Three weeks old

  We haven't been so great about posting because we have been so busy.  Milo has been doing well.  He is still on oxygen thru a cannula, but he has been weaned to the point where he is just about ready to have it removed.  He is still also on a bit of the narcotic painkiller.  He has had that weaned away slowly over the last week and he may lose that entirely today or tomorrow as well.  His lungs are looking better than they have since birth and his heart and aorta look great!  His chest tube was removed a couple of days ago, as well as his arterial and femoral lines.  We was also moved back to the NICU on Friday as he has shown "remarkable" recovery from his surgery.
   He still has a little ways to go, though.  He turns three weeks old today, and he only started to eat by mouth yesterday.  Since beginning to take food, he has gotten milk thru a feeding tube that goes through his nose and down to his stomach.  He has been tolerating the bottle well since last night, and started with a very small amount but has since increased his intake.  Also, there is a line still in his arm.  A day or so after the painkiller is off, he can get that out.  We are hopeful that we can get him home by his original due date, June 1.
   The rest of us are doing fine too.  Ryan went back to work for a few days, while Amber tries to spend lots of time with Milo.  Vivienne has been having fun with her grandparents.  The last couple of days, we have spent less time at the hospital and more with Viv so that she has had at least one parent around at all times for two days.  It is terrible to have to split your time between your two small children.  We are so ready for us all to be together and for this exhausting experience to be over.

Good Days Ahead

  So things have started to get a little more of a routine about them.  It is the best thing we could hope for up to this point.  The past couple of days we have woken up fairly early to get Vivie up and moving.  Then we head to the hospital to make rounds with the doctors and hear the plan of care for the day.  We get a little peaceful visiting time in before the droves of doctors, nurses and technicians all come in to the room to bother the poor little guy while he's resting.

  Yesterday, Milo's lungs showed some renewed fuzziness on the x-ray.  The doctors think it is mostly attributed to how sick he was and how premature he is.  Through some physical therapy applied by his nurse and respiratory therapist, he saw good improvement.  Milo also had two ultrasounds yesterday.  One was a cardiac followup (he looks great and everything is performing exceptionally well) with his friend John.  John is the pediatric specialist for echo cardiograms.  Milo has gotten to know his voice very well and seems almost soothed while John is working.  The other ultrasound was a new test.  The doctors wanted to look for fluid around Milo's kidneys that would help to explain some odd hormone numbers.  They found that everything was fine with this test as well.  He will have to have some follow up visits with an endocrinologist to follow some other hormone related issues that should work themselves out over time.  He is becoming more and more popular with the specialists at Rush. 

  We also finally introduced Vivie to her little brother!  It was such a special moment to see Vivienne's face as she first looked at Milo.  At first, she was a little concerned by the equipment that surrounded him, but she soon began looking at Milo and saying "Baby!  Milo!"  She wanted to hold the couple of toys that he had in his bed, but then gave them right back insisting that they were "Milo's".  We know that they will be great friends soon.


  A friend from high school who is a Child Life Specialist suggested that we get in touch with the specialists at Rush.  They were very helpful and informative about how we could best go about introducing Vivie to her brother in a place where she may feel frightened or worried..."doctor, ow!"  They also provided toys and books for Vivie to use while she was at the hospital. She actually ended up giving one of the toys that they gave to her to Milo.  She's such a good sister!  There is even a therapy bunny which comes to visit the children on the peds floor, but he was not available that day.  Vivienne can't wait to see Coco the Bunny on her next visit.

  Today was another milestone day.  Milo's lungs had improved from yesterday so they began to give him food through his feeding tube!  This was the first time he was actually able to eat anything more that a little milk on a swab stick.  They began with some pedialyte in the morning and let him rest for a few hours to make sure there wasn't a negative reaction with his digestive system processing for the first time.  After everything looked good, they put some milk in a syringe and began feeding him about 5ml an hour.  We were told by the surgeon that if he can eat for 24hours without any problems, he might get his chest tube removed!  Great news!  Something else taken away. 

  We have been able to hold Milo at least once a day now.  To say we are enjoying this would be a huge understatement.

Recovery

Milo has made his home in the PICU these days, and is doing very well.  Yesterday, there were many changes that happened, so I (Amber) stayed the night to make sure that he did well.  I was so concentrating on Milo, that I didn't get a chance to update the blog.  So here is the update from the last two days.

Yesterday, it was determined that Milo was doing extremely well.  So well, in fact, that they wanted to make some aggressive changes to his support.  He had been on a painkiller and a sedative basically for his entire life.  This was helpful to keep him from fighting the ventilators so that they could do the work of breathing, and he could rest and heal.  Well, the doctors wanted him to get off of the respirator quickly, so he was completely taken off of the sedative and put on a weaker one, and his painkiller dose was taken down to a third of what it had been.  Although it sounds like a good approach, the painkiller is a narcotic, so a quick decrease puts him at risk for developing withdrawal symptoms.  We were very concerned about this, so we watched him closely for any signs.  Luckily, he did and is doing just fine with that.

They determined that he was doing so well with the decreased medications that he would be off of the respirator by the end of the day.  Also, an aggressive approach, I thought.  They said that if he rejected the new form of ventilation, oxygen through his nose with a device called a CPAP, he would have to be re-intubated.  They took the tube out from his throat at 8pm, and we and the nurse watched to see if he could handle it.  Again, he did very well.  He was much more awake at this point from being on reduced sedatives, and he was very angry to have this thing on his head, but his oxygen levels were even better than when he was on the ventilator.  Since he had the tube in his throat for so long, he still has a silent cry.  You can see on his face that he's crying, but there is no sound.  It's so sad.

He also was doing great stabilizing his own blood pressure, so he was taken off of the blood pressure meds he was put on after the surgery.  They also gave him a diuretic to relieve some of the swelling from around his eyes.  I'm trying to remember if anything else was changed.  All in all, it was a dramatic change from just a day before.  I chose to stay the night, just in case.

I was woken up a few times in the night.  Once, he was so upset having the CPAP attached, that they put him on a bit more sedative to help him sleep.  The second time, he had a chest x-ray.  And the third time, around 6:30 am, he was still so upset by the CPAP, they decided to switch him to a cannula, one of the nose prong things that you get when in the hospital.  This made him much happier.  And when I looked at him this morning, he looked like a normal baby!  His eyes weren't swollen shut, and I got to look at his beautiful blue eyes.  They had taken out his IV in the night, and were able to swaddle around all of his other tubes and lines, so he just looked like a regular swaddled baby!  It was amazing.  He still was on a bit of sedative, but was awake and moving and perfect.

Today, it was determined that he should rest after all of the changes from yesterday.  He did get his foley out, so he was able to use a diaper, but I think that was the only major change.  Ryan came by in the early morning, and we just hung out with him for several hours.  We each got to hold him again (yay!), and I can't wait to get the other tubes and lines out so that I can cuddle him.

There are still some concerns about his lungs, white blood cell counts, and adrenal glands, but they will be watching him closely, and we should know more soon if any of those things are actually issues.  He should be able to eat his first meal (very, very little milk through a feeding tube into his stomach) in a couple of days.  And they said that in the best case scenario, we may be able to take him home in 10 days or so!

So, things are looking up.  We are still trying to juggle our time between Milo at the hospital and Vivienne, which is so difficult.  But I think that they are both doing just fine.  We are just counting the days until the four of us are at home together.

The Big Day!

   Amber and I got up and spent a little bit of the early morning with Vivienne and our visiting family. 
   We went into the hospital and sat by Milo's bedside for a number of hours prior to the surgery talking and spending some quality time with him.  The surgeon came to meet us for the first time at 12:30 with the same surgical nurse that had talked to us a number of times before.  He really only chatted with us briefly because when he asked if we had any questions, there were none.  His team had done a superb job of answering all of the questions and concerns that we had already had.  It was also a little awkward.  Here was the man whose skills, talents and hands were going to save my son's life.  How do you talk to someone in that circumstance?  What do you say?
   Milo was taken back at 1:30.  Amber and I joined her parents, Vivienne and my mom for some lunch in the cafeteria to try and relax a little.  We spent the remainder of the time waiting in various lounges for the phone call.
   Finally we received it!  He did great and was being moved to the Pediatric ICU and Amber and I should wait in their parents lounge.  We saw the surgeon again and were able to hear a little about how the procedure went; discuss long term issues (very minimal follow up chances); and have the opportunity to look him in the eye, shake his hand and say a heartfelt thank you.
   Amber and I are currently at Milo's bedside.  He has a lot of additional lines running to him but they should start to disappear over the next few days.  We are thankful to everyone for helping us through this emotional and stressful period of our lives.  Just knowing that even one thought was of him from someone outside of our immediate family has brought comfort and strength to ourselves and to him.  Now the healing, recovery and learning how to be a newborn begin.

Preparation

Yesterday was a very calm and quiet day.  We ended up getting a little bit of a later start to our hospital day in order to try and catch up on some missed sleep and spend some time with Vivie in the morning.  Milo was doing very well and stable following his cath procedure on Wednesday.  We were both able to hold him again and spend some time just resting by his bedside watching him sleep without having to look at the numbers on the machines or listening to a lot of little alarm bells and wondering which one is chirping at us and why.  It was so nice.

We spent the afternoon and evening at home spending time with Vivie.  Milo and Vivienne's other grandmother also arrived yesterday afternoon.  I (Ryan) was able to take her to the hospital last night so that she would be able to visit with Milo in the hospital.  When we arrived, he had his eyes open and was looking around at his surroundings!

Today is going to be a busy day.  He has his surgery at sometime just after noon.  The procedure is supposed to last about 3 1/2 to 4 hours.  Amber and I are going to be leaving for the hospital shortly and spend a little time with him beforehand.

I will update again later today.  

A Big Day

Today was a day of surprises.  When we got to the NICU in the morning in time to hear the doctors talk about Milo in rounds, we found out that they wanted to do Milo's cardiac catheter today.  Milo's lungs were doing so well, that he was deemed ready for surgery.  And if they did the catheter today, then they could do the aorta surgery on Friday and he could go home that much sooner.  We were told that the surgery would be around 11:30am, so we held Milo and talked with him for a while.  Around 11, they told us the surgery was moved to 2:30.  Because there was extra time, I (Amber) ran to the restroom.  When I got back, nurses were surrounding Milo saying that they were taking him to surgery!  We just had time to give Milo kisses, and they whisked him away to the operating room.

The procedure took about an hour and a half.  We got to see Milo as soon as he got back, and they said he had done really well.  He didn't lose much blood, and had good circulation.  And more good news:  They got the imaging that they needed!  It turns out that Milo's narrowing wasn't as long as they had suspected, and it should be a much easier fix.  We were very relieved to hear all of this.

We also got a tour of the Pediatric ICU, where Milo will be after the surgery.  It looks very nice, and Milo will have his own room, instead of sharing with the other kids.  We will miss the nurses of the NICU, as we have gotten to know a few of them quite well.  But they say the PICU nurses are just as nice.  Another good thing about the PICU is that Vivienne can visit her baby brother there!  I know that she can't wait.

We are starting to see a light at the end of the tunnel.  Tomorrow we will meet with the surgical team to get all of the information, Friday will be the surgery, and after that he will just need to recover and learn how to do normal baby things, like eat.  Hopefully soon he will be home and we can start adjusting back to normal.

Ups and Downs

   Amber and I went in a little later this morning.  We were able to get Vivienne up and moving before leaving for the hospital.  It was really nice to see her first thing and then head off Milo's temporary home.  We arrived at the hospital about 30 minutes before the doctors' rounds.  It was enough time to get settled in and visit with him before we received any new information. 

   Today was a great day for Milo's lung recovery.  His inflammation seems to be almost completely healed.  When we arrived he was barely getting support from the oscillating ventilator and the blood pressure medicine they were providing him had been weaned and the machine had been removed.  It was so relieving to see a piece of equipment missing from his little corner.  After rounds, the doctors decided to move him back to a conventional ventilator.  This is a huge step in his recovery and they are planning on spending the next couple of days weaning him down so that he is ready to be extubated following the surgery.

   We were visited by a large group of cardiologists and surgical nurses a couple of hours later.  They have determined that Milo has a unique coarctation that would require more imaging before surgery.  They believe that his narrowing is longer and further down the aorta than a usual coarctation.  On Thursday, he will have to undergo an additional procedure where they will take a cardiac catheter and insert it into his thigh.  They will snake a camera all the way up to his heart and see exactly what they are dealing with.  There is still a possibility that he will have the repair surgery on Friday.  We weren't anticipating him having to undergo two surgeries in a row and were pretty shaken up after hearing all of this.

  The greatest moment of the day was when Amber was finally able to hold Milo again after he was off of the oscillator.  It was a very special moment for all of us!  We just can't wait for all of this to be over so that we can take him home. 

  Thank you all again for your kind wishes and good thoughts for Milo!  We tell him everyday that many people are thinking of him and wishing him a speedy recovery.

One Week Old

Milo is one week old today!  It seems like it has been the fastest week and the slowest week at the same time.  He has had a pretty good day again!  He has been a little irritable today, mostly because he is getting accustomed to the sedative, and so he can react to more stimuli.  So any loud noise, bright light, or procedure makes him pretty upset.  It is so sad to see him cry!  It is a silent cry because of the tube down his throat, but it is so hard not to pick him up and comfort him.  We can hold his hands and feet and try to soothe him, and it usually works.  It's just hard for all of us.

But more about the good day!  He has been weaned throughout the day on his medication for the high blood pressure to his lungs, and has been reacting very well.  He may be completely off of the medication tomorrow.  His oxygen levels are nearly at room air still.  He is still on the oscillating ventilator, but he may be able to be moved to a conventional ventilator in the next couple of days.  He had an echocardiogram, and things are still looking good.  The doctors are very pleased with his progress, especially with his lungs.  They are hoping to do the heart surgery as soon as his lungs are ready, and are still saying this Friday or next Tuesday.  We are happy that he will have the surgery soon, but a little terrified too since it is such a big surgery on such a little guy.

We were able to visit first thing this morning when the doctors were doing their rounds.  We got to listen to the doctors all discuss him and make the plan for the day.  It was the first time being there for rounds, and we are hoping to get there for them more often.  Grandma and Grandpa Dewey visited Milo again too for a bit this afternoon.  We spent the afternoon napping (Amber is recovering well from her c-section, but is still exhausted) and taking Vivienne to run some errands.  It was nice to have an afternoon with just the three of us.

So, hopefully tomorrow will go as well and we will be able to report that he is off of more medication and maybe even off of the current ventilator!

One step closer

Milo had a fairly good day.  All of his medicine levels are about the same, except they are weaning him from a medicine that has been helping with his blood pressure to his lungs.  That means that he's starting to do well enough to manage his own blood pressure.  We are very happy about this!  They will continue weaning the next few days and see how he does.  It's one step closer to getting him off of the ventilator.  They are still talking about doing the surgery either on Friday or, more likely, next week.

The best part of the day was when I (Amber) got to change Milo's diaper.  I know that we parents take that for granted, and maybe even grumble about changing diapers sometimes, but it was such a special moment today.  It was the most interaction I've had with Milo in days.  I also got to wipe his face with gauze and water to clean him.  Again, another very special moment for me.  He was moving around a bit more today, and just looked a little healthier.  Every day I feed him a drop of milk on a Q-tip, and today he actually responded and sucked on the Q-tip for a second.  This all made it a wonderful Mother's Day for me.

We also got to spend some time with Vivienne today, and she was happy to have us around.  She has been such a brave girl with having us away so much visiting Milo.  We have been trying to go while she is napping so that we can spend as much time with her as we can.  She has a good time with Grandma and Grandpa, but I know that she is confused by all of this.  She will be so much happier when Milo is home, and things get to a new normal.

A Good Day

Milo has had a good day.  His blood gases have been good with lower carbon dioxide numbers.  He is only barely on extra oxygen; we breathe 21% from the air, and he is on 24%.  The pressure on his ventilator is down as well, and they hope to continue dropping the levels until they can remove his breathing tube.  This can take several days to wean him from it, and if he won't tolerate it, he may have to stay on it for longer.  The doctors hope that he can be off of it by early next week.

His heart is also responding well to the medications.  His heart is pumping more efficiently on its own, so they are slowly weaning him from that.  The coarctation of the aorta is still significant, but the blood is being diverted around it by keeping the duct open that normally closes after a few days of life.  They were able to bring down the medication that keeps the duct open, and that will help the medication (prostaglandins) from affecting other parts of the body.

Now it's just a waiting game to see when the lungs will heal.  It still seems to the doctors that he inhaled amniotic fluid causing swelling, and that the swelling is beginning to go away.  It's a slow process, so they may have to wait to do the surgery closer to Tuesday, May 22.  We're still hoping that he heals very quickly, can have the surgery on Friday, and can be home that much sooner.  The doctor said to expect him in the hospital a month to six weeks.

This has been the first really positive day with changes in the right direction.  Although we are both still so worried, it feels like today we can breathe a bit.

Milo also got visited by Grandma and Grandpa Dewey today!  Big sister Vivienne also came to the hospital, but is too young to meet her brother while he's there.  She did have a good time climbing on the chairs of the family area of the NICU while the four of us took turns visiting Milo though!

The Beginning

   On May 7th, Amber called me at work in the early afternoon and told me I needed to come home immediately.  When I arrived, we worked quickly to gather up the last minute items for the hospital bag and for Vivienne's drop off at our friends' house.  We then rushed to the hospital.
   Amber was admitted to the OB triage.  She and the baby were both monitored for a few hours.  She was already at 2cm and some contractions began and were getting stronger.  She was actually really close to being discharged when the baby's heart rate dropped for about a minute.  That bought her a ticket to an overnight stay.  There was discussion of a c-section at some point.  The contractions continued to get stronger and just as she was going to be moved to a room, they noticed she was further dialated.  At this point her doctor decided to do the c-section.
   Due to a placental abruption, Milo was delivered at 36 weeks of gestation on May 7th at 7:15pm.  He was whisked away to the NICU before we really got a chance to meet him.  At first they thought his lungs were just immature, but it's been a roller coaster since then.

   On May 8th, he wasn't getting better and began a course of antibiotics.  He also had to be intubated and put on a ventilator.  We were both able to hold him and Amber was even able to get some kangaroo care time in.  We thought that things would be over soon.

   On May 9th, things took a turn for the worse.  Things were not improving with his lungs and it was suspected that he had pneumonia.  They also found he was having circulatory problems.  He had lines put into the blood vessels in his belly button in lieu of his IV.  This meant we would no longer be able to hold him.  He also had a couple of echocardiograms to find out what was going on with his heart.  The results  were an enlarged right ventricle and high blood pressure issues in the pulmonary arteries.  We had a lot of information but no definitive cause.  It was a really scary and bad day.

  On May 10th, they did more echocardiograms and we got some more information about the circulatory problems.  It was found that he had a coarctation of the aorta.  It is a narrowing of the major artery supplying the body with blood.  They also discovered his aortic valve has two flaps instead of three.  This meant he would have to have surgery soon.  It explained a lot of his problems but not why his lungs were doing so badly.  Pneumonia was still suspected but was not explaining everything.  Last night he was put on an oscillating ventilator because the oxygen levels were getting worse.

   Today was a pretty good day.  Now they suspect that amniotic fluid was inhaled at birth causing inflammation in the lungs.  This is much less scary that an infection like pneumonia and should resolve itself within a week.  It was determined that the coarctation needed surgery next week and will probably be scheduled for Friday, May 18th.  His oxygen levels are improving slowly and he had the best blood gas measurement tonight!  It seems that the doctors are on the right track.  Every one of the doctors, nurses and technicians have been incredible!  They are both extremely knowledgeable and very caring.
   We are going to try to update this blog daily with his progress.  Any good thoughts sent his way are greatly appreciated.  We love our little Milo and can't wait to have him home with us and his big sister!

Ryan and Amber