Quick Update

Colton had surgery this morning for his tracheostomy and feeding tube. He also had a nissen fundoplication done. See more about that Here. He did very well during the surgery. The surgery was supposed to be done laproscopically, but when the surgeon went to try to move Colton's liver it didn't cooperate like it was supposed to so he had to make a bigger incision and open Colton's belly to do the surgery. The surgery went great from there on out. The entire surgery took about 2 hours to do. When Colton got back to his room he was very sleepy. They put him on a fentanyl drip to help control his pain. He pretty much slept the whole day until about 7 pm when he started to wake up a little bit and get his characteristic scrunched face and kicking his leg.

Now we are going to try to see if we can get Colton off of the ventilator or at least get him on the lowest settings that we can. In a couple of days we will start Colton back on feedings and hopefully get him off of his IV fluids. We are hoping that we can get him home in the next week or two. We have been working to get set up for home care and get all of his equipment in order. We are sure the first couple of weeks when he comes home are going to be full of adjustment and changes, but we can't wait to have our baby home.

Answers

The last week has been one of answers and even more questions. I have been waiting to write this post until Christmas was over and I know it's kept some of you waiting as well. This post is very hard for me to write and share. I am angry. I am sad. My son is going to die.

Last Tuesday night, Colton went for a repeat MRI on his brain to see if there was any progression of the HIE. Well, what they found was very different. Colton has been diagnosed with Lissencephaly. (Lissencephaly) Lissencephaly means "smooth brain." When we are formed in the womb, lots of things have to happen. Part of that is forming your brain. When it is formed, you end up with something called gyri. These are the folds of your brain that contain the neurons that allow you to learn and do everything that you do in daily life. Colton does not have enough gyri. This is what makes his brain smooth. Children with Lissencephaly have seizures, intellectual difficulties, feeding difficulties, growth retardation, hypotonia, difficulty swallowing and most children die by the age of 2. There are some genetic causes of Lissencephaly as well as possibly a virus or blood flow issue in the first trimester.

Also on the MRI, they found that Colton has some subdural hematomas. (Subdural Hematoma)These were not there on the first MRI. They happened in the two weeks between MRIs. The current thought is that these have happened because Colton's head is bigger than his brain. When this happens, the blood vessels can break and cause clots of blood between the skull and the brain. They are not currently bleeding and seem to be an incidental finding at this point.

With the last post, we thought that we would try Colton off the ventilator again. We did that on Wednesday (Christmas Eve). He failed. This time he only lasted 4 hours. He was quickly reintubated and he remains on the vent now. Colton can not tolerate not having extra support. When he doesn't have the breathing tube he has to focus solely on breathing and can't keep up with other things that he needs to do. He can not keep his temperature up and gets really, really cold. He can't digest his food and tends to throw it up. When the breathing tube gets put back in, these things get better.

Colton is tolerating his feedings very well. He is up to 60ml every 3 hours as of today. He still has his central line, although the TPN was stopped today. We stopped giving him suppositories to make him stool earlier this past week to see if he would go on his own. He is :). They have started giving him formula to supplement his feedings, as I am only getting about 1/2 of what he needs per feed of breast milk.

Friday, Nick and I made some very tough decisions. We decided that in order to get Colton home he would need to have a tracheostomy and a feeding tube placed. Since he is not tolerating being off the ventilator, he needs to have a more permanent airway placed so that he can be on it at home. Since he will need a tracheostomy for breathing, he is is also going to need a more permanent feeding tube placed. This will be placed into his stomach. He does not have enough strength to be able to breast feed or take bottles. These two things will hopefully be done this week. When these are done we should be able to take him home faster. Another decision that we made was to make Colton a DNR or Do Not Resuscitate. This means that if something were to happen to Colton and he would need help to survive we don't want that. He will not receive chest compressions or any medications to restart his heart. We do not want Colton to suffer needlessly.

I am angry. After everything that we have been through to try to have a baby, we got lucky and were able to conceive on our own. Now my miracle baby is going to be taken away from me. I want to know why this has happened. I want to know why he is being put through this. He is an innocent baby that never should have had to go through this. I want my son to be ok, to grow up and smile and walk and talk. He is so loved and was loved even before he was conceived. I leave you with a few pictures of my precious boy. The one is the first time he's had both of his eyes open at the same time.

Slow and Steady

So overall the last 4 days have been rather uneventful in Colton's world. That's a good thing.

Thursday Colton was put back on the NAVA and he has been tolerating it very well. They have decided to wean the NAVA very slowly, only changing one thing at a time. The goal is to wean him to a level that he can tolerate being off the breathing tube. Saturday night the breathing tube came out when they were trying to move Colton to a new position. He seemed to tolerate it well, but the tube was put back in. When the tube came out some of the settings on the ventilator were changed inadvertently and Colton tolerated those as well. When the error was discovered, the settings were changed back to the ones he should have been on and he tolerated those as well. His chest xray last night looked the best it's ever looked. I would venture to say that sometime this week we'll try him of the ventilator again.

Feedings are going much better. Colton started getting suppositories every 12 hours to make him stool to see if we could get things moving through. Well it has worked. His feedings were increased to 25 ml every 3 hours today. Right now hes getting breast milk, but I'm having a hard time keeping up with him. Pumping sucks, literally. I've been pumping every 3 hours including at night. It's been hard to keep up with sleep as well. It's one of the only things that I can do for Colton right now, so I'll suffer with no sleep for now.

We also got another test result back. The Smith-Lemli-Opitz came back negative. Yeah!! Another thing to check off the list.

We have been spending nights at home since last Tuesday. It's been a good thing to be at home and spend the days at the hospital with Colton. We have even spent time with Marley. He's such a good doggie.

We want to thank everyone who has thought about us and Colton over the past few weeks. We are very grateful for everything everyone has done for us.

Big Boy!

Tuesday December 16th: Today was an ok day. Colton's chest xray was a little better. The right upper lobe of his lung was starting to expand more. They continued the CPT (percussion therapy), but were able to wean the rate (mandatory breaths) on the ventilator some more. The discussion is to treat him like his lungs are small for his age and get him to grow some more lung tissue. This happens as he gets bigger and older. The plan is to go slowly on the ventilator wean to get Colton to a place where we think we can try him off the ventilator again.

His feedings were restarted at 5ml every 3 hours. Of course he wasn't too fond of this. He struggled throughout the night with a lot left in his tummy after being fed. Stubborn little boy :)

We did get another test result back today; the microarray (see this link Microarray). Colton has a piece of DNA missing on his 18th Chromosome. According to the geneticist, this means absolutely nothing for him and is not causing our current situation. Nick and I are going to have our microarray's drawn to see if this is something that we passed on to him or if the missing chunk is something that happened when Colton was being created.

The big thing for the day was getting out of the isolette and being put into a big boy bed and being dressed. My little man is getting bigger!

We decided to go home for the night for the first time since Colton was born. It was a much needed break. We slept for a good long time and it felt great. We missed our boy, but it was nice to spend time with Marley.  

Wednesday, December 17th: Today was a weird day for us. We didn't wake up at the hospital. Since we went home last night and stayed at home we slept in. And I mean slept in. I got up to pump in the middle of the night, but overall we slept in until 11 am. I know slackers!  We finally made it to the hospital by 2pm and did Colton's care at his 3 pm feeding. He is moving soooo much more. He really hates it when you play with his head or his belly.

They were able to wean his ventilator rate some more and are talking about putting him back on NAVA tomorrow through the breathing tube. He did well with that the last time he was on it so keep your fingers crossed.

Feedings have not been going well. He likes to save his food for later. He ended up getting a suppository to make him poop last night and he just got another one about 30 minutes ago. We are trying to feed him 7 ml, but we'll see how he does.

Tomorrow Colton is scheduled for a 24 hour EEG. This should tell us if his brain activity is getting better and if he is having seizures we don't know about. If you recall, his initial EEG was normal. This one will stay on until Friday morning.

We got another test result back today. If you read some of our posts from before we started our rounds of IVF, you'll know that I am a SMA (spinal muscular atrophy) carrier ( see link here SMA). A hallmark of this condition is not moving, so this was the first thing that Colton was tested for. His results came back today.... Colton does NOT have SMA!!!! He is however a carrier like his mommy. This means that he could pass it on to his kids if he marries another carrier; Something we will tell him about when he is much, much older.

Little by little we are weeding out conditions. We are hoping that we have the rest of the test results back soon, so we know what we are dealing with and how to better help our son.

One step forward... two steps back

Saturday December 13th. Colton had a good day. We were able to wean down the settings on the NAVA since his blood gases looked pretty good. He got another dose of lasix in preparation to extubate him (take out the breathing tube) on Sunday. He seemed to be tolerating his feedings pretty well, so we increased the amount that he was getting to 8 ml every 3 hours. He was still having some feeding left over, but not enough to bug him.

We went home for a couple of hours and got to see Marley ( our dog). A huge thank you to our neighbors for taking Marley into their home and treating him as one of theirs. We don't know what we would do without you guys!  When we came back up to the hospital, my parents brought us dinner and visited with Colton.

Sunday, December 14th started off as an exciting day. Colton's blood gases looked good and his chest xray was ok, so the decision was made to extubate him. He was kept on the same mode, NAVA, to help with his breathing, but now it was without the breathing tube and with a nasal cannula. It was so nice to be able to see his face without all of the tape on it. The breathing tube came out at 9:30 in the morning.

Initially, Colton did ok without having his breathing tube, but he was starting to work harder to breathe. He has a lot of secretions (spit) that he really doesn't know what to do with yet and they tend to pool in the back of his throat making it harder for him to breathe. They got a blood gas at 2pm and made some adjustments to his settings on the NAVA. We kept him sleeping on his belly since he breathes better that way (never, ever do that with a baby at home!). We had to continually suck the spit out of the back of his throat, but that didn't seem to be helping him toward the end of the day. At 6pm they did another blood gas. This gas was not good. Colton needed more support. A discussion was had about what we could try and we made a decision to try to increase his support on the NAVA, but Colton took that decision and said no way. He tried to cough up some of the secretions in his lungs and his feeding came with it. He was breathing harder and harder, when he did breathe. The decision was made to put back in his breathing tube. 

So the breathing tube was put back in around 7 pm . When the breathing tube is put in a chest xray is done to make sure it's in the right place. The chest xray showed that it was in the right place, but it also showed that the right upper lobe of his lung had collapsed again. The increased settings on the ventilator were done to help open his lung again. His blood gases throughout the night were not good and his settings were continually increased. 

Colton's feedings were left at 8ml every 3 hours and then we skipped a feeding when the breathing tube was put back in to give him a break. He really didn't tolerate his feedings for the rest of the night. He had too much left in his tummy at the next feeding. 

After he was working so hard to breathe, Colton didn't move too much. He was so worn out from trying to keep up. 

Monday, December 15th: This morning's blood gas was not good. Another chest xray was done which showed that the right upper lobe of his lung was still collapsed and not exchanging oxygen. The pressure setting on the ventilator was increased and he was placed on his left side to try to get some air to go into the right side. They also started something called CPT or chest physiotherapy. Basically, Colton gets vibrated every 6 hours to try to break up some of the secretions in his right lobe. Another chest xray was done this afternoon to see if that area had opened up. It was better, but not completely open. The ventilator settings continue to be on the higher end and Colton is not breathing over the ventilator. That's ok for now. He needs to rest and get better.

His feedings were stopped because he kept having higher and higher residuals (feeds left in his tummy) throughout the night and morning.

Colton got some laboratory studies done this morning. One of those was to check his hematocrit. The hematocrit shows the part of the blood that carries oxygen. His was on the low side so he got more blood today. To give the blood the nurses had to place another IV. He was a little stubborn with this one and it had to be placed in his scalp. It's just on the surface and does not go into his head. In fact they are some of the easiest IVs to start. The blood went in just fine and he will get another hematocrit check here shortly. The plan for the rest of the night is to let him sleep and chill out.

Please continue to pray for Colton and for us. He's got a long road ahead of him. We are staying at Colton's side as much as we can. Thank you for all the offers to do things for us, we truly appreciate it! 

Test Results... Well, some....

This post is very long, but you will be caught up at the end!!!

Tuesday December 9th started off with a bang.

As all the doctors arrived, we were greeted with the results of Colton's brain MRI from the night before. The news was not encouraging. The radiologists were reading Colton's MRI as HIE or hypoxic ischemic encephalopathy ( see this link for more information HIE). Please do not take the information on the link as gospel. I am just providing the link for more information. If you read the link, in my opinion Colton's symptoms fit the moderately severe category.  The doctors all think that Colton's injury occurred prior to his birth. They are not sure about the time frame though. As far as what this diagnosis means for the future remains to be seen.  Colton has been steadily able to increase movements and is less hypotonic (floppy) and is breathing more on his own. We have had some wonderful help in the the form of physical therapists and occupational therapists to help with his movements and stretching.

Since we received the diagnosis of HIE, an EEG was performed to see if Colton was having seizures that we didn't know about. This was done in the afternoon. The test needed to be read by a neurologist.   This is Colton being hooked up to the EEG machine.

A PICC line (a longer, more permanent IV) was attempted to be placed on Tuesday as well so we could get rid of the umbilical IVs, but Colton didn't cooperate and let the line thread to where it needed to be. Since we needed to be able to get the umbilical IVs out, we gave consent for a pediatric surgeon to place a similar line called a CVL (central venous line).

We were able to leave the hospital for a couple of hours while the EEG was being done and the PICC line was attempted. It was nice to be able to go home for a little bit, but we missed our boy too.

Wednesday, December 10th was a very busy day for Colton. Starting in the morning, Colton had visitors from physical therapy and occupational therapy. The physical therapist worked on his mobility in his feet and stretching. She also showed us some exercises that we could do with each of his feedings to get him more limber and stretched out. We had a special person come and teach us a special form of massage called lymphadema therapy. This was supposed to help with all of the swelling that Colton had. To do this requires a very light touch and circle motions to help move the fluid through little tiny vessels to where Colton's body can get rid of the fluid. It worked wonderfully. The swelling itself went down quite quickly (with the help of the the massage and some doses of lasix :) ).  We are doing this therapy once a day for now to see if we can keep the swelling down. So far it seems to be working.

Right after that was done, the occupational therapist came and made some soft splints for his hands. Colton's thumbs did not behave like they were supposed to. They stay on for 3 hours and then come off for 3 hours. We've noticed that when they are off his thumbs stay out quite a bit more.

Another big deal today was Colton's first bath!  He hated it!

We tried to switch the mode on his ventilator to something called NAVA to let him breathe more on his own and at his own pace. He loved it. However....

In the afternoon, the pediatric surgeon came and put in the CVL. Prior to the procedure, Colton was given a dose of fentanyl for pain. Oh boy! The one dose of fentanyl knocked him for a loop. Once he got the fentanyl he was no longer breathing on his own and he was letting the ventilator do all of the work. They had to switch the mode back on the ventilator to the one that breathed for him. He was in that mode for the night. He wasn't breathing over the ventilator.

Right after the CVL was done the neurologist Dr. K. came in to see Colton. She gave us results of the EEG... no seizures! She had a hard time seeing that he was being able to move now as the fentanyl made him very sleepy. She seemed to think that the HIE wasn't the culprit of his hypotonia. However she really wasn't able to give us an answer for the hypotonia. She did however suggest that we get a MRI of his spine to make sure everything was structurally ok. She suggested the same for his heart as well. Those were ordered for Thursday.

We were also able to start him back on feedings. He started getting just 3ml every 3 hours to see how he tolerated them. He had a few times when he had a lot left in his belly and they had to get rid of what was left and give him new milk.

Thursday, December 11th was another busy day. With his morning blood gas, they discovered that he wasn't getting enough support on the ventilator and that his right upper lobe of his lungs wasn't exchanging oxygen again. So the ventilator support went up and we watched his blood gases. In the afternoon he got another chest xray and the lobe had opened back up.

In the morning, Colton also got his ECHO (picture of his heart). We had to wait for the cardiologist (heart doctor) to read the pictures. That came back late in the evening.  Colton currently has a small ASD or atrial septal  defect. ( ASD )  Eventually this should close on its own. So, essentially nothing to worry about!  It's one of the first pieces of good news we got today!

We left around lunch time to go home and take showers and do some laundry. When we got back to the hospital Colton was down getting his 2nd MRI, this one was for his spine.  The results were back even before he came back from the test.  Normal!!!  2nd piece of good news!

Feedings were going a little bit better, but he was still having quite a bit left in his belly when it was checked before each feeding. The decision was made to just keep feeding him regardless of what was left unless he seemed to be having problems with digesting it. Well, it worked. Throughout the day he was able to digest more and more of his feeds.

Colton was also started on phototherapy today as well. His bilirubin was too high. This is a condition called jaundice. Most babies get jaundice. The phototherapy is a way to breakdown the bilirubin. He gets to pretend he is at the beach!

Friday, December 12th is a good day!  This morning his blood gas showed that he was getting way too much support on the ventilator. His settings were weaned pretty steadily over the morning and he was able to be switched back to NAVA in the afternoon. This too was weaned over the afternoon. He is breathing mostly on his own!

Feedings are going well enough that we were able to increase them this morning and he is up to 5 ml every 3 hours. Colton still had a few times when what was left was a lot but we are still feeding him. Part of the problem with his feeds was that he wasn't pooping. He was given a suppository to make him poop... and poop he did! Yes, we are excited about poop!

We both also were able to "kangaroo" with Colton today. Here is a link to Kangaroo Care. But here are pictures!

And now you are caught up!  We are forever grateful for the thoughts and prayers for Colton. 

Baby Steps

I am continuing Colton's story from Sunday.

Sunday December 7th: Sunday dawned a new day and we were still admitted to the hospital. I was doing ok. Not having too much pain and only really needing to take Ibuprofen to control it. We ate breakfast and headed up to the NICU.

Colton was still on the ventilator and still had his umbilical IV lines. The neonatologist came in and we discussed the plan for the day. We were going to try to start some feedings and see how well Colton would tolerate it. Well, he didn't. Throughout the day when they would check to see what was left in his tummy before his next feeding he would either have nothing left or he would have a lot more left than what they had given him. By Monday morning it was decided that we would just stop his feedings and try again later. In order to make sure that Colton would get enough nutrition he was started on total parenteral nutrition or TPN. It contains all the nutrients, protein, and fat that he needs to grow and gain weight.

Meanwhile, we were able to wean the settings on his ventilator. He was doing a lot more of the work on his own and wasn't needing so much help doing it. When they wean a setting on the ventilator they do a blood gas afterward to make sure that he was tolerating the turn down of the settings. He was doing pretty good.

We started to see some random movements with his fingers and toes. Both good signs.

Monday December 8th: Today was the day that I was being discharged from the hospital. By 7am I was up pumping and eating breakfast. The doctors came in and said I was ok to go home. We were up in the NICU by 8am to make sure that we were in Colton's room for morning rounds. The doctors and Nurse practitioners walk around the unit on Mondays and Thursdays. It's very odd to be on the other side of those rounds. Normally I am the one doing the talking during these rounds, now I have to sit and listen to them talk about my precious boy. Mondays also mean that the new team of doctors start for the week. We listened to the Doc and NP talk about Colton and what the plan was for the day.

Like I said earlier, Colton hadn't really been tolerating his feedings overnight and the morning belly xray didn't have an gas going through it. With both of those they decided to stop his feedings. His chest Xray showed an area in his right lung that wasn't allowing air exchange to happen well. They adjusted some of the settings on his ventilator to take care of that. They repeated a chest xray in the afternoon and that area was open and was allowing the air exchange.

Dr. B, the geneticist, called and asked what labs had been drawn and asked that the remainder of the labs be drawn. We then found out that some of the labs needed to be given prior authorization from the insurance company prior to being drawn. Colton's insurance had gotten messed up and we had to get that fixed to get the preauthorization done. Nick took care of all of that.

Over the course of the day it was decided that Colton needed to have an MRI of his head to see if there was a reason there that he wasn't moving. The MRI was done Monday night around 10:30pm.

We were discharged from the mother baby unit around 4:30 pm. We moved some of our stuff up to the NICU and then we decided to go home for a little bit and see Marley. We got some new clothes and took showers and headed back to the hospital. Overnight was pretty uneventful. Nick changed his first diaper of Colton's. We were continuing to see some improvement in Colton's movements throughout the day. He was starting to get more feisty when you messed with him. We got a big surprise in the afternoon: We both got to hold him!

I am trying to not overwhelm you and give too much information all at once. Please be patient with us as we try to get everyone caught up. The next post should be either tonight or tomorrow morning. We want to thank everyone for all the prayers and support. Everyone has been wonderful!