Ryan's July '08 Blog
July 7, 2008 - Ryan has been doing well since he came home. Last Monday evening after Mom had posted her entry she fed Ryan again and this time he took 96 ml. We thought sweet we are on a roll. Tuesday he only did in the 70-80s. Wednesday it was about the same and Thursday and Friday it was in the 50s. Since Thursday each feeding has been more and more of a struggle. We are not sure what is going on but it is very frustrating. He had Mom up about every half hour Monday night and Tuesday night he was up most of the night screaming. The only thing that soothed him was his binky or being held. Wednesday he was better and was doing well with tolerating feeds on the feeding pump plus had been doing well orally so we decided to adjust his feeding. Now he gets fed from 9 p.m. to 7 a.m. - when he is asleep. He is off the rest of the day with hopes of him getting hungry enough to take the bottle. We've been trying about 3 times during the day since then and each time has been worse. He just starts screaming. Not sure if it is because he is so hungry because we changed his feedings or if he had some reflux that burned his esophagus. Friday Mom noticed something funny on his lower gum and checked it out to find he has cut his first tooth! That explains Tuesday night we think. But does that have anything to do with the issues with his feeds? We've been trying everything we can think of - Tylenol 1/2 hour before we feed, putting a little food down the tube to coat his tummy, etc. Nothing seems to work. OT & PT had been so happy we were making good progress last week, we are not looking forward to having to tell them our latest news but hopefully they will have some insight. We continue to hope hunger will win out and he'll start eating but we will see.
We had a good 4th of July. Worked on projects around the house during the day and had family over in the evening. We were nervous how he would do with the fireworks in the neighborhood but he was passed out enough that it didn't seem to phase him. Saturday night though was a different story. On the street behind us people were shooting stuff off and it set him off. Mom rocked him until they stopped and he went back to bed. We've been continuing to work on stretching and we actually had a different PT person last week and she did some new items with Ryan that Dad thought were really good so we're incorporating them into our plan. Ryan has been a big snuggle bug since he got home. He appears to be feeling well and we are not seeing any signs of infection or rapid growth in the head or belly. All appears to be working at this point. We go back a few days before his birthday to see the neurosurgeon and see if the shunts are working. Ryan is really big into sounds lately. He loves it when you make different noises to him. Definitely reacts like he hears.
We hope the next time we write we have better news on the eating front!
July 13, 2008 - NEW PHOTOS ADDED 7-19-08 - Ryan continues to do well. No infection signs and belly/head look great. He weighed in at 22 lbs. 4 oz. on Thursday. Ryan is officially 10 times his birth weight - can you believe it? He's come a long way! Mom stayed home with Ryan Tuesday thru Friday as Dad had a training class at work and had to work days. This ended up being a good opportunity for Mom to really work with Ryan's feeds. She basically started over with oral stimulation and a syringe and then worked back up to the special feeding bottle and by the end of the week was able to use the Doctor Brown's bottle with a premie nipple. Progress was made and he's taking about 40-60 mls at each feed and Mom's been able to get about 3 a day. When PT came over on Thursday Mom went over what had been going on. They even worked with Ryan's feeding since he was in no mood to have a workout (he'd been playing with Nurse Suzie who came to visit so he was tuckered out). PT suggested trying Ryan on 1st level foods like peas or cereal and see how he does. Mom was excited so she went to the store that night and bought some food. Thursday night Ryan tasted peas for the first time. He was like what the heck is this you're putting in my mouth and gave all sorts of dirty looks, left his mouth wide open until he finally gave it a taste and swallowed it. We gave him quite a few tastes and each one was about the same scenario but not once did he spit it out. Good boy! He seemed more defensive about the spoon being put in his mouth over the food in his mouth. Friday morning we tried cereal and he did about the same - maybe a little better. We didn't try Friday night or Saturday but today he got cereal this morning and peas tonight at dinner and did about the same but to us that is great that he is not rejecting it. We had Grandma, Great-Grandma and Great-Granddad over for dinner tonight and they got to witness Ryan being fed and he had us all laughing. We've been working hard at stretching Ryan out and he does feel like he is looser than he has been since we came home this but of course we have lots of work to go. He appears to be getting close to rolling over from back to belly. Ryan decided to be turkey on Thursday and pull out his feeding tube. Mom decided instead of putting it in right away she would leave it out to see if it helped with feeding but she didn't notice any difference. She did take it as an opportunity to take more pictures without anyting on his face. He of course was not too cooperative but she did get a couple cute ones. Friday night Ryan went to his first pool party. It was for our friend Kelly who is also one of Ryan's PICU nurses. Some of his other PICU nurses were there and he finally got to see nurse Darcie. She had a him a lot during the first 2 months he was there before she had a baby in February. We've seen her once but she hasn't really got to see Ryan as the day we saw her he was in surgery. None of the girls could get over how big he was. They all enjoyed getting to kiss on him. We also put Ryan's feet in the pool for the first time and he wasn't too sure about it. He had a few outings this weekend - we took him to Costco and he did so good up until we were checking out and today we went shopping for his birthday. He also had a play date with his buddy Carter today. As usual he wasn't into checking Carter out but Carter checked Ryan out. We kept doing the 'watch Ryan you can do what Carter's doing' but of course he didn't listen. Carter's mom got to snuggle with Ryan and Carter did ok for a bit and then he had enough and was a bit jealous - it was very cute. He then didn't want his mom out of his sight. Unfortunately Mom didn't get any pictures of the boys together but did get some other photos of the play date. This should be a quite week of in home nurse and PT. We will be continuing to work hard on feedings and stretching.
July 19, 2008 - Ryan has had another good week. Not a lot of progress has been made with his bottle feedings but he is taking 2-3 a day in the volume of 20-60 mls. We have adjusted his pump feedings again as we've decided we need to work on stretching out his belly a bit more to get him to be able to take the volume he needs take. Right now we are at 145 mls an hour and he has had a few urpies over the last couple nights so we're hoping he'll get past that in a few days and then we'll go up again. I believe we need to get to about 200 mls. Then we'll do more bolus feeds where he'll get that 200 ml volume over an hour and then off for 2-3 hours and then get another. He has continued to get cereal and 1st level foods. We tried squash and he wasn't too sure about that but has continued to do well with cereal. Friday night Grandma, Great-Grandma, and Great-Granddad babysat so Mom & Dad could have a date night (went to see the movie version of Mama Mia) and Great-Grandma was able to get him to take a 60 ml bottle and Grandma got him to eat almost all of the cereal we put out for him. Great job! Today Mom got him to take 20 mls before his 10 a.m. nap and 40 mls at his 2 p.m. nap and got him to take basically all of the cereal she prepared in the evening. Very pleased with how he is doing with the cereal.
We continue to stretch him and work with him. He appears to be getting stronger in his head as he is really pushing up and hold his head up more. He is also getting very close to rolling over from his back to his belly. Hopefully soon. We still need to continue to stretch out his trunk though so we aren't making a lot of progress in the sitting up area although Dad said he got Ryan to basically sit up on his own for the longest he had seen the other day. His poor back and belly are just tight and we stretch and twist but it doesn't seem to loosen up too much but we'll keep trying. When nurse Suzie was over last week she had mentioned we should have one of us hold him and put him in the jacuzzi tub - that it might be good for his muscles. Great idea. Monday night before Dad went to work we thought we would try it. We were not prepared for his reaction. He screamed the whole time - it was very traumatic for him. We really thought him sitting on Mom's lap would help him be ok with it but wrong. So we got him out, dried off and ready for bed - he was still crying and upset. It took just finally putting him in bed before he would settle down enough to take the binky and pass out. Poor guy - we felt bad but know we have to keep doing it until he gets used to it. On Thursday night Mom was playing with him and it sounded like he had a full fledge giggle - not his normal ha ha laugh but a real giggle. Mom & Dad both stopped dead in their tracks and did a - did you hear that? Mom did it again and Ryan giggled again. Hurry get the video camera! Mom did it again and if you listen closely to the video you can hear him give a giggle. It was so cute. We haven't got him to do it again since then but have sure tried! This next week he has an MRI and we meet with the neurosurgeon on Tuesday and Thursday he gets his 1 year shots. 1 year - we cannot believe on Friday he will be a year. It sure has been the fastest, hardest, most stressful year. We feel blessed for the son we have that we love so much and that he has made it through all of those dark days when we didn't know if he would survive. We are thankful to all of our friends, families, co-workers and strangers that reached out to us and gave us support during all of this - it has meant a lot. He definitely is the strongest little guy we know and our hero.
July 22, 2008 - Today Ryan had an MRI and an appointment with the neurosurgeon. During the MRI one of the techs came out and asked if Ryan was having any new symptoms. Mom said no it was just a follow up to see if the shunts are working but then afterwards began to wonder if the MRI showed something new. We went over to meet with the neurosurgeon and he was talking with us for a minute or two and we finally said what does the MRI show. The suspense was killing us. He said the MRI shows a substantial decrease in fluid. What??? Could it be we are hearing those words we have longed to hear for what seems like forever? Could the shunts be working and Ryan's belly really be absorbing the fluid?? The neurosurgeon said that there are still some pockets but nothing new has showed up and nothing has got bigger. (So Mom was worrying about what the tech said for nothing.) Then he and his nurse took the stitches out from the last surgery and he showed us the MRI compared to the one 2 days before surgery. It is such a huge difference - we can't even explain. We can't tell you how nice it was to hear and see this today. We truly have a reason to celebrate this weekend! We now need to wait and give Ryan's brain time so we can see what they other pockets will do so we don't have to go back for 3 months. 3 months - this is huge. So in 3 months we'll scan again and see how things are looking unless we notice anything funny beforehand.
Ryan has been a drooling machine lately. Mom has been checking his gums because he was kind of grumpy on Sunday so she thought he might be cutting a tooth but hadn't noticed anything. Today she checked again and it appears the other bottom middle tooth is about to cut. Mom has checked a couple times to make sure she isn't seeing things and she's pretty sure. Also makes sense why he hasn't wanted to work with the bottle lately. He would rather chew on his binky and he about melts when you rub his gums. Hopefully it will cut by this weekend so we can show everyone at his birthday bash.
July 28, 2008 - Ryan is now a 1 year old! Can you believe it? Before we get to his birthday we'll start with Thursday and our appointment with his pediatrician. She was very pleased to hear how well he has been doing and was shocked to hear that he had been doing better at the bottle. His official 1 year numbers are weight 22 lbs 13 oz (45th percentile), height 28 inches (5th percentile) and head circumference 45.5 cm (25th percentile). If you look at these numbers based on adjusted age he is about off the charts for weight, about average for height and above average for head circumference. He got his 1 year shots and was not too happy about it. He got to see some of his friends (nurses that now work in the pediatrician's office that had taken care of him in the NICU, PICU or pediatric areas of the hospital). Later Thursday we picked up Grandma Connie from the airport and ran a few errands to get ready for his birthday party.
Friday was his actual birthday. Mom had a few moments of remembering what all happened that day and remembers the emotions and smells of the NICU room and everything from those first few days. It still feels like it was just yesterday but yet also a lifetime ago. We spent Friday getting ready for his party on Saturday. He spent a few hours with the great grandparents so Mom & Dad could get some stuff done. His uncle Bob and aunt Diane got into town from Washington state late afternoon and came over for dinner.
Saturday morning a bunch of Ryan's aunts and cousins from Washington state arrived. This was the first time they really got to meet little man. Last time some of them met him he was in an incubator in the NICU and was kind of hands off so they really only got to see him with no interaction. This time it was different. We all went to Carls Jr. for lunch and Ryan did really well. His birthday party started at 2 and we had lots of guests. Mom & Dad opened presents as Ryan got loves from people. We put him in his high chair and put a slice of cake in front of him to see what he would do. He put his hand in it and eventually put the frosting covered hand in his mouth and gave the what in the world is this look to us. The party turned out wonderful and we enjoyed it so much. Ryan got absolutely spoiled and now Mom has to figure out where all of it will go. After the party we had dinner for Mom's side of the family and enjoyed being outside. Ryan had never really been outside to just hang out so we put him on a blanket and let him play. He loved it. We put his feet in the grass and at first it was like what is this but then he was kicking and carrying on. He was so tired by bed time that he went to bed easily. We were a little nervous on how he would do with all the guests and being held by so many people but he did so good and seemed to love it. He just got worn out.
Sunday Mom's family left and we ended up having so much food left over that we had Dad's mom, sister and both sets of grandparents over for dinner. Ryan did really well but was still so tired from all the weekends festivities.
We were so not looking forward to having to keep him up late for his EEG today (to test on if he is still having seizures). We had to put him to bed 2 hours late (we only did 1 as he was so tired) and then get up 2 hours early (so we were up at 5:30) and then he couldn't sleep until we got to the hospital and they told us he could. He was an absolute grouch this morning and complained and fussed so much. We felt so bad for having to keep him up. But we got to the EEG and they said to go ahead and put him to sleep so Mom rocked him and he fell asleep pretty easily. They put the nodes on his head and he never budged even though they kind of man handled him. It was when we had to get to the other side of his head that was up against Mom that he stirred. He fussed a little until the tech was done and then he eventually fell asleep for the test. Then we had to wake him up as they do one part with a flashing light that apparently can cause seizures. We finished with the EEG and headed home. Got home and got a call from the neurologist's office that we were to take the CD of the results to the doctor and not wait for our appointment so Mom had to hurry back downtown to the hospital to drop those off. By this time Mom, Dad and Ryan are so exhausted we can hardly function. Ryan had slept on the way home and for a few minutes when we got home and then was up and ready to play even though the rest of us were so tired. Then we got ready and went to the Meridian hospital for our appointment with the neurologist (actually turned out to be his physician's assistant). The EEG showed no seizures so we can start weaning the seizure medicine! Yeah! 1st the neurosurgeon gave us good news and now the neurologist - all in one week Starting tomorrow we go down 1 ml in the morning for a week. Then we go down 1 ml in the evening the following week and then one more ml in the morning the following until we get to no meds in the morning or night. If we got off too fast he could have withdrawals. They said he was on a very low dose so it is very encouraging that he won't need the medicine but he is at a high risk for having seizures. By 9/1/08 he will be off this med. Yeah! After the appointment we ran Ryan over to the great grandparents and Mom & Dad went home and napped for a couple hours.
He has began cutting another tooth so he has kept Mom & Dad up a lot since Thursday night. It has been a little rough and we're hoping tonight will be a little better. The 2nd tooth has cut through on one side but still has the rest to go so he may continue to be a bear for a few more days. Tomorrow we will be trying to get him back on schedule and catch up on his sleep. Wednesday we see the eye doctor and the general surgeon. Hopefully we will be able to get him off of the predigested formula and on to a regular formula but we'll see. Thursday we meet with the Infant Toddler Program. Ryan qualifies due to his low birth weight so they will help us get more therapies as needed. We definitely need to pick up the work on his eating and we kind of think he needs physical therapy more than once a week but we'll see what they say. Ryan has been making strides and it appears his neck is getting stronger but we still have a long way to go.
July 31, 2008 - We end July on a good note. Yesterday we met with the eye doctor yesterday and Ryan's eyes are doing good but she did notice something new. When he is tracking an object and then stops, his eyes shake back and forth a little which is due to the brain damage. We didn't get a good understanding if this could cause him issues with his site or Mom is just not remembering it at the moment. The eye doctor is recommending us to the Idaho School of Deaf and Blind to have one of their therapists come work with him. There may be somethings we can do to help his eyes. We expect this to start in the fall. Then we met with the general pediatric surgeon. She was very happy to hear how well Ryan is doing, how he had improved with eating after surgery until the teeth started cutting, that the reflux is down and that we're using half formula for low birth weight babies and half pre-digested formula and that the stools are down to 1 or 2 a day. She agrees that we can start working towards getting him on regular Enfamil Lipil formula. We'll work with it for oral feeds for the next week and then for the night time feeds start working it in (replace the low birth weight formula). She has also agreed that when he gets done teething we can pull the feeding tube out for 2 days to see if we can get him hungry enough to eat. We just have to be able to give him 400 mls a day so he is not dehydrated. We're probably weeks from this. We have got her thinking Ryan does not need the fundo (which we would not let her do anyway) and she has agreed like the other doctors to give him 3 months to just growth, develop and heal. We are so glad that everyone is in agreement that he just needs to be left alone for a while.
Last night Mom tried Ryan on sweet potatoes and he did so good. He had quite a bit for about 30 minutes. As you will tell from the photos Mom let him play in it, which we are advised to do. Afterwards Mom popped Ryan in the bath tub and he did really good (and also was soooo tired he may not have had strength to fight). Then he was out like a light. Tonight Mom tried him on peaches and he did not really care for that. He appears to not mind the regular Enfamil so that is a plus. We had PT look at him while he fed today as nurse Suzi had noticed that he used his whole mouth. PT said he isn't closing his tongue like he should so formula just drips down the back of his throat. We have a thing we can do to work on this, which he doesn't appreciate. Hopefully when he can do the suck, swallow, breath a little bit better, he'll do much better feeding.
Today we met with the Infant Toddler Program. She asked us to give her the run down of what happened to Ryan and what we're looking for. We think he needs more than he is getting. We were reading an article about feeding problems and it looks like we should also be seeing a developmental specialist, a speech therapist and a behavioral psychologist. She went over what services they have and basically all of these are there for him if needed. So she is going to go back and staff us with those services she thinks we do need and then she is coming back next week for us to go over her plan and tweak as needed. Then we'll have a developmental specialist come evaluate Ryan and we'll get a clearer picture of how far behind we are and what we really need help with. Dad and Mom are so excited for this evaluation and to get moving on this. Hopefully this will really get things moving forward with development.
Ryan is still cranky from teething or it could be hunger. Mom and Dad are still exhausted from last weekend (and just in general) so this weekend will be a quiet one. We plan on lots of rest and trying to figure out where all of Ryan's new clothes and toys are going to go.