Friday August 29 post

Got the results from the head ultra sound. everything looks great! A big day for Ryker, he got a new bed. He has a crib now, meaning he can keep is own temperature. He has two goals left. Little man still needs to learn how to eat, suck, and swallow. Also, he needs to breath without oxygen.  We will b working on breast feeding alot next week. I really hope he gets it soon. Ryker gained 55 grams again today. You can see it in his face. He is pretty chubby. He only needs a couple more ounces for 4 lbs. Go Ryker man!

Thursday August 28

Well when I got to the hospital my little man's eye were still swollen. I felt so bad for him. They didnt seem to bother him at least. He had a head ultra sound, but I didnt get any results. The nurse told me that when the doctor exam the little man today, he didnt feel any testes. So they did an ultra sound to see him they were present. If they are, there is a chance when he is older he will need a surgery to help them drop. If none is present, he will not have any future kids. So not a win win in that area. Ryker's trisomy is becoming more visible in his face. The doctors pointed out features today that weren't there before such as his nose is becoming more wide and his little wrists are widening out as well. Still, we are not sure what this will do for the future. Life and time will only tell. Overall, the he is progressing. God is watching over this little one.

Wednesday August 27

Sorry my dear followers I have been slacking on the baby updates. I started my masters degree program on Monday and I am already swamped with homework. I haven't done the school thing in a while so it might take me a while to get the hang of things again.
Now onto the baby update. On Monday, there wasn't much to update. He keeps gaining weight which is the goal. Keep it up little. Right now he is weighing in at 3 lbs 10 ounces.  They keep telling me he is low in weight because of his trisomy. Hopefully, he can keep it stable.
Tuesday was an excellent day for breast feeding. Ryker got a good latch and yummy taste of breast milk. His mouth was so full, he didnt know what to do with it. The little guy choked a little. Hoping for some more successful breast feeding days this week.
Now today, my little guy had a hard day. He was struggling with his breathing, which they tell me he will grow out of the apea and low heart rates. I hope soon cuz every time it happens it scares me to death. Ryker man also had a very stressful eye exam. They gave him some pain relievers and proceeded to open his eye up with medal prongs. Poor little man was terrified and shaking. He cried hard too. At least his eyes are on the right track. seems like he is doing good there. I had to hold him for a good thirty minutes to calm him down. His eyes were all swollen when I left. Tomorrow is also going to be a stressful day. He has a head exam. I hope everything goes good.

Dad and baby napping

For those who dont know babies make you sleepy. Even if you dont have them home with you. Parker never naps, but I guess Ryker gives him a different kind of sleeping pill. Comfort and relaxation. I love it!

Another weekend update

weekends are always the busiest. Parker comes down and the whole little Allen family is together. Its nice to have all of us together. I am not as stressed and Ryker seems to do better with all of us together.  Ryker is putting on the ounces these days. He is 3 1/2 pounds. We have been told normal babies in the womb at this point in the pregnancy they gain about 1/2 pound a week. He is on schedule. Way to go Ryker!! The nurse told us yesterday that on Monday he will be moving into an open crib instead of his incubator. That made us smile. Another step closer to going home. He is also breathing alot better these days which is great! Keep it up little man. Here are a few pictures of his cute face.

Nothing new. Same old same old

No real changes happening today. Ryker is just sleeping, eating, pooping, and gaining weight. He gained another 15 grams today. Doctors say he is averaging 20 grams a day which is normal for a 33 week old. His 34 week mark is on Friday almost a month since he has been here. Crazy business. I did happen to get a great picture of him with his eyes open. check it out!!!

two day update

Yesterday Ryker gained a lot of weight when I was with him But over the night he lost weight. He is now 1440 grams which is 3lbs 2.8 oz. at least he broke the 1300 mark. We got a new resident today. no more Dr. Burton and Dr. Mitch. I really liked them. hopefully the new ones are just as informative. I actually met the real doctor today that was a first. I am not sure how I feel about all these doctors be switched in and out. I guess we get new ones every three weeks.  I wish we could transfer little man back up to Idaho. Then Parker could visit him more often. I need to win the lottery so we can pay for it. ha ha.
One of my good friends I met here in the NBICU took her baby home today. I am going to miss her. I was so excited for her. I cant even image all the emotion she was feeling when she took her baby home. I keep telling myself only 5-6 more weeks. Praying I can make it.
Ryker is just hanging out these days. Still on the oxygen, sometimes he forgets he needs to breath. They did an eye exam today and I guess it wasn't great. His eyes are not developing like they should. The doctors told me today they will be doing another exam next. They hope they see improvement. Next week Little Ryker has lots of tests since he will be a month old. They want to look at his brain and heart to see how they are developing. Praying for good news next week. I can't my little baby is three weeks old today. The past couple of weeks have gone by fast. I hope the rest will fly. One day at a time.

Weekend update

Wow! I didn't realize its been three days since an update. Ryker hasn't had great days this weekend. The doctors took him off the caffeine which helped him remember to breath.  They figure he was old enough to do it on his own. Since then he has been struggling with his breathing. He is on oxygen again. The doctors tell me its normal so I try not to worry. On the plus side Ryker gained an ounce. He is now 3lbs 1oz. Hopefully he can keep going. The more weight he gains the higher the food intake he can get.We are also holding off on the breast feeding. They say he is getting it, but still a little too small to go off the feeding tube. So once again he needs to gain weight. Guys!!! guess what exciting news I can finally sleep on my tummy. Its like a dream come true.I have been waiting for this moment for many months now. I sleep so peacefully, other then the stupid breast pumping. I am so over waking up every three hours. Welcome to parenthood. Here are some more cute pictures. Enjoy! Ryker loves to snuggle with his daddy!!!

Another day goes by

Today was another great day for my man Ryker. I think he is figuring out the breast feeding. Its a little awkward to have two nurses, a doctor, and an occupational therapist there watching you try to feed your baby. I feel like I have flashed the whole hospital these days. Ha. Today Little man gained 40 grams. The doctors are thinking about putting him on protein, but they haven't done it yet. They said they are waiting to see if he gains weight again tomorrow. He needs to gain weight, that's the major goal right now. So prayer his way would be much appreciated. On the upside, he is starting to maintain his own temperature. They gave him a different bed that will help him transition to an open crib. The doctors say he is a little to small still, but hopefully by next week he will be in an open crib. I have been given more opportunity with Ryker. They are letting me pick him up and we get to snuggle for more extended time. It is so addicting to have mommy and baby time. I live for it. Here are some pictures.  He is pretty cute.

 The pirate eye!!!

once again Ryker the rockstar!!!

sorry my dear followers for not updating yesterday. I had to go to Idaho for a quick trip. I came back and Ryker is completely off the oxygen support. No more cords in his mouth or nose except a small feeding tube in his nose for supplemental feeding help. The docs are concerned with him losing weight everyday. He is down to 2lbs 15oz. I was told today its probably because of his syndrome. So hopefully he will get his cute butt into action and gain weight soon. On the plus side he is sucking his thumb and is loving his binkie. So hopefully he can figure out the breast feeding. Haha. Ryker's favorite thing to do is a pirate eye. He knows how to open both eyes, but chooses not to and peeks through one eye. Its pretty funny. Guess he wants to bring back the pirate look.
Another big update today is Rockin Ryker is learning to stable his own temperature. He is showing off some new threads these days. The nurses dress him now. His outfit today was pretty cute. All those preemie clothes I have received from you fans out there, thanks. They are going to come in handy. Unfortunately, he is so tiny the clothes are huge on him. One day he will be too big for them. Looks like Ryker man is moving in the right direction. Until next time.

geneticist information

We got to talk to the geneticist. He did an assessment of baby Ryker, but he didn't give us much information. It is so rare there really isn't much information about his disorder. All we got from him was how the chromosome made a copy and how much of the chromosome Ryker has. Because all children with this syndrome are so different, the geneticist doesn't know how severe the disorder will be. He didn't give us any idea of how it will affect my son. I feel at a loss, but my dear sweet husband keeps telling me that everything will be just fine. Ryker is going to be special in his own way.
The doctors are impressed with his breathing. They moved him off of all breathing machines. My little boy is just receiving light oxygen using an oxygen tank. He has three goals left before baby gets to come home. He needs to learn to eat without the tube and gain weight, regulate his own body temperature, and get off oxygen completely. He is my little rockstar that's for sure.   
The nurse told me that they are going to take out his feeding tube tonight. They want me to start coming in for breast feedings during the day starting tomorrow. It might be a slow process, but hopefully he can get the hang of it. Yea for little man!!

Father and son snuggle time

As a missionary in Rome, I was blessed to teach a family that had a 20 year old girl with special needs. I felt this impression one day that I was going to have a child with special needs.  Before and after my mission I worked as a paraprofessional  helping students with all different learning disabilities. I feel I have been blessed and prepared to help my son with whatever difficulties he may have in his life.  Yesterday, we got the phone call for the genetics results.  We were told that Ryker has a rare chromosomal disorder where he has three copies of chromosome 9p. There is not much information about this rare disorder. On Monday, we will be talking to a geneticist about his condition. More information will be given to us, but there is good chance we won't know what he will struggle with until he is older.  I took it a little hard at first. I wasn't feeling bad for myself, but I was feeling scared for my son.  But the more I see my son and the more we get to hold him, I know Heavenly Father blessed us to have him in our lives.  Heavenly Father has trusted us enough to send such a special boy.  So please don't give us sympathy. Ryker is exactly how our Heavenly Father wants him to be.  We are all going to be okay with whatever is going to happen with my little beautiful boy.
Last night we got to go to the hospital to hold our little boy again.  It was Parker's first time.  It was really cute to see father and son snuggle together.  He is such a cute little kid and I just love kissing his little head. The more I see him, the more grateful I am to have him in my life. I don't care what he has, I will also love him. He will always be my little tough rockstar. Here are a few pictures for you to oohh and aahh at.

Oh Ryker! I am falling in love!

Today was the best day of my life. I wasn't expecting it to be the best, but when I got hospital I was informed I could start holding my baby twice a day those words made it the best day. I can't believe how much he has improved. When the nurse put him in my arms, I was tearing up. I really felt like a mom. I was on cloud nine. I kissed his head and whispered I loved him multiple times. I absolutely loved every minute of that two hour time with my baby. I just rocked and stared at him. I couldn't believe how little he was and blessed I was to have him. It was an incredible experience. He opened up his eyes again for me. He just stared at me. It was so awesome! I can't wait until Parker comes tomorrow night to hold him. It will also bring tears to my eyes.
I also got to talk to the doctor. She told me he is doing so awesome. They are doing therapy on his hands and hopefully by the end of his stay he will have full range of motion. Ryker is improving everyday. I can't wait until the day I can take him home

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I love my baby!!!

I finally made it back from Idaho to see my baby. He is doing really well today.  Ryker was transferred to a different room today.  He is in the room with open cribs and rocking chairs so the nurses can transition him into "Kangaroo Care." Meaning Parker and I are going to be able to hold him soon.  I can't wait until that day comes.  It was great to see his little face.  With all those tubes and cords all over it was really good to actually see his features. He opened up his eyes tonight and actually looking into mine.  It brought tears to my eyes. He is so beautiful!! I even got to hear his small cute cry tonight.  He was really sad that the nurse was adjusting him. The nurse told me to put my hand on his head to calm him and he stopped crying.  It was pretty amazing.  It made me feel like an actual mom. Overall tonight was one of the best nights I have seen.  The only concern the doctors have right now is that he can't straighten out his left hand.  His fingers are all curled up and he just can't straighten them.  We are still waiting for genetics results. Hopefully, they come back normal.  Keep praying for the little man.  Here are some pictures for your enjoyment.

baby update for today

Its been hard to be away from baby the last couple of days. I can't wait to see him tomorrow. We did call the nurse and great news Ryker is completely of the breathing tube. He is only getting oxygen through his nose. I am so happy for him. He. Is doing really awesome. Nothing new other then that and we are still waiting for blood work results and genetic results. But I am not worried at all. He is doing so well. More pictures tomorrow of his cute face.

Ryker is a rockstar today

We just got an update on our baby boy! Today was an excellent day for him. He is starting to breath more on his own and they are feeding him alot now. The goal is to gain weight. The best part is that he is pooping regularly. So for today everything looks good. Prayers are being answered. He is growing more and more each day. We are so blessed. I can't wait to be able to hold him. Right now his skin is still too fragile. RYKER IS A ROCK STAR!

Ryker is getting more handsome every day

Parker and I just got back from the hospital to visit our cute baby boy. When we got there the doctors took out his IV from his head, and the light for jaundice, and they upped his breast milk feeding. He is eating almost 1/2 oz of milk each feeding. That is perfect! Now he can start gaining weight. Parker was a lucky father today, Ryker pooped a sticky new born poop that was smeared all over his bottom. Great practice for when he comes home. It was funny to watch parker clean him up. I couldn't stop staring at him now that I can see his face. Ryker was getting frustrated with the nurse so much he would stick his feet straight out and scrunch up his little nose. It was so dang cute. His little hairs are starting to fall off. Hopefully it comes back more red. I feel so blessed to have Ryker doing so well. Heavenly Father is truly watching out for us and this little baby. Miracles really do happen. God knows his children and is aware of every situation. Situations like this makes me have more faith and appreciate all my blessings.

Ryker moved up in the world!

The last couple of days have been busy. Yesterday we had a day full of visitors at the hospital. Ryker has quit the fan club. Parker and I get to interact with him more. I even changed one of the first poopy diapers. To be honest I wouldn't think poop would be so dang cute. We even got to see his little face the last couple of days. The nurses like to give him a break from the lights, so they take his glasses off for us to see him. His face just gets cuter every day. He is still on the ventilator. They just want him to focus on strengthening other parts and not working hard to breath.
Today I got to be discharged from the hospital. I was excited about that. After two weeks of nasty hospital food and an uncomfortable bed, I sure appreciate my house and my bed.  I spent alot of time today with baby. Just watching him sleep makes me smile. I love his cute little feet. I want to kiss them! It was a little hard to leave him at the hospital all by himself. But I keep telling myself, there is nothing I can do for him. The nurses know what they are doing. So I just pray he will do what he needs to come home. The most exciting news is that Ryker moved to a different room. He is now only sharing with one other baby. Much more quit for him. I like it better. Much more privacy for us when we visit. Things look up for him. They are now feeding him more. Hopefully he starts to gain weight. Keep the prayers up. Looks like all your faith and prayers are working. Love you all and thanks for the support.