54 Days Later...

Jase is home!!! I can't believe he is actually here. I am so grateful this day has finally come. What a crazy few months this has been for us. It has been along week this week. It was hard thinking he was coming home on Monday because everyday I would go in so hopeful that they would tell me that that day was the day he was ready to go. Each day I would come home just a little disappointed.

On Thursday I went to see him and they had put a cannula back in his nose and put him on oxygen. I was a little bit sad that they had to do that again. He had done really well for about week without needed it, but had a rough day and night and they felt like it would be better if he had just a tiny bit of air. It seemed to help and I knew he could come home on oxygen if everything else looked good. That night Jeremy and our bishop give him a blessing to just help through the last few hurdles he needed to over come.

Friday morning I get a call from the discharge planner at the NICU saying he has done really well and it looks like he could go home with the oxygen. Once again I was so excited and also a little bit nervous because I wasn't sure how it would be with the oxygen. She also told me that they were going to send him home with a pulse-oximiter that would keep track of his heart rate and since he was coming home on monitors I would have to go and stay 24 hours at the hospital and take care of him while a nurse oversees everything. They wanted to make sure I could handle the monitors and take care of him also.

I stayed over Friday night in what was called a "family room." It was just a big hospital room with a queen-sized bed. They brought him into me and Jase and I just hung out! I didn't realize how much I was missing be not being able to REALLY take care of him. I got up with him every time he was hungry, changed his diaper, took his temperature and put him back to sleep. I'll be honest, I did forget how exhausting it can be, but it's part of being a mom and I loved being able to finally do that for him. Everything went really well throughout the night. The nurse would come in every once in a while to make sure we were OK. I expected to be there all day today to fulfill my 24 hours, but about 10:00 this morning a few different doctors came in and said everything looks good. Pack him up and take him home!!

This was his little corner of the NICU in St. George

Of course I had to take a few pictures while we hung out together on the bed

Kylie has done really well with him. She doesn't act really excited about him, but doesn't seem to not like him either. She is a very big helper and wants to do everything for him all by herself. After we got home today I was changing my clothes and getting ready for some of Jeremy's family to come over and Kylie comes up to me and says, "Mom, where are you going, to the hospital?" I was so happy to tell her I didn't have to go. She seemed pretty relived when I told her I didn't have to.

Just a few pictures for the grandmas...

Here he is in his car seat ready to come home. He now weighs 5 lbs 14 oz and has only grown 2 cm since we was born, so he is still about 16 1/2 inches. Is it weird to see a baby coming home from the hospital with his eyes wide open?

This is Ty and Jase. Ty is Jase's cousin and was born exactly a week after him. Ty is now about 8 lbs 6oz (I think). Jase will eventually catch up. The doctors say by the time he is 5 or 6 no one will ever be able to tell he was premature. Also genetics play the role in how big he will be someday not his prematurity.

I really can't even begin to express how grateful I am for all the love and support we have been shown while going through this. There is no way in the world we could have done this without the help of our family and friends. So many people have reached out to us and we will be eternally indebted to them! I have learned how important it is to let people help. Its just as important to let others serve as my serving other people. So many prayers were offered in our behalf and I know the hand of the Lord was there through every part of this. We have been eternally blessed and know that prayers have been answered. I am so thankful for the gospel and I know I can trust in my Heavenly Father and that he knew my needs and desires. My testimony has truly grown. I have also learned that Jeremy and I can get through anything together. I am so grateful for him and the support he was to me and his worthiness to give much needed blessings. I love my two little kids and I will take them anyway they come, whether it's 6 days late or 9 weeks early!

False Alarm

I got a call about 9:30 Monday morning from Jase's nurse at the hospital telling me that he was ready to come home. She told me to hurry and bring the car seat over the the hospital because they have to test it and it takes about 90 minutes and then I could come back and watch a couple movies and then take him home. Needless to say I was stoked!! I couldn't believe this day was finally here. I gathered up Kylie, grabbed the car seat and headed over there. I dropped it off and came home. About an hour later I get another phone call from her saying, "I'm really sorry we thought he was ready to go, but we found blood in his stool and need to watch him a little longer." My heart dropped! I was so disappointed! We were so close I could taste it.

I took Kylie over to my friend's house and I headed back over to the hospital. I asked his nurse what the blood in his stool meant and she said that it's pretty common for babies who have had bowel surgery to bleed just a little bit and its not a lot a blood just little traces. She also said that it could be from the fortifier they put in his milk. Apparently it's cow milk based and that can cause blood in babies stool also. They took him off the fortifier and did a X-ray of his abdomen. They did find a little spot they wanted to keep an eye on. She told me they would do another X-ray Tuesday morning to check if the spot is getting better.

This morning when I went in they had done the X-ray and it was looking a lot better. He has had good diapers and no traces of blood since yesterday morning. Yet again I keep being told "Just a few more days. We just need to watch him a few more days." I really wish I knew how long a "few days" was. I came home a little bit discouraged, but also very relieved that these things are being found and taken care of now. I have to remember that ultimately I want him to come home SAFE and the last thing I want is something to still be wrong or go wrong when he comes home and we have to readmit him or something worse happens. I continue to put my faith and trust in Heavenly Father and know that he is taking care of us and that Jase will come home one happy, healthy little boy when the time is right.... which is hopefully really soon!!

Here are a few pictures for your viewing pleasure

He frequently smiles when he sleeps and I was lucky and caught this one on camera

Drinking his bottle... Even though he has been doing this for awhile, milestones like this are huge for little babies like him.

Just another one I thought was pretty cute.

Kylie now loves all things princess and never turns down the opportunity to pose for the camera.

Indications Your Child Is Too Big For The Car Seat

We pulled out the car seat for Jase to make sure it was clean and ready to go for him. Kylie immediately climbed in and thought it was so fun to play with.

She couldn't get enough of Jeremy swinging her upside down.

The funniest part was when Jeremy stood her up and told her to walk across the room. I died laughing. It was so funny!!

I wish I would have caught it on video, but I was laughing so hard I could barely take pictures.


She finally started getting really mad at us because we made her do it a million times.

Couldn't Resist

As soon as my family found out that Jase was going to be 4 hours closer to them they decided to take a weekend trip up to see him. My parents where both amazed at how great he looked and how much he had grown. My dad kept saying he looks just like a new born baby now. Ashley was surprised at how much he had grown and Amanda and Lexie (who had never seen him before) couldn't believe how little he was. I love it when they come to visit. It was so fun having them. Kylie was so sad to see them leave.

Jase now weighs 5lbs 11oz and is eating amazingly. It seems that just since we have been down here he has made a huge improvement and mostly will come home some time the first of next week!!

We're Home!!...Sorta

We got the boot at Primary's today. I went in to visit Jase yesterday and was informed by my nurse that a transfer back to St. George had been approved and would be happening either later that day or today. Needless to say I panicked a little bit, because I wasn't sure if I really wanted him back down there. It had been rumored for the past couple days that they were looking into sending him back if they could get it approved. I hadn't really given it too much thought because when they looked into it right before Christmas our insurance wouldn't pay for it; therefore it wasn't an option which I was fine with. Apparently since Jase was now healthy and doesn't need extreme special attention Primary's needed to send him back to the St. George NICU so they could have room for other babies.

At first they were contemplating driving him back down in an ambulance, but then realized that it would be more cost effective to just fly the short flight in the Life Flight plane. Jeremy's parents were so nice to drive him up to Salt Lake so he could drive Kylie and my car back and I could ride in the plane with Jase. Jeremy was in trouble the first time because he didn't take any pictures of his ride up there so I made sure to make up for it and took plenty this time.

Here they are loading him in the ambulance at Primary's.
One of the Life Flight ladies made sure I got a picture of the incubator with the plane.

I was surprised at how big the plane actually was

Here he is inside the plane. If you look really close you can see his tiny hand

This incubator he lays in is tiny compared to the huge thing it is with.His new bed.

Raise Your Hand If You Miss Kylie

Kylie has spent the last week and will spend this next week in Arizona with my family. I am so grateful to my family for taking good care of her. She is probably at the the one place where I don't have to worry if she is a problem. It's been so nice to be able to come and go as I need to and spend as much time as I want at the hospital without having to worry about her. I have really missed her though! I call and talk to her everyday and with the exception of two really sad phone calls she has been really happy. When I call and ask what she is doing she always replies with "Good." I have to specifically ask her if she is doing different things to get another response out of her. He seems very concerned about my dad's broken leg and whenever someone is sick. Her favorite things are going to the park and getting my dad water.

The other night my dad told me that Kylie went up to my sister Amanda and said, "I want to say a prayer on your head." She went over the Amanda put her hands on her head and said, "Dear Heavenly Father, we are thankful for the Gospel." I am not sure if that is inappropriate, but it's funny!! She has apparently noticed all the blessings that have been given the last little while.

I am excited for her to come back and I hope she understands that I love her and this whole situation is only temporary. I can't wait for us all to be a family again at home and I can't wait for her to get to know Jase better. They are going to love each other!!

Speaking of Jase...We have had some really good days. He is starting to do a lot better with his breathing. They still think it probably has something to do with his reflex, but he self-resolves every time and that is really good. He now eats 40cc which is almost 1 1/2 oz and they have condensed it down to 1 hour feeds. He is also showing great progress with his P.O. (by mouth) feeding and so they are letting him do that 2 times a shift as long as he is awake and alert.So far for the past two days while I have been there he has been awake and taken the feeds really well. I love being able to feed him. When Jeremy saw him this weekend he had noticed a big change in him. He is starting to feel out a little more. His eyes are getting lighter along with his hair. The Physical Therapist noticed that the sides of his head are getting flat because he prefers to have his head turned rather than laying flat on the back of it. So he has a gel tube looking thing to help keep him lay on the back of his head instead. Each day seems to bring on more and more promising things. We are so blessed!

Happy 1 Month Birthday, Jase!

I can't even being to say how grateful I am that it is January 8th and not December 8th. Next year, well I guess this year, I will celebrate that day like crazy, but right now I am just so glad it is a month behind us!! Jase is actually 32 days old and its weird to think that my due date is exactly a month from today.

Lesson #472912747180: Everyday is different! Today I go up to see him and they are in the middle of a head ultrasound. I was a tiny bit alarmed wondering why they needed to do that. I asked the technician if they have done other brain ultrasounds on him and if this was just a routine thing. She said they had done one the day after he got there and then they routinely do them every 30 days. I was a little relieved until she left the room and came back with some other doctor. She then showed him some of what she was seeing. I started getting really nervous again. The doctor then said he was going to compare these pictures to the earlier ones and then get back to me.

Meanwhile, the Nurse Practitioner and the Neonatologist came to do rounds. They said that he is doing very well today. They took out his IV and bumped up his feeds to 34cc. The Neonatologist also said that as soon as we can get him nipple feeding at every feed he is good to go home. I started cheering inside when I heard that. After he left I asked the Nurse Practitioner if we should he worried about his little non-breathing episodes anymore. They seemed to have been a huge deal the last couple days and now they don't seem to even be a concern. He said that Jase is getting to about the age that some babies are born at and they are able to go right home and that most likely once he has his feeds down then the breathing won't even be an issue. I was cheering inside again! He also said that babies all the sudden just get it. Almost like a light turns on and their little baby instincts kick in. I can't wait for that to start happening.

A little later on he came back in and said that they have looked at the ultrasounds and it looks like there is a little white spot (according to black and white and gray ultrasounds) at the very front of his brain that they want to investigate further. He said that mostly likely when he was going through his surgery and fighting his infection he could have developed this spot. He said they have already ruled out that its a cyst and its definatly not going to affect his motor skills. He also said that if he was going to have a spot on his brain this would be the best place to have it. They aren't concerned, but just want to make sure its all OK. They will do an MRI on him next week. My nurse reassured me that if they really were concerned about it they would get him in for an MRI tomorrow, but since they are willing to wait she doesn't think it's any big deal.

I feel like today was a really good day. I feel like I really got some answers. I don't know if I just asked the right questions or asked the right people, but I came home feeling really good and optimistic about everything.

While I was holding him today he was wide awake. Usually when he is in my arms he sleeps, and the second I put him back in his bed he wakes right up. It was fun to hold him and talk to him and watch him look around the room. I wonder what he thinks as his eyes wander.

I was kind of at a funny angle taking his picture so he looks bald and his forehead goes on forever. He looks so much like Kylie did when she was a baby. Sometimes when he sleeps I look at him and I swear I'm holding her.

I have a picture of Kylie making this exact same face with her lips .

He LOVES his binki and he sucks on it pretty hard. I think its so funny how huge it is compared to his head.

I played with his hair today and gave him a mohawk. It's getting pretty long over his ears and I wonder if it would be inappropriate to bring my clippers in for a little trim.

Two Steps Forward One Step Back

I have learned a lot during the last month or so. I think patience is the biggest thing. I just hope I am really learning it well so I never have to be patient again!! I have had a rough couple days. Through this whole experience I have tried to really focus on the positive things and remember all the things I have to be grateful for and we have had amazing things happen and I am so grateful at Jase's progress and the way everything is going, but sometimes I just get onery about it all. I am finding myself being really jealous of new moms who get to take healthy kids home from the hospital and day after they give birth. I went to a parent class today and we went around he room and everyone introduced themselves and told kind of what was going on with their baby and from the sound of it I have the least to worry about, but sometimes that just doesn't make it any easier.

On Monday I went up to the hospital to see Jase and he was having a rough time with his heart rate and breathing. He would quite breathing and then his heart rate would drop. It happened several times and it had been going on all day. They turned up his nasal cannula hoping the air flow would help.

The therapist came back and helped me breastfeed him. It was only kind of awkward. Not as bad as I had imagined though, thank goodness! I actually feel more comfortable doing that then bottle feeding him. He did really well during it. We think he probably ate (is that the right word?) about half his feeding. He seemed to pace himself a little big better and we didn't have to force him to breath as often. He had a little bit of a hard time after with his reflux. They have started him on medicine for that so hopefully we can get that under control as well.

Yesterday morning the Nurse Practitioner called and said that during the night Jase had 21 "episodes" where he would brady and desat (his heart rate dropped and he stopped breathing) and they think that it may have something to do with his feedings. He seemed to be having a really hard time with his reflux and so his first instinct is to protect his airway so if his milk is coming back up he closes his airway, stops breathing and his heart rate drops. The doctors decided to stop his feedings through his feeding tube and he is now back to IV feeds. His nurse said she can tell he doesn't necessarily like to be fed this way. I don't blame him. I am sure it feels good to have a full stomach. They also gave him blood to help his iron. I feel like we just took a step back. It's been a long time since we have been at this point. They also took him out of his open crib and put him in an open warmer bed to help his body temperature. His primary nurse today said she thinks they tried to do too much with him all at once and he couldn't quite handle it!!

Today I came in and found that the less than attentive nurse I had a few days ago was assigned to him again. When I walked in she said, "Are you his mom?" I said, "Yes" and she said "I am the nurse taking care of your baby today." And then she turned around and left the room. I am left standing there just looking at him not knowing what has been going on. I notice a new IV in his hand and I have no clue what they plan on doing for him considering the last few days events. Another nurse taking care of another baby I think noticed that I was just standing there not knowing what was going on came over and tried to help but she didn't really know what was going on either. I left right after that to go to that parent hour class and thankfully when I got back my less then attentive nurse was leaving in the middle of her shift and Jase got a new one.

I admit I was thinking really bad thoughts about that first nurse all day until the Nurse Practitioner came in and said that this morning she suctioned out a whole bunch of gunk from his nose and they are wondering if maybe that is some of the reason why he hasn't been breathing as well. He has a nasal cannula that blows air in his nose and that could be the cause of the gunk. She said at this point it's just a guessing game and they are just trying to eliminate different possibilities. Personally I would be extremely grateful if it was just that easy. I would much rather that then have it be because of his eating. They aren't ready to totally take him off the cannula so they put in a high flow cannula that has humidity to help.

They are putting him back on full feeds, but are going to continue to give him vitamins. (That's what the IV in his hand is for.) I have been told that a lot of what we are dealing with right now he will eventually grow out of. Once again it's all just a matter of time.

I love that little boy so much! Some days will be good and some days will be bad, but in the end when he is healthy and happy and we get to take him home it will all be worth it!

Happy New Year

Jeremy and Kylie just left to go back to St. George. Jeremy is taking Kylie to Arizona to spend a couple weeks with my family there. I am sitting here all alone and it stinks!! I hate it when Jeremy has to leave and it's ten times worse when Kylie goes with him. I keep telling myself this will all be over soon enough and it will seem like a moment in time.

Jeremy, Kylie and I celebrated the new year by sleeping! How lame, but we were all exhausted. I woke up at 12:30 just a tiny bit disappointed we missed the ball drop at midnight. We did happen to watch it fall in New York at 10 so I guess we'll just have to count that as celebrating for this year.

I am so grateful that Jeremy's parents come up to visit us. They were so great so take Kylie wherever they went so I could spend time at the hospital. Kylie was able to visit her great grandma Urie and her great grandma and grandpa Felix in Logan along with some cousins. She loved swimming at the hotel with grandpa and was very sad when they left.

We have had some pretty exciting things happen the past couple of days. Jase was moved from his closed isolate to an open crib which means he is able to keep his body temperature up without any help. It's funny to see his tiny little body in what seems like such a big bed.

On Friday I worked with a Therapist to feed him from a bottle. It's a pretty intense process. I first have make sure he is good and awake. If he is then I have him suck on his binki for few minutes to get him ready. Then I have to make sure I am holding him kind of on his side with my hand under his neck so I can feel him swallowing and breathing. Then I have to get him interested in bottle. Once he starts sucking I watch and count his swallows, not the weak swallows only the good swallows (I really can't tell the difference between the two, but the therapist would try to point them out to me) and then if he doesn't stop for a breath after about 5 swallows I have to stop him and make sure he breaths, and I have to do that before the monitor beeps at me telling me he isn't breathing. I have to watch his lips to make sure they don't turn blue and his face to make sure it doesn't turn pale. He's a really good sucker he just need to remember to breath. Despite all that we were able to feed him 20cc (30cc is a full feeding) before he was tuckered out. My favorite part is the end when I get to burp him (he's pretty impresssive there also) and hold him up against me for a half hour while the milk settles in his stomach.

On Saturday I had a less than attentive nurse and was only able to get 10cc down before he was wiped out. I was to stressed about his breathing that I don't think I was as aggressive as I could have been. It was scary doing it on my own, but I love all these new things he is doing. Each new things makes me feel more and more like his mom. I actually get to do things for him and in a small way take care of him. I am so grateful for his progression and the way he is developing.

Kylie loves the walkway with the huge windows between the hospitals

and she liked this statue so much she gave him a hug. ( too bad I caught her just as she put her arms down)