Tuesday, August 31, 2010

False Alarm!!!!

Okay, somehow, the insurance website was screwed up. And Max is nowhere near the lifetime maximum just yet. What a HUGE relief!

It does look like his hospital bill itself was somewhere above the $3m mark, but that's not what gets charged to the insurance lifetime max. They only credit that actually have to pay, which is less than $400,000. HUGE difference there!

So for now, we all continue to have medical coverage, Max's bills continue to roll in, and Alex's surgery is coming up next month. Guess we should consider opening our own medical clinic. It might save us in the long run???

Saturday, August 28, 2010

What I've been afraid to see...

I knew it would be there, and honestly I've just refused to worry about, recognize or confirm my fears regarding the financial costs of Max's 123 stay in the NICU.

We've just been spending what we need to in order to make things work, shuttling kids, eating meals out, buying a new preemie car seat, buying a swing that a preemie can sit in, buying expensive preemie formula, etc... because it's what we need to do to make things work and just get Max home. Yes the bank account has dwindled, but we've been able to make it work and still pay our bills and when push comes to shove you cash out a 401K and decide it was well worth it to get the boy here with us.

Now he's here, we're settling in, and Troy and I decided today to finally take a look at our health insurance accounts. We are on a group policy, through Troy's employer, the lifetime maximum for the policy if $5 million. It's a family policy, so I have to admit I'm not clear if that's $5million per person, or $5 million for the entire family. It's listed on the website just as a maximum for the family, and the other accounts are listed for each person, so who knows...

Anyway, that amount applied to the lifetime maximum so far, if $4,999,932.85. Yep, that's right, we have $ 67.15 left before the insurance company can ditch him or ditch all of us, depending on how it works. That's not even enough for his next appointment to get a flu shot, and I don't think all the bills have come in!

I have absolutely no idea what we're supposed to do next? We're not impoverished, so we don't qualify for government assistance. So where are we supposed to come up with this money? Do we sell our house and a car and live in our SUV? (that wouldn't cover it) Do we stop taking him and the other kids to all medical appointments and just got to Walgreens clinics when someone gets sick? Do we home school Ella so we can avoid the germs at kindergarten?

He still has appointments with the neonatologists who treated him in the NICU, with the surgeon who cut into his body 4 of the 5 times and may still need to take care of 2 hydroceles and a 3rd hernia, not to mention the pediatric ophthalmologist, developmental pediatrician, and his regular pediatrician for those childhood immunizations and the RSV shots he'll need to keep him from a deadly virus this winter. (those shots are $1800 monthly for 6 months)

Oh and that doesn't include if he gets a cold or a stomach bug, or anything, because we can't treat any little illness with him as a minor thing. He can die from a cold. A stomach bug could be a repeat of the NEC and his bowels could shut down. His bones are still so brittle we still can't even burp him normally. What are we going to do?

I have so many questions and honestly, don't find much help out there. Does Troy try to get a different job so that we can get onto a different group policy? Do I go back and find a full time job with benefits and we hire someone to come in and care for the kids, because with Max's compromised immunity he can't go to childcare? Will I be able to find a sitter or nanny with infant CPR experience in case he stops breathing? Can that person take him to his medical appointments every week and meet with the infant and toddler service in our home which will be evaluating how is development is progressing? Could I find an overnight job with benefits so I could be home with him during the daytime hours? Could Troy and I alternate on those opposite shifts with the feedings every 3-4 hours, medications, and two other kids and still sleep enough to function?

My mind is in full panic mode tonight. I can't get any answers until Monday and honestly, I don't expect to learn much very quickly, because that's how bureaucracy seems to work.

All I can do is pray. God has seen us through this so far. He's kept Max alive. Surely he didn't intend for this to be where things to wrong. For us to get him home and not be able to care for him is devastating. We are his parents, we've always had health care insurance for our kids, life insurance for ourselves in case anything happens, even our retirement. I've always said as long as we had each other, we'd be fine. Now, I wonder, is Max going to be okay with us? Can we find a way to care for him and meet his medical needs? If we all lose insurance, what about the other 2 kids? We can buy a policy for Ella and for Troy, but not for Max and myself and not for Alex with his pending surgery recommendation.

I have no idea what we're going to do. I have idea how this happens when we are responsible, caring parents who have the safeguards in place to protect our kids, until now. I can't believe this has happened to us and I just want it to all go away. We've spent months working to get him well and home to us and now this... I knew there was a reason I was afraid to look at that insurance website. Now I've seen what I was afraid to see, and I'm afraid I can never look back.

Wednesday, August 25, 2010

Another kid, another surgery

Alex is going to have his tonsils and adenoids removed next month. We just saw the surgeon today. (same doctor who did Ella's tubes and we LOVE HIM!)

Poor Alex has had off and on respiratory infections, plus pneumonia twice, but the major problems were his speech and his development.

Because his tonsils and adenoids are so large, he speaks like a kid with a plugged nose all the time, even though he is not congested. The surgeon told us today that Alex cannot move any air at all through his nose, and the surgery itself should help him avoid speech therapy. That's huge, because sometimes, I think I'm the only one who can understand him.

Also, at his well child visit last week, the doctor became concerned because in spite of an increase in height, Alex is still only in the 19th percentile for weight. He's been in the upper 20th percentile since he had that nasty bout of the rotovirus when he was almost 2. But now I've noticed that he won't eat anything he has to chew for very long, because he can't breathe through his nose. Laura and I noticed how LONG it takes him to eat something as simple as a peanut butter sandwich. It would take him more than an hour to finish a meal, and he just doesn't have that attention span, so he doesn't eat enough. The surgeon asked me if he steered clear of meats, chews candies, etc.. and it totally makes sense.

He snores, he's tired and still needs naps because his sleep is interrupted by his breathing the surgeon says many kids like him will be misdiagnosed with ADHD, when they're just exhausted and undernourished from this condition.

We decided to keep him out of preschool for another semester or maybe another year to get this resolved. It could be a huge life changer for him! He was a champ today when the shot a decongestant and lidocaine up his nose, then put in a scope to look at his adenoids. I was so proud of him for being such a brave little man!

Friday, August 20, 2010

Coming home...



Kindergarten today, college tomorrow

This is a week of firsts at our house. Max came home Tuesday evening. He's doing really well so far. We were worried about getting him to eat enough, but so far, we may actually be feeding him too much! He was up to more than 9 lbs at his first pediatrician appointment yesterday. He's sleeping up to 5 hours at night and we wake him up to eat. The doctor is fine with that.





He's learned to smile and he's doing in quite a lot. He'll grin at ALL of us, especially Alex. For some reason, big brother makes him happy!?






Another first, Ella started kindergarten Wednesday morning. She was hard pressed to leave baby brother that day. He'd just come home and all she wanted to do was hold him. But her teacher had seen the front page story in the Kansas City Star about baby Max and made her feel very special by telling the class that Ella had a new brother at home.


She had a friend before she started kindergarten. She met "Kimberly" and her Daddy at the neighborhood pool last week while Miss Sarah was baby sitting. It helped to see a familiar face that first morning. By the end of the 1/2 day, she LOVED Mrs. Hinkle and was so excited for day #2!

Today, day #3 at school, was also Ella's fifth birthday. When we went to bed last night, Ella and I talked about the sprinkle cookies she was bringing today as treats for her class. She informed me she wanted to be dropped off at the curb in front of school in the drop off line. "I'm a big kid in kindergarten now Mom. I can walk to my class all by myself." I convinced her to let me come in again today, just to help carry the birthday cookie treats, but she walked ahead, showing me how to get to her classroom and how she'd go in and put her things away all on her own. We may try it next week when Troy starts taking her to school in the mornings.

She told me last night "Mom, I wish I didn't have to go to college. I'm really going to miss you!" I guess she's looking ahead to the future already. Seems like there first 5 years have flown by, I can only imagine that sending her off to college will happen in the blink of an eye, and I don't like it. My baby is growing up!

Monday, August 16, 2010

Twas the night before...

Max is coming home tomorrow. That's what the doctor said when I left the hospital this afternoon. I can hardly believe it is true and finally here!

These last 122 days have been excruciating, and scary and long and yet wonderful, because he's been with us. I would take another 122 in the NICU, as long as it meant I get to keep Max with me. That's what Troy and I have said all along. We can endure anything, survive any of it, as long as we don't lose Max, we'll make it through.

People say "I don't know how you do it?" But the bottom line is you have to. You can't stop, you can't give up, you can't surrender because you have this baby who is fighting for his life, and so you have to fight too. You fight to juggle everything, you fight to keep some normalcy for the kids at home, you fight to understand what is happening to your baby and to make sure he's getting the very best care possible every single day, you fight to keep your marriage strong because Lord knows you couldn't survive without one another, you fight and fight and fight until you just don't feel like you can fight anymore.

Finally tonight, I hope we're seeing the end of this fight, or at least a new beginning. Max's battles are not over, but finally, the fight to keep him alive and get him home to us, is coming to an end.

Tomorrow, we go get him, and bring him home, and at last, this party of 5 will be sleeping under one roof!

Sunday, August 15, 2010

Post surgery



Because I was so overwhelmed and never got around to an update on here... yes, surgery went well for Max on Friday. It was a scary start, but he did really well and did not require much anesthesia at all.





He was waking up just a few hours after surgery, but not enough to continue breathing on his own. Troy and I left him around 10 and came home to the kids. By midnight, the nurse called to tell us he was awake, extubated (off the vent) and he'd be eating by 4:30 that morning.








Today, he's back up to full feeds, pooping, smiling and breathing completely on his own! He passed his car seat test this weekend and once he finishes his antibiotics Monday, they'll pull out his final IV. We should be able to bring him home on Tuesday.


It's been 121 days today, more than 4 months of this crazy chaos, and we are so ready to start the next chapter!

Quality, but not so quiet family time

We took the whole family (minus the doggies) up to see Max today. The kids haven't been there in a few weeks, sniffles, cold sores, etc... but today the stars aligned and it was great! They really wanted to go up yesterday, but we wanted Max to have one more day, post surgery to rest and recover.





Alex has been waiting quite sometime to hold his baby brother. Today, big brother did a great job and he was so happy to get his turn with Max!








Ella wasn't going to pass up another opportunity to hold him!!!
















They both helped Mommy feed him his bottle this morning.











Then Max tried to have his normal snuggle and burping time with Mommy, but Alex joined us today. He thought it was hilarious watching and listening to baby Max burp!








We've been talking a lot lately about Max coming home. It's something we didn't mention regularly in those early days, because we weren't quite sure when or if it would happen.

Now it finally seems real. The doctors tell us Max will come home this week. Maybe Tuesday. So we've started gearing the kids up for baby brother's arrival...at home! Alex kept asking while we were at the hospital today "can we take baby Max home?" so I told him he'd have to ask the doctor. When he did ask the nurse practitioner, and she said "in two days" Alex was disappointed. He stuck out that bottom lip and was sad. It made me sad, but happy too, knowing that they are as anxious and excited as we are, to finally bring our baby home!!!

Friday, August 13, 2010

Surgery

Max just went down for surgery around 2:45. It will be 5:30 or later before we expect to know anything.

They plan to repair the 2 surgeries and reduce the two hydroceles as well.

He gave us a scare as they were loading him into the transport. He crashed, dropping his heart rate into the 30's and his oxygen to around 16. They were able to bag him and bring him back.

It was a more of a mechanical problem than anything, something was not working properly on the portable ventilator and he is too sedated to breathe for himself.

Just a reminder of how fragile he is and why, even this "band- aid" surgery is life threatening for his little body.

Thursday, August 12, 2010

Surgery Eve

Tomorrow is Max's hernia surgery.

He should go downstairs to the OR around 1 p.m. They'll put him back on the ventilator late tomorrow morning.

It's scary tonight, thinking of doing this one more time. Every time we do it, it's a little less scary, and he does a little better, but it's still surgery and I never like watching him being taken away and knowing it's possible he won't come back to me.

This surgery is the most minor yet. They tell us it should take about 2 hours, little anesthesia, and quicker to get him off the ventilator and back on food. We're hopeful that this will be easier than the others, that he'll make a quicker recovery and that it will be his last.

Max smiled at me today. For the first time really. We were playing and I was kissing his face, his cheeks, his nose, his ears and forehead, and after a couple of those kisses, he just pulled those cheeks up and smiled. I kissed again and he smiled again. It was a moment... where he didn't seem like a preemie so much anymore. He didn't seem sick. He was happy, like a baby should be. It was the first time I thought I saw him not scared or hurting or unhappy or exhausted, just joyful.





Troy and I will both be with him tomorrow, we'll post updates as soon as we have them.

Wednesday, August 11, 2010

Alex and the adenoids

This is the tale of a boy and his breathing. Poor little Alex has always been stuffy. He gets head colds so easily and that snot just flows like water out of a faucet. But lately, his nose has become a bit of an issue.

We tried decongestant. (yes his doctor prescribed I didn't disobey the over the counter laws!) We tried allergy medication. The snot has stopped, but Alex still can't get air through his nose.

He snores at night, he speaks with a nasal accent ("Dho Mommy!"), and he could spend and hour and half eating the same meal it takes the rest of us 20 minutes to eat simply because he has to chew and breathe with his mouth. He refuses to eat foods that take too long to chew such as meat and vegetables, he's a huge fan of all things mushy and involving bread!

So today, when we all went to get our shots for Max to come home and for the kids' well-child exams Alex was only in the 19th percentile for weight! He's always been tall and thin, but this is getting ridiculous. So the doctor took a look and he is referring us to the ear, nose and throat specialist. He assumes Alex may need an "adenoid-ectomy." He says the adenoids appear to be blocking his airway through the nose enough that he's a mouth-breather.

Poor little guy! He's already had such a rough summer with Mommy back and forth to the hospital. He isn't potty trained and he has no interest. Now, we're talking possible surgery. But I hope we can find a solution of some kind, to help him breathe a little easier, eat a little more, and speak where someone other than just mommy can understand him.

Moving Day...

Max moved into a new room today. We've spent 100+ days in our room on Cactus Circle. At the time when we were moved back to this spacious room with windows and sunlight, we were just grateful that Max was alive! He was 3 lbs, recovering from heart surgery and a perforated bowel, on a ventilator, and not eating food.

Today, when I arrived in the NICU, I learned we'd be moving to our third room since Max was born 117 days ago. We're on the new unit now, just opened last month. It's a beautiful new room with fish and friends on the walls, a window view, and plenty of space. Max is 8 lbs. 11 ozs tonight. He's eating 6-8 times a day, breathing on his own, preparing for his fifth surgery Friday and there is talk of him going home. It was a happy day and it felt like a new beginning for Max.


But tears came as we packed his things and left room 33 empty. That's the room where Max fought for his life and where he won. It's the room where little Lilli lived, for the 10 short weeks of her life, and the room where milk from her Mommy helped save our Max. I've always felt a little of Lilli in that room and I was sad leaving today. It was like Max was moving on and while I was so proud and thrilled for him, I was sad for Nicole. Sad that Lilli never grew as healthy and strong as Max is today, sad that she never saw the light at the end of the tunnel that we are finally not afraid to think and talk about.

I think of how many times we thought we would lose Max. How many days and nights we spent in that room watching over him, holding him and praying for his life to be spared. I can only imagine that Nicole did the same and I was sad that she left that room under such different circumstances. I was sad that Lilli didn't get to make the same move, toward going home.

Max is still drinking Nicole's milk today. It's because of her loss and her generous spirit that Max is big and strong and healthier. I can't look at him and not think about how we got here.

We are looking forward with excitement and joy. But we also look back, with a bit of sadness. We are eternally grateful for the gift of Max.

Monday, August 9, 2010

Magic moments...


Mommy suits up to help change the IV dressing


Daddy gets some snuggle time after a long day at work


Max loves the green elephant on his bouncy seat


Kissy face with Mommy


The magic number is... 70!

He's worked so hard to get here! Today, Max reached full feeds, 70 mls every 3 hours! WOOHOO!!! He loves the stuff! We are so proud of him for being so patient (not really) and waiting to get to this point!

Now that he's up to full feeds, the doctors and dietitian are working to help him grow and strengthen his bones. Just this afternoon, they switched him to alternating bottles of formula and bottles of breast milk. The formula is a special brand (it ain't cheap!) and it has lots of calcium and phosphorus ( I hope that's the right mineral) to help strengthen his brittle bones. He's also taking a preemie multi vitamin twice a day. We hope to get those bones built up, but it will take several months after all that time on IV nutrition.

It's great to be at this point, and now we're BEYOND ready to get him home. We're trying to be patient, but after 115 days, our patience is almost dead. The main thing holding him back right now is this final surgery. I was afraid they were not going to be able to get to it this week, and we were ready to just take his discharge and come back in at a later time to do it outpatient. But we are on the surgery schedule for Friday, which could get him home early next week.

Ella starts kindergarten next Wednesday, so I'm pushing it to make everything happen. It's a rough week with no babysitter, Ella starting school, etc... so Mommy is feeling a little frazzled about how to make it all work. There are literally a few days, where we might not be able to get up to see him at all, if he's still in the hospital. I'm hoping that won't happen, because it makes me sad just to think about it.

He had his 4 month immunizations last night, yes, it really has been that long. He did really well with them. The rest of the family is going to the doctor this Wednesday to get our shots. Ella gets her 5 year old immunizations, Alex just needs a second Hep A shot for preschool, and Troy and I are both getting whooping cough shots.

Tonight, he passed his hearing screening, for both ears! It's funny, we've been so busy just trying to keep him alive, that you lose track of the other problems that could lie down the road. We are blessed that his sight and hearing both seem okay so far. Tomorrow or Wednesday, he'll have an MRI to check his brain development. That's scary as well, but we're hoping it will look good and give us some piece of mind.

After surgery, he'll be on the ventilator for 24-48 hours, then start eating, and within a few days, we hope he'll be able to come home. He'll need to have his car seat test still, after surgery. He needs to be able to sit in his car seat for 1-2 hours and maintain his oxygen and heart rate.

In the meantime, he's just eating and sleeping and pooping. We spend as much time with him as we can, but it will be so great to have everyone in one house together!

Sunday, August 8, 2010

Baby steps...

Do I dare say it... Max will hit full feeds tomorrow! He's at 65 mls tonight, that means 70 mls tomorrow. This is what we've waited for, now they should be able to schedule his surgery. That's the one thing keeping him in the hospital at this point.

Tonight, he's getting his 4 month-old immunizations and his hearing screening.

Keep praying that he'll continue to take these baby steps toward getting out of the NICU, and home to his family.

Saturday, August 7, 2010

60 Sunday... Dog Day at the Robinsons

Max is up to 60 mls on his feeds. We're almost at that magical 70 mls mark! HOPING, HOPING, HOPING they'll schedule his surgery in the next few days? I so want to get him home before Ella starts kindergarten. I have one more week before the craziness ensues and I'm praying for good timing...

Ella's fine after he spill where she landed on her head. We watched her closely for a couple of days, and the worst was the goose egg which went away overnight.

Today was "dog day" at our house. Not hot dogs at Hooper's, which is how we normally LOVE to spend a Saturday, but a day taking care of the doggies before we get baby Max home. Daddy took Lola to the vet last night. Both dogs had baths outside today, they were brushed and groomed and had fresh flea treatments. They both even got new pet beds from Costco! So tonight, they're fresh and clean and ready for the baby.

My new theory, "if we prep it, he will come..." We've hung pictures, purged, cleaned, and prepped about as much as possible Now I'm ready for the boy to come home!

Wednesday, August 4, 2010

Concussion watch...

Ella literally fell out of her chair at dinner tonight and landed on the hardwood floor with her head and shoulder. She has quite a goose egg, and we're waking her every few hours to watch for signs of a concussion.

I think I may have to wrap Alex in foam pads and make him wear a helmet. I need at least one kid with no urgent medical needs.

Tuesday, August 3, 2010

I'm not beating my child, I'm burping him...

Max's brittle bones have worsened. It's actually "rickets" which is now called osteopenia of prematurity.

We knew he had 3 ribs showing fractures. Today, the doctor asked me to stop burping him vigorously, to avoid fractures. Talk about feeling like a HORRIBLE parent! After several tearful hours I realize I had no way of knowing that I couldn't burp him like my other two kids. Nurses have watched me for days and never said anything, so now that I know, we'll do it differently.

Apparently this will take months to improve and he could be susceptible to fractures for the first year of life. Crawling should be a BLAST!

Getting close... but lots to do

Max is up to 40mls on his bottle feeds. We need to get to 65 or 70 which should happen by early next week.

I suspect surgery sometime next week for the hernias. They will schedule after the end of this week when he is off all IV nutrition.

Troy and I have our going home class tonight. Then we schedule our night to sleep over in the NICU.

The NICU doctor told us we both need pertussis (whooping cough) shots and both kids immunizations will be updated a little early before Max comes home. She called our family doctor to make this all happen.

Besides getting up to full feeds and the surgery, Max still needs an MRI, hearing test, 4 month immunizations, and more before he'll be ready to go.

We're on the road to getting him home, but still plenty of roadblocks ahead.

Sunday, August 1, 2010

Fancy Fun for Ella's 5th

Ella asked for a Fancy Nancy Tea Party for her birthday this year. She doesn't actually turn 5 until next month, but the NICU doctors suggested we have her party in July, before the chaos of Max coming home ensues... So Ella got her birthday celebration a little early this year, and for the first time, we didn't have our party at home.

She invited some of her many friends. Just look how much fun they had dressing up and being fancy and sipping tea together.

Ella getting a little fancy before her friends show up.


the teacup cupcake cake (say that 3 times fast!)


Sophie!!!!



Kate


Ella helps Sophia in the dress-up relay


Macie decorating her tutu


Daddy helping his team in the dress-up relay. He was too big for the dress, but we were one person short on this team.


Madelyn




Gracie


Hayley J. helping the little girls with their stickers for tutu decorating


Hayley N. trying on all the dress-up stuff at the party (somehow I managed to blur the only photos of her twin sisters Ellie and Abbie)


Daddy and Alex did find some guy time amidst all the pink and frilly fun!



Ella wanted real teacups, and she got them. I pulled out all of Nana's teacups and mine for she and her friends to use. They sipped so sweetly and had such a good time. I know Nana would have been proud to see those cups finally getting some use.. and we didn't break a single one!

My girl is eternally fancy. Just an example: She went to dinner with Miss Kimmie and Sophia after her party and before the girls' sleepover. While the other girls ordered vanilla and chocolate gelato for dessert, my girl ordered coconut. That's just how she rolls, Ella is her own individual, fancy girl and we wouldn't have it any other way.

We are so grateful to all her friends for making Ella's birthday so special and her summer so much fun! We can't thank you enough for the play dates, pool time, movies, and more! You have helped keep her sane while Mommy is at the hospital with baby Max!!! We love you girly girls!