Surgery for a broken heart

I can honestly say that yesterday was the scariest day of my life so far. This roller coaster with Max turn a HUGE dip.

It was our first morning since he was born to just stay home with Ella and Alex. No preschool, they were going to Laura's for the afternoon, it was supposed to be a slow, easy start to the day. The kids were crazy, we dropped them at Laura's a little early and thought we were getting a smoother than expected start at the hospital.

I had called to speak with Max's nurse earlier in the day and he indicated his x-ray was a little cloudy, but that's been developing over the last few days, so we were not initially concerned. I wanted to talk to the doctor, since this would be the first morning that we were not there in person for rounds, so we asked to see her when we arrived.

It was such a wonderful start to the afternoon. We had a new nurse, Larry, who let me be more hands on with Max that ever. I have not been able to hold him to my chest yet, and just snuggle, but Larry let me change his diaper and lift him up and hold him inside the isolette a couple of times, while he changed his bedding, etc... It was MARVELOUS! Troy was out making a call the first time and came back to find me crying. I was the closest I've come to holding my boy and I was just so happy to feel his heart beating in my hands. He is so tiny, I didn't know just how light he would be until I picked him up for the first time. I never wanted to put him down.

It wasn't long until he peed out of his diaper and I got to do it again. ( I did offer to let Troy have a turn) And the next thing we knew, a pediatric cardiologist was coming in to do another echo of Max's heart. She talked with us as soon as it was done, told us the PDA (hole in his heart) was "moderate to large" and she could see his heart enlarging. She said the neonatologist would talk to us shortly about treatment options for this.

We had already discussed this ourselves. We've known this leak in his heart, causing a murmur was also causing more problems. It's been there for more than a week, they tried to treat it with medicine, but had to stop after just one dose, when his perforated bowel became the primary concern. Turns out the drug that can help heal his heart can also harm the bowel which is trying to heal as well. Surgery was an option down the road, but they didn't want to attempt anything until his body was stronger and the bowel was healed, because of the risk of infection. He's been on an antibiotic since birth and even before he was born they put me on an antibiotic because of the anticipated infection in my womb. That's helped him, but would it be enough???

The doctor came in to tell us that the PDA (leak in his heart) was bigger than anticipated and getting worse. It was now causing more problems, fluid on his lungs, dangerously low blood pressure, and possibly poor circulation to his already ruptured bowel. She spoke with the pediatric cardiologist who said Max surgery and the pediatric surgeon, who said it needed to be done NOW. We had about 2 hours to sign forms, prep him, meet with the surgeon, anesthesia, and basically say good bye to our son.

I can't tell you how hard I cried when the doctor told us what we already knew. This risk was one we had to take. The surgery was a danger that we didn't even consider 2 days earlier. Now it was necessary, if we wanted Max to survive.

We trust these doctors. They care for Max and if it weren't for Dr. Schooley's diligence in getting another echo of his heart, we might have been too late to save Max. But that's little consolation when you're faced with the reality of what this all means. It's a common surgery, but it's dangerous and when it goes wrong, it's almost always "catastrophic."(according to the surgeon)

When we left Max, he was sedated, unable to move, couldn't even blink his eyes. He was naked, hooked to more wires than ever, and lying on his side in a isolette, all alone. It's the hardest thing I've even done. Saying goodbye to him, knowing how dangerous this all was, and knowing that I had yet to hold him, and the first time might be when he died. Troy and I were both emotionally spent.

It was about 2 hours later when the surgeon came out to tell us the procedure was complete. Max's hole was not "moderate to large" it was "HUGE." In fact, they use a staple to close it up. The surgeon has 3 different sizes that are used on babies, and for Max, he had to find a bigger clip, used for adults. This was going to kill him if the doctors hadn't made the decision to do surgery last night.

It was a rough night, his body learning how to maintain a new, higher blood pressure, his left lung re-inflating after the surgeons had pushed it aside to make way into his heart, and so much more. Troy and I stayed with him until after midnight. We came home to sleep for a few hours and were so relieved to hear good reports from the nurses over the phone.

We are told the 24-48 hours after surgery can be difficult, and we're prepared for the worst. But so far, Max has surprised us at every turn. We cannot believe how strong he is, how he fights everything that's thrown his way, how resilient his body is and how it just keeps coming back for another round. We' re scared of losing him and we are still a long way from anyone telling us he'll survive, but as long as Max keeps fighting, so will we. He has touched our heart already and we just can't imagine life without him. We can only hope this great challenge at the beginning of his life will make our boy stronger, and better prepared to take on the world!

Slow and steady...

We are in this marathon with Max for the duration. Some days, it feels like we'll never get to the finish line, but other days, while we're still panting and sweating along, we think we might be getting our second wind.

Today and yesterday have been good days for Mr. Max. He's grown, while he lost weight at birth, he is now back above his birth weight of 2 lbs. 2 ozs at 2 lbs. 3 ozs. He graduated to a bigger ventilator tube today which should help him to improve his lungs and switch to a breathing aid (called a CPAP) which doesn't have to go into his throat and will finally allow us to hear him cry.

He was able to have the final line removed from his umbilical artery which means he'll soon have a belly button like other babies' and it puts him one step closer to being held by Mommy and Daddy.

It's the day I'm waiting for, but also the day I fear. It almost happened today, we were so close and while I was excited, I was scared too. He is so tiny and fragile!!! What if he has trouble with the ventilator? (they say some babies can experience that when they're doing "kangaroo care" for the first time) what if I can't keep myself from crying? will that scare him? what if I get more attached to him than I already am? I've been holding my breath, waiting to hold him and hoping that the first time wouldn't be when he stopped breathing and we lost him. Now that it's closer to becoming a reality, I find myself even more afraid of what's next.

That's my fear for his brother and sister too. They may finally get to come into the NICU next week and see him, in person for the first time. It's been a burden and a blessing not having them there. So far, it's not been too real for them. They see the photos, but that's all he is, a photo, the baby they've been waiting for, but haven't met yet, so in their little minds, it's almost like he's not real. Once they see his room, see all the machines and tubes, see how tiny he really is, it won't be make believe anymore. I don't want them to be afraid, and I've debated whether it's right for them to see him just yet. But they do ask about him everyday and they ask to see him. I know they love him already and even though we are still at great risk of losing him, I want them to know that he's a part of our family and I want them to see how precious and special he is.

It's a slow and steady struggle that we continue to face everyday, but for now, we welcome it. I am so encouraged and hopeful as Max makes those slow and steady steps toward coming home to us. I'll wait every day that I have to just to get him here, in our house with his family.

One week old

Max is one week old today. He celebrated with a nice, peaceful day and we couldn't be happier! His eyes were fused shut when he was born, now they've both finally opened.

Since he is one week old, he had his brain scan today and they did confirm a small brain bleed. It's only a level one, which is the smallest and doesn't seem to be a problem so far.

They also gave him the tiniest little pacifier and he actually sucks on it and soothes himself, even with the ventilator in his mouth! I hope to get a picture of him with it soon.

Ella and Alex made him happy birthday cards last night, and we hung them in his room today.

Aunt Kristi arrived from TX today and she's already been such a help! Playing with the kids and shuttling back and forth to the hospital with me twice today. Max opened his eyes to take a look at her, so I'm sure he's glad to meet his aunt!

We're so grateful for every day. We can only hope tomorrow will be another of peace, love, growth and health for our itty bitty man.

Making it his home too...

Everyone keeps telling us to accept help where we can... and we've been overwhelmed with so many generous offers, I hardly know where to begin. Laura has been kind enough to organize everyone who wants to bring us meals, I have Mommy Mafia friends all chomping to help with play dates, childcare, etc....

So what was my first re-assignment of duties??? re-upholstering a chair for Max's room.

Sounds ridiculous, I know!But sitting there in his room last night which is actually still a guest/catch all room, I wanted to get it done. Pulling out the things that we've put aside for him, the bedding, the toys people have sent, hand-me downs, makes me hopeful. That he'll come home to us, that he'll make our home his home too, instead of the NICU. I need that hope and I need him to have his own special place. For now, it's my special place, to think about him, when we're here and know that he is already such a part of our family.

So, Tara and Merritt, good luck with that wing back! Thanks for agreeing to pick it up, find an upholsterer, pick out the fabric, etc... I know you'll make it beautiful for me! It may seem like a crazy project, but it's important to me and it will help make my baby's room his own special sanctuary.

Welcome baby Max!

Friends and family:

Most of you know by now, but we've had several who are just hearing, and our time is very limited, so we just decided it was easiest to put out a blanket note.




We welcomed baby Maddox James "Max" Robinson to the world last Friday morning at 8:27. He was 15 weeks early and weighs only 2 lbs and 2 ozs. Needless to say, this is all quite a shock for us and we're still just learning how completely upside down our lives have all been turned.

Max is doing as well as can be expected so far. He has endured two episodes where his heart and breathing stopped. Luckily both times he made a quick turnaround. He has a perforated bowel, a possible small brain bleed, a heart murmur, he is on a ventilator, and he's been battling an infection.

This will be a long road for Max and the doctors tell us it will be a roller coaster for all of us. He will be in the hospital for weeks, months to come. We don't expect him home until AT LEAST his due date, which was July 30.

In the meantime, we have to try to keep up with the daily duties of our lives as normal, as well as adding Max's needs and our desire to spend as much time as possible with him to our daily schedules.

Troy and I are overwhelmed, but coping and learning about new challenges and changes everyday. We want to spend every minute with Max that we can, in case his time is limited, but we also have responsibilities that we have to keep up with in the "real world."

The kids are still very unsure of all this. They cannot see Max and won't be allowed to until he's healthy enough to come home. That is very difficult for them to understand and it is very scary for them. They really want to bring their baby brother home.

We are so blessed by the thoughts, prayers, and the support so many of you have already offered us. We will forever be grateful and hope that someday you'll be able to meet Max, so he can thank you himself.

Many of you have asked how you can help:

- Laura Jones (913) 859-9681 is organizing meals for the family (so the kids don't eat McDonald's every night!)

- Childcare for Ella and Alex is an issue (We're paying for Alex to have care these first two weeks and friends are just helping pick up Ella) If you are available to keep them for a day, half day, or even just a play date, let us know! Or you can contribute to the childcare fund.

- We have hired someone to clean the house every week and disinfect.

- We are looking to hire someone to mow the lawn every week.

- We can't use cell phones in the NICU and the house phone only makes local calls, we could use phone cards to make calls from that house phone in the Parents Room, so we don't have to step out of the unit to call the grandparents who are long-distance.

Please don't feel you have to do ANY of this! But so many of you have asked how to help and these are just a few of the areas where we are already finding a need. Mostly, we ask that you please pray for all of us in the weeks and months to come.

Thank you again,
The Robinsons
(Troy, Jennifer, Ella, Alex and Max)

Happy Easter... sort of

It wasn't the best weekend, but we made the best of it and did enjoy our Easter at home.

Poor Ella started running a fever Saturday afternoon and it just keeps climbing! She's home from school today and will be again tomorrow. We're trying to keep it below 105 overnight, but it's been a challenge. Troy or I have to get up every 4-6 hours and get her something to eat and give her more medicine, or the fever just shoots up.

It's likely strep, since she has a very sore throat and her only other complaint is that occasionally, her tummy hurts. She's on antibiotic, so we're hoping for a quick recovery!




In the meantime, Gramma and Papa were in town for Easter weekend. We couldn't go anywhere with such an infected kid, but we did get out for an ice cream trip in the car, and the kids had their Easter egg hunt in back yard. All in all, it was a great holiday!



Ella was most excited by the Twinkle Toes shoes which she begged us for. (Gramma and Papa brought them as a surprise) But she hasn't been able to wear them anywhere yet, since she's mainly been in pj's. Hopefully I'll have photos to post if she goes back to school later this week.



Hope your Easter was joyous!




(photos are of the egg hunt, Alex with his two headed dragon and Ella with her bunnies from their Easter baskets and Alex post ice cream and pre clean-up! HE was disaster!!!)