Surgery and Unexpected Life Events! Day 167!

9 lbs 4 ozs


We are up 3 pounds since his discharge from the hospital, and we have definatley came a long way since his birth at 1 lb 6 oz.

Hello everyone! Have you missed this blog, I sure have. It feels really good to get back on here and talk about what is happening, one with Calen and two what is going on with the rest of our lives. Lets talk about some background information just in case there is some catching up needed. We we discharged on May 31, 2011 from the NICU, this was such a change from the prior 109 days, no more hospital to deal with. We got home and since that point things have went really good, infact I believe I can even say that it went better than we had planned for it to go. We had lots of practice though, the nurse at MIVH NICU were awesome and they made us feel very comfortable transitioning to the home environment. We took Calen home on 1/4 L of oxygen that he wears all the time as well as an apnea monitor which does go off from time to time but for the most part is rare and nothing that we much worry about anymore except the lugging it around part. We have finished the bulk of our out patient appointments that we have had to do, we will continue to followup with the pulminologist at Children's as he is the one who makes the changes on his lasix and his oxygen. So far we have made 1 change and that is changing his lasix 6 mg to 3 mg. We may get the chance to decrease more and ultimately be off the oxygen somewhere around the end of August.



One of the nurses starting to check all his vitals signs and asked us questions about his health history prior to surgery.



Calen giving us a little smile white he was waiting.



He was complaining the lights were to bright so I let him borrow my shades. That's what any good dad would do. 

The hernia issue has been around ever since he was in he hospital. He had a known left inguinal hernia that we knew that needed surgical repair, there was the possibility that he would have a right one but the surgery showed no problems on the right and nothing had to be done. So they did surgery today and it went easy and fast. They did the procedure completely laproscopic, they looked at both the right and the left, they made the repair to the left side hole and that was it, took them about an 1 and 10 minutes, he was under general anasteshia the entire time. He came out of the anasteshia without problem and was awake when they brought him to his room. They thought he was having a bit of pain, so they did give him some morphine before coming to us and he tolerated it well, made him a little pale looking, but he seemed to be comfortable. He sleep for a good 2 hours or so after the procedure, he drank some glucose water and some formula but not much.  They also did a circumsicion during the surgery as well. Since they knew he would have to surgery when we were in the hospital they never did it. At this point I am pretty sure that is causing him pretty much all his pain. Poor kid.



They were giving Calen some medications. H was getting Tylenol for fever/pain and Atropine to dry up the secretions in his mouth. He took the medications pretty well.



Getting ready to leave, momma holding his hand. The nurse on the right is a really nice guy, he talked to us about his food blog and food travels, very interesting.



So cute, they put this tiny little baby in a huge bed, he is like a little island in the ocean.



Off he goes, probably enjoying his view of ceiling tiles and lights on the way to the OR.

The night quickly progressed and Calen rested. We had to leave for a while so he had some time alone to get some quite in the room. We feed him again at 1:30 in the morning and then we all slept till around 7 am when the doctor came in and said he was discharged. They didn't actually let us leave though till around 10 am. So the all and all he did really well, no problems at all.



His cage, I mean crib.



Calen right after surgery. They had just given him the morphine, he was very pale and quite when he got back. They were really nice though, they didn't roll him in a bed or anything when they gave him to us, they just carried him, then Holly got to hold him. He was in like 6 warm blankets too, made me hot just standing there.



I was having a little 1:1 time with Calen. He was in a very good mood all through the day of surgery.



This was his iv site on his right foot, they started his IV after they had him to sleep.

On another note we were heading to the hospital in the morning for the surgery and Holly got a call that her Grandmother had became unresponsive and was being transported to the hospital by ambulance. It turned out to be a really bad situation, as there is a very poor prognosis at this point that she will have any recovery. She went into full cardiac and respiratory failure. They were able to get her heart beating again, but remains on a ventilator. They feel that she went a very long time without oxygen to her brain that she sustained significant, irreversable brain damage. They are continuing aggressive treatment at this time there is Decisions

  to be made still, only time and GOD will tell.

Appointment Updates Home Day 10! (118)

Well home life is getting much easier and everyone is settling in. Since day 1 Joey has been great with Calen. We have not had any problems with him being jealous or acting out negatively because of a new person being in the house. We believe Joey is just happy that we are home everyday now with him. Calen has had plenty of follow up appointments to attend and we have got through a majority of them. Two days after being out of the hospital we went to the pediatrician. They did a well baby check up and gave him some routine shots. He is healthy, no noted problems. Last known weight was taken yesterday and he is 6 pounds 8 ounces. 

We had a home health care visit the next day, we really didn't have any question for her though because we had already seen the pediatrician and she answered our questions, plus this lady was kinda wacky, she told us that we should not swaddle him, thought that was odd. 

Next thing we did was go see the surgeon and the audiologist. Surgery is scheduled for July 13 at Children's in Dayton. They will be doing surgery to repair the left inguinal hernia but prior to operating the surgeon will laproscopicly look at the right side as well to see if there is a hernia on the right side, he said that hernias were much more common on the right than the left and since he did have one on the left, there was a good chance that he had one on his right, it just wasn't showing, so he will check that out. The surgery is pretty simple and is normal one that they have and go home same day, but due to Calen's age and oxygen needs he has to stay for 23 hour observation, so we will be spending the night. As for the audiologist, it was great news and that he passed his hearing test on both ears. I held him though out the test and he was pretty well relaxed so it went quickly and smoothly. 

The next day we went back to Children's to see the Dietician to check up on his eating patterns. The Dietitian did a check of height, weight, head circumference, all those good things and said that he was doing great, that there was no real eating concerns at this point and as long as he is growing then we have nothing to worry about. We do have to keep him on Neosure though until at least the end of the year which is an expensive premie formula. 

We were supposed to be seeing a Pulmonologist in two weeks after discharge but there was no available appointments. We have to wait until July 8 to see one. They will be managing his oxygen and lasix therapy. So until we get around to seeing them Calen has to stay on oxygen and the meds. 

Speaking of medications, while we were at the pediatrician we asked about Calen having really bad acid reflux, she had no problem with treating it and he was started on Zantac, it is working like a charm already and he is able to lay flat in his bassinet now without lots of crying. Calen really is on a schedule and is pretty easy. We feed him every 3 hours and other than that he is a really quite kid and he loves being in his swing, that is where he sleeps the best at. 

I know you guys are probably ready for some pictures so I ill get them up, hopefully tomorrow, I am excited for Saturday, it will be the first day where Holly and I actually don't have to be anywhere, we can just stay at home and relax a little bit and we finished a surprise for Joey so he will have fun playing on his new Jungle Gym tomorrow. 

We are at Home! Day 1! (109)

6 pounds 4 ounces

Calen's weight at discharge wasn't to bad. It is actually surprising, I was expecting to take home a baby that was around 5 pounds but we got a whole extra pound out of him. Of course we were at the hospital an extended period of time and he packed on the weight really fast. 

So lets start by saying that we are very excited to have Calen home, this is for many reasons; 1. He is our son and we love him and he belongs at home with his family. 2. We no longer have to drive every single day to Miami Valley to see him, and this will play a huge role in freeing up a lot of time to tackle all the major projects that must occur around the house this summer. 3. We get to spend lot's more time with Joey, get him used to Calen, spend ampule time with him during these young years of his life. There is of course the difficulties that will be present with him home; we have to get up all through the night to ensure he is eating, we have to work with this apnea monitor and oxygen he is on. These are simple machines but the tubes and wires and all can really get in the way fast. 

Last night I stayed up with Calen till 1 am while Holly slept. After we attempted to eat at 1 am I got him all wrapped up an ready to sleep for the first time in the bassinet. I am going to need to elevate the head of his bed, something under the mattress in order to keep his head up a little so that he doesn't have a bunch of problems with acid reflux. Last night it seemed that he was experiencing some issues with it when I laid him down, he sleeps fine while he is in the swing or while being held. Holly ended up getting up with him at 4 and 7am. Then I got back up at 9 with him. Same thing though with his eating patterns being pretty wacky. 

Calen's oxygen setup. The concentrator run's 24/7. It is kinda noisy. We have it in the kitchen now because sitting in there his tubing will reach his room, the living room, and our bedroom, so we don't have to move it around. They supplied us with 80 hours worth of portable tanks, which should be plenty for a long while, well at least until next week when we get busy with appointments. 

This is the sleep apnea machine. We have to keep him on this machine 24 hours a day, which is really the worst part because we can't get rid of these wires. It simply just runs and has some blinking lights and then if his heart rate was to go high, low, or he is to stop breathing for 20 seconds there is a alarm that goes off that sounds like 10 fire alarms going off at one time, so that has happened 2 times since we have been home, not sure if there was actually a problem or if it was because of a false reading, it doesn't display any numbers so it is hard to know what it actually happening. This thing has long cords and is a pain cause you have to carry it around with Calen. 

Before we left the hospital yesterday we decided to make sure he got a bath. The funny thing about it was that Holly wanted him to have a bath because we are currently unsure of the where abouts of our baby tub. We think it is stored with a bouncy seat and a boppie, so I have to find those today, I think they are stored up the attic, hot days are my favorite time to be up there. 

Getting ready for his bath. 

Packets full of paper work that we got sent home with. Check out his chart, it got pretty thick which is an indicator that it is time for him to go home, so lucky he did, don't think much more paper is going to fit in that chart. 

This was probably the last good bottle that he has taken and it was right before we left the hospital. We have not changed anything on his feeding regimen but he is still not eating well here at home. We really think that it is because he is in a completely different environment now. He has to deal with the sounds of being in the house, of people, the tv, a 2 year old hovering over him. So he is off a bit but I think that we will be able to get him back on track here soon. He is eating a decent amount, it's just instead of eating every 3 hours, he is wanting to eat every hour, but only take like 10-20 ml so we are hopeful that we can work that out soon. 

All the machines at the hospital discharged and all there things unhooked, kinda of a sad and good feeling at the same time. So much growing and developing occurred right there in that room and as much as we are glad to be home we will definitely miss those who took care of Calen. 

All settled into his car seat ready to head for the car. The car seat swallows him up he is so tiny. 

His eye's wide open ready to head out.

Holly and our Nurse Stephanie gathering up all the supplies to walk him out of his room. 

Out the NICU doors.

In the elevator watching him do something cute. 

He is in the car ready to go. He was quite the entire drive. He slept I am sure the most of it. I forgot what it's like to have a child facing backward, you can't look back and see them which really stinks. 

Quick shot as we were leaving the hospital. Last time we should see that sign in a good long while.

Were home and this is the first time that Joey has ever for to see Calen. He did really well, he knew his name and was very nice to him. 

Joey was the first one to hold him once we were home. He enjoyed holding him. 

Joey giving Calen a kiss. 

Joey is doing a really good with Calen. He is not acting out because he is jealous or anything like that, he is acting pretty normal. He has been sitting in Calen's swing, he seems to think it is a comfortable seat to be in. He was trying to swing Calen in his swing last night ratherly hard so we had to stop that. He also likes to climb up in the chair with whoever is holding Calen and pull Calen's bottle out of his mouth, don't know why but that is something that he has done multiple times.

So this was pretty cool. They save this card of his foot prints when he was born and then on the day that he goes home. It is incredible how much he has grown since he was born. Very cool to see that.

We did a late night wrist band cutting ceremony. I think I would have actually preferred to have them removed at the hospital when they took off Calen's but they didn't. Thats ok though Holly and I had a nice ceremony with Susan at home. 

We have multiple appointments coming up for Calen. It will be a lot of visiting for a while in order to meet all of Calen's needs. We will be seeing our pediatrician in the morning, we have appointments with the surgeon, audiologist, and nutritionist next week. We have to see to see a lung doctor in July and in 4 months we have to go in for a comprehensive developmental exam. Calen did have to come home with some medicines, he came home on lasix every day and multi vitamin twice a day. 

So I am not sure if it is Calen or if it is the Dr. Brown bottles but he has so much gas, he passes tons of gas and after about 20 ml of breast milk he will burp like 3-4 times. I have never known anyone to burp that much . So it makes me wonder why he is doing it, cause if it is the Dr. Brown bottles causing it, I think that is impressive, that means poor babies using other bottles probably have very air filled bellies. 

Just to update you from today since I did not post this last night but had started it, Calen is improving on his bottle's. We are now taking 45-50 every 3 hours consistently. He is getting more comfortable in his environment. Hope I covered everything that is happening. We are home now, I plan to continue the blog all the way through his surgery and then I am not completely sure what I will be doing with it. 

BYE!

Geesh Lots to Talk About! Day 106!

6 pounds

Look at this boy he is 6 pounds. Thankfully his eating patterns are still allowing him to gain weight steadily so we know he is getting the nutrition that he needs to grow up. There has been a lot of talk and a lot of plans in order to get him out of the hospital and on his way home and that is definitely our goal. So feeding's have been a pivotal part of everything that is happening here. He failed on the Dr. Brown bottles and nipples, he moved from that to an evenflo system which was even worse, and then they put him on what they call volume feeders that are only available in the hospital, we cannot buy them, but he was so successful on them. He went from taking 20's to 30's to 60's in ml of volume, it was like day and night. They said that since he was tolerating those that the closest thing to them was playtex pro vent's so we went out and purchased a couple of those to test them. He took them today well, he took 55 ml and 45 ml while we were visiting with him. He has to be consistently successful on them for 48 hours before we can consider the bottle and nipple combination good enough for him to go home on. 

On Friday I felt like we were kinda running in place. I mean I know that Calen is close to coming home but nobody had actually came in and talked to us about a plan to get him there and what we needed to be prepared for when he does come home. We asked if we could talk to the doctor and he happily came in and talked to us for a while and gave us the whole layout of what to expect and the plan at this point, which was great it really cleared the air. We talked about a possible discharge date and what we will need at home. Once the holiday is over and people come back to work on Tuesday then we just need the seal of approval from Occupational Therapy that he is eating well. If the feeding is good then the other concern is whether or not he needs to have surgery before he comes home or if they are willing to wait a while. I am in support of surgery before home because I just want to go home and stay home. Ohh the surgery, he will need to have inguinal hernia surgery. He definitely has one and it is currently easily reducible and it may stay like that but there is no doubt that surgery will be needed because there is to much abdominal pressure on the hernia to let it heal it's self. The surgery will be done at Children's hospital, hopefully just in Dayton, maybe Cincinnati not really sure. Doctor asked us if we are comfortable with taking him on oxygen and sleep apnea monitors and medications and we said we were, we will try to get the oxygen company to our house this coming week in order to get the training on all the new equipment that we will need. This came to a surprise to me but you don't actually have to take your child home on oxygen or medications, they will keep them admitted until they come off of all those things if the parents so choose, I really couldn't believe that but some people do that.

 

Me and Calen doing our normal sleep sessions. 

We started to put Calen into baby swings. When we leave at night we have been putting him in the swing and turning on his music therapy. We hope that it helps him sleep good and relaxes him. It plays an even bigger role though in determining that he will be able to sit in a car seat. The position that they sit in the swing and the car seat are similar. He still needs to have the car seat test, which he will just need to be placed in his car seat for 1 hour and ensure that he does not have any vital sign trouble. Due to the fact car seats are not well designed for premies there can be an issue with there neck being out of line and restricting there airway. We think he should be fine because he is up to 6 pounds and he tolerates the swing well. We are hoping that maybe Sunday or Monday we can get the car seat test knocked out and then we are hopeful for a Wednesday discharge but it could be later than that , we definitely do not know for sure. They want us to come to medical rounds Sunday morning in order to possible get a definitive discharge day, we will be heading there for medical rounds in the morning, Grandma Dot Birthday party is tomorrow night. 

I thought I had so much more to talk about but that might be it. His eyes are fully matured now and we don't have to worry about seeing an ophthalmologist for another year. He has possible hearing issues in his left ear that we are going to follow up with out patient. All of Calen's medical records are being transfered to Dr. Horn our pediatrician, we will have to see him within one week of discharge from the hospital. It is going to be very busy for us once he comes home, at least for a while it will be. 

Holly and I are both healthy and well at this point. We are excited about the summer and ready for the weather to get nice again. We have been using every nice day outside and we have been able to keep the lawn work up and we have even got our garden fully planted. 

Night everybody. Hope everyone is doing well!!!!!

Tubes and Car Seats! Day 103!

5 pounds 13 ounces

Well I think they are saying that Calen is just been here at the hospital far to long so they are crash coursing him now in order to get him out of here or at least know for sure what they have to do so they can get him ready for home. They decided yesterday that they would go ahead and remove his NG tube. It is official out and he just eats when and how much he wants and we just need to continue to monitor it and ensure that he is gaining weight by doing this. He is still not taking 100% of the volume but he is at least still at the 85% mark so he is not have any regression at this point. Holly is getting ready to feed him now, so hopefully she will be able to get a full bottle down him. 

They made the attempt today to take him completely off oxygen. It didn't get past 10 minutes though before he was desaturating a lot and they were forced to place him back on oxygen at his regular rate of 0.25L/min. We didn't know they were doing to do this, they just informed us that the had attempted him today. This is reassuring the need for oxygen at home, we are going to have to make plans for the Fidelity company to come and get his oxygen set up here in the next days. 

Help Me Grow! Day 101!

5 pounds 10.8 ounces

So I went back though the calender to count up all the days we have been in the hospital since the day Calen was born and I had to correct my day count in the subject line. Wow 101 days, crazy!

Calen is continuing to improve with his bottle feedings. There was a bit of a change on his bottle feeding, they changed him over to a evenflo bottle with a formula designed nipple. Holly has completely quit breast-feeding at this point. She wasn't even coming remotely close to making enough milk to supply for him and there was the improvement when she was on medication but once she took the medication she was so tired that she wasn't able to function. So bottle it is. He is drinking, he is showing improvement. They are making the recommendation tomorrow to remove Calen's NG tube. They feel that they could pull it, let him eat the amount's that he wants to eat and wait and see if he gains weight. Sounds like a awesome idea to me so we shall see what they decide to do. 

We went to a program tonight called Help Me Grow. It is a state wide program that runs via independent components in each county. They offer help to people that have children with needs get public assistance and seek all available programs and resources. It was an interesting program and we got free food and we spent about 45 minutes making scrap book pages for Calen's Help Me Grow album. The book they provide us with gives you a guide to how to keep track of all of Calen's important information so it will make it easier for us in the future when we are visiting doctors appointments and what not. 

The Drive Home!