Yesterday was Milo's official due date, June 1. We had hoped that he would be going home by this date. The due date is usually the time that a lot of NICU babies are hoping to go home, and we were told it was a good date to shoot for. However, it was not to be.
We found out on Thursday that Milo's aorta was becoming a problem again. We were told before the surgery that a small percentage of patients would have to have additional procedures after the initial surgery. He was looking fine for the first week, but in the second week his blood pressure was getting really high in his right arm and head, while the other pressures and pulses were getting lower. This showed that there was some new narrowing. The cardiologist said that sometimes when they repair the area, it becomes tight again from stretching the surrounding tissue to cover what had to be removed. So all this means at least one more procedure, and more time in the hospital.
The procedure is to put a balloon in the aorta to stretch out that area, hopefully permanently fixing the problem. If that doesn't work, there are more options, but it would require more surgery. They are hoping to do this in about four weeks, which will give the site of the previous surgery time to fully heal. And they think that Milo should spend those four weeks in the hospital. We actually agree with this, because if his blood pressure to his upper arm and head get too high, or the other pressures get too low, it would be an emergency situation. I think we would be panicked about this every second if he were to come home. With him on monitors at the hospital, they will be able to know the second that those pressures get out of line.
So, that was the bad news, but he has lots of good things going on too! Milo has all of his IV's, central lines, arterial lines, etc. out of him now. He is off of all painkillers and sedatives. He has started eating by bottle (reluctantly), and he can eat about half of every other meal by bottle before becoming too tired and having the rest be put through a tube to his stomach. He is still on a cannula to give him breathing support, but it is room air with just some extra pressure to help him out. We are able to hold him a lot, and can actually pick him up out of his bed now! All of the nurses and doctors love him, and he is totally adorable. It is so hard to leave him to go home every day when he looks so healthy.
We are happy because he was moved back to the PICU again last night, which means a private room and Vivienne can visit. Vivienne is constantly talking about Milo, and will point to different things in the house that she says are his. With our being away from her more than we would like these days, it just seems that Vivienne has grown and learned so much these last three weeks. She now knows her colors and knows a couple of letters by sight. Her favorite thing these days is to talk about animals and what sounds they make. It's amazing that this next week Vivienne will turn 21 months, and Milo will turn 1 month! Time is really flying!
All in all, we are doing well. Exhausted from stress and disappointed that Milo won't be coming home when we thought, but rejoicing in each step he takes towards becoming a healthy baby boy.
Saturday, June 2, 2012
Monday, May 28, 2012
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.
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.
Tuesday, May 22, 2012
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.
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.
Sunday, May 20, 2012
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.
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.
Friday, May 18, 2012
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.
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.
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.
Wednesday, May 16, 2012
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.
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.
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