Ryan's October '08 Blog
October 5, 2008 - We met with the neurosurgeon on Tuesday, actually we met with his nurse as he was in an emergency surgery, but she was very pleased with how Ryan looked and to hear he is doing so well. We will be having an MRI in the next month to see how Ryan's ventricles look and to determine what his new baseline is. Wednesday we met with the general surgeon and she was also pleased to see and hear how well Ryan is doing. We are to touch base with her in 1-2 months and let her know how he is doing with his feedings. Wednesday Ryan went with us to tailgate before the BSU game. He did well but seemed to get tired (plus it was really hot) so Mom and Ryan stayed out in the car for the beginning of the game to cool down in the A/C. Once Ryan cooled down we went in and he did well. Aunt Lindsey and Dad's friend Brian were sitting with us and after Ryan took a little power nap on Mom's shoulder, he played and jumped with Auntie until about 6 minutes left in the game and then he decided he was tired and had enough. We got some food in his belly and tried to get him to sleep in the car but he was fussy almost the whole way home but then fell asleep. Friday morning we had a hearing appointment and they gave us the right side hearing aid to try. We are not sure if we are seeing a difference but we will continue to watch.
Thursday we started what we're calling baby boot camp. Since he has been less defensive with his mouth, acts like he feels the best ever and because we feel like we're running out of time, we decided it was time to try turning off the feeding pump at night for a few days to get Ryan hungry and seeing if we can get him to eat better. His pediatrician told us he needs to get 400 mls to keep him hydrated and that is our goal. So Thursday night was the first night of not being fed. He did well Friday - not acting super hungry and we got about 200 mls in him during the day so we got him the rest he needed over night. Any amount we need to give him over night we will give on the pump early in the evening so that by morning he should be hungry. Saturday he was angry due to his hunger and did better with taking the bottle. Today he took the most by bottle in a long time - 80 mls. We've also been working on solid foods and Friday he did really well with cereal, he did not like pears Friday night, he didn't do as well with cereal Saturday and did ok with applesauce Saturday night. He did pretty good with cereal this morning and did good with squash tonight. He definitely has been a little more defensive with the solid foods today so we'll have to work on desensitizing his some more. Mom's sister Colleen is coming down tomorrow to help us this next week as we continue boot camp. She'll be helping with feeds and stretching Ryan. Then Mom will be taking a few days off the following week and we'll see where we are. We have noticed some developmental improvements over the last couple weeks. Ryan is now reaching for toys out of his reach no matter if he is on his back or belly, he has been playing with toys with both hands and he has been doing wonderful with pushing up while on his belly. We just haven't been able to get him stretched out enough yet to sit up on his own and he hasn't quite figured out that he can be up on his knees as well as pushing up with his arms at the same time. He appears to think it is one or the other. He has been playing really well in his jumperoo and scooting around. We hope all of this continues and hope that when we're done with our experiment we'll be much further ahead of where we started!
October 8, 2008 - Today we've had a break through! Yesterday Ryan pulled out his feeding tube so we left it out overnight in hopes to get him hungry. This morning when Aunt Colleen fed him a bottle before Mom left for work - he was taking it with his eyes open! Yes eyes open! We think we have finally got him hungry enough to realize he needs to do it. He is only taking 30 mls (1 oz.) but it is a start that we can work on. Maybe having the tube out of his nose is also helping. We were worried that Ryan would only eat this way with Aunt Colleen and that we wouldn't be able to let her go home but so far in the 2 hours since Mom has been home from work he has eaten from Mom and Dad and he's had almost 4 oz in that time. We cannot tell you how excited we are! We are planning on leaving the feeding tube out tonight and we'll mix his meds in with baby food that he'll get tonight at dinner so we're covered. The home health nurse comes tomorrow so we'll see if he has lost weight. Dad is worried about him losing lots of weight but Mom doesn't think he has lost much.
Yesterday we had a speech evaluation and for most stuff he is tracking as a 6 month old (but doing some of these items at the 12 month level but not at a 100% so that is why we're at the 6 month level) and some stuff he is tracking at the 3 month level. This one is probably Mom and Dad's fault as we've been trying to get him to say MaMa or DaDa and the therapist said try Uh Oh. So we'll start working on those items and go back in 6 months to see if we make any progress or if his hearing really is causing us issues. We are also having a speech evaluation through the Infant Toddler Program on Saturday and then they will decide if any therapies are needed. We think it is too early to tell. We just finally have Ryan feeling good and starting to progress developmentally so we think in 6 months we may have a better idea of what is what. Last night when Mom got home from work, Aunt Colleen had him in his jumperroo and he was having a ball. It was so cute to see him playing this way so Mom got some video so go check it out. We also tried on his Halloween costume to make sure we didn't need a different size and took a couple pictures.
October 12, 2008 - Thursday the home health nurse came and said Ryan lost 1 lb 9 oz since last week. YIKES! Way more than Mom thought but what Dad thought. The nurse was happy to hear about the improvement we had on the eating and thought we should talk to the pediatrician about increasing Ryan's calorie intake and bumping down his volume so Dad put a call in to the pediatrician. We didn't hear back from the pediatrician Thursday so we increased Ryan's intake anyway and we also put the feeding tube back in. Our biggest worry putting it back in was that he would not take a bottle with his eyes open. If he didn't then we knew we'd probably be calling the surgeon soon about a G tube. We got the tube in and Ryan was p.o.ed. They have told us the older he gets the worse putting the tube back in is going to get. He was so upset but Colleen was able to get him to take a bottle with his eyes open after the tube was in so we were sooooo happy about that. Unfortunately the rest of the night was not good. Ryan had Mom up from 10-10:30, let her go back to sleep until 11ish and then she was up until 3 a.m. Mom had Dad come home around 12:30 for about an hour because with the weather turning colder, Ryan's room was really cold compared to the rest of the house. Ryan was so fussy especially if you put him down. Around 2 a.m. Aunt Colleen heard Ryan and came in and took over so Mom could lie down although she wasn't able to sleep with him fussing. About 3 Colleen got Ryan to sleep and then the rest of us finally got some sleep. Aunt Colleen headed home Friday afternoon and it was sad to have her leave. She helped us out in so many ways that we will never be able to thank her enough. We made the progress we were hoping for this week and we give all the credit to her. Friday Ryan was very fussy and it finally dawned on Mom that he was acting like he gets when he's teething - fussy and doesn't want you to put him down. She felt his gums and it kind of felt like on the top one could be coming in but Dad didn't think so. Finally we started getting Tylenol and the teething tablets on board and life has got a bit better for the little man. Mom and Dad both thought on Saturday that he is cutting a tooth on top. The pediatrician called back and at first was concerned hearing about the weight loss but then was ok after we explained baby boot camp. She agreed to increase the calories and reduce volume and was pleased to hear about eating with the eyes open. Putting the feeding tube back in loosened something in Ryan's nose and when we were up with him in the morning hours he started sneezing a lot. Friday he had a runny nose and was still sneezing a lot. A first we were thinking he might have a cold and have toyed with that thought all weekend but by today he isn't sneezing out of control and his nose isn't as runny. We had a speech evaluation through the Infant Toddler Program yesterday morning and she seemed happy to see Ryan doing some things but thinks he should get therapy so we'll be adding that to our list of therapies. So now we have 2 physical therapists, an eye therapist, a hearing therapist, a speech therapist, and the home health nurse. All weekend we have stayed in and worked on feedings and Ryan took good naps and also watched a little football. We went over to the Great Grandparents to watch the BSU game Saturday night and then tonight we went to the hospital to see his girls at the PICU. He got to see quite a few of them and they all thought he looked so good. Ryan took a little bottle with his eyes open with Great Granddad last night and did more with Mom and Dad today. He is taking between 30-40 mls (1 oz) right now with his eyes open and with his eyes shut we're getting 60-90 mls (2-3 oz). We're making progress.
October 18, 2008 - Ryan is slowly gaining his weight back. On Thursday he weighed in at 21 lbs 14 oz. Earlier this week it appeared that Ryan's tooth that we thought was coming in went back up but since yesterday he appears to be cutting it again. Ryan continues to take a bottle with his eyes open and we're getting between 30-40 mls out of him still. We increased to a level 3 nipple on Thursday in hopes that he would get more volume with the faster flow but we're haven't really increased yet. Both of Ryan's physical therapists were so happy to hear of his progress and one got to see him eat and she couldn't believe the change from the last time she saw him eat. Wednesday we had the eye therapist and she was very pleased with how Ryan is doing. She was working with him to pull a peg out of a foam pegboard - which he did and she was so excited - as well as pulling toys out of containers. We had a hearing appointment Friday and we now have a hearing aid for each ear. So far no noticeable difference. This time we'll test them out for a month and then go back in. Mom took off Wednesday through Friday to work with Ryan. She very much enjoyed staying home and being Mommy. We did not take Ryan to the BSU football game Friday. We decided we have him on such a good schedule that we hate to interrupt it so Aunt Lindsey watched him so Mom & Dad could have an evening out.
Last month Mom was invited to join the St. Lukes NICU Family Advisory Council. It is a group of NICU staff and parents whose child or children have gone through the NICU (and were recommended to the council through NICU staff). The mission of the group is to encourage positive change in the NICU, make it more family centered care and possibly be someone for other families to talk to who are going through similar situations. The council met Wednesday night and there were some very good feedback from us parents to the staff that we hope will get put into place. One recommendation was moving moms who just gave birth to a baby taken to the NICU away from other moms on the maternity floor of the hospital who get to care for their newborns. Mom cannot tell you how hard it was after giving birth to Ryan to see and hear the people across the hall getting to work on feeding their child or just taking care of the newborn in their room and then getting to take their baby home. You are so overwhelmed, upset, happy, etc. as to what is going on with your child that when you see someone else getting to do what you were supposed to get to do after giving birth - it's a dagger to the heart and just adds to the emotional rollercoaster that you are already on. We recommended moving NICU mothers to a certain area on the maternity floor away from the nursery or moving them to another floor and put with others in the same situation. Mom is definitely hoping her input on situations like this will help other mothers in the future and she is very excited about being on this council.
Back in August we mentioned that Ryan was going to be on one of the St. Lukes Christmas cards. They use local artists to design the front of the card and on the back of the card there is a 2x2 picture of a child that received care in the pediatric areas with a blurb on why they were in the hospital. They do 12 cards so we feel honored to be one of the 12 chosen, given how many children visit the hospital each year. Being loved by so many staff and having lived at the hospital for so long probably helped our chances of being chosen. The link is at www.stlukeschristmas.org and the card is called Bronco Christmas if you might be interested in ordering some cards. Proceeds to go our home away from home, the St. Lukes Children's Hospital. There is a locations link on this website that lists store locations around the Boise area where they are also sold. We hope you will consider purchasing some of the cards!
October 26, 2008 - Ryan lost an ounce from last week so he weighed 21 lbs 13 oz. No one is concerned as they know we're working on feeds. Ryan has been doing well with feeds but we're still teething so we're not getting the volumes yet that we're hoping for. Mom realized this morning that not only did Ryan cut a tooth on the top but also on the bottom and she thinks another one is about to cut on the top. Man we'll be glad when teething is over - it is a little disruptive to work on feeds but at least he is not flat out refusing to take the bottle. He is rather willing at almost all times - what a nice change. We have forgotten to mention that the weekend after Colleen left Ryan started rolling over from belly to back. This is now posing some issues in his crib as he can wind his tubes pretty easily. This week when physical therapy worked on crawling with Ryan it appeared to Mom & Dad that it might be clicking with him what he needs to do. He did really good both times this week. We'll see if that carries into next week. Dad took Ryan to the dentist on Wednesday and he agreed that the yellow was from the high billirubin and the prematurity. He says Ryan has strong teeth and that he's hopeful that his permanent teeth will come in ok with no discoloration but if they do he has many things we can do. That is good to hear. We had a hearing therapist from the deaf & blind school come out Thursday morning and she agreed that Ryan can hear. This week was just a get to know Ryan meeting and she will come back in 2 weeks to start working with him. We have not put the hearing aids in very much. The left side is so sensitive that it squeals often and bothers him. We will be calling the audiologist tomorrow to have them adjust.
Yesterday we took Ryan to Boo at the Zoo with his buddy Carter and Carter's parents. Both boys did wonderful being in their strollers and costumes for about an hour and a half. For those that don't know what Boo at the Zoo is it is a special thing the zoo does where the kids wear their costumes and around the zoo people are handing out candy. It was very crazy but a lot of fun. We got a few pieces of candy for Ryan (really Mom & Dad) but didn't hit most of them. After we were done we went out by the rose garden to get pictures of the boys. The boys were very cute and we had a great time. Then we met them out at Harry's in Meridian for lunch. We couldn't believe how good the boys did for so long. By the time we finished lunch it was 3 p.m. We headed home and in the car Ryan decided he had enough and started fussing a couple miles before we got home. He crashed rather easily and we thought he'd sleep for 2 hours - wrong! He got up after 40 minutes. When he went to bed we were hoping he would sleep in this morning as he had Mom up between 5:30 & 6 on Saturday. At 2 a.m. he was awake and talking in his room. Mom got up and rocked him for about 30 minutes and then got him to go back to sleep or so she thought. She got back to bed and he started talking again. Dad's turn! He got Ryan back to sleep and then Ryan was awake around 5. We made him stay in bed until 6. He did take a 90 minute nap this morning as well as this afternoon so we're happy about that. Grandma Pam and Aunt Lindsey are here and he's being silly and having fun.
We saw Ryan's Christmas card today and it really did turn out very nice. Thanks to those of you we've heard have already ordered or are planning to order.
Luckily this week we don't have much - Dad's birthday is on Thursday and we're so happy not to be spending it at the hospital this year. Friday we're taking Ryan down to Parma around 5 to trick or treat at Grandma & Grandpa's house as well as Great Grandma & Great Grandpa's house. Then we'll head back and hit Great Grandma & Great Granddad's. We hope to be back at our house by 7 to hopefully get the end of the trick or treaters. Then Saturday we'll be celebrating Dad's birthday with the family and watch the BSU game. We'll update next weekend so Happy Halloween everyone!
October 27, 2008 - Hadn't planned to update tonight but we had to go see the pediatrician late this afternoon because there was an issue with Medicaid paying for his oxygen (the order expired) so they needed the pediatrician to check Ryan's saturations to find out if it was still warranted. Of course he was high satting and never dropped down so the pediatrician said take off the oxygen and let's see how he does. So tonight is the first night Ryan is going to bed without some sort of oxygen assistance since we tried it back in January. We're very pleased. It is so nice to not have to drag around the oxygen tank and worry about the cannula cord. You cannot believe how different he looks without the cannula. Please keep your fingers crossed that he does well and we don't have to go back on. We will be keeping the oxygen around though in case we need it again. While we were there we also got his RSV and flu shots. We also found out we were not giving him enough volume overnight like we thought we were. He is like 300 mls short so we'll be adjusting the volumes this week to get him where he needs to be. That should get us back on the weight gaining track. At the pediatrician's office he weighed in at 21 lbs 11 oz - lost 2 more oz. Hopefully now we'll get him back on track.