Ryan's October 2007 Blog
October 1, 2007 - Ryan has had a great day. He will hit 61 ml of food at the 2 a.m. feeding - which is his goal. He is now on a clear IV nutrient until he reaches his goal and then the IV food will be finished. Then they plan to pull out his PICC line Wednesday. The doctor's hope to have Mom try to breastfeed later this week. After a chest x-ray first thing tomorrow morning, he will be put on nasal cannula as long as all looks good and he is still acting good. He should be a happy camper (hopefully). His head ultrasound showed decreased fluid on the right side, no change in his PVL, and a decrease in the blood from the brain bleed - all good news. Mom got to hold him tonight and enjoyed it. Ryan did well and when he was put back to bed his oxygen was down to 28%. Unfortunately Dad is not feeling well so he was unable to see Ryan today. With so much good news today it wouldn't feel right to not have a little not so good news. The neurosurgeon stopped by and was not pleased with Ryan's head tonight the nurse said. He is worried that one of the shunts is clogged from the blood that is breaking down. This could potentially mean another surgery. We will need to get with him this week and see what his concerns are. Please pray for the blood to break down fast in all areas that are clogged so we don't have to have another surgery.
October 2, 2007 (no pictures) - Ryan didn't get the breathing tube taken out today. Apparently this morning his belly was looking a little distended and his x-ray showed air in his belly so they wanted to get that calmed down before taking the tube out. So they are holding feeds until tomorrow. As you can imagine he hasn't been too happy about it but when Mom saw him after work he would get mad and then calm right down and he didn't desat (which is a good thing). His oxygen was at 26% when Mom left this evening - hopefully it will stay there or get even better. Ryan had an eye exam and there is no change from last week. The goal is to get him back on feeds tomorrow morning and then pull the breathing tube out. Keep your fingers crossed!
October 3, 2007 - Ryan is off the ventilator!! They put him on CPAP this morning, restarted his feeds and put him in a crib. What a big day he had. He is doing well with everything today and Mom & Dad couldn't be happier! He weighed in at 5 lbs 6 oz too. Dad is finally feeling better so he finally got to see Ryan today. Listen closely when you watch the video as you get to hear the first cry we have heard him make - it is soooo cute!
October 4, 2007 - Ryan has had a great day. He is doing wonderful on CPAP with the occasional dip in his oxygen. He got a sponge bath today and then we put him in one of the outfits Mom bought. He loves the mobile on his bed - he loves to watch it. He also has started holding his binky in his mouth with his hands - it is so cute. We missed the neurosurgeon this evening but he seemed ok with Ryan's head so that is good. Dad held Ryan for about an hour and a half this evening and then Mom held him for an hour and he did great. Tomorrow they plan to remove the PICC line - then he will have no more IVs!
October 5, 2007 - Another great day for Ryan. The nurse removed his PICC line today so no more IVs! And his oxygen has been between 23-30% which is great! Mom held him during his noon feeding and then Aunt Lindsey held him for about a half hour. Dad held him during his evening feeding and he did great during all.
October 6, 2007 - It is really nice to not have a lot to write about. Ryan is doing great. Today we brought in the football outfit that nurse Suzi got Ryan and had him wear it. All the nurses had to come check him out and thought it was so cute. Ryan did well as long as he had his binky. He was like "Ok get it over with." After we were done torturing him and taking pictures, Mom held him for about an hour and they let Ryan do nasal cannula and he did great! Hopefully we will get to continue doing at least 1 hold a day on cannula. Then Grandma Pam held him for about 30 minutes. Tonight when we came back Dad held for about an hour and then Grandpa Eric held for about 30 minutes.
October 7, 2007 - Ryan is now a star! The nurses (Christy & Merri) loved the pictures we took yesterday so, with our permission, sent a copy of the photo to Boise State's press office and got the picture displayed on the video board at tonight's game. Mom didn't make it to the game tonight but Dad did and saw it. He was telling everyone around our seats that that was his son. All our season ticket neighbors can't wait to meet Ryan now. Ryan got a bath today and got to do nasal cannula again for his hold with Mom at lunch time. We had him try to suckle Mom's breast to start learning that he will need to do that to get food. He latched on and did really well for almost an hour while he got fed through his feeding tube. We're getting closer to breast feeding.
October 8, 2007 (no pictures) - Ryan has had a good day. He didn't last long on nasal cannula today (he gets to wear it once or twice a day for 2-3 hours) - he did great for a while and then had enough of it so we put him back on CPAP. He had another head ultrasound and it showed decreased fluids in the ventricles and no increase to the PVL - both what we want to hear. He had an eye exam and they diagnosed him with the retinopathy of prematurity (ROP) so now he will get eye exams every 3 to 4 days to make sure they catch anything quickly. ROP is when too much oxygen causes the blood vessels in the eye to grow too aggressively and they can cause the retina to pull off the eye and cause blindness. As long as the eye doctors stay on top of it, ROP can be corrected before it gets to the point of the retina being pulled off the eye. Please pray for Ryan eyes to slow down the blood vessel growth so he doesn't have a severe case of ROP.
October 9, 2007 (no pictures) - Ryan got moved to a room with a window early this evening. Where Ryan is at in his development it is time for him to learn day from night. It is nice to have some natural light. Ryan was on nasal cannula this afternoon for a few hours and did really well. The only dips he had in his oxygen were when he was unhappy - which turned out to be because he was filling his shorts. He was really alert for the 3 hours Mom was there and of course she loved it! He suckled again today and did great. Mom met up with the neurosurgeon this evening. His concern last week was for a couple of reasons. First he thought the pocket where the spinal fluid is draining had closed (not that the shunt was clogged as we had thought last week) but after doing an aggressive massage on Ryan's head it opened right up and he is now pleased with it. The second concern stemmed from last weeks ultrasound. The ventricle is shaped like a C and while Ryan's is draining with the shunt, the neurosurgeon was afraid that the middle of the C was being cut off (he was afraid the sides were trying to stick together) which would cause a new pocket which could build up with fluid, which would lead to more surgery. This weeks ultrasound put aside those fears at the moment but the neurosurgeon will continue to watch it. We will continue with weekly ultrasounds for now until we get to a point where we need to discuss long term needs.
October 10, 2007 (no pictures) - Ryan has had a good day. He is going to get his 2 month vaccinations this evening and he weighed in at 5 lbs 5 oz. Mom held him at lunch and he did great. Not much else to report today. Kind of nice having days like this...
October 11, 2007 (no pictures) - Ryan is doing well. The neurosurgeon stopped by this morning and is still pleased with Ryan's head. Monday will be another head ultrasound so we'll see if there are any changes in regards to his concern noted in Oct. 9th posting. He had another eye exam today and no changes from earlier in the week. We have about 2 more weeks until we're out of the "danger" zone but they will continue to follow him until he is 48 weeks. They will check him again early next week. Mom met with the developmental specialist this afternoon and she is rather pleased with Ryan's development with all the issues he has had. She was impressed with how well he did suckling, how he is doing the self soothing with his hands at his face and his feet together, how alert and curious he is, and how well he sucks on his pacifier. The one thing that we will need to work on is the roof of his mouth has a groove from the tube instead of being flat. They say this is common when babies have the tube in for a long period of time. They massage the roof of his mouth to try to get it to smooth out. It could cause problems with him breast or bottle feeding and could cause problems with his speech. When she massaged him yesterday she said he loved it. Mom & Dad will also help work on this with the specialists. She also recommended that we continue with the skin to skin holdings because it can really do a lot for him. We haven't done it in the last week but we will start back up doing that this evening. He did well on nasal cannula this afternoon and was giving Mom lots of smiles and was alert while she was there.
October 12, 2007 - Ryan has had a good day. When Mom arrived at lunch the developmental specialist was working with him and had lots of great things to say. Mom held Ryan during lunch as he did great as usual. Aunt Lindsey held Ryan in the afternoon and then Dad held. Ryan was sounding snotty so we had the resp tech suction his nose and she got lots of boogies. Then he had the sneezes and did not like them. The video shows him after the sneezes. He doesn't sound like a duck anymore but like a baby.
October 13, 2007 - Ryan had a good day. Mom did skin to skin with Ryan at lunch while he was on nasal cannula and Dad did skin to skin with nasal cannula in the evening. We think he was getting tired and warm during the hold with Dad so he put him back early. They increased his feeds to 64 ml per feeding and is doing well with that.
October 14, 2007 (New bath time video added 10/20/07 @ 9 a.m.)- Ryan had an eventful day. He got to sit in his bouncy seat and did well for about 2 hours. Mom & Dad didn't get to see but hopefully we will and get some pictures. We helped give Ryan a bath today and he did well. Mom held during his noon feeding and he suckled a little but ended up passing out like normal. Unfortunately though Mom scared him and he tanked his oxygen numbers so it took a little bit to get him up and settled down. Mom & Dad brought in a couple CDs today (apparently they played music for him the other night and he loved it) and he has been enjoying them. Ryan does have a hernia down by his testies which is common in little guys like him so we'll probably have surgery for that in the next few months. For now they will just watch it.
October 15, 2007 - Ryan has had a pretty good day other than tanking his numbers after Mom put him back in his crib after holding him. He had done this yesterday too. He definitely is letting us know he was not ready to be put back. While holding Mom tried to nurse a little and he did really well. Hopefully this will continue. He had a head ultrasound today but we have not got the results back yet. The physical therapist came by and did some range of motion exercises with Ryan and showed Mom & Dad what to do as well.
October 16, 2007 - Ryan is a little pooped today so he did not do well on nasal cannula this afternoon. He lasted about an hour (normally he lasts between 3 & 4). He had an eye exam and no change so that is good. We got the results of his head ultrasound and the main thing said was he is stable so it sounds like no increase to PVL, the ventricles are staying drained and the bleed is either breaking down or about the same. Now we just need to see the neurosurgeon to see if the item he is watching has changed. Ryan found his thumb after his eye exam and was sucking on it pretty good - it was pretty cute. Of course Mom was not fast enough to go get the camera. Oh well. The occupational therapist came by today and worked with Ryan again on range of motion. He weighed in at 5 lbs 11 oz. He is getting big fast! We have a care conference with the doctors on Thursday to see where we are at and hopefully see if they think we are still on target for bringing him home around the 10th of November or a little after.
October 17, 2007 - Ryan weighed in at 5 lbs 13 1/2 oz today. He had a much better day today than yesterday (he didn't get mad and tank his numbers when Mom put him back from his hold). The doctor talked to the neurosurgeon and he was pleased with the head ultrasound so that is good.
October 18, 2007 - Ryan gained a 1/2 ounce today so he is up to 5 lbs 14 oz and he is 17 1/2 inches long. The poor little guy has an awful snotty nose so they have to suction him and he hates it but they get a lot of snot out and of course he is happy about it afterwards when he can breath better. His nose impacted Mom holding him this afternoon as he had a hard time getting settled because he was so stuffed up that they finally did a deep suctioning on him and that really helped. We had our meeting with the doctor and heard basically what we expected - to be able to go home he needs to be on low oxygen flow nasal cannula and eating from his mouth. Ryan is still going back and forth between CPAP and nasal cannula because he gets so tired after being on cannula. He only gets nasal cannula 2 times a day. Today he lasted on it for about 5 hours - that is the most he has ever done. They are going to put an iron supplement into his feeding which will help with red blood cell creation which will help his respiratory problems. It will take 2 to 3 weeks to see the full effect of that. They are hoping with doing the iron there will not be a need to give him another blood transfusion. His hematocrit is right on the border of needing one but they need to get his little body to do it so hopefully the iron is what he needs to get that going. The neurosurgeon is hoping things will continue as they have been to hopefully buy some time to see if the blood breaks down before we talk about long term needs. The talk is still permanent shunts. And then we went over the need to continue to watch his eyes and how he will need hernia surgery as we get closer to going home. The developmental specialist spoke of how well he is doing and how she thinks he is remarkable where he is at right now, having gone to hell and back. She is very excited for him. As far as going home - the Nov. 10th date is now out the window. We are now shooting for Christmas. Hopefully we will see improvement in the next couple weeks with the iron and maybe, if Ryan plays nice, we will have him home in time for Christmas. But it is up to Ryan how fast this all happens - as has been this whole process.
October 19, 2007 - Ryan is 12 grams from 6 lbs so he should hit that tomorrow! They have started a new breathing treatment (it's a steriod) that will go along with his ibuteral treatment. Hopefully this will help. Dad held Ryan for almost 2 hours today. He was so cute holding his pacifier. When he was put back he was happy and relaxed - he didn't throw any fits. He lasted on nasal cannula for about 4 1/2 hours before they switched it off. We finally got the bath time video added to the October 14th photo page so go take a look!
October 20, 2007 - Nothing real exciting to report today. Ryan has had a good day. Mom & Dad each got to hold Ryan and he did really well. He seems to be responding to the steroid breathing treatment, which is good. He is 2 grams shy of 6 lbs so we'll just go ahead and say he is 6 lbs!
October 21, 2007 - Ryan weighed in at 6 lbs 2 oz today! At this rate by the 25th he may have tripled his weight since birth. Aunt Lindsey held Ryan today during his afternoon feeding and was awake for her.
October 22, 2007 - Ryan weighed in at 6 lbs 3 oz today. He is up to 72 ml (almost 2 1/2 oz) of breast milk plus a fortifier. Mom started trying to nurse at noon today. He did well for about 15 minutes and then lost interest. Mom tried again at the 4 p.m. feeding and he lasted about 10 minutes. We'll keep trying twice a day for now. Ryan had a head ultrasound today and the results show no change. Mom just missed the neurosurgeon this afternoon and from what the doctors could make of his handwriting there will be another head ultrasound next Monday and then he will probably decide about long term needs. Ryan definitely loved being held today (probably letting Mom and Dad know he missed us not holding him yesterday). Mom held during the noon feeding and majority of the 4 p.m. feeding and then Dad held the rest of the 4 p.m. feeding plus an extra hour. We hate putting Ryan back but he was sleeping so good he hardly noticed.
October 23, 2007 - Ryan weighed in at 6 lbs 4 1/2 oz. He is up to 76 ml of breast milk plus a fortifier. Ryan did really well nursing today and the physical therapist and doctor were very pleased with what they saw. He lasted on nasal cannula 8 hours today. He'll probably be tired tomorrow but we are very proud of him. He had an eye exam this evening and no change which is good. We had the doctor show us the head ultrasound from yesterday and it does look like the blood from the brain bleed is reducing nicely. Things looked better than the last time we saw the ultrasound.
October 24, 2007 (New video added 10/26/07 @ 9 p.m.)- Ryan weighed in at 6 lbs 8 oz this morning! He has more than tripled his weight! He is up to 78 ml of breast milk plus a fortifier. He did so well on the cannula yesterday that they decided that they will try him at 8 hours a day. Today he lasted the whole time and did great. He got a bath today and then sat in his bouncy seat for 2 hours. It is hard to believe he is 13 weeks today and tomorrow is his 3 month birthday.
October 25, 2007 - Ryan is 3 months old today! Hard to believe. He continues to do great - eating, sleeping and pooping. He did really well nursing (for about 40 minutes) during the noon feeding but at the 4 p.m. feeding by the time Mom had him in her arms he was passed out and would not wake up for anything.
October 26, 2007 - Ryan weighed in at 6 lbs 11 oz. He is up to 80 ml per feeding (10 ml shy of 3 oz per feeding). The doctors are happy with how he is doing on the cannula so they have increased the time on it to 12 hours. He did well nursing with Mom today at noon and 4 p.m. and then he got to hang with Dad. Aunt Lindsey hung out with him this morning. Ryan sat in his bouncy seat for about 2 1/2 hours and enjoyed it! If you have noticed the "goose egg" on Ryan's head - that is actually the pocket that the shunts are draining the spinal fluid to. The shunts are definitely working! New video added to the 24th.
October 27, 2007 - Ryan weighed in at 6 lbs 13 oz. His feedings are still what they were yesterday. Mom & Dad gave him a bath today and he did really well. They are going to try Ryan on cannula for 24 hours today. We'll see how it goes. So far he has been on it for almost 10 hours as this is written. We had a little "code brown" this evening. Dad had put Ryan back in bed after holding because he needed to have his nose suctioned. Then he was having explosive sounds from his diaper so after a little bit we thought it would be safe to change him. Wrong. As we were trying to clean off his rear end he projectile pooped and nailed the mobile attached at the end of his bed as well as a lot of the bedding. He just missed nailing Mom and his stuffed puppy. We were laughing pretty good. Ryan, on the other hand, didn't think it was that funny and was pretty mad. He did calm down after he was changed and his bedding got switched out.
October 28, 2007 - Ryan weighed in at 7 lbs 1 oz. He is not a little boy anymore. He's chunky and he loves his food! He has lasted on cannula for over the 24 hours and counting. They even took away all the equipment for CPAP so let's hope he continues to do well. He has been pretty tired today - slept right through a couple cares but he was awake for us at the 4 p.m. feeding. He nursed well for about 30 minutes and then got held by Aunt Lindsey and Dad.
October 29, 2007 - Ryan has lost an ounce so he is 7 lbs even. He is still doing great on nasal cannula and nursing. The doctor thinks he is ready to try a bottle so we'll try tomorrow. Mom put him in one of his Seattle Seahawk onesies and took some pictures for Dad's birthday tomorrow. They turned out pretty cute.
October 30, 2007 - Ryan had a busy afternoon - a bath with Mom and then his first bottle feeding. He loved his bath and after bath massage. He did really well bottle feeding with Dad but got tuckered out pretty fast (but ate 11 ml which is good for his first time out). He was so tired that he was fighting it but finally he fell asleep and slept right through his 8 p.m. cares. Dad will try to bottle feed again tomorrow at his 4 p.m. feeding.
October 31, 2007 - Happy Halloween! Ryan started off his 1st Halloween by pulling the feeding tube out of his nose during his feed at about midnight and got milk all over his Halloween outfit. Oh well - at least we got the pictures yesterday. He had an eye exam today and the eye doctor saw a decrease in the amount of pre-plus disease (part of the ROP), which is a very good thing. Other than that no changes to his eyes, another good thing. We met with the neurosurgeon this evening and no long term decision is going to be made yet. We are going to continue to wait and see. He still has a couple areas of concern that he will continue to watch but said it looks like most of the blood from the brain bleed has broken down. What he is seeing now is the walls of the ventricles are not smooth so he figures there is some blood clots still there. Weekly head ultrasounds will continue for now. The neonatalogist looked at Monday's head ultrasound and said the report showed that an area that had previously been determined to have PVL has cleared up so no PVL in that area. There are still some gray areas that are being watched. Hard to believe our little pumpkin is 14 weeks old today!