Maximus is doing well, he is up, awake, and just getting along fine. Today they are trying to get him to use a bottle. He has to use a bottle, or we will have to keep the feeding tube in. And Michele is not looking forward to changing it herself. I guess to tell the truth, I am not ether. He has a partcally deflaited lung. So untill it is working proplerly he will have to stay. Every day seems to get a little brighter. So keep up the good work, and we will keep it up dated. I told Di she needs to write childrens books. What do you think?

The latest Photos

A mother gets to hold her child once more. :0) I guess that is the way it should be. Michele has a diffrent look to her face today. She has smiled, and only cries when it has had a chance to sink in how happy she is. Here are the latest photos of Maximus and his mom, and grand mom, and Me. :0)

Back in your arms again.....that's my theme for today!

I have been released from PTICU to moderate care, but they do not have any open beds, so I'll stay put for awhile (which is quite OK for my parents!).

The doctors removed my umbilical IV today and replaced it with a big boy one. They upped my breast milk intake - now if they could just put a french fry in there we would be good!

Mommy & Daddy can hold me again - it is a very happy day for me! Today is my original due date, and it's just like we are starting over with holding and feeding and cuddling.....Before you know it I will be big & strong and heading home!

Thursday 1:00pm - The nurses say I had a pretty good night. Mommy thinks I look great (and she is not biased)! My breathing is much less labored as long as I don't get mad, which I tend to do when I have a wet diaper or the nurses are bugging me. I keep trying to cry out loud and mommy says she can almost hear my voice (I lost my voice because of the respirator). She longs to hear it now, but someday soon she'll be wishing I would loose it again!

5:00pm I have been off the respirator since 12:30 and am holding my own. I had a little spell when I got really mad and the more mad I got the harder it was for me to breath. It was scary for Mommy, but I'm OK now. The Nurse gave me some drugs to help me sleep and keep me calm. Mom's going to wish she had some of those drugs once she gets me home! The Nurse said that my visitors can not rile me up again - so mom says Aunt Di isn't allowed to visit without supervision!

Wednesday Noon: The doctors removed my chest tube this morning and are currently taking me off the respirator! I had a really good day yesterday and a great night. Within a day or so I will be moved back to moderate care (so Mommy can hold me again!).

Last night my surgeon (Dr Ohye) was on TV13 news - he is advocating for a little girl (less than 1) who needs a heart transplant in the next few months or she will die. Since everyone was so nice to pray for me, I am requesting that we all say a little prayer for her and her family today. Thanks!

Good day

I've had a good day. The nurses say my stomach is digesting my Mommy's milk just fine (they take some back out and check it after they give it to me--yuck!) They also took me off the ventilator for one whole hour and I breathed on my own really well! Daddy and Grandpa were both here today and when they talked to me, I made sure to look at them so they could see how alert I am. I also like to look at the lights on all the machines that are near my bed. My medicines are being reduced and I may be off lots of things within a couple of days. As my pain medicine is reduced, I will be more and more awake and not get tired so easily. Mommy and Grammy are both really happy to see how strong I am.

Baby steps to recovery!

I had a good nights sleep last night! Because of the surgery (closing) yesterday, my hemoglobin is a little low so I'm getting some blood today. What was that Aunt Barb said about vampires?

More importantly I'm finally getting some milk from my mommy! They have to give it to me through a feeding tube, but she has done a good job of storing it in the freezer for me since my birth.

I'm a still a little sleepy today, but wake up for mommy. They are weaning me off the morphine so I will be more alert each day. They are also going to try and wean me off the respirator. I'm on my way now!

Nice and stable

I'm settling right in with my newly closed chest. I'm nice and stable and resting up to get better. My blood pressure and blood gasses are looking good, so Mommy is feeling much better. I'll probably spend 2 or 3 more days in the pediatric cardiac thoracic unit, then will be able to go back to moderate care. I can't wait till I get to start eating, and of course, once all these tubes and wires are out of me, Mommy and Daddy will be able to hold me again. Thanks to all of you who said prayers and sent good vibes today. I'm gonna rest up now, because tomorrow I plan on kicking butt in the getting better department.

Success!

Yay! Dr. Ohye was able to close Max's chest! There was a little trouble with his pressure dropping right afterwards, but they were able to get him stabilized. The doctor said tonight could be rough, but that we should start seeing marked improvement tomorrow. Yes! Thank you all for all your prayers. Keep your thoughts on Max as he gets through tonight. He can still use your prayers.

Quick update

I figured most people are waiting as anxiously as I am, so I wanted to let everyone know that another case came up that needed to be handled before Max, so his procedure hasn't happened yet. Grandpa promises to call as soon as he hears from Grammy, and I'll post as soon as I hear from him. Keep the prayers and positive thoughts flowing!

Trying again

Diane was at the hospital yesterday, so she may post later with more information, but I wanted to get the prayers going as soon as possible. Sometime around noon or so, Max's surgeon, Dr. Ohye, is going to try again to close Max's chest. The nurses say he is showing every sign of being ready, so let's hope the third time's a charm. Please keep Max, John, and Michele in your prayers today, especially early this afternoon. The sooner this incision can be closed, the sooner Max will be recovered and ready to come home. We love you, Max! Today will be the day!

Sunday

Hi everyone - I just wanted to share some new pictures mommy took yesterday and let you know how much I appreciate everyone reading my blog.

I know it is frustrating for mommy that they can't close my chest up yet. The doctors keep saying it's because my heart is swollen - my heart is big because it is so full of the love everyone is giving me. I think the real problem is because my chest is too small. Someday Mom will appreciate the fact that I have a big heart like her & daddy!

Yesterday I was awake for about 1/2 an hour which is more than I have been the last couple of days.

I will let you know how i'm doing later today - the doctors are working on one of my roomates right now so no one can visit at this time, not even mom & dad. I guess that is fair since their parents have to wait when I'm getting worked on :) Love you all - Max

Thinking about Maximus's Mom......

Good evening everyone. Today as you have all read was a very disapointing day. Michele is the strongest woman I have ever met. I guess that is why I married her. :) She is very worried, and tired. She keeps her head high while her heart is low. Like all Mom's, she just longs to hold her child and comfort him. Every day that goes by, she is loosing time to hold her baby. For those of you who have already raised your children, you know how un-replaceable one day can be. So in your prayers tonight, along with Max, remember your own children. When you see them again, don't wait, hold them and remember the day you could'nt.

John F Smith

Saturday afternoon

Darn it! I had troubles again and the doctors had to open me back up. Mommy is very discouraged, but I'm not giving up. The doctors will run some tests and then we'll see what Dr. Ohye says on Monday. This is very frustrating, because the doctors say I will start healing quicker once I am closed up. I appreciate everyone's prayers, and it looks like I will need them a little longer. Keep them coming, please!

Saturday morning

The doctors partially closed me up today to see how that goes. They didn't want to risk having my conduit get squished again, so they're taking it slower. Mommy says I'll be pretty sleepy the rest of the day. Mommy is really tired, too. I know she will get more rest when I'm feeling a little better. Daddy is coming to visit today. Mommy and I will be glad to see him.

Friday 1/23

The doctors are weaning me off some of my medications - they have removed the lasiks drip (IV) but I will still get that twice a day orally (a much lower dose). They have also cut my pain medication in half. They have removed my catheter so mommy is back on diaper duty!

Yesterday when they attempted to close my hole the conduit they installed got restricted. This is because there is still too much extra fluid in there. Looks like they will let me wait one more day before they try and close me up - the doctors will even work on the weekend to make sure it happens as soon as I'm ready.

I have to get rid of a little more fluid before they try again. I'll try real hard - so mommy better get ready to change some diapers :o)

Thursday 1/22 PM

Well, the doctors tried to close me up this evening, but there just isn't quite enough room in my little chest for everything to function correctly. I think they were squishing my lungs so my oxygen levels dropped a little. They decided I need to get some more fluid off and they will try again tomorrow. I'll work on that over night.

Once they close me up I should be able to move back to moderate care after a day or so. That would be good - because then mommy can hold me again. Grammy came down to stay with Mommy so Daddy could go home and check on my kitty. Jo Jo will be surprised when I come home!

Today's the day.

Hello everyone, today is the day Maximus should have his chest closed. His swelling is going down. So they should close. Here are the latest photo's. Not much is diffrent, except Maximus is moving more, and he opens his eyes from time to time. Michele and I are not supprised, but amazed at the out pouring of support we have had. Thank all of you, it means more than you can imagine. Michele has a hard time reading the blogg comments with out crying, to tell the truth, so do I.

John........

Hi everyone, here are the latest photo's of Maximus. He is still holding too much water for them to close his chest. If it goes down by tomarrow, they may close it then. Michele and I want to thank all the people for the prayers, I am sure they have helped. As you can see, he is very swollen. He is in good hands. We just have to wait. That is the hardest part of all of this.

Tuesday January 20

Today has been a good day for me - I'm getting stronger by the hour. I have been retaining water so I have swelled up. Mommy keeps calling me the Stay Puff Marshmallow Man. They have put me on a lasik drip to help take the swelling down (which the doctors say is normal for this type of surgery).

Once the swelling is down they will close my incision - hopefully tomorrow! They have also begun weaning me off the respirator.

I tend to get pretty excited when mommy & daddy come visit me, kicking and moving around. The doctors say I have to behave or they are afraid I will hurt myself or pull on something I shouldn't. They just don't understand that I'm excited to hear my parents' voices.

When I hear mommy, I show her my sucking face so she can see that I'm still practicing, even though they won't let me have my pacifier. I'll be ready to eat as soon as they let me.

Hard to believe I'm 5 days old already!

Tuesday Jan 20

Mommy called Grandma to tell her that I had a good night and am doing well. The doctors say that I'm doing well enough that they may be able to close up my chest as early as tomorrow!

I'm retaining a little fluid, so they put me back on lasiks.

I like it when mommy & daddy come back to visit me - I am letting them know that I hear them even though I'm still sedated. This should bring them some comfort.

The 44th President of the United States was sworn in today - President Obama - he's almost as important as me.

January 19, 9:45 p.m.

Michele called to say that Max was holding his own. The next few days will be crucial. Keep the prayers coming, please. They were having trouble regulating his blood pressure and his blood gases are not where they would like to see them. It is common to have many ups and downs in the few days after open heart surgery, and we are seeing that now. Max has constant care, with two nurses at his side 24 hours a day, carefully monitoring every function in his body and everything coming in or going out. He is still on a respirator and receiving nutrition just via IVs. Hang in there Maximus! We love you!

9:45pm Monday - The doctors say I'm stable, my blood gasses are acceptable but they still need to work on regulating my blood pressure. That is pretty normal for the first 24 hours after surgery.

Grandma, Grandpa, Aunt Barb & Aunt Di went home around 4pm because mom & dad (and I) need some rest - it has been a pretty tough day today! Mom & Dad went to the Ronald McDonald house for some sleep & dinner. They said that several different groups take turns bringing in food - like the UofM Fraternities & Sororities. They had quite a variety of food! They have to do chores as part of their stay at the house, today they cleaned the play room.

1:40 - the nurse just went and got daddy to bring him to see me - mommy is in the pump room - she's going to be bummed that she wasn't here, but the nurse went to tell her. it's important that she do that as well, so I have something good to eat when they finally let me.

Max's prayer (written by Renee Bush)

God – I just ask that you keep little Max in the palm of your hands right now. His heart is small and fragile – but your tender hands are LARGER then life & can handle it all. Guide the doctor’s hands and minds. May they be precise & in tune with what needs to be done. As little Max comes out of surgery may he feel the love of his family – and especially the love & healing you will bring. Give peace to mom & dad (and Aunt Diane J). May they all know you’ve got it under control. Thanks God!!! Amen.

11:55 Dr. Ohye just told Mommy & Daddy my surgery went great! Everything went as well as he hoped - no surprises. He was able to repair my aeortic valve so he only had to replace one valve (that's very good news). I'll be in recovery until about 1:30 and then mommy & daddy can come see me finally. That will make mommy feel much better & me too!

I will be in ICU for a week or two, then will be moved to moderate care for another couple weeks.

Thanks to everyone for all their prayers - I still have a rough week or so ahead of me, so keep the prayers coming, it's allways good to have a connection to the Big Guy!

almost done!

11:10am - the doctor is done with my surgery - I'm off the bypass machine and they are just finishing up and checking everything out one more time befor they close me. The surgery went much faster than mommy & daddy thought. Dr. Ohye will come talk to mom & dad when they are done closing me up. I'll let you know then how I'm doing :)

Surgery - 1st hour

The Doctor has closed the hole in my heart and is working on my artery now. the Nurse says I'm doing good.

Surgery Day

After all my fiestiness yesterday, I had a quiet night. I still had to be under the billi lights, though, with my superhero, Max-squared eye mask on and stretched out like I was getting a tan. I like it much better when I can be all swaddled up and am able to open my eyes to see Mommy and Daddy. I was so worn out that I slept right through my baptism this morning, though Deacon Wayne said he saw a little smile when he poured the water on my head. Dr. Ohye, the cardiologist who is doing the surgery, stopped in to see if we had any questions. He said someone will be updating Mommy and Daddy throughout the surgery, and he will see them after the surgery. I woke up and opened my eyes just before the orderlies took me down to surgery at 7:30 and the procedure started at 8:30. I'm going to rest now so I can focus on getting through this surgery. I'll need all my strength.

Sunday January 18

Uncle Jerry & Aunt Marsha came to visit me today & wish me well for my surgery. Aunt Barb, Aunt Di, Grammy & Grandpa came down & spent the night in the hospital hotel. Mommy & Daddy finally got into the Ronald McDonald house, so they will spend the night there.

The doctors say my billirubin is a little elivated. I don't know who billy is, but Dad says he must be a relative of Uncle Scott's. They made me lay on a blanket of lights and put two bright lights on me. I did not like it at all. They put a mask on my eyes to keep the lights from bugging me, but the mask bugged me instead. I kept trying to take it off so I could see who was talking to me.

Mommy & Daddy said I look like Max the Masked Avenger. The mask even had my name on it (Max brand).

I am very restless today, I have been awake most of the day.

I have a good "fighting" name

MAXIMUS
Gender: Masculine
Usage: Ancient Roman
Roman family name which was derived from Latin maximus "greatest". Saint Maximus was a monk and theologian from Constantinople in the 7th century.

Max's heart

Max is taking the day off today to rest up for his surgery tomorrow, but I thought I'd try to share with you what the cardiologist explained to us about the heart defect Max has and how he will fix it. Think back to your high school or college biology or anatomy class and you may remember that your heart has two arteries where the blood leaves it. The pulmonary artery takes blood to the lungs so it can be oxygenated. The aorta takes oxygenated blood to the rest of the body. As fetuses, we all have one artery coming from our heart and it splits into two as our heart develops. In some cases, such as Max's, the artery doesn't split. There is also a large hole between the two chambers of the heart, but I guess that is a good thing if you have truncus (the short name for Max's heart defect). Anyway, instead of working the way it should, Max's unoxygenated and oxygenated blood are mixing together, with some going out to the body and some going to the lungs. He also has just one exiting valve, since he has just one exiting artery.

So, during the surgery Monday, the doctors will repair the hole between the heart chambers and give him a valve and a shunt that will take blood to the lungs. They'll use his existing artery and valve for his aorta, because that one needs to be the strongest. For the other valve and the shunt, they will use a donor valve and artery or a certain type of cow blood vessel that has a valve built in. Either one will not grow with Max, so he will need about three more surgeries to put in bigger valves and vessels as he grows. Although, researches are close to being able to grow body parts from peoples own cells, so Max may be able to eventually have his own valve and pulmonary artery grown and installed and that would grow with him. (If anyone is interested, I have a news clip about regenerative medicine that I can e-mail to you. Maybe someone who is more technological than I am could even figure out how to link it to this blog.)

After the surgery, Max will be pretty sick for a few days and will be kept heavily sedated. We should start seeing improvement by the end of the week and then he will get to start eating a little. So far he has just had an IV for nutrition, so we'll need to get that little stomach and intestines working by slowly easing him into food. Michele has been freezing her breast milk, so they will be able to feed him some of that, which will help him build up some immunity. He'll probably get tube feedings at first until he is strong enough to start sucking.

Hopefully I have remembered all of this correctly. There was a lot of information to take in. If anyone else notices any misinformation, please let me know.

Friday, January 16

Thanks to her school being canceled because of the -15 temperature, Aunt Barb finally got to meet me today. She picked me up soon after she got there, and her hands were so cold that I let out the loudest wail Daddy said he had heard from me so far. That was a rude awakening from my nap! Later, when she had warmed up a bit, I let her hold me again and this time I just slept. A person can get tired around here with all the doctors and interns and students and nurses always wanting to check you out and unwrapping your nice cozy blankets (I'm a little swaddled bundle in the middle of a big crib). The nurse said I also have to work a little harder to breath because of my heart, so that wears me out too.

I was visited today by some geneticists who want my blood. They say they want to run some tests to see if there might be any other problems that go along with my heart defect, but I think Mommy and Daddy better check to make sure they're not vampires. (Maybe Aunt Barb should stop reading those Twilight books--she's filling my head with thoughts of vampires!) They took all kinds of measurements. One of the doctors kept tickling my feet to try to get me to open my eyes, but I showed him! I just took an occasional peek when he wasn't looking.

My cardiologist who will do the surgery on Monday also came in and talked to Mommy and Daddy about the surgery that I will have on Monday morning. It sounds pretty complicated and the doctor said I will be pretty sick afterwards, but I could get to go home as soon as two weeks after the surgery if all goes well. Another cardiologist drew a picture of what my heart looks like now and how it is working. It's doing its job pretty well, considering that it isn't put together quite right. My blood oxygen levels have stayed pretty good all day (except for when Aunt Barb was holding my hand and knocked the monitor off its spot).

Mommy and Daddy couldn't get into the Ronald McDonald house yet, so Daddy went back home to get some clean clothes and feed the cat, and Mommy went to spend the night at Aunt Barb's house since it is a little closer to the hospital than home. (She also wanted to soak in the jacuzzi tub there because she is still feeling pretty sore from all that trouble with the placenta.) Both Mommy and Daddy have had very little sleep since the night I was born, so I hope they both sleep well tonight.

Aunt Barb said I am a pretty cute guy, with my fuzzy blond hair and little Renwick nose. She thought I looked tiny in this great big bed, but she hasn't been around a newborn in a long time, so she isn't used to how small they are. I'm really not that little. I am very easy going, too. As long as people let me sleep, I'm pretty content.

Thursday January 15

Just to prove how special I have UofM sent a whole group of people here to pick me up - I rode down in an ambulance. I was supposed to leave at 7:30am, but didn't end up leaving until much later. I got down to Ann Arbor around 1:30 - the doctors called Mommy & told her I made it safe & sound.

Mommy didn't get released from the hospital until around 3pm - so her & Daddy headed down then. They will spend tonight with me & meet with my doctors in the morning.

I was supposed to have surgery Friday, but the doctors said a baby that was more sick than me needed my spot - I don't mind. I will have surgery on Monday instead. This is probably better since Monday is Martin Luther King Day & he was almost as important as me!

Truncus Arteriosus

Truncus arteriosus is a complex malformation where only one artery arises from the heart and forms the aorta and pulmonary artery. Surgery for this condition usually is required early in life. It includes closing a large ventricular septal defect within the heart, detaching the pulmonary arteries from the large common artery, and connecting the pulmonary arteries to the right ventricle with a tube graft. Children with truncus arteriosus need lifelong follow-up.

Happy Birthday Max

Tuesday 1:30pm - Mommy had her weekly doctors visit today - Dr. Strike checked her and said nothing was happening. She talked to Daddy - who is in MN on business & told him no need to hurry home, there would be no baby today....I'm supposed to come January 30.

9:00pm - I overheard mommy talking to daddy and telling him he didn't need to worry - I was staying put for awhile. I have a little surprise for them both :)

Michele called Aunt Di around 1:15 am to ask if she could come over - she thought she might be in labor. It took her about 1/2 hour to make the trek from Saranac to Fenwick where she lives. By the time she got here Mommy was in full labor & contractions were on top of each other. We drove an hour to Grand Rapids Spectrum Hospital (Downtown). It was really cold out -8 according to Aunt Di's car.

As soon as Mommy got to Labor & Delivery her water broke - and she was fully dilated. They quickly moved her into a delivery room & I was born within 15 minutes (at 3:13 am - weighing 6.7 1/2 oz & 18" long). Aunt Di got to cut the cord. Aunt Di left in such a hurry, she forgot a camera!!

I got to spend some time with mommy - I tried to keep my eyes open to look at her, but had to blink a lot because the lights were too bright. I showed her how I could blow spit bubbles.

The doctors quickly assessed Me - I must be pretty important because I have my own team of doctors & nurses - 4 in all! I scored 8 & 8 on my Apgar, I think that's good enough to get me on the honor roll! My doctor asked mommy what my name was - she said daddy wants Maximus J & the doctor thought that was a good name for a tough guy - a very manly name!

Mommy was finally able to reach Daddy a little before 4am & gave him the news. At that point he was in Escanaba in Michigan's UP (where cell phone service stinks!). He had been up since 4am the previous morning and was just getting ready to stop at a hotel from some much needed sleep. Given the exciting news he decided to keep right on driving the additional 5-6 hours to get to us.

The doctors took me up to the NICU & started the process of cleaning up Mom & finishing the birthing process. Unfortunately, the umbilical cord separated from the placenta and they could not get the placenta out safely. A couple of doctors tried to get it out, but did not have any luck and it is an extremely painful process. I kicked it way up in a corner, so it was hard to get to!!

Because I came so quickly, they had not had time to start an I.V. on Mommy. In order to get the placenta out, they needed to give her some pain medicine, but three different nurses tried to start IV's and couldn't. Apparently Mom's not quite as tough as me.

The Doctor decided that Mommy was losing too much blood, so they decided they needed to do something quickly. They took her to surgery & performed a D&C to remove the placenta. The Anesthesiologist finally had to start the IV. By the time she got out of surgery & back to recovery it was about 7:00am.

They would not let Grandma, Grandpa or Aunt Di come see me or get any news on me without a parent. Since Daddy was en route, and Mommy was unconscious in recovery they were stuck wondering for awhile. Grandpa & Grandma were really anxious to see me!

While in recovery, some irregularities were discovered with Mom's heart (the doctor told her it appeared as if she were having a heart attack). I think she was just trying to make me feel better about my own heart! They had to wait for a heart specialist to review her reports and compare them to tests her doctor had run in previous months. It turned out to be an "old" issue and nothing to be concerned about at this point.

My heart doctor gave Mommy an update regarding my condition: It is definitely Truncus Arteriosus, which included a large VSD (hole in the heart). He felt that it was something that will require surgery at Mott's Children's Hospital in Ann Arbor (part of U of M). I will be transported there and have surgery within 7-10 days. This is what the doctors had been suspecting all along, so there were no surprises! The doctor said I won't be able to play competitive sports ever and will have lots of surgeries in my life.

Mommy was finally able to come see me around 10:00am - she had to be wheeled into the NICU in her hospital bed because she was too weak to get up. Grandma got to see me for the first time. Grandpa had to go home & let the computer repair guy in, so he missed me!

After a brief visit Mommy was taken to her room (#4421) for some rest. Daddy was able to get to the hospital around 11:00am & finally able to see us! At that point he was exhausted as were all of us, so Grandma & Aunt Di left. After a visit, Daddy went home for some much needed rest.

The weather today was extremely cold - when Aunt Di picked up Mommy to take her to the hospital her car said the windchill was -8! When they left the hospital the roads were terrible - it had been snowing a very fine snow all morning. They saw 20+ slide offs on I96 & 2 rollover accidents! needless to say it was a very slow nerve racking drive! I'm glad Daddy made it safely - he drove 16 hours to get home.

Aunt Sue, Brianna, Matt, Grandma, Grandpa & Aunt Di all visited later that night. They all couldn't wait to buy some little boy clothes for me! I even got a camping outfit for this years family camping! I was also visited by some of Mom's co-workers earlier in the day.

Aunt Di & Aunt Sue think I have really long fingers & will be a great musician some day - Matt said he would introduce me to the guitar - I do have a rock star name, Maximus J, so that will work!