help out your baby and makes us feel that Lillian's short life made an impact here on this earth."-- Nicole and Shannon

We are so blessed by Lilli's legacy. It gives Max a 50% better chance of surviving NEC than he would have on formula feeds. We can never repay this family for their generosity. But we will forever be connected to them, and this beautiful little girl. Her 10 weeks of life have made an unimaginable impact on Max's life, now and forever.

Shiny, Happy Max!

Max finally had a good night's sleep last night! Thanks to Betsy who was able to get an ostomy bag on him that stayed for longer than a few minutes! It stayed on for 8 hours overnight and then Lori had a repeat performance with an 8 hour bag today!!! WOOHOO!!!






After lots of snoozing, Max was his smiley, bright-eyed self this afternoon. He does this to me everyday, just about the time I'm preparing to leave and pick up his big brother and sister. He turns on the charm and just gets so much personality. Today, he was really smiling at us. (Lori his nurse today couldn't help watching that cuteness!!!) He also tried to block out some of the sunlight from outside and discovered his hand.





It was adorable to see him happy and just acting like a normal baby, after such a stressful, exhausting few days.

Relief

Max is doing a little better today. They were able to put the ostomy bag back on this afternoon. His surgeon came by to check the incision. He believe it is just in the outer layers of tissue and it not a danger to his bowels. He did tell us the incision may get uglier, split open and the infection ooze out in order to heal. Since he plans to cut that same incision open for Max's final repair, he said not to worry if it looks like a gaping hole.

He could not say when we should expect it to clear up, but said if it continued to be a problem he'd probably just do the final repair surgery sooner than later. He said now that Max is up to full feeds, it's an option, but he would like to wait as long as possible for weight gain, respiratory health, etc...

Once Max got the bag back on, he could be dressed, swaddled and place on his tummy. He's been asleep ever since...

He started receiving the donor breast milk last night for his 8pm feeding. He first went to half milk and half formula but the transition was so seamless, he's already to full breast milk. He also went up to 16 ml/ hour which a is a full feed for his body weight. They will give him a full 24 hours at that amount and then will start fortifying the milk to help strengthen those brittle bones.

He has lost weight every day for the last 2 weeks, mainly because of all the fluid he was retaining, but tonight, he finally seems to have leveled off. He's at 5 lbs. 7 ozs. They have been estimating his actual weight at 5.6. They have stopped his daily Lasix now and will only give him injections of that drug, as needed, to help with his fluid retention.

The good, the bad and the ugly

Max is battling an infection tonight. Apparently, it's an abscess in the incision from his bowel surgery. The doctors think it's just in the outer layers of his body so far, so they're treating it with neosporin. I'm thinking he's gonna need IV antibiotics with puss oozing out of a wound and getting onto the open pieces of bowel nearby, but I'm just the mom, so we'll wait and see how this all shakes out.

In the meantime, he's totally uncomfortable. He can't wear the ostomy bag, because it sticks to the incision where the infection is, he can't wear clothes, because he doesn't have a bag to protect the ostomy, he can't stay warm, because he can't wear clothes, and he can't sleep, because he can't stay warm. Oh and did I mention, every time he moves his legs to try and curl up, he hits the stoma, which is unprotected and it bleeds and he cries and more poop comes out of the bowel and mixes with the puss oozing out of his incision? It's been a fabulous day on that front!!! AARRRGH!! It's so frustrating sitting there trying to hold his arms to keep him from smearing them in the open diaper catching his poop and holding his legs to keep him from hurting his stoma by kicking it and having him cry, because he wants to move and get comfortable and sleep.

But, if it gets better, and we get him comfortable, and he gets this ostomy reversed and comes home, it will all be worth it!!!

That's the bad, and I guess the ugly too, because that stoma oozing poop all over his clothes, body and bedding all day was pretty gross!

The good, was the wonderful gift we received this evening. 4 coolers full of breast milk. I forgot to ask the family if it was okay to mention their names in my blog, so I won't for now. But we were able to meet them and talk to them about their NICU time, etc...

We didn't realize until we saw them that we'd already met. You run into families in the parents room and don't ask or don't remember names. But as soon as we saw their faces, we remembered our conversations. They had been through so much of what we were experiencing. Their daughter came at 24 weeks (Max at 25). She had problems with a PDA. (Max had his heart valve fixed) Their baby has a perforated bowel and a penrose drain to help empty the belly until the bowel could heal . (Max too) Max is now in the room that their daughter once occupied. They both had NEC and bowel damage. Both were on ventilators, oscillators, and both mommies had to wait and wait just to hold them. They shared the same surgeon, and so many of the same struggles, but Max was lucky in that his bowels began to heal themselves, hers did not.

That's heart-breaking to me. That they lost their little girl. She died after just 10 weeks and Max reached 10 weeks just yesterday. We have been fighting and so has he for 71 days now. We are so proud of the progress he's made, of his will to live and yet we are still scared, that any given day, we could lose him.

We wanted to meet this family, to thank them for this precious gift. It's one of the only ways we have to help Max right now. There is so little that is out of our control. There are so many times when we just sit helplessly and wonder if we will ever see him through this. Breast milk was the one thing that I could give him and now mine is gone. Without the selflessness of this wonderful mom, Max would be getting formula tonight. Breast milk is what will be easiest for his body to digest, and it gives him a MUCH better chance of seeing those bowels heal. That's our goal right now, to give him every chance we can to make it, and come home to us.

They gave us a card tonight, saying thanks for letting them do this, to know that their daughter's short life had meaning. I thought the same thing when the nurses told us of this fellow NICU mom was was willing and wanting to donate her milk. This baby girl was a blessing to me, and to Max. Her life meant that Max gets another chance. I plan to keep the picture of this wonderful little girl who we never got to know. Someday, I hope to show my big, strong, healthy Max the picture and tell him all about her and how this fellow NICU family, in spite of their grief gave so much to help us get him home. I hope we can also share our photos and Max's progress with them, so they can share in our joy, and see how this little girl's short life meant the world to us.

The gift of milk...

It's not a subject I would normally discuss in public, but well, it's about the breasts. I've used them as tools with my first two babies and they've served us well. Making plenty of milk to feed those hungry little mouths, until I was heading back to work or started anti-biotic and then they switched to formula.

This time is different. It's so hard to breastfeed when your baby is a preemie! First, your body isn't ready for this baby. Then the baby isn't ready for the milk. Then you resort to pumping and freezing. For me, that was little bits of milk and then it was none.

Max gave me almost 2 months head start, because of his perforated bowel, and surgeries, he just started eating in the last 2 weeks. But now he's rapidly eating through the small amounts of milk that I was able to store up. We're running out of breast milk and fast.

Normally, I'd say it's time to switch to formula. But Max's bowels are very sensitive. He's been through 2 surgeries and still has one to go, he's had a perforation, an obstruction, and most likely NEC. Now he has a stoma. (part of his intestines sticking out through his abdomen)

The first thing his surgeon wanted him to have in the belly and those delicate bowels is breast milk. It would be gentlest and best. But now that we're almost out, that option is fading. They've started mixing it with a pre-digested formula, but we have a better option.

A wonderful friend who is still breast feeding, but trying to wean her baby has offered to pump and provide milk for Max. She agreed to a battery of lab tests to make sure her blood would meet the infectious disease requirements for Max. She is not alone.

Another NICU mom has also offered to help by providing the milk she has stored and saved. This is an unexpected gift. This mom, just like me, gave birth early. Her baby was cared from in a room just two doors away from Max, the same hospital, nurses and doctors. But her baby, tragically, did not survive. I cannot imagine her grief, or maybe I can.

Every day, for the last 68 days, I have thought about losing Max. I've prayed that he doesn't die, tried to prepare myself in case he does, cried and worried and wondered and begged anyone in the NICU to tell me he wouldn't. I've thought about how I would feel, how would we survive, how we would grieve.

What this NICU mom has endured and is surviving now, is something I hope and pray I won't have to. What she's giving us is a wonderful gift.

There is so little we can do for Max. We've been helpless for these 68 days, watching the medical professionals care for him, pumping and storing that milk was my one task to help him heal. Now that it's almost gone, I feel helpless again. It's one thing Max needs that I can't give him. But this mom can and she is willing and I am so grateful. Words can never express what this means to me. I hope to have the chance to speak to this mom soon and learn more about her baby. I also hope that someday, Max will be able to thank her himself for this selfless gift of milk.

Max in a Hat

He's already getting personality and attitude. Max HATED this hat when I put it on him for the first time today.

His favorite nurse picked it out for him, and since we're trying to keep his body temperature up, I put it on for his diaper change, etc... to keep him warm while we stripped him.

The screams were hilarious. You'd think he was being tortured... I think they may have heard him in the next room, or maybe it was me laughing at his drama.

He must be his Daddy's boy. This hat is WAAAY too girlie for Troy's taste. But I think it's cute on the little man!

She speaks the truth

Ella is bitter and she's 4, so she's not afraid to say it. Actually her words this morning were "I hate God mommy!" The amazing thing about kids, is they just tell it like it is. No filter whatsoever. She's tired of being shuttled around from friend to friend, tired of spending less time with Mommy and Daddy, tired of waiting for her baby brother to come home. She needs someone to blame for all the chaos that used to be her life.

Well, I can understand. Actually, she's saying what we've probably thought many times and just haven't said out loud. It's impossible to live through something like this and not questions why it happened, why us, why now, how could God do this to us. Troy said to God early on "OKAY! I get it already, I give up all control, now help us get out of this mess!"

I reminded Ella today that God did answer our prayers for a baby. Some people never get the chance to kiss and love and see their baby, we do. Some people will never have a brother, she has two. This whole ordeal has made us stronger as a family. It's made us appreciate every minute with one another. It's made us value the important things like health.

God didn't give us the baby we expected. But he did give us a baby to love and to add to our family. He's given us the strength to get through these 66 days and counting. He has kept Max alive through all the health crises he's faced so far. And someday soon, we just know he'll bring Max home to us. We'll get that baby brother she's been so anxious to hold and sing to and love.

Maybe, God is giving us a lesson in faith and control and patience. We're learning every step of the way.

Movin on Up...

He's moved from the ventilator to the CPAP, and now off the CPAP to the nasal cannula!!!(that's the small straw that sits in the tip of your nose providing a burst of oxygen)

This is a huge step for Max and we couldn't be happier. It makes it easier for him to move around, turn his head, and much easier for us to hold and comfort him. It's just generally more comfortable, and it means he'll soon be sitting in the arms of his big sister!

As with any other step forward in the NICU, we know that this can change at any time. But so far, he seems to be very happy with the change. He'll have a blood gas in Tuesday morning.

Max and Daddy

Max is having Daddy time today, so I haven't seen him... but he spent an hour off the CPAP in Daddy's arms. He's up on his feeds and down to a pressure of 4 on the CPAP. That's about as low as they'll go before switching to the nasal canula. (little straw that sits under your nose) He lost more water weight last night.

Daddy Time

It's just an hour until Father's Day, and all of our little people are asleep, so this is a chance for me to talk about that most special man of mine.

Troy is really the unsung hero around here, especially during these late 9 weeks. He has long been the rock this family was built on, but I truly could not have survived without him in these days and weeks since my water broke and Max was born.

So much has changed. Everything was turned upside down, yet Troy has stayed steady and strong and positive, for all of us. It's one of the things I love best about him. He never lets me down. He's always there when I need him, always picking me up when I feel like I can't take another step.

I remember seeing Max for the second time, just a day after he was born. (I can barely remember the first since they wheeled me up in my hospital bed, still drugged on the morphine from surgery) We reached to door to Max's room and the nurse asked us to wait outside. She hit the red panic button and at least 25 doctors and nurses came rushing in to help resuscitate Max. I was sobbing so hard, sitting in that wheelchair, unable to move or help Max in any way, and the only thing I can remember is Troy grabbing my shoulders, pulling me back from the door and telling me it would all be okay. So much of what has happened is a blur.. but through it all, I've had Troy by my side. I wouldn't still be standing if he weren't.

What we've endured, shared and accomplished as a couple and a family, just amazes me. The night I was admitted to the hospital, we met with a NICU doctor, who went over everything that could happen, what we might expect, and what our chances were. Troy said "It's moments like this that either make our marriage stronger, or break it apart. We have to be on the same page and we'll get through this." It's moments like that when I realize not just why I married him, but why I couldn't live without him.

- He stayed home for 2 weeks, driving me back and forth to the NICU until my doctor would let me drive myself.
- He's gone back to work, always with Max on his mind.
- He calls and texts for updates, stops by at lunch when he can.
- He comes home and jumps into help with the kids so we can try to keep their dinner and bedtimes as normal as possible.
- He makes late night trips to the NICU so he can see Max
- He takes more than his share of time at home with Ella and Alex on the weekends, so I can spend as much time with Max as possible.

I could go on and on about what he's done to make life as worry-free as possible since April. But that doesn't even include the stuff he's always done for Ella, Alex and me...

He cooks, cleans, changes diapers, dispenses medicine and band-aids, feeds dogs, shuttles, shops, runs errands, and just about anything else that comes up. He's a hands-on daddy and he's doing it all on much less sleep these days.

He's a wonderful husband who remembers to pick up my favorite cereal, learned how to make a chai latte so he could make it for me in the morning, and endures the "the Real Housewives..." episodes which fill our DVR. (even though he ridicules my viewing choices)

I am more than grateful that Troy is my husband and the father of our 3 children. I am blessed to have him in my life. I couldn't have chosen a better man to lead our family.

Scrub a dub

Tonight turned out to be something special in the NICU, as I was able to help with Max's bath for the first time. I just haven't been able to time it to be there on a night when he was getting his bath. It's usually every 3 nights, but sometimes their body temp, procedures, etc... will change that schedule. Plus I'm usually home getting Ella and Alex to bed. But today, Alex was still running a fever, so I stayed home until Troy could get here after work.

When I showed up, Max was snoozing. I was able to hold him for about an hour and a half and he really snuggled right up to me. Then the nurse mentioned that he was scheduled for a bath, so I jumped at the chance to stay and help. He gets a sponge bath, since he's still on the CPAP, has a healing incision, ostomy bag, etc...

At first, I wasn't really sure how to do it, he was freezing and I was worried about keeping him warm, but once I grabbed that warm, sudsy washcloth, he seemed okay with mommy rubbing him down. I washed his head and face last, so he could be off the CPAP for a bit. He was all snuggled up in a couple of bath towels and his head was all bubbled with shampoo and he just stared at me and held my hands. It was priceless.

Stylin' Baby Max

Ella has her first client.

Today, the nurse called to tell me that Max was having trouble keeping his body temperature high enough. There was talk of moving him back to the isolette, but she wanted to try putting him in some warmer clothes first.

So Ella and I set out on a mission. Find something for Max to wear.

We had several bags of hand-me-downs, plus a couple of gifts people have given us, etc... I pulled out the smallest things I could find, all of them preemie sized. Ella picked the things she liked the best and one in specific for Max to wear today.

VOILA! Here's what we wound up with. Styling by Ella. Max was not please with the "getting dressed" process, but once he got into the clothes and got warmed up, he decided Ella and Mommy might know what we're doing. Isn't he just so grown up and handsome!?

Taste Test...

Max was beautiful and bright-eyed and spent almost a half hour off his CPAP today. He was breathing and gurgling and watching his mommy and I was in heaven!!! He had nurses and doctors and me all just in awe. Look how adorable he is! I know I'm his mom, so I'm required to think that, but just look at him!?!?!

























We've also started something new, along with the feeding tube breast milk, he gets "taste therapy." I put a small sponge on his tongue at feeding times, so he can get a few drops of the milk. He grimaced at first, but then he sucks that sponge dry! The boy knows when he's getting the good stuff.

His surgeon was by this afternoon and while they will continue to move very slowly with his continuous feeds through the tube, he was mentioning that we will try to start small oral feeds sometime in the future.







Meanwhile... it's rough at home, Alex is running a fever, it was 105 tonight and it was tough to find a sitter to come to the house for him so I could get up there. It's amazing some days how we're able to make it work. But so far, we're doing it.

SURPRISE!!!

Max is off the ventilator and on a CPAP mask!!!


The doctor made a decision this morning and said SURPRISE when I hit the door. So far he's doing really well. The best part for me is hearing his voice again. It's been WEEKS since we heard him cry. Music to my ears! His feedings via tube continue and he did lose a little weight yesterday, finally.

Not only has Max moved to the CPAP today, he graduated to a new big boy bed (open crib) and he is wearing clothing for the first time. (just a long sleeve t-shirt because of his IV port, ostomy bag, etc... but it's something) He just spent 2 hours snuggling Mommy and seemed under-whelmed by all the hoopla.

Oh! He also graduated to the next size of binkie... first it was white with a ventilator clip, then purple and now orange. We'll have a rainbow of sizes to keep for his time capsule.

Hands on

She waited 58 long days, actually longer if you count the days since Christmas morning, when Ella found out she was going to be a big sister, again.

She was thrilled, she'd been asking for another baby for months and couldn't wait to hold her baby brother or sister.

She had a great test run when Sophia's new brother, Jack, was born. Miss Kimmie was brave enough to let Ella hold him several times now and she's been just wonderful at it! She is gentle and slow in her movements. She holds him and kisses his head.

You could see it from her first days with baby dolls, how she cradles them in her arms and rocks them and sings to them and still doesn't go to bed at night without making sure he babies are all covered up and dressed in their jammies and tucked in. She really is quite the little mother.

So I guess one of the hardest things for Ella, aside from the fact that she's seeing much less of Mommy these days while I'm at the hospital, and that she's being passed around from friend to friend is that she hasn't been able to hold and hug and love and kiss or even touch her new baby brother.

That all changed today.

Max has moved to an open crib. The top is up on his isolette and he's swaddled in a blanket. He's accessible, and not separated from us by the plexiglass. Ella has been asking recently to hold him and kiss him and so when I had a mommy meltdown meeting earlier this week with the NICU Director of nursing, I asked.

She said Ella can hold his hand and touch him and help me when I hold him. And someday soon, maybe after he's off the ventilator, she can sit in the chair (with our supervision of course) and hold him. This is huge for her! Much like her mommy, Ella wants to do as much as they'll let her do. Daddy may not want to hold Max while he's on the vent, but Ella is raring to go!

So today, when we stopped by for a visit, Daddy lifter her up and she went in for her first touch. It was sweet and precious and a moment that I know I'll never forget. She was timid at first... not sure exactly how he'd feel, how he'd react... but then once she laid her fingers ever so gently on his head, she knew this is what she'd been waiting for. She stoked his head, told him "your big sister is here baby Max and I love you so, so, so, so much." I was trying to get a picture through my tears. Thank goodness our nurse, Jenn, had tissues close by!

She let Alex have a quick turn too, but he was more interested in hanging over the bed for a closer look at all the "stuff" hooked up to Max. He wasn't quite ready to touch, but he did want to be lifted up several times to see his baby brother. Ella couldn't get enough, she wanted to stay with me to hold him, but we'll save that for another day.

This was just the first, of many times we hope for Ella to make her own physical connection with her new baby brother. It's something I've dreamed of seeing and have been so afraid that we wouldn't because Max wouldn't survive. That fear is there, always looming because no one can give us that reassurance. Not just a fear for us, but for the kids. They may be little, but they already have such love for Max. He's part of our family, and their lives... even if he's not home.. YET.

"Day out with Thomas"

It was actually, just what we ALL needed. I bought tickets to the "Day out with Thomas" months ago, as a gift for Alex's birthday. THANK GOD! Because, his birthday, being on May 5th, just a couple of weeks after Max was born, was a bust. We took him with us to buy a couple of gifts and our wonderful Laura, threw him a party at her house that day.




It's one of the few times we haven't been up to see Max right away in the morning, and we missed rounds with the doctor, but it was good to have this time with the kids. Max was doing well, the doctor know how to reach us, and he even called my cell phone while we were at the train depot, with an update.



Now, for the fun... I know Alex peed his pants when he saw that train. Just look at his excitement. There is such joy in his eyes... he was squealing as soon as he saw the train, and when Thomas tooted his horn and started moving... well, just look at his face. This was well worth the price of admission. I caught myself tearing up a couple of times, just because he was so thrilled and we were able to be there with him and share those special moments.



It did rain, and sprinkle, and rain some more, and then POUR! Luckily, the strongest storm came through while we were in the tent waiting to board the train. It wasn't too hot, it actually cooled into the 70's and who cared that we were all wet and chilled, it was great family fun!




HAPPY 3rd BIRTHDAY ALEX!!!! Better late than never...

Let the feeding begin!

Max and I had a morning snuggle, so he could start his feedings at noon. He's getting less than a teaspoon per 4 hours via a feeding tube, but it's a start. He also had his first serious poop in his ostomy bag. Gross, I know, but it's exciting around here to see the plumbing finally working!




Here is a picture of his ostomy bag... minus the poop...





They've opened up the top of his isolette for a test run before the open crib. Next blood gas at 4p.m...

He had a blood transfusion yesterday, which has really pinked him up. They are working to wean the ventilator, but he is still having secretions out of his lungs and mouth, so some hold-up there. They are checking for an infection, as well as a possible yeast infection which could be to blame. So far, nothing has come back positive. He's on 3 antibiotics post-surgery, so that should cover him pretty well.

Thanks to Jamie who hosted Ella for a sleepover last night. Ella just blends right in with her 4 girls and it was a nice break for Alex, who had Mommy and Daddy all to himself. We took him to eat Mexican for dinner. Mommy and Daddy REALLY needed those margaritas!!!!

Control Freak

I blame in on being a big sister. It all started with bossing my little brother around. I had control and I loved it! I became an obsessive compulsive (and proud) news producer who wanted control of that entire newcast... the line-up, the timing, the look, everything! Next, I was a wife and mother who thrived on the organization, scheduling and craziness of a family. My first priority has been the kids. (and Troy of course, but throw him some Cheez-Its and a few gummy bears and he's happy) I shuttle, schedule, clean, dress, play, teach and try to make their lives the best possible.

Then came Max. The hardest thing, since my water broke on April 14 was relinquishing complete control, of almost everything! I couldn't stop my body from laboring, I couldn't stop Max from coming early, I couldn't make him healthy, I couldn't care for him, I couldn't feed him, I couldn't hold him, I couldn't take him home, I couldn't do much of anything... except watch, wait, hope and pray that someday I'd get that baby I'd carried for the last 6+ months. That's what I'm still doing.

Most days, it's agonizing. Max's life is in the hands of people I didn't choose, didn't know before he was born. Some of them, we've come to know pretty well, and they've come to know Max. But, we meet new people everyday, and it's hard for me to just hand over care of my precious boy. Do they know him, do they anticipate his needs, will they comfort him, are they responding to his cues. Are we doing everything possible to get him the best care possible? Should we do more or something different?

I can't even tell you how many doubts this raises for me as a mom. It's just not natural. If Max were a normal, full-term, healthy baby, he'd be at home with us now. I'd be taking care of his every need (with Troy's help of course) and we'd be able to hold him, touch him, bond with him at our leisure. Instead, I ask to touch him, schedule holding him and changing his diaper, offer to do anything else they'll let me to care for him, and since he can't eat yet, I pump what I can and hope that someday I'll get to feed him.

I don't think you can explain this to someone who hasn't been through it, but it's weird, awkward and painful. It's un-natural for a mommy. I think it's un-natural for our family as a whole. Ella is upset and sad, because she wants to hold Max. She needs to hold her baby brother, just like she holds Sophie's baby brother. She begs us to go and get him and bring him home right now. I asked about it at the hospital today, and we are going to be able to arrange for her to sit with me sometime soon, while I hold Max and help me love on him. Once he's off the ventilator, maybe we can arrange for he to sit on my lap and hold her brother. It's something she's been wanting to do since she found out I was pregnant. It's hard to explain to a 4 year-old why that can't happen. To her, it's just so devastating.

This is a phase of our lives that's put every one's plans and dreams on hold.... and I'll be glad when it's over.

Catching some Zzzzzz's...

Mommy needed a nap today, so I left the hospital just a little early and came home, by myself for a quick snooze on the couch. Ella was with my friend Jamie and her girls. Alex was at Laura's and Troy picked him up for me. It was 45 minutes of much needed slumber!!!

I was back up at the hospital early this morning (2-4 a.m.) because Max was NOT liking his new vent settings, and he may have been having some withdrawal issues now that his morphine pump is gone. It took a quick change of the vent and an order for scheduled morphine shots to put the boy right back on track.

He was doing quite a job of filling his ostomy bag with air today. Guess where that came from? (toot toot toot) The surgeon was quite pleased to see that development when he stopped by to check on Max. He even mentioned that Max might be able to start on the VERY small feeds in a few days. It's scary, to think of putting anything back in those troubled bowels. But, we wont' know if we don't try, and that was the goal of this very scary surgery, to get him eating!

He continues to grow and shed some of the fluid from his very puffy, post surgery scare. Most importantly, he spent another couple of hours on top of Mommy this afternoon. Those are always the best hours of my day. I know where he is, I know he's safe, and I know he's with me, feeling my love. I can't do much for him, but that skin to skin snuggling time sure does a lot for me.

On the right track

Max is back on his pre-op ventilator settings. He may lose his morphine drip later today. So far, he seems pretty pleasant.

He did gain weight again, probably from medications and the blood transfusion. But, the doctor wants to get some of that extra off, so they are limiting his fluids for a couple of days and he is back on Lasix.

Mommy is learning how to care for the ostomy bag today. This will cover his stoma and basically, collect the poop that comes out of his belly until his second surgery in a few months. It's important that Troy and I know how to care and change the bags, since he could come home with the ostomy, and then come back several weeks later for the final repair surgery to his bowels.

I should be able to hold him this afternoon for the first time since surgery. Doctors says it will help him to be upright, and snuggling with Mommy! Yippee!

We interrupt this crisis...

Time for some news from the rest of this family, our other two kiddos are alive and well and not getting enough attention from Mommy and Daddy, but we're trying.





ELLA GETS HER DANCE ON

We all took a break yesterday afternoon to watch Ella in her dance recital and the end of first year in the mini company at Starstruck Dance. She was wonderful!!! She has learned so much this year and my, how she's come out of her shell!!! She swing those hips and sassy walked onto the stage for "Wait a Minute Mr. Postman." We could not have finished this dance season without help from Laura, who helped get Ella ready for class every week, and most importantly, the Boetcher family.

Thank you to Kate, who picked Ella up for class every week and brought her back to Laura's house. Thank you for letting her stay over, doing her hair and make up, getting her to and from the recital and competitions. Thank you for entertaining her, treating her like one of your own, and making her feel so comfortable that she stayed away from us for almost 3 whole days!!! We are so grateful for your help and so happy for Ella. She really enjoyed this dance season!
























ALEX GETS HIS GUNS

Then there's Alex. He spent Friday night at Laura's so Mommy and Daddy could stick with baby Max at the hospital. I can't even start on how much Laura and Josh are helping us out. That's another post entirely in the weeks to come. Alex is really enjoying his new friends and playtime at Laura's and he's trying to embrace potty training... but not really.

His favorite thing about having a new baby... his guns. I'm just not going to say anything else about that. The picture says it for me.

GROSS OUT ALERT! Post-op photos

This is Max loaded into his portable isolette (they call it the GlobeTrotter) it's equipped with a ventilator and monitor on board. He's headed down to surgery with his full medical team and Mommy is crying!



This was our first look at Max when he returned from the OR. He was bruised, and a little puffy, but mainly just still. The anesthesia paralyzed him so he could not move for at least an hour after he came back up to his room. The board on his left arm is holding his wrist in place for an IV. he has another IV line in his left leg and during the surgery, they placed a Broviak long term IV port in his right leg. That's mommy's hand holding his head, which usually comforts him. He took the blue "blankie tag" on his head to surgery with him and had it on his head when he came back. It was a gift from big sister Ella and I sleep with it once a week after it's washed, so it smells like Mommy.

This is Max's incision across his belly and on the left you can see the stoma. That is basically a section of his intestines, snipped in two and now both ends are on the outside of his body. This allows the poop that he makes to drain outside his body, a bag will be stuck on, kind of like diaper to collect the poop. It's called an ostomy bag. This will allow Max to grow stronger and the intestinal tissue to heal as much as possible. The surgeon, in a few months will perform another surgery to sew these two ends back together for one healthy bowel.


This was Max on Saturday, one day after surgery. He is so swollen and bloated. His eyes and mouth are swollen shut. You can see his incision and his stoma is covered with Vaseline gauze, which keeps it moist so it doesn't stick and heal shut. You can also see the smaller incision just above his diaper. He has a matching incision on the other side of his body. These are where the drain was in place for the past 6 weeks, allowing poop which leaked into his abdominal cavity to drain out, until he was strong enough for the bowel surgery.

These photos are scary to look at, but this is our new normal these days. We took the photos to keep for Max to see someday. He'll have these scars from his Broviak IV line, Penrose abdominal drain, exploratory incision and stoma, as well as the heart surgery scar which is on his back. We hope Max will be able to look at them someday and realize how far he's' come and how gorgeous those scars are to us. They're reminders of all the surgeries to keep him alive!

Turning things around...

Sorry I couldn't post yesterday! Something was wrong with Blog.spot.com...

Max is turning things around. He gained more than a pound in just a day, which was all fluid that his body couldn't flush through, that was Saturday night, now he's peeing buckets, and should be back to his actual weight soon.

His blood pressure was extremely low, but now that's back up to a normal range.

His pH levels in the blood were too low and now those have stabilized.

His stoma (intestine drain outside his tummy) is starting to drain little bits of POOP!!!! WOOHOO!!! The surgeon stopped by and was pleased with how the incision and stoma are looking. Once Max stops having green bile coming back up from his tummy, they'll be able to start trying small bits of Pedialyte through his feeding tube again.

All good things. Most importantly, his eyes are un-puffy enough to be open again! He's being weaned off the morphine, so he was awake and alert for most of the day. He watched me, smiled at me, grabbed my fingers and let me rub his little head for as long as I could. I was even able to lift and hold him in my arms for a few minutes, while Charlotte changed out his bed!!!

One concern we're still watching is the NEC. (necrotizing entercolitis) The surgeon says as well as Max's surgery went, he can't rule out that part of Max's bowels which were stuck together and the site of his perforation may be NEC. Because of that, he'll be VERY cautious and slow with the feedings. Any overload, could cause another perforation for Max and we'd be back at square one.

Day 1post-op

Max is struggling today and it's painful to watch. He is very bloated and swollen. His body is retaining acids in his tissues, he is basically inflamed all over because of the stress of the surgery on his body. It is taking a toll on him, his heart is smooshed by all the swelling and that is keeping his blood pressure really low, so his circulation is poor and his body is being deprived of enough oxygen. His kidneys work just fine, but his body is not getting the waste washed out so it's building up???

That's what I understand from what the doctors are telling me today, but they don't seem too alarmed. They say this is normal after such a major surgery for anyone, especially for a baby this small. I came back last night just before midnight when his blood gasses started to show signs of a problem and his blood pressures dropped. I was here until about 2 when things stabilized a bit. The neo-natologist was in the hospital with Max as well.

This morning the surgeon saw Max, checked out the incision, his stoma site and says from a surgical standpoint, everything looks good and he's pleased. Now it's just the post-op recovery that a problem.

The doctors and nurses are doing their best to treat the symptoms that Max is showing from the stress of the surgery. They told us the first 24-48 hours can be very rough and they hope things will level out within the next week. We cannot hold him. He looks like an over-ripe tomato that's ready to pop! He holds my finger if it put it in his palm and grabs tight, but his heart rate also rises, so it seems to be painful for him to move even the tiniest little bit. He is on morphine, for the pain, a drip and shots of morphine every 2 hours. He is getting dopamine to help bring his blood pressure up and he's getting two other medications to help with the acid build up. He's also on 2 antibiotics. LOTS of drugs, but so far, still a critically ill little man. They have put in a catheter to help him so he doesn't have to worry about the stress of emptying his bladder. (who knew even peeing yourself was stressful for a preemie?!)

I am with him all day today and tonight if needed. We hope to have the kids back home with us tonight, because this is stressful on them as well and we all need some time as a family, as long as Max is stable. Keep the prayers coming, Max is hanging in there!!!

Anesthesia and incision

Max is doing well. He has just started to open an eye and move a finger after the anesthesia is wearing off. He has a morphine drip to help with pain and will likely need that help for several days. His incision goes half-way across his stomach, but it's a welcome sight if it means he'll be able to eat and grow! (Troy took a couple of pics which I'll upload when we get home.)

Ella and Alex are with friends and we're staying with Max for now.

Surgery ends...

Max is out of surgery. We should see him shortly. He did amazingly well. Surgeon repaired a perforation and there are several others which appear to have healed themselves. He will need another surgery down the road, has an ostomy (sp?) for now. But that can wait until a week or so before he goes home.

in surgery now...

Max went down for surgery about 1:45. He had spent the morning snuggling with Mommy and Daddy and was very relaxed and calm when he left us. His respiratory is the best it's been since he was born.

The nurse just call us (around 3:00) from the OR to say Max was doing well. She estimates another 30-45 minutes, so we're hoping that's a good sign.

More news as we get it...

Twas the night before surgery...

Max has finished his latest blood transfusion. He's resting comfortably and will have some final blood work and x-rays in the morning.

I went back up for a bit tonight, when they learned his hematocrit (red blood cell count) was lower than they expected. I hate to say I told you so, but I've been saying for 2 days now that he looked a little pale. The doctors only take his blood count every few days, because taking the blood to check everything can lower his blood cell count which is so important. It was 39 the last time they checked, and they anticipated today it would be between 33 and 36. His blood count was 28! Mommy may not be a doctor, but I know my boy and his skin tone!

We had such wonderful snuggle time this morning! He grabbed onto the side of my neck and just snoozed for a couple of hours. It's truly the most wonderful time of my day, and so weird do only be doing it for a few hours a day at the most. You take holding a newborn for granted, until you can't do it whenever you want. I spent most of that time in tears, thinking how much I enjoy this time, and how I hope to have so many more days and nights with him in my arms, at home, where he should be. It's like everything we did today made me wonder if it would be Max's last. I'm so grateful for every moment with him. I can only imagine that tomorrow will be that much tougher...

Troy and I will be with him all day tomorrow. We plan to be there first thing in the morning so we can spend a couple of hours holding him. It will be at least a couple of days before we'll be able to hold him after surgery. We appreciate all your wonderful thoughts and prayers. Will update as we can tomorrow.

Day before surgery

Max looks pretty good this morning. The neo-natologist is "tinkering" a bit with his vent settings, since his x-ray was a little more cloudy and his blood gas not quite as good. But, he still feels lungs are in best shape yet and we are ready for bowel surgery. Max will get blood transfusion this afternoon and then start IV antibiotics to prepare for surgery. He's up to 4 lbs. 9 ozs... which the doctor insists includes some fluid retention, and not actual weight gain.

Surgery scheduled

Max's bowel surgery is 1pm Friday.

We don't know exactly what will happen once they get in there. It's exploratory, because they can only tell from the films that there is a blockage a short way up in the bowel which stops the dye from getting through any further. That could be the only problem, or the whole bowel could be a disaster above that. So they'll go in fix that blockage point, pull out ALL of his intestines and run for other problems and go from there.

It could take one hour or many hours. If it's just the one blockage, survival rate is 90% percent, damage beyond that drops the chances. Biggest risks are his respiratory because his lungs are so immature. They are the strongest this week that they've ever been, so that's a plus. The neo-natologist says "this is our window" so we're going.

Next big risk is blood loss. The bowels can be a very bloody surgery and when you're that tiny, you don't have much blood to begin with. Max will get another blood transfusion tomorrow afternoon to prep him for the surgery. They will also take special radiated blood from the NICU specifically for him to the surgery in case it's needed. Max will leave the NICU with his bedside nurse, respiratory therapist, nurse practitioner and a neo-natologist as well as the pediatric surgeon and pediatric anesthesiologist. He will be taken directly to a surgical suite which is heated to about 98 degrees to keep his body warm, since he can't control that on his own.

Max's bedside nurse is Charlotte and we love her. He has had so many nurses already, but it's great that Charlotte started a shift with him today and will work with him the next 3 days as well. That gets us through surgery and his first day of recovery. She hopes to be able to call us from the OR to let us know what the surgeon has found, what's being done, etc... but it all depends on how busy the OR becomes and is Max needs her constant attention. We may be flying blind and just waiting for the surgeon to come up and let us know the outcome.

Once the surgery is complete Max will come directly back to his room in the NICU for recovery, since it's the best spot for the needs of his tiny body.

This was not the choice we hoped to make, but it's our last hope to save Max and get him moving forward. His bowels will not heal with out surgery and he will starve eventually if we can't get food into him, so we have to try this. Friday will be an excruciating day for us. Letting them wheel away our baby and knowing that he may not come back is unbearable, but we hope this surgery will help Max and take us a step closer to getting him healthy and home.

Thanks for the thoughts and prayers, keep 'em coming! We'll try to update as often as we can on Friday.

Triple threat...

Max has multiple things happening today.

1st was his follow up brain scan. (head ultrasound through the soft spot) We should know the results of that later today.

2nd is his barium enema. He just left me for that. They loaded him into the portable isolette with ventilator on board, as well as all his IV fluids and nutrition. He goes down to radiology for this procedure along with his nurse, his respiratory therapist, and his nurse practitioner. It should take about an hour. The films will be read by the radiologist and then his surgeon. This should help the surgeon know what to expect when he goes in later this week. We're still assuming surgery will be Friday, but not confirmed time or day yet.

3rd will be his new PICC line. He lost the old PICC line last night. This is a long-term, central IV, which goes directly to his heart. Unfortunately, Max's PICC line was pulled slightly out of position, and began infiltrating his IV nutrition and lipids (fats) into his tissue. So, it had to be removed last night. They were able to get a peripheral IV line into his foot, but only after 6 attempts. He needs a central IV line for his nutrition, meds, etc... plus a secondary line for blood and anesthesia before surgery. This is why they will place another PICC line later today. The doctor will make a small incision in his inner elbow and they will insert the PICC line into his vein up to his heart for direct access. Max is sedated for this and it will take place in the NICU. This line should last through his surgery later this week. At that time, they expect the surgeon will place a Broviak (sp??) central line. This kind of IV last even longer than the PICC line. It's inserted surgically, under the skin in his groin. A plastic ring or "port" will anchor the line under the skin and keep it in place permanently if needed. The doctor tells me some kids even go to kindergarten with the Broviak.

So, it's been a busy day, and it will only get busier. So far, Max is holding up well, and I'm doing okay too. Just crammed in some lunch while he's in radiology. Hoping he's back upstairs where I can hold his little head soon.