Ryan's November 2007 Blog
November 1, 2007 - Ryan weighed in at 7 lbs 2 oz. Today was a big day as they switched him to low flow nasal cannula and he is doing well on it. This low flow nasal cannula is what he can go home on so technically one more thing checked off on the items he needs to accomplish before he can go home. So now we just have to get him feeding without a tube to get him home.
November 2, 2007 - When Mom called in at 5:30 a.m., Ryan was still doing great with the low flow nasal cannula and did not have any desats (where he tanks his oxygen levels). They bottle fed him over night and he took 20 ml - which is really good. So we are making progress. Hard to believe Ryan is 100 days old today. He's come a long way. The rest of Ryan's day has been pretty uneventful - eat, sleep and poop. Although Mom gave him a bath by herself and she felt that was quite an accomplishment. He did weigh in at 7 lbs 3 oz. The doctors are pleased that he is doing so well on the low flow nasal cannula (which they call Home O2).
November 4, 2007 - Ryan had a good weekend. He weighed in at 7 lbs 4 oz and 19 inches long. We are 1 week from his due date. He is starting to take more and more bottles (although only up to about 40 ml of 80) and he is definitely becoming much more curious and wants to look around more. Mom and Dad are getting anxious to bring him home! Hopefully by Thanksgiving.
November 5, 2007 - Ryan had a busy day - bath, eye exam and head ultrasound. He loved his bath. He has been taking bottles. No change in his eyes so that is good. The doctor said he'll probably stay where he is at (stage 2 zone 3 which is good) and then in about 10 weeks or so the ROP will go away. No results from the head ultrasound. In the last 24 hours he has taken a bottle at every feeding but 1. That's pretty good.
November 6, 2007 - Ryan failed his hearing test today. This is the 2nd one he failed. No one buys it. He will wake up and look at you when he hears you talk to him and he likes his music and the construction noises have bothered him from time to time. So now we are referred to Elks Audiology and when we take him home he'll have a more extensive test. They say that some babies that have been in the NICU for a long time will fail their test but pass the test at the Elks - let's hope that is the case. He has been pretty tired today - I would be too after his day yesterday - so we have not pushed him too hard on taking bottles. The ultrasound yesterday showed an increase in fluid in the left ventricle with the right ventricle pretty drained. His head is still pretty full so his body is not absorbing the fluid as fast as his left side is putting it out. We'll have to see if this means anything to the neurosurgeon.
November 7, 2007 - Ryan weighed in at 7 lbs 10 oz today. He had a pretty quite day - he slept a lot. He got to be held by his aunt Diane this evening, who was in town from Washington state.
November 8, 2007 - Ryan weighed in at 7 lbs 13 oz today. He took 59 ml (out of 84) at his 8 a.m. feeding and took 51 ml at the 4 p.m. feeding. His low flow nasal cannula had been at a quarter of a liter and today they adjusted him and when we left he was at 1/8 of a liter, which is good.
November 9, 2007 (New video added 11-13-07 @ 7 a.m.)- Ryan weighed in 19 grams shy of 8 lbs. He is still on low flow cannula and continuing to bottle feed although not up to a full bottle yet. He is up to 86 ml per feeding.
November 10, 2007 - Today was Ryan's due date. He will now be measured developmentally by this date than by his true birth date. Mom & Dad have sure enjoyed having him around but sure wish he wouldn't have come 15 1/2 weeks early. If he knew how much he would have to go through he might have stayed inside a bit longer. Since we're getting closer to Ryan coming home Mom and Dad went up to McCall for the night after Ryan's 8 a.m. feeding to have some time together. It was a nice relaxing day of laying around the condo and going to the Mill for dinner. Aunt Lindsey was on baby patrol. Ryan had a great day of hanging with Aunt Lindsey, sitting in his bouncy seat and laying on his tummy time surf board. His feeds are now up to 90 ml (3 oz) and his took 60 ml at one of his feedings today.
November 11, 2007 - Ryan weighed in at 8 lbs 1 oz today. Such a big boy! He took a full bottle with Aunt Lindsey at his noon feeding. Yeah! Mom & Dad are very excited! He took about 50 ml with Mom & Dad at his 4 p.m. feeding. He's getting the hang of it. We're hoping we are on a roll now...
November 12, 2007 - Ryan had quite a day - head ultrasound, CT scan and a bath. Mom met with the neurosurgeon at lunch and he said it is time to put in the long term shunts. The left side has an area where the walls have collapsed some so there is a new pocket building in the back of the ventricle and the right side has a bunch of webbing from the blood that it could cause problems. He said if Ryan isn't feeling the pressure yet he should be soon. So he had a CT scan in the afternoon to give the neurosurgeon more info for the surgery. Ryan will be getting shunts on both sides that will drain into his abdomen. Currently we are looking at Wednesday or Friday this week. We also got a surgical consult regarding his hernia. We were hoping to have all the surgeries done at once but for hernias they like the babies to be bigger so he is thinking 3 or 4 months from now. But now we are ready to get this one over with so we can focus on bringing him home in the next couple weeks. Mom gave Ryan a bath and he really wanted nothing to do with it because he was hungry. We got some cute pictures of him with no cords afterwards. He definitely loved being in Mom & Dad's arms this evening and let us know it when we put him back. It made it hard to leave but we finally got him settled down enough for us to slip out.
November 13, 2007 - While checking in early this morning the nurse told Dad that Ryan took another full bottle at the midnight feeding. Yeah! He didn't want anything to do with bottle feeding at the 8 p.m. or 4 a.m. feeding as he was tired but that is ok. Ryan took all by 7 ml for Mom at the noon feeding and took about 50 ml at the 8 a.m. and 4 p.m. feeding. We met with the neurosurgeon this evening and told him let's try to get the surgery knocked out tomorrow if possible. He called and booked an OR for 2 p.m. tomorrow. The CT scan didn't show him any new surprises so that is good. The neurosurgeon is going to leave the existing shunts in for now and will drain the pocket that makes Ryan look like a cone head. He will require 2 shunts (one on each side since the pathway between the left & right ventricle is still blocked) which will go in the back of his head with a tube that will go down and drain the spinal fluid into his abdomen. The surgery should take 2-3 hours and should take Ryan 1 to 2 days to recover. Ryan had an eye exam this afternoon. We missed the doctor but were told one eye is good and the other is questionable. We'll hear more on that I guess in the next week. Please pray for a successful surgery for Ryan so we can then focus on bringing him home in the next few weeks.
November 14, 2007 - They had to stop Ryan's feedings after his 8 a.m. feeding so by the time we took him down to surgery he was pissed off. He was one hungry dude. I don't think Mom or Dad have seen him so mad and it was definitely hard to see him like that and nothing would calm him down. Before he went down Mom held him for a couple hours and then Dad did. Surgery lasted over 4 hours but went really well and the neurosurgeon is pleased. He drained the pocket on Ryan's head so he no longer has a cone head. The neurosurgeon said the fluid was a yellow color - which means it was stagnant and his body was not reabsorbing it as it should have. They pulled the breathing tube out before he went up to the NICU and he had a few apnea spells but he got better. When we got in to the room he was pissed again due to coming out of anesthesia and hungry so they gave him some morphine, which unfortunately caused him to try to stop breathing and tanked his heart rate so they called a code blue and everyone came running in trying to get him back up. They decided he could not stay on nasal cannula but weren't sure if they should do CPAP or ventilator. They decided first to try CPAP to see if it would give him enough stimulation but then he tanked again so they said nope he is going on the ventilator. It took them about an hour to get the tube in because he was having some issues that were causing problems getting it in. Finally they got it in and got him settled down. He was sleeping peacefully when we left. They will keep him comfortable over night and we'll see how he is doing in the morning. If he is doing ok then they will try to put him back on the cannula and start his feeds back up. It has been a long day - Mom and Dad are wiped out.
November 15, 2007 - They were able to keep Ryan pretty quiet most of the night and not give any pain meds. While Mom was there this morning he kept getting mad and then was giving Mom the sad eyes that said make it all better. It was very tough for Mom to not make it all better. This afternoon he seemed a little better and when we left this evening he was weaned down on the ventilator and lying there looking around. He still has occasions where he gets mad but nothing like earlier today. They have had to keep him swaddled because otherwise he gets his hands up to his face and tries to pull out the breathing tube. Stinker. Feeds have not started back up yet - they are waiting for that poopy diaper first and they have decided not to take him off the ventilator until tomorrow. They wanted to give him a day of rest. The neurosurgeon stopped by first thing this morning and, other than seeing Ryan still on the ventilator, he is pleased. The pocket that makes Ryan look like a cone head has refilled, which the neurosurgeon said would happen, but it did so faster than Mom or Dad thought it would. He said as the other shunts get draining this pocket will go away. Ryan is definitely loved by the staff there - many stopped by to check in on him.
November 16, 2007 - Today has been another rough day for the little guy and Mom. They decided to put him back on nasal cannula today. This happened at 1 p.m. and after they got him set up they let Mom hold him. He did ok for a while and then all of a sudden he tanked his oxygen and heart rate. It was the lowest Mom has ever seen his numbers and she was pretty worried. Luckily one of the doctors was standing right there and we both were trying to get him to get his numbers up but it wasn't helping so basically another code blue happened like the other night where we had nurses, RTs and doctors coming in and they worked on him for a bit to get him back up. They decided to give him a large dose of caffeine to see if this would stimulate him enough to keep breathing. At first it seemed to help and they let Mom hold him again while they all sat there and watched. Sure enough his tanked his numbers again and again and again. Finally the doctor said enough - he is going back on the ventilator so they put the tube back in, got an x-ray, gave him some drugs and tried to get him to settle down. He was pretty pissed off being back on the vent and gave those sad eyes that just break Mom & Dad's heart. He was still having some spells and was keeping his heart rate consistently low that it had us concerned. About 4 hours later he was settled down and his numbers were better. The doctor thinks he is having these spells from the fluid shift in his head - that the brain isn't communicating that he needs to breath like it should and that it isn't really his lung disease doing it. The neurosurgeon came by and we talked to him about that theory and he wasn't sure it was that because there really wasn't a lot of fluid in Ryan's head to cause this many problems for this long but he didn't rule it out. The neurosurgeon is pleased with Ryan's head - just not pleased with the problems he is having. They are going to leave him on the ventilator for a couple more days and then try again to take him off. Hopefully tomorrow is not as rough of a day.
November 17, 2007 - Today has been a much better day. Ryan hasn't had any spells, has slept most of the day and got to start eating again today. They only started him at 45 ml (instead of 90 ml) and tomorrow they will add another 22 and then on Monday get him back up to 90. He'll be very happy about that. He has lost a bit of weight. He had been 8 lbs 2 oz and today he weighed in at 7 lbs 6 oz. His weight should hopefully go back up tomorrow now that the feeds are starting. They are talking of taking the tube out tomorrow or Monday. When we left this evening he was at 22% oxygen and his other vent settings were pretty low. They said if he happened to pull out his tube they would let him try cannula again but they hope that doesn't happen so they can give him the rest of the night resting.
November 18, 2007 - Ryan has had a pretty good day. He has been sleeping most of the day and got to be held by Mom for 2 hours this afternoon. Towards the end he started getting fussy and got mad when we put him back. The nurse said she thinks he was hungry because once she started his feed within an hour of us putting him back he was a happy boy again. The neurosurgeon stopped by this morning and for the most part is pleased but he wants the fluid on top of Ryan's head to flow the other way. He said it would take some time so hopefully that will start happening soon. Ryan is back to full feeds as of 8 p.m. so he will be much happier about that. They are not going to take the breathing tube out until after tomorrow. He has lab work, x-ray, and head ultrasound. They are wanting to wait until he has his next eye exam to see if he is going to need surgery for that so they don't take out the tube and then have to put it right back in. Hopefully the eye doctor will come tomorrow.
November 19, 2007 - Ryan has had a busy day. Lab work, ultrasound and eye exam. His numbers from the lab work are looking good. The doctor told us the ultrasound looked a little better but we'll still have to see what the neurosurgeon says. No surgery on his eyes. It sounds like there is one little spot in one eye that she could do surgery on and the other eye looks good so we'll continue to wait and see. So that means he got off the ventilator tonight! They put him on CPAP for a couple days to make sure we have success this time. It is a different CPAP set up than we've had before. He kept looking at it and kept making himself cross eyed. Silly boy. He was happy to get that tube out. He was going to town on his binky. Hopefully in the next day or two he can start taking bottles again. He weighed in 4 grams shy of 8 lbs 3 oz and they have increased his feeds to 93 ml.
November 20, 2007 - Ryan is 8 lbs 5 oz today! He has 5 days to gain 3 ounces and then he has quadrupled his weight since birth and he'll be 4 months old. When Mom got there at noon she noticed he was on nasal cannula - and it was low flow 1/2 liter. They gave him a trial of 3 hours (9 to noon) and if he did ok he could stay on it. He did ok and stayed on it. The doctor also wrote the order to let Ryan start bottle feeds again so Mom did his noon and 4 p.m. feed. He took almost half of his feed at each feeding. Mom noticed he seemed to have a better latch on the bottle this time than before surgery. The neurosurgeon stopped by during the noon feeding and told Mom he is pleased with how the ultrasound looked on Monday. The left ventricle drained nicely and while the right side isn't as drained as he expected he figured it could have something to do with the brain bleed leaving us a much bigger ventricle (stretched it out). He isn't worried and he pumped the shunt on the right side. Apparently there is a little lever on the shunt and he just uses his finger to pump it up and down. This helps flush out anything in the shunt (if there is a clog) so hopefully we can get the fluid draining down from his head to the abdomen. Ryan got visited this afternoon by both sets of great grandparents (both on Scott's side). It has been a couple months since both have got to see him. We're glad he was back to the point of prior surgery when they got to see him. One set got to hold him after his feeding - we'll have to get the other set back up here to hold soon.
November 21, 2007 - Ryan is 17 weeks old today! He had his shot for RSV today. He will get shots every 4 weeks until March. He was a little cranky this evening and was fighting going to sleep. When we just checked in on him this evening he was still awake. Hopefully he will falls asleep soon and sleep most of the night.
November 22, 2007 - Happy Thanksgiving! Mom & Dad are very thankful this year for Ryan, for the care he has received at the NICU and for the support we have received from friends, family, coworkers, and strangers. This has been the hardest thing either one of us has had to go through and we're so thankful that Ryan has put up a strong fight to stay alive. He is definitely the best thing that has happened to us. We look forward to having him home with us next year! Ryan had a nice quiet 1st Thanksgiving. He had breakfast with Aunt Lindsey and dinner with Mom & Dad. No turkey & stuffing this year for the little guy - instead he feasted on breast milk - yummy! He only took 27 ml with Lindsey (before falling asleep) and took 63 ml with Dad (out of 95 ml). He is definitely looking a little bit more coordinated with the suck, swallow, breath rhythm. Since they started bottle feeds back up he has taken about half or more of his feeds from the bottles. Hopefully this progress will continue - that is all we have left for him to go home. He looked pretty cute in the outfit Aunt Lindsey got him and his night nurse gave him a cute bib that matched his outfit. RT Linette was holding him when Mom & Dad got to his room so she had to hand him over but before we left, he was still awake, so she got to hold him again and got him to go to sleep. They definitely love him there. While we are anxious to get him home, we are definitely going to miss the staff. We have become friends with some wonderful people and will miss seeing them every day.
November 23, 2007 - Nurse Suzi bought Ryan a cute BSU outfit to wear today for the BSU vs. Hawaii game. When Mom called in this morning the nurse said he was bathed and in his BSU gear - ready to cheer on the Broncos. When Mom & Dad arrived he was wearing a Hawaii onesie. Nurse Suzi is a Hawaii alum and thought it would be funny to put Ryan in Hawaii gear. It was pretty funny... But then we got him in his BSU onesie and got some great pictures. Ryan has been doing really well taking his bottle - he has been averaging 80 out of 95 ml from the last few feedings and at 4 p.m. he took all of it. They have decided to change his schedule to be when he is hungry they will feed him instead of feeding him every 4 hours. He'll probably want to eat every 2 hours since he likes food. They have his nasal cannula down to 1/8 of a liter - meaning he is on very little oxygen support. We're finally seeing the light at the end of the tunnel. Maybe another week or two at the most until he comes home.
November 24, 2007 - I never thought I'd be able to write what I'm about to write - Ryan is coming home! Mom & Dad will be rooming in (where we stay in the NICU in a room that is like a hotel room for 24 hours with Ryan in the room with us and the nurses monitor him down the hall and check in on us) either Tuesday or Wednesday for about 24-48 hours and then he is coming home Thursday or Friday. He will be having the car seat test (where he sits in his car seat for about 1 1/2 hours to see if he has any problems) tomorrow or Monday plus head ultrasound, eye exam, normal lab work and an MRI Monday or Tuesday. As long as there are no issues with any of these tests and he continues to take his feeds from a bottle and gain weight he is coming home. Mom & Dad will have to refresh CPR skills, learn how to give him the 2 or 3 meds he is still on and learn how to work the oxygen machine he'll go home on before we are signed off. We cannot tell you how excited we are, how long we have waited for this day and how nervous we are! This has been one long journey and we are looking forward to a new journey beginning when we bring him home!
November 25, 2007 - Ryan is 4 months old today! He has figured out that now when he wants to eat the nurses let him eat and he knows he can eat as much as he wants. It is rather funny that when we were on a schedule he was eating 95 ml and now that he eats as much as he wants he has been taking between 100-130 ml (120 ml is 4 oz) per feeding and sometimes within 2 hours he wants to eat that much again. Such a piglet! He had his car seat study done today and he passed. Mom & Dad got a quick lesson on his oxygen tank but will be getting more Tuesday when Norco delivers us all his equipment. We will be rooming in Tuesday with the option to also room in Wednesday depending on how it goes. If we choose not to room in Wednesday then we will get a good nights sleep Wednesday night and bring the little guy home Thursday. If we room in Wednesday then we'll bring him home Friday. They advised us to go get one more night of sleep at home after rooming in and before he comes home as usually when you room in you don't get much sleep. This is going to be an exciting week!
November 28, 2007 - Mom & Dad roomed in from yesterday to today. They have rooms that look like hotel rooms but there are oxygen hook ups and monitors. So we wheeled Ryan in there and we spent about 24 hours in there together with a couple visits from the nurse but for the most of it it was just us as a family. At first we were nervous but once we got in there, everything fell into place and it was a wonderful experience. It was nice to lay on the bed with Ryan and watch TV. We felt good enough about our night that we decided we didn't need another one. Granted we hardly slept and didn't get much to eat but that is ok! We think Ryan enjoyed it as well as he just wanted us to hold him - which we did a lot! We met with the neurologist and he decided he doesn't need to see Ryan until the beginning of January and that he got enough information from the ultrasounds and CT scan that he doesn't need a MRI. Ryan had his eye exam yesterday and the doctor thought the one eye looked a little bit better so let's keep our fingers crossed that that continues. We met with the neurosurgeon last night and the ultrasound isn't looking so good. The left side looks good but the right side (which had more of the brain bleed) is not working as it should and the ventricle is bigger than before. He is worried the shunt could be clogged. We were told before this last surgery that there is a 50% chance that these shunts will fail in the first year - we just didn't think it would happen in the first 2 weeks. Our hearts sank at the thought of not taking him home in a couple days. He wants to try to tap the reservoir on the shunt and try to flush spinal fluid through the valve to see if that pushes out anything that is clogging it. If this does not work then he will have surgery again - pushing out our going home. The neurosurgeon came by about 2:30 p.m. today and did the procedure. He was pleased that he didn't get any particulate matter in the spinal fluid and that it seemed to flush well. There will be an ultrasound tomorrow to see if this worked (we should see a change within 24 hours) and then our next course of action will be determined. It is promising though that before we left this evening the pocket of fluid on top of his head was the smallest it has been so to Mom & Dad the procedure seems to be working but we will have to wait until tomorrow to get the final word from the neurosurgeon. Please say your prayers and cross your fingers - we're so close to getting our little guy home that another surgery could push us a couple more weeks out before he gets to come home.
November 29, 2007 - Ryan is coming home tomorrow! The ultrasound showed a decrease in fluid in the right ventricle - enough that the neurosurgeon thinks he can go home as long as Mom & Dad pump his shunt on the right side 3 times a day for the next couple weeks. He came by this evening and showed us a shunt kit so we could see what the actual shunt looks like and then we felt for the pieces on Ryan's head and learned how to pump it. This pumping will help loosen any particles that may be trying to clog it and help get the fluid moving. We will have an ultrasound and appointment with the neurosurgeon next Thursday to see how things go. We will be picking up Grandma Connie from the airport at 12:30 tomorrow and then head to the hospital for discharge. We cannot believe this day has finally arrived! We are so thankful to the St. Lukes NICU staff - without them Ryan nor Mom & Dad would have gotten through this. They have been really wonderful and we are going to miss seeing them everyday. Luckily they have a summer picnic and holiday party for all the NICU graduates (as we will now be called) so we will get to keep in touch with them. We would like to also thank all of our friends, family, coworkers and strangers for following along on our journey. It has been a long road and we appreciate the support you have given us. We will be continuing his blog with our new chapter that starts tomorrow. We may not be updating it every day but will try to post an update at least weekly.
November 30, 2007 - Ryan is now a NICU graduate and came home today! We picked up Grandma Connie from the airport and headed to the hospital. We went over paperwork and fed Ryan while some of the NICU staff came in to say goodbye. Of course Mom was in tears saying goodbye to all the folks that took such good care of Ryan. But then it was time to leave and he fell asleep as soon as we put him in the car seat and slept most of the way home. He did well this evening but we know it will take a week for him to adjust to his new surroundings.