The NICU family and the Village

It's like I have a new family. Since Max was born, we've become part of this new larger community, the NICU, and it's a family of sorts. The doctors, nurses, respiratory therapists and the other preemies and their families; these are the people Max and I live with on a daily and nightly basis. It's amazing how they seem to be the communication center of our lives.

I don't read the newspaper or watch newscasts, I might occasionally read a few headlines on my cell phone... (I hear there's some sort of oil spill) I text from the NICU parents room, update he blog and Facebook, but that's really the extent of contact with the outside world. There is no time for lengthy phone calls, since I can't use a cell phone inside the NICU. Quick calls from the house phone are just to make arrangements for Ella and Alex, or to update Troy. It's like I walk inside those double doors every morning and time stands still. It hasn't moved since Max was born.

My communication is with those who are caring for Max and those other parents who are in the same boat. Most of my time is spent in his room, watching the monitors. They beep when his pulse oxygen is too low, or when it's too high, when he's too hot, or too cold, when his heart rate drops, or when he forgets to breathe. It's amazing how many bells and beeps and whistles I can now identify, even from down the hallway. I hear them, even in my sleep. I've learned to tune them out and only panic, when the nurses move faster, or doctors pay attention, or when someone hits that red emergency button and EVERYONE comes running to help.

When I'm not listening to the electronic chatter, I'm talking with Max's nurse, respiratory therapist, or doctors. I must seem like an idiot to most of them. I ask questions about everything, every day, over and over again. We are constantly hungry for information, updates, anything that will give us a way to help him, or a glimmer of hope, that he will survive. We feel so useless and helpless, there is nothing we can do to help him, or care for him, or heal him. We just touch him, hold him, talk to him and will him to live. They comfort us, support us, and educate us.

We're not alone. When I need a break, or usually just to hydrate, I head for the parents' room. There, the talk is minimal. Most times I chug some water or a chai, grab a graham cracker and head out the door again. Sometimes, the TV is on, and I stare at whatever stupid show is on. No one ever turns on anything of value, it's just about background noise. Something to look at and not think. I've never heard anyone ask to watch something specific or to NOT change the channel. We just don't care. No one is really watching.

We ask one another how the son/ daughter is doing today, how we're holding up, and when each family might be going home. We pass in the halls, smile and say "hello," share hand sanitizer, surgical soap, scrub sinks and the supply of sterile bottles. We don't walk into each others rooms, we don't see the other children. We chit chat and smile knowing that these families have their own daily drama, they too are bewildered by what's happened, and living in shock... just like we are.

So many people call, email, comment on Facebook, or speak to us personally, asking how Max is doing, how we're doing, how they can help. I say the same thing to everyone. "He's doing okay." "He had a good day." "We're hanging in there." "Taking it one day at a time." "Thank you for your prayers." "Thanks for all your help." I feel like' I'm a space cadet! I can't focus my thoughts on anything. I'm overwhelmed by what's happening to us and what's happening for us.

Friends and family have cared for our children, taken them in days and nights. You've mowed our lawn, fed us meals, sent us money and gift cards. You've visited us at home at in the NICU and you've prayed for us and for Max. I haven't gotten around to writing thank you notes. I don't even know where to start. How do we thank the people who have saved us? For these 6 weeks, we have survived thanks to you. Words cannot express how grateful we are, how amazed by your generosity, how thankful for the large, extended family, we never knew we had.

My friend Julia always told me it takes a village, and Max may be tiny, but his village is bigger than ever! So thank you, to all of you who have helped us, who care for our family, and who work to save Max everyday. Even if I seem catatonic, or oblivious, I do realize how much you're doing for us, and we are eternally grateful. This road is long. We are weeks, months away from Max being strong enough to come home. We have another surgery ahead, and who knows what else. So thanks for sticking with us. I hope we haven't scared you off just yet...

6 weeks and counting...

Six weeks ago today, we welcomed Max into our lives. It seems like just yesterday, and also, a lifetime. It's been draining, exhausting, frightening, and challenging. But he warms our hearts everyday and we're blessed to have him.

Most days, I feel like I'm still in shock. I can't put away the pile of maternity clothes in my closet. Most of them, I didn't even get the chance to wear. I barely got the chance to rub my big belly and feel him kicking inside. I was just past the 5 months of sickness and finally gained back to my start weight after feeling so horrible. I was mailing our taxes, my water broke and my whole life changed. From that moment on, everything has been a blur. The trip to the hospital, thinking I'd spend WEEKS on bed rest trying to stay pregnant, and then going into labor, just over 48 hours later. Max was here, almost before we had a name picked for him....

I can't imagine life without him. The kids ask almost daily when he's coming home. Troy and I bond with him more everyday. It seems like he knows us, loves us and finds comfort in us. It's harder everyday to leave him in the NICU. He's the baby we weren't ready for, but we can't wait to get home.

Tonight, they tried to feed Max a little Pedialyte. But it didn't make it through is plumbing. Now we're heading for surgery. He will have a contrast study early next week, and then the surgeon will meet with us to get things scheduled. It's not the outcome we were hoping for, but it's just another step on the road to getting him well and getting him home.

Better afternoon

Max is doing better this afternoon. He's alert and keeping his body temperature more stable. First feeding will be 4:30 and every 6 hours after that. He had a good blood gas, so they're weaning his ventilator just a bit. He just had a visit from cousin Julie and Aunt Sue.

Friday morning...

Max is not himself this morning. His nurse has noticed it too. He's lethargic, having trouble maintaining his body temp (high then low) he's pale and his oxygen is dropping a lot. May just be that he's getting low on the red blood cells again and needs another transfusion, but we'll see. Feeds should start today. But that depends on how he is doing.

Day off...

Max basically had the day off today. No vent changes, no blood gasses (since 4 a.m.) no x-rays. Probably because tomorrow is a big day. They will start the attempted final feeding before we have to look at bowel surgery tomorrow.

He enjoyed some quality Mommy snuggle time and showed me those precious eyes. I can't tell you how much I love seeing him alert again. It's been several days of lethargy and it's much better to see him looking more active and well.

He weighed in at 4 lbs tonight! Part of that is fluid, which is why they now have him on a daily diuretic (Lasix) to help shed the fluid his body is retaining. But he has gained some weight, even without eating, thanks to his baby Gatorade and IV lipids. He's almost big enough to be in an open crib instead of his isolette. He's keeping his body temp high enough that they have to unwrap him from his swaddle. He really LOVES the swaddle, so I hope they'll control that soon. I wonder if he could be running a slight temp. We especially worry about that with his infection, but tonight, the nurse thinks it's just climate control.

YIPPEE Some good news!

Today was a GREAT DAY!

Max saw the ophthalmologist for a second time. (his first exam was 2 weeks ago) At the first visit, the doctor said Max's eyes were very immature so he's need to examine again. Today, he told us the blood vessels in Max's eyes look like they are developing well and he does not think vision will be a problem. I can't tell you how great it was to think we might be able to mark at least once concern off the list.

Max's respiratory care is finally getting back under control. He had 2 great blood gasses. and he was de-satting much less. The doctor has now ordered daily doses of Lasix to keep the fluid off his body, specifically his lungs. I've been asking about this for more than a week, and now the doctor thinks it does seem to work for Max. I hope it will give him some relief and help him to breathe easier.

Most importantly today, we had some great time to connect and snuggle. We spent 3 hours doing kangaroo care. (Max up against mommy skin to skin) He slept and cuddled and clung to me and just was so peaceful. The nurse said she wished I could be there all the time, because his heart and lungs responded so well to our time together.

After our snuggle time, he's usually wiped out, but today, he was alert for the first time in 4 days. He stared at me for an hour, held my fingers and pulled them to his mouth and wouldn't let go. Since last Friday, he's been so sleepy, lethargic and just not himself while battling this infection and trying so hard to breathe.

I have my best sleep when he's on my chest. There is just something about knowing that he's right there, safe and warm and in my arms that finally allows me to rest. Today was a WONDERFUL break. I felt like he was loving me and needing me and finding comfort in his mommy, just as much as I find in him.

NEC... Necrotizing Enter-colitis (pray for poop!)

Max's blood gasses held steady today. His body is responding to the antibiotics. The doctors tell us he probably has peritonitis. (an infection in his peritoneal cavity around his bowels and abdomen) This is likely caused by the bowel perforation, and trying to feed him again, which allowed more waste into his abdomen. We met with the surgeon this evening and for the first time, he used the word "NEC.

NEC or necrotizing enter-colitis is a condition involving the blood vessels which causes the intestines to deteriorate, perforate, collapse on themselves, etc... It can be deadly, but luckily, we think Max's case was caught early.

The question now, is his bowel healing, can it still heal itself? or do we need surgery to fix it. We asked the doctor questions for almost an hour tonight. He was straight forward, gave good answers and told us what we need to know as we move forward. We won't know what's next until they try to feed him and we see if it works. If the plumbing does what it should, we'll get poop! If not, they'll start some tests to look at the bowel, find the damage, and prepare for surgery as early as next week.

We have discussed options, sought a second opinion, and right now, we think we're as prepared as we can be. This would be Max's 3rd surgery. His second major operation, including the heart valve repair. It's a lot for his little body to handle, but given the options, it may be the best thing to help him heal, eat, and grow so he can get strong and big enough to come home.

More to come... in the meantime, pray for successful plumbing and poop!

(**here's an article on NEC whilch I snagged from MSNBC)

Mysterious disorder killing preemie babies

Doctors hunt for a way to protect tiniest patients from intestinal disorder

The Associated Press

updated 9:10 a.m. CT, Tues., Aug 8, 2006

WASHINGTON - It's one of the grimmest threats to premature babies: Their immature intestines break down. They can't be fed. In the worst cases, holes in the bowel let bacteria leak into the blood — and kill.

This mysterious disorder is expected to soon overtake lung disease as the leading killer of preterm infants, and researchers are struggling to figure out why it strikes and develop the first real protection.

"We're keeping the most fragile and vulnerable babies alive longer" with better respiratory care, but "at a price," laments Dr. David Hackam of Children's Hospital of Pittsburgh.

"What hasn't gotten out is that many of these babies then are at risk of developing NEC" — the shorthand term for necrotizing enterocolitis, a severe intestinal inflammation that can blindside doctors and parents alike.

Diana Seabol's experience is typical: Her twins were born almost 2 1/2 months early. Three weeks later, she was ecstatic that son Cameron's lungs were strong enough to come off a ventilator — only to watch him be rushed to Hackam's hospital for emergency surgery that same day because his intestines had perforated.

"Nobody really talked to me about what happens with preemies," said Seabol, whose son, now 2, survived that first bout with NEC and some life-threatening complications a few months later. "It would have been nice to look for some signs."

Affects 1 in 5 premies
NEC occasionally hits a full-term infant, but mostly afflicts the tiniest preemies, born smaller than 3 1/2 pounds. Estimates vary, but Hackam said NEC may affect as many as one in five preterm infants.

The National Center for Health Statistics reports there were about 500,000 pre-term babies born in 2004, the most recent data available.

It starts with subtle symptoms, such as poor food tolerance. In babies diagnosed early, feeding is stopped to let the intestines rest and hopefully heal themselves. They're also given intravenous antibiotics. About half recover.

But the rest worsen, their abdomens swelling as inflammation increases. Bacteria inside the intestines leak out, causing bloodstream infections. Surgery is required to remove portions of dead intestine, but "by the time you get to that stage, it is too late," says Dr. Gail Besner of Columbus Children's Hospital. "The damage has already been done."

About half of babies with severe NEC die, and survivors can face lifelong complications depending on how much of their bowel was lost.

Hope for finding a cure
The goal: To develop drugs that can protect these fragile babies' intestines from becoming inflamed in the first place, just as doctors now routinely give preemies lung-protecting therapies.

Besner discovered a growth factor, named HB-EGF, that promises to do that.

The body normally produces this protein, which helps stimulate intestinal cells to grow and counters inflammation. It's found in the amniotic fluid that nurtures a fetus, and in breast milk. (In fact, premature infants given breast milk through their feeding tubes seem to have a lower risk of NEC than those who receive formula.)

Giving extra doses of the growth factor to newborn rats whose intestines were deliberately stressed greatly reduced their chances of getting NEC, and helped those who still got it to survive, Besner found. Now she is seeking permission from the Food and Drug Administration to begin the first human studies, by administering doses straight into high-risk preemies' feeding tubes.

In Pittsburgh, Hackam found a different molecule that seems important for intestinal healing.

The "intestinal barrier," or lining, Hackam describes as "a real living fort," requiring constant maintenance to seal off injuries before bacteria can penetrate them. Cells called enterocytes are the repair workers, swarming over to patch any breach.

But the intestinal barrier in newborns, especially premature infants, isn't fully developed and thus has an impaired ability to do those repairs, Hackam discovered.

Moreover, in babies with NEC, a switch that acts like a brake is turned on inside their intestinal cells, abruptly halting the enterocytes' movement. He's now hunting drugs to turn that switch back off, so the babies' innate ability to heal can finish developing, and he hopes to begin clinical trials within a few years.

For now, hospitals are supposed to watch closely for the earliest signs of NEC; it's one reason that feeding is begun slowly for small preemies.

Watchful parents
But parents have a big role, too, Pittsburgh's Seabol points out. They may be first to notice warning signs, even after survivors go home. At 4 months, Cameron suddenly quit finishing his bottles, and his mother had to insist to initially skeptical doctors that something was very wrong. Indeed, a temporary patch from his initial surgery had quit working, leaving the baby unable to absorb food. After a month in the hospital, Hackam successfully reattached the remaining ends of Cameron's intestines.

Now 2, Cameron is thriving, "but I'm aware it could come back at any time," Seabol says.

Copyright 2006 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

Midnight Repreive

Finally I'm home from the hospital. I went back up after Max's 8pm blood gas was another not so good report. They gave him the Lasix to help shed some of the fluid he's retaining after his blood transfusion this afternoon. (#6) He's up to 3 lbs 12 ozs... which is a HUGE gain and most of it is just fluid around his face, neck and torso. He'll get Lasix over the next several days to help with that.

They did another blood gas at midnight and FINALLY, for the first in the last 24 hours, it's improved! That's fantastic news, and good enough for Mommy to get a little sleep while Max is doing the same.

I told the NP tonight I felt like I was watching Max die an unable to do anything to help him or to stop it. She assures me we are NOT at the end of the rope and have a lot more choices. That eased my concerns, but just a little bit.

Good night,

Vicious Circle

Max is getting his 6th blood transfusion tonight, followed by Lasix to chase away some of the puffiness. He's been puffy and tired all day long, really, all weekend.

Troy and I meet with the surgeon tomorrow evening regarding Max's bowel perforation or obstruction, or whatever it is keeping him to eat. We have lots of questions and we're hoping to finally get some answers about what's next for out tiny little man. I've also spoken to Children's Mercy Hospital about having another surgeon consult on the case. I want to make sure we're doing everything we can for him right now, which is not much. It's the worst feeling, watching him, feeling helpless, because there is so little we can do.

His lung disease is getting worse, they tell us, which is because he's growing bigger, but he needs to grow more healthy lung tissue to help feed oxygen to his body. To grow, he needs to eat, to eat, he needs his bowels to work, for his bowels to work, they need oxygen to grow... it's a VICIOUS CIRCLE!

Sunday, antibiotics kick in

Max looked better today. The antibiotics (3 different kinds) appear to be helping. He's less puffy, less warm and more alert. (plus the good blood gasses) He lost weight the last 2 nights, but grew inches, so he'll be thinning out a bit. LOTS of labs plus chest and belly x-rays tomorrow. We should find out which day we'll meet with the surgeon as well. We had some great snuggle time today. He really loves being swaddled up in his new big boy blankets!

Saturday, Sleepy, talk of surgery...

Max is tired today, but they're working to wean him slowly from the ventilator. He still can't eat, because of his bowel issues and the doc says we're probably heading toward surgery. We meet with the specialist this week. He's 3 lbs. 8 ozs... but LOTS of puffy fluid retention they're trying to shed. He slept through our entire snuggle time.

Friday, possible infection?

Max is showing more signs of an infection today. White blood count is up and platelets are down, so Max is now on 3 antibiotics. He's actually doing okay so far, but they're watching him closely for where this bug is... He's also getting another dose of Lasix to help get rid of the fluid he's retaining. He's up to 3 lbs. 9 ozs.. and that's WAAAY too much weight gain too fast. Mommy snuggle time is coming up at noon. Can't wait!

Updates for the non-Facebookers

I can't do this from my cell phone, well maybe I can, but it's easier to do it from the parents' room computer in the NICU.

I'm going to try to update the blog more regularly each day, so those of you who aren't on Facebook can keep up with Mr. Max. These Facebook updates will be short and sweet, but they'll keep you up to speed on the basics.

Here's the latest:

A little better day than yesterday for Max. Still yucky stuff coming out of his tummy, but xray looks better. We spent 3 hours snuggling and napping this morning. They've swaddled him for the first time, and turned off the "oven" in his isolette. He's starting to control his own body temp! Now we just hope the bowel heals and he won't need surgery.

Preschool Graduate!

I do have these other 2 children, who are amazing and exciting and NOT in the NICU. How sad is it that I haven't written about them in SOOOOO many days now?

I couldn't wait another day to blog about Ella. While we've been busy watching Max's every move, she's continued to grow up, right under our noses. I was shocked when I got home from the hospital after delivery and realized she only had a few weeks of preschool! Those last few days have come and gone, and Ella is now officially a soon-to-be-kindergartner.



We've been to two different kindergarten round-ups at her school in our neighborhood. She told me before the first session that she was "excited, but a little nervous." You know what, I was about the same. But we both survived it, and at the end, I had to nearly drag her away from her "new school."

Leaving our friends at Colonial Presbyterian Child Development Center is a whole other story! We have been so blessed by this preschool and the wonderful group of people we have become so close to.

Kimme and I found this preschool two years ago and thought it would be so great for our girls to go together. They have become just the best of friends, and it's amazing to see how much they've grown.

Along the way, they met the third musketeer, Maci. She's the perfect fit with Ella and Sophia. I can't imagine what life is going to be life next fall with all 3 of them in different schools!?

They celebrated the end of their pre-K year with a special program for all the parents. It was a wonderful and sad too. All the mommies cried, all the daddies snapped photos, and all the kids sang and received their diplomas and ate cookies. A perfect ending... and new beginning.

(When they presented Ella's diploma the director said she "loved playing with her friends the most and wanted to be a doctor when she grows up." Specifically, she tells us she wants to be a baby doctor. I wonder why??)


(photos are Ella and Sophia at their 3 year old meet the teacher day, Ella and Sophia post pre-K end of year celebration, and the 3 musketeers Ella, Sophia and Maci)

Mother's Day in the NICU

The NICU hired a photographer to take photos Mother's Day weekend. I was hesitant to take any with me in them, because I'm looking a little haggard these days. Plus, Max had the big CPAP mask. (which Ella calls his elephant snorkel)

But now that I have these, I could not be more thrilled. They are a precious reminder of how blessed I am to be a Mom!

TOGETHER at last!

Alex and Ella finally met their baby brother this past weekend. We waited 29 days until the stars aligned.. everyone was healthy. Max was having a good day. The hospital is allowing siblings in, as long as they scrub just like we do and we TRY to keep them from touching their noses, the floor, etc...

We only spent about 20-30 minutes in the room with Max, but the kids did really well! Alex brought him a teddy bear which plays "Twinkle, twinkle little star." (Alex's favorite song) Ella brought a "blankie tag" just like the one she's slept with since she was a baby. Max already loves them both, in fact, he sleeps with his new blankie every day.

Ella sat there, at the side of his isolette, whispering to him, "I love you so much baby brother." It broke my heart that they can't touch him yet.



Alex was fascinated with all the equipment and buttons and beeps. But he did want to leave Max at the hospital, since "he's still sick."








I wanted this to happen on Mother's Day, but Alex was still snotty. Regardless, it was the best day yet, having all 3 of my babies in the same place. We were finally a family!

Room with a View..

Max moved to a new room today... freaked me out when the NICU desk let me know this morning, because this is back on the furthest hall of the NICU, where he spent 2 days after his heart surgery. Turns out, it was just so they could close and refresh Daffodil Lane, where he spent these first 26 days. So now we're back on Cactus Circle... that just sounds scary!

The good news is, he has a corner room with windows, it's bigger, and he LOVES the sunshine! It was great to see him watching the brightness for the first time!

Max had a rough "spell" last night, where he stopped breathing, and his heart rate slowed. He recovered pretty quickly, with no CPR or drugs. That's a plus, but still scary for us. His doctor is not too concerned, because it has not happened that frequently.

He was also VERY pale today. Not the dusky, gray color he gets when he's not getting enough oxygen, but white. I mentioned it to the doctor and she agreed and told me that she was already planning another blood transfusion. He got the blood over a 3 hour period this afternoon/ evening and he's already looking better.

We're waiting for his latest blood gas, which should come before midnight tonight.

We did have another hour of quality mommy snuggle time today, and he stretched himself out and pushed his head back so he could look at me. He just laid there... gazing at me and then snoozing. LOVED IT!

Happy Mother's Day

The Gift

by Paul Dammann

God sent to me an Angel,it had a broken wing.

I bent my head and wondered"How could God do such a thing?"

When I asked the Father why he sent this child to me the

answer was forthcoming,He said, "Listen and you'll see.

My children are all precious, and none is like the rest.
Each one to me is special, and the least is the best.
I send each one from Heaven and I place it in the care
of those who know my mercy, those with love to spare.

Sometimes I take them back again. Sometimes I let them stay.

No matter what may happen I am never far away.

So if you find an angel and you don't know what to do,

remember, I am with you , love is all I ask of you."

--- this came from my friend Jamie, who spent 6 months in the NICU with her twins. This Mother's Day, I am grateful for Ella who made me a mom, Alex who made motherhood an adventure and Max who reminds me everyday of what a precious gift being a Mommy really is. Next year, I hope to have all 3 of my babies together for a picture.

Off the Vent...

Yesterday was a huge day, but also a huge struggle. I arrived at the hospital just in time for morning rounds and the doctor was ready to extubate Max! (take the ventilator tube out of his throat) She had mentioned doing it in the next 48 hours, but this quickly was unexpected.

(picture doctor took of his face just after they pulled off all the tape holding the ventilator, and before putting on his CPAP mask)

About an hour later, Max was wearing his new CPAP mask which still forces air in constantly to keep his lungs open, but he was breathing on his own. He did this all day. No apnea episodes. He never forgot to breathe once, but it was a struggle.

His lungs have fluid and congestion from the ventilator and because they're premature, so they don't inflate as large as they should, and he's just not getting enough oxygen to his body. He is not the pretty pink he was last week, he is pale and gray and struggling to get the oxygen his body needs. He worked his little butt off all day, he had bad blood gas after bad blood gas (the measure of oxygen saturation in his extremities) and they still kept trying to keep him on the CPAP and off the vent.

It's horrible to watch. He is struggling to breathe and never giving up, they are trying to give him every opportunity to succeed because being off the vent will help his lungs to heal, but in the meantime, he needs oxygen rich blood to heal his bowels and help him grow strong. He is only eating pedialyte in TINY amounts right now, and he's is burning off more calories than he takes in, just from struggling to get air.

I want him to succeed. To stay on the CPAP and keep breathing for himself. But there is nothing harder than watching him struggle and suffer while he's doing it. It pained me to leave him last night. I was there from 9:30-6 and then went back from 8-10:30. I just hate leaving him when he's battling this. I sat and held his little hand for 4 hours yesterday afternoon, helping him keep the binky in his mouth, because it helps with the air pressure and just comforting and encouraging him to keep going. It's the first day that I've really felt like he needed me, he wanted me by his side to help him, and I was doing the only thing I could to help him get through this day, which may have been his toughest yet.

He's a fighter, my Mighty Max, and he's making me stronger everyday. We did finally get a good blood gas this morning, so I hope maybe we'll see a turnaround today. Otherwise, they may have to put him back on the vent, and try again in a couple of days.

And on the 19th day...

(warning, get out the tissues!!!!! and stick around for the photo finish...)

Wednesdays have not been good for us in the last month...

3 weeks ago, Wednesday, April 14th, I was mailing our taxes when my water broke and our lives were forever changed. I called Troy, called the doctor, rushed to the hospital, and learned I would not leave until my baby was born. Max came to us 2 days later, 15 weeks early and only weighing 2 lbs and 2 ozs.

2 weeks ago, Wednesday, April 21, we woke up to a phone call from the neo-natologist that Max needed emergency surgery for a perforated bowel. We gave consent over the phone are were told to get to the hospital as fast as possible. We made it in time for me to rush upstairs and see him for a few seconds before surgery, while Troy handed over a dazed Ella and Alex to our friend Gavin who was waiting in the parking lot.

1 week ago, Wednesday, April 28, a deteriorating Max got worse at about 4 p.m. when the doctor told us his heart defect, a PDA, was getting larger and his blood pressure had dropped to a dangerous level. Two specialists recommended he have risky surgery to correct the problem, and they wanted to do this surgery in less than 2 hours.

Today is Wednesday, May 5. It's Alex's birthday. Cinco de Mayo. It's traditionally a good today for us... but I was fearful today, wondering what this next Wednesday would bring.

Max decided to prove everyone wrong today! I came back upstairs from a meeting to find Max on his stomach, up on all fours and apparently trying to crawl out of his crib. The nurse could see he was uncomfortable, and decided to turn him over to see what was wrong. It's then that his large, oozing diaper caught our attention! You see, Max can't eat, and his poop has been pouring out of two drains in his tummy for the past two weeks, while we gave his bowels time to heal. So poop, from the place where you generally expect to see poop come, is a HUGE DEAL! Not only did he poop, he wanted that diaper off. So I changed it and he grew agitated again, this time, FILLING another diaper with the black, gloopy stuff... like manna from heaven! Two big juicy, poopy diapers, from a boy with a drain in his belly is worthy of celebration! (I thought Daddy might crack open a cold one at work he was so excited!!!) But this day got better...

Our nurse stopped the doctor in the hall who came down to see me and celebrate as well. This is big news for Max, and step in the right direction, and hopefully, a sign that his body is healing itself. She was excited too, and she was thrilled to tell me that yes, today was the day to hold Max!!!

It took them almost half and hour to move all the wires and tubes and warm the room and blankets and get a team of 2 NICU nurses and 1 respiratory therapist to move my boy. But, when they lifted that tiny little man and tucked him inside my shirt, my heart stopped, just for a second and I cried. I've waited 19 days for this. Not as long as some moms, longer than others, but long enough, that I was beginning to wonder if he knew me. I wondered if he realized that Troy and I are his parents, that we're here for him, that we're doing everything we can to help him, that we love him so much. When you can barely touch him, or talk to him it's impossible to know if you have that bond you've shared with your other babies, and it's so hard to know if he knows how special he is to this family.

Today I knew and I think he knew. He opened his eyes, snuggled his cheek up against my chest, pulled my finger to his face and snuggled. And Mommy cried. But then, we talked, we napped together for almost an hour, and both of us, were finally at peace. I knew that I had my baby and that he was alive and fighting to survive. He knew that his Mommy was there. He smelled me, touched me, felt my warmth, heard my heartbeat, he didn't drop his oxygen levels or his heart rate, he just snuggled and slept, like a baby should.

My greatest fear has been that I would not hold him, not until he died. I couldn't stand the thought of holding my dead baby. Of not having him know that his Mommy was with him through all this. Today, I was able to let that fear go... maybe not completely, but at least for now. I feel exhausted and relieved. I know tomorrow may be another difficult, rough day, but today was my best day yet with Max. Full of moments that I will never forget.

As close as I can get... for now

Lifting Max into his new bed,





















or lifting him up while the nurses change his bed,
is the closest I've come to holding him.












It's not the same as snuggling him up on my chest or loving all over him... but I was able to kiss the top of his little head,










and I'll take what I can get for now.