January Continued
          We had not heard anything about the sleep study results. At first the car seat lady called last week and said we were gonna need to use the car bed because of the results of that sleep study. I was a little crushed over that but thought I'm not even gonna pay attention to this chick untill I talk to the NP from pulmonology. Then the next day the "apnea nurse" from pulmonology called and said this sleep study was worse and we could talk to the NP about it more this week when we had our visit. The apnea nurse went over the AHI numbers (which is like putting a number on the degree of his obstruction) and they were increased by about twenty from the first sleep study done in NICU.
         I was crushed. I just soo wanted this sleep study to be better. I couldn't help it. The water works started again. What does this mean for us? Surgery? What would surgery mean? I had heard that would mean a nasal intubation. I started stressing again cause his nose is so little. When we were waiting to see if Bricen was going to need distraction surgery and we were in NICU another mom let me come see her son that had just had the distraction surgery for his jaw done. He was nasally intubated. It looked horrible. And every since I've thought he can't be nasally intubated. His nose is simply too small. haha (I act like this isn't Riley that deals with 1lb babies and has equipment for babies as small as 1lb.) Once again, nurse judgement out the window, in comes mom. I was just tired. I just wanted Bricen to be better. That's all I can say about it.
          I called Marty at work. He said all the right things. Sent me a text later in the day with all the right things in it. I think it was later that same night when he got home from work and I'm all calmed down he shared that he was thinking about me while at work. I'm thinking this is going to be something sweet. He says he was thinking about how I sound when I am upset and crying and then proceeds to mock me and says "I'm just so saaad". Lucky for him, I had calmed down and found this just as funny as he did. So that is the joke now, "I'm just so saad." But at that moment, seconds after that phone call, I was. Just stinkin' sad.
          So we met with Speech Therapy and the NP from Pulmonology yesterday. Speech Therapy worked us in for another swallow study that same day so that we could see if Bricen was aspirating the thick. Of course, he was. Glad we hadn't continued trying the bottles twice a day for twenty mls for the last twenty days that we were suppose to be doing them. Sheesh. So our new game plan is to try droppers, about five droppers twice a days and then give the pacifier to help him get the food on down. Droppers with even thicker formula. (Of course continue NG feeds). Pulmonology says that they think his eating issues are still because of his small chin (and laryngomalacia can cause eating issues). Speech Therapy says they think it's because of him being premature. I don't know. I guess whatever the cause, the plan of treatment is the same. I'm somewhat relieved to know for sure he is aspirating thickened and have a safe treatment plan. I hated not trying the bottle like they wanted me to (I am a go by the rules kind of gal) but hated even more to risk the aspiration pneumonia.
          Appt with Pulmonology Nurse Practictioner. We went over sleep study results. She says even though his AHI numbers are higher and higher than what they were in NICU and higher than his December study (when he was sick) she thinks essentially the December study and this study was the same. (Because of the way they interpret the REM sleep time in there. IDK I don't have to understand it, just need to know the results and have a game plan.) She wants to do another sleep study next week (about 3-4wks from the previous one). I hate hate hate this idea. But I'm relieved because we talked about doing it with the head of the bed up (because when flat his reflux keeps him from getting into the REM sleep they need to study). I'm also relieved because at first when the "apnea nurse" called to tell me results she said she wanted to do a repeat sleep study for 5-6hrs!! NP says probably can just do 4 hrs again.    
          We also talked about the car seat portion. I confessed my sin, that we had been using the upright car seat for the ride home from the sleep study and the ride to Riley that day and he seemed to do really well in it. She said he desat a little during the car seat portion of the sleep study. I am not putting a lot of trust in that portion of the sleep study results because of the screaming for 15-20min that he did before it. All I know is when I put him on his belly now in the lay down car bed (car seat) he does not seem to tolerate it. When I put him in the upright one he is happy as can be. They still suggest the belly one until we repeat the sleep study. He came home in the upright. If he didn't have the monitor on and I wasn't riding in back with him the whole time I'd never do it. But with the monitors and considering that we go to and from Dr appointments, we are sticking with the upright for now.
         On a good note I guess. We talked about surgery and the malacias. She said he is not close to talking about surgery for those two things. So I guess it's good those aren't so bad, the laryngomalacia and pharyngomalacia, that we aren't talking about surgery right away. Hopefully he will grow out of it. She said usually after about four months they start to see slow improvements. Also on a good note, Bricen had started having the bad vomiting/reflux again and she pointed out (and idk why I hadn't thought of it) that he has gained weight so maybe he needs his dose of prilosec increased.
          The nurse that weighed us in pulmonary (weight comes up in kilograms) said that's 8lbs. I start to stress because that is hardly any weight gain at all. I do the conversion myself and it's 8lbs 12oz. Idk if people are just too busy, careless, or just stupid. But I'm getting a little over the small stupid stuff. Gonna have to work on praying for help on letting them go. I don't wanna be the mom that chews everyone out.

 Such a goofy smile. Gotta love it.

 I returned some duplicate gifts and used the money towards a stroller. I was so focused on finding one with a big basket on the back to hold his monitors/suction etc that I kind of forgot that he is a little guy. Poor guy can barely see over the tray in front. We used it yesterday for our Riley day. I carried Bricen most of the time but at least we weren't trying (unsuccessfully most of the time) to find a wagon.

Of course you love your mommy :)

          On the way home from work Sunday night idk how to explain it other then I was just so ready for things to be better. I'm ready. While I'm beyond grateful I can stay home with him and for his progress I'm ready to have a healthy baby. I don't want the majority of my calls in the day to be from Riley or therapy or homehealth. I'm just ready.
          And with that, I think we are caught up to present day. woowho.

January 2012

          Only a month away from being caught up! Yay. January has been a series of follow up testing and appointments. I take lots of random pics of Bricen. Pretty much, if it's an outfit he hasn't worn yet I take a picture of him. We have already packed away what seems like a lot of clothes. We don't go anywhere but Dr appointments. I realized the other day that he was going to have a lot of clothes that he will have grown out of and has never gotten to wear if I don't start dressing this kid in some actual outfits while here at the house. Sleepers just seem so much easier., even for Dr appointments. They keep him warmer because pants legs aren't coming up and until recently zippers were rough because of him laying down in the car seat. This was on the way to a follow up appointment. January 3rd. Very mismatched but still so cute, if I do say so myself :)

Bricen loves watching TV. I already feel like the bad mom that lets the kid watch too much TV. But if it makes people feel better Bricen doesn't do anything for a long period of time.

 Trying on the kicks...still too big. Love hims wittle bird legs. That's right, I just typed in baby talk :)

Between tube changes. I honestly do think his chin has grown.

 Sweet baby.

 New sleeper :) A 3mo sleeper too! Bricen is made like his daddy. By the time the width fits him on his clothes he is about to grow out of the length.

This was before the swallow study. We failed the thin liquids. Didn't really get to try thickened because by then he was so hungry and ticked he wouldn't even try the bottle. I was more than disappointed. I thought because he was doing so well with the pacifier we would have good results. Once again, wrong. :) They tell me they are totally different. Despite not really getting to see if he was aspirating thickened, speech therapy wanted us to try up to 20ml of thickened twice a day.

Although I didn't feel comfortable we probably did this a total of four times in a month. The first couple times he was just ticked because he couldn't get anything out of the nipple. He worked for about 15min and got three mls. I tried the Y cut nipples and at least he was able to get something out but there at the end he would cough and gag, etc. I ended up telling her that he was gagging and coughing and we just didn't feel comfy doing it until we were able to get another swallow study.

This is a bad picture quality but it does a good job at showing how he hyper extends that neck in order to open his airway. This is one thing that OT/PT is going to work with us on. We still want him to be able to breathe, but want him to be able to hold his head right once that airway is corrected or gets better.

 Just seeing if he was big enough yet to wear the onsies. Of course, we had to be fair and check on both Purdue and IU.  Bricen hates it when I try clothes on him but how else are we going to know if he is big enough to wear certain things yet?

 

This was towards the beginning of January. The hand is a blur because he moves his hands and legs pretty much non stop now.

 This was also the night before the sleep study. I had been praying like crazy that he would just sleep for this study so we could get some quality results. I was trying to keep him awake a lot that night but of course of all nights he wanted to sleep. Stinker.

         Jan 17th, day of sleep study and bronch. We just hate sleep studies. Bricen did sleep for this one.

This was the first time I have been disappointed in Riley staff. Everyone so far had been great. Even the NICU nurse that looked like she was there for the Miss America pageant every stinkin' shift she worked (come on nurses, everyone has a hair up day every once in awhile) that I tried to hate but couldn't cause she was so stinkin' nice. (Give me a break I had just had a baby, highlights had grown out, wearing sweatpants most days, etc etc) :) :)  This staff was ridiculous. They kept making a big deal because the rail of the crib wasn't up. In my world I went off on her. Brianna says I was too nice. I think it's the most upset I've ever been with a stranger. By the time I got done telling her how I felt I was shaking from head to toe. I don't even remember what all I said I was so frustrated and talking so fast.

          Keep in mind how horrible the last sleep study was so we had some anxiety built up before this one. We had just had the bronch done and told he does have the laryngomalacia and pharyngomalacia so my mind is on that. Just thinking what that means to us, for us, etc etc. Bricen is having a hard time falling asleep and staying asleep (although ten times better than the previous one-Thank God) so I have the rail down patting his bottom, etc. They kept coming and putting it back up saying it was "hospital policy". I said Ok, but if I need to get to my son I'm putting it back down. And I did.

          About the third time she came in to put it up I'd had enough. I just let her know that this was the third sleep study we have had and each time about three people work with him during them. That makes a total of six previous people that have not had a problem with this rail being down while I was standing by it yet they were making a fuss about it and if they wanted my son to sleep for his sleep study I was going to need to be able to get to him to comfort him. I was nice and said I realized she was following her "hospital policy" (because she'd told us ten flippin' times) but this was ridiculous and someone was going to hear about it. I ended with saying "It is a rail" about three times. Funny thing is, as she was leaving I was already feeling bad (tough as nails haha)and I thanked her as she was leaving. Brianna and I had a good laugh over that later. I'm sure you can all figure out what I'd like her to do with her "hospital policy".

          Then it was time for the car seat portion of the sleep study. The CO2 sensor had come off. And it took these girls a good 15-20min to get it figured out and positioned just right. The whole time Bricen is screaming. Probably not going to get quality results after that now are we? No. Maybe they should study those hospital policies a little less and spend more time figuring out how to trouble shoot their equipment. And when the gal went out to get someone (who I assume had more experience) to help she said she thought he was trying to "wean them" on their own. Then there was the fact that he had to go from his back to his belly (instead of back to side so that we are making a smaller move and hopefully stay asleep) even though they couldn't give me a medical reason why. I could go on and on but I just don't want to. We will just say it was a whole lotta ridiculousness and at my son's expense. And unfortunately it's not the last time we will be there. I'm gonna try to put it behind us and move on. Mostly because it still ticks me off to talk about it.

Thanksgiving Day to New Years Eve

          The first time I left Bricen after we got out of the hospital was to get a haircut and color. It had been so long since I had even drove myself. I was just enjoying the Christmas decor and being out and about. (I did try a new hair salon here in Franklin instead of my normal one in Greenwood/Indy because it was literally five minutes from the house.) I left the house saying I was getting rid of the highlights that had grown out and going to get the hair colored all the same color as my roots. I'm not sure what happened once I sat in the chair but I came back with dark hair. The hubs was very surprised but I liked it.

          December 22 we took Bricen to the Dr. He always sounds congested because of his spitting up, reflux and (what we now know) laryngomalacia and pharyngomalacia. So when he started getting congested I figured it was his same ol' same. Eventually it became apparent that it was actual nasal congestion instead of his norm. We had a repeat sleep study December 21 and seen pulmonology afterwards. That sleep study was H O R R I B L E. I almost cancelled it and looking back I should have. Hopefully it was just because he felt so bad and we never have a bad one like that again but he pretty much screamed the entire three hours. This may sound stupid but I think it was almost traumatic for both of us. But the staff that day was great.

         Day after the sleep study and appointment with pulmonology (Dec 22) I felt like Bricen's retraction were a little worse than his baseline. Pulmonology had already warned that he might need some breathing treatments to just help him get past the "cold" and not to consider it a set back. So off to his pediatrician we went. He sent us on to Riley ER. I felt like this was stupid. His retractions weren't that much worse. And I thought he was probably just being very cautious and we'd end up going back home that night. Wrong.

          They swarmed this baby like AICU staff swarms a code blue. Of course this made him scream and of course his retractions looked horrible by then. Bricen also has what's called a pectus excavatum which makes the retractions look worse. It pretty much looked like his chest was sinking in so far when he was breathing that the front was touching the back. I kept saying Ok, but you should know he has retractions on a regular bases. Although I didn't see it myself I guess one nurse had quite the attitude about this. I hope she stubbed her toe on the way to bed that night. They agreed to let me hold him and get him settled down. We started the vapotherm and they decided we would wait and watch instead of intubating. We were so close to being intubated again! I so did not want to be at Riley again. It was three days away from Christmas. I did not want to eat McDonald's three meals a day, did not want to go back to living like we did for five weeks in the beginning. In the end we were admitted to the pediatric ICU and it was right where we needed to be.
          They took out the NG to help with his breathing and of course kept him NPO in case we were going to have to intubate. I thought for sure this kid was gonna be screaming bloody murder because he'd be so hungry. Poor little guy slept and slept and slept. He was just sick. He was off vapotherm by the next day and just on regular nasal cannula. While I appreciate them asking my input (and glad they listened to me in ER) it's a lot of pressure when they keep asking if he is back to his baseline. (This is where nurse and mom start to doubt each other's judgement.) I joked and told Bricen Mommy was gonna hunt down whoever gave him those germs and kick their butt!!
           We were there for Christmas. The fam brought a couple crockpots and  chicken nuggets  :) and we had a small gathering in the waiting room Christmas Eve. This was the same unit my sister died on 15 years ago. I didn't even realize it at first. It is crazy how life brings you full circle sometimes.

If you look closely you can see where his chest is sunk in the middle.

This was Christmas Day. Of course, Bricen had some outfits for Christmas Day and at this point he was still not allowed to wear clothes. So we hung them on the bed instead.  

I'm not sure who was more excited when we finally got the okay to wear clothes, Me or Bricen.

We got out of PICU that same day. Moved to the Pulmonology Unit. This unit was amazing. I had signal (hardly ever had signal in NICU or PICU), there was a futon type thing in the room, a recliner, bathrooms for parents with showers, a fridge, two big screen t.v.'s, and a desk area. It was very nice but at the same time I did not feel like I could leave Bricen like I had in the PICU to just step away, walk downstairs, shower, etc. These nurses weren't bad by any means. Their patient assignment was just heavier. That was okay, I'd trade a shower and going downstairs anyday for a move out of PICU. We learned that his pulmonary hypertension that he was born with was gone but the two holes in his heart had not closed yet. Just something else we will keep an eye on and wait and see if it takes care of itself. But on the positive side at least it's not so bad we are needing surgery for anything right away.

          We were released Dec 28. The sleep study done the day before the admit was worse than his first one done while an inpt in NICU. But we wondered if it was worse just because he was so sick or was it really worse? We were dismissed with another sleep study scheduled, and a bronchoscopy scheduled for that same day to check for laryngomalacia. We also went home with a feeding pump to use instead of bolus feeds with a syringe. We found that by better controlling the rate he was tolerating the feeds better. It also made it so much nicer, gave us more free hands during a feed and a means to stop the feed if he started throwing up during a feed.

          We celebrated Christmas New Years Eve. Marty volunteered to make chili (I think he just wanted to use some deer meat). We had an unconventional (normal is so overrated) meal but all got together and opened presents. Bricen finally got to wear his Christmas clothes.

           It was kind of nice to celebrate Christmas on New Years Eve and kind of bad. Unfortunately, everyone but Bri and family had things to go to so it wasn't the same as usual as far as getting to stay and play games, etc. But it was still nice and Brianna and her family stayed that evening and we played Minute to Win It and watched the ball drop.

          Chelsi and Chris got engaged right before Christmas and we are so excited for them! God has given them a gift in each other and it's one I'm sure they will not take for granted. Chris is a great guy to say the least and will be an awesome addition to the family. The wedding isn't for like ten years (seems like haha) but we are still excited for them.

           It was around this time I was trying to figure out what I was going to do about work. My maternity leave was up Jan 2, 2012. I was quickly figuring out that there was no way I could go back to work on my original shift of week nights (three nights out of Monday thru Thursday). If I worked nights I'd never sleep because of all the follow up testing/appointments/therapy Bricen was going to need and for the same reason I could not do days. With that aside, even if it worked out that Brianna could watch Bricen those days I work (which it didn't) that would not be fair/feasible for Marty to be the one up with Bricen during the night and try to go to work those days I worked. He is not a normal baby that sleeps like other babies. If you take the night shift for Bricen, chances are you are up with him. 

         Long story short no one would be getting any sleep and we wouldn't be able to make all these appointments. It was a decision I did not come to easily and one that I prayed over but I decided that weekend days would be the only way to still provide us with additional income and still allow us to meet Bricen's needs right now (and survive ourselves). My mom would allllways remind us to put God first and everything else would fall into place. (That and to watch out for black ice and the entrance ramps and turning lanes were always slicker than the rest of the roads haha) This weighed heavily on my mind as I was trying to figure out what we were going to do. But in the end I think JC gave me a peace about it. Bricen is not healthy enough for us to even go to church right now even if I wasn't working Sundays. When he does get healthy enough we are gonna have to go during the week to things and go from there. Hopefully this little guy will start to see some improvements in his health in the near future.  

         

November 18 - Thanksgiving Day
          The first few days we were just getting into a routine. We still had rules (that the Dr's suggested we carry out) that we hoped would help to keep Bricen as healthy as possible. We were right in the middle of flu season. No school age kids were allowed to hold Bricen (they can just be a carrier for so many germs),  and everyone was asked to wash their hands when they came in the house. Of course, no one with any cold symptoms was welcome and if we had several people over no one was allowed to hold Bricen. It just is not good for him to be passed from person to person. Bricen adjusted well. He didn't sleep very well the first night. The nurses warned us that it can be a little shocking to their system to go from the noises of ICU to a quiet house. The second night was better. Still to this day Bricen doesn't sleep well or for long periods and if he does I start to worry. :)

          We came home with the apnea/bradycardia monitor, all his NG feeding supplies and a suction machine. Bricen would projectile vomit out his mouth and nose and then he would try to breath in through his nose and there was fear that he would end up with aspiration pneumonia. Hence, the suction machine. Also, because of his anatomy it was better to have a means to suction out that nasal passage. We change his NG tube every week (this is horrible to say the least). As a nurse I knew how to do this on adults, put more than a few in, but it's different when it's your baby. Sucks. That pretty much sums it up. But, I realize he could be so much worse. For example, we could be suctioning a trach from home.

          I'm gonna take a moment to point this out. I realize Bricen is not the worse case scenario. There are parents out there that face so much more than what we face. Most days I am able to keep that in perspective. But when it comes down to it, our situation is still hard in it's own way. With that being said, our blessings do not go unrecognized.

          We had to make some adjustments to Bricen's formula. It seemed like more was coming up than going down with his feedings and projectile vomiting. It takes him a good 5-10 min to recover from those vomits. He pretty much gasp for air until he gets calmed down. Then it wears him out so much he is super sleepy after. And if he didn't actually vomit he would just sit there and dry heave. Hate watching him go through that. We went from Neosure 27 calorie to Pregestimil (that vomit smelled like raw potatoes and made me wanna puke) back to Neosure 22 calorie (which is how it comes) and finally we switched to Enfacare 22 calorie. This along with some high dose Prilosec fixed the majority of the vomiting/Reflux. We would of course keep his head elevated and not move him after he eats for awhile. Poor kid wasn't getting much sleep. He would eat, vomit and get a short nap in and then wake up before time to eat again cause he was hungry. We feed every three hours till we get this baby fattened up! :)

          Lots of thought went into Thanksgiving, if we should have people over or not. I asked pretty much every nurse and Dr that came my way before we were discharged what they thought. Family came over, no one came if they were sick and only Bri, Marty and I held him that day. Bri pulled her weight and mine. Marty's family stopped by for short visits as well. Enough writing, lets see some pictures!

 None of Bricen's younger cousins have held him and this was the first time Brett had seen Bricen. 

Love the pictures between tube changings. Can't wait for the day we can see his little face with nothing on it everyday.

 Papaw Dennis holding Bricen for the first time :)

Bricen with his great (and we do mean great) Grandma Delpha. 

Happy Turkey Day!! (Thanks for the outfit Aunt Jodi!)

          What a support system we had! I was so lucky to have my husband and my sister that I could send on to Riley with Bricen. Brianna had been to every high risk OB appointment with me so she was a great resource for the questions that the doctors were no doubt going to ask and I was glad that she was there for Marty.

          That cocoon is my husband, Bricen's daddy. Him and Bri had already scoped out the place by the time I got there. They knew which waiting room was the cold one, which was the least busiest, etc. My aunt and Marty's mom kept me company the next couple days. While we joked about the fact that Aunt Karen would fall asleep in the middle of me having a crying breakdown, it was still nice of her to stay with me. It was at night after the visitors had left (and Aunt Karen was counting sheep) that I would have my breakdowns. I am not one to show emotion or cry in front of people so maybe I needed those two nights to get myself together so that I could be strong for Bricen the next month.  I stayed in touch with what was happening at Riley thru calls from the Dr's and text from Brianna and Marty. Dr Torine, who I later met in person, was awesome. She would always say, "Dad said to call you, Mom." Marty came to see me the 17th. Only a day after Bricen was born. I can remember just anticipating him coming and choking back the tears. I've always been that way. I can hold my crap together with the best of them, but once I am around someone I'm able to let my guard down around it's allll over from there. :) This is what he brought me...

Can you blame me for losing it when I saw him and this little hand??? Alysa was the nurse that made this for me. It is my little guys hand. Later we heard from another mom in the waiting room that she had asked her nurse why they hadn't gotten a hand like this and that nurse had replied that they usually only do that for babies that they don't expect to make it...Guess they didn't know what kind of strength this little guy had running through his blood. :) :) And how many prayers were going up for him. God was probably like, "Alright already! I got this you guys!"

(The lasagna was yummy too and very appreciated. Thank you to Lauren and Celeste.)

          I received lots of pictures and text from Bri and Marty. I clung to those pictures. I looked at them over and over during those nights I was coming to terms with things. Here are a few of them. 

          The 17th the Dr came in and left it up to me if I wanted to go. It was such a hard decision. Probably the hardest I've ever made. Dr Torine had called to inform/get consent to put in another chest tube. Bricen's original one had come out during transportation and they had just been watching to see how he did. It had become apparent that he needed another one. I was still exhausted and in my darkest hour I was fearful that something would happen and we would lose him before I even got to Riley, got to really see him. Even as I am writing this now I can't help but fight tears. Such a horrible time. But look how far we have come! In the end I stayed one more night. Countless times during those couple days I simply said "Lord, he is in your hands."

          I was released the morning of the 18th. I remember waiting on someone to go get a wheelchair. Dereck and Tiff were waiting with me. To hear Dereck tell it, I apprently thought it was taking too long because I called out to someone walking by the door to have them check on that wheelchair. :) I was so ready to go and I was ready to go right that second. I had barely slept the night before I was so anxious to get to my baby boy. Tiff made me cinnamon rolls for breakfast. (love her)



          And for some reason I can't get this picture centered. But my blog followers are just gonna have to get use to that stuff because I'm sure if I took the time I could figure out how to fix that but...we are doing good to get pics up here with this high maintenance baby. :)

          Camping out at Riley is not fun. It's especially not fun after a C Section. Even though I eventually got a little aggravated with it my family was very good to me. :) It was a wheelchair for the long walks for me for the first few days.

          So we are at October 18, 2011. I am getting ready to see Bricen for the first time. He had been switched to the regular vent from the oscillator and he was handling it well. As our stay lengthened and I watched the two babies in our module that had been there the longest go off then back on the oscillator I was able to really appreciate this even more. I am so thankful Bricen was only on it for a short time and able to come off and stay off. Genetic testing had been done but no results yet. Bricen had a small brain bleed but it was very common and usually no complications from it, they would rescan on day five. Here is a picture of me seeing Bricen for the first time (other than the two seconds before he was transported). I told him I was his mom and I was sorry it took me a few days to get there.

          Dennis is beside me in the picture on the right. He had been out of town and had just gotten in that day as well. For the first few nights I was there we were lucky enough to get a Ronald McDonald room downstairs in the hospital. Those were some horrible nights but also (and I'm having a hard time coming up with a word to describe it) I guess maybe just special  nights between me and Marty. It was like nothing else in the world mattered except being there for our baby boy and each other. Later that week we got a room at the Ronald Mc Donald House a block away. When we left that first night to go a block away I was a mess. :) But he was in the best hands. I joked and said they were the most expensive, smartest babysitters a mom could ask for.

October 19, 2011

          With this day came a whirlwind of emotions. At the beginning of the day Bricen's heart rate was dropping but coming back up on it's own and his right lung was partially collapsed. They did some percussion and it was decided maybe it was a vagal response to his breathing tube making him brady down. On a good note, he was extubated on this day!! Yay and praise God. Marty and I were both moved to hear those first cries come out of his little mouth. Just another thing I vow not to take for granted with this little guy. Towards the afternoon we were told that the genetic testing had come back normal. The low fluid must have stunted Bricen's growth and that's why his long bones were small. Even though small, they were still in proportion to the rest of his body. Because of the growth restriction Bricen was the size of a 30wk baby instead of the 35wk baby that he was. Overall, it was a great day.

October 20, 2011

          Lungs looked better and the chest tube was removed. But better than that, I got to hold my peanut that day. Indescribable feeling. I felt like the luckiest girl alive. I felt so lucky that God chose me to be this little guys mommy.

October 21, 2011

          We only got to hold Bricen once a day at this point. His health simply couldn't handle anymore. Marty had asked when he would be able to hold Bricen and I had asked the nurse that same question. She said he could hold him that day but he'd have to take his shirt off and do the skin to skin (kangaroo) holding like I had. Dad had no problem doing this if it meant holding his little guy.



Marty said that was the heaviest three pounds he had ever held. :)

October 23, 2011

          Marty went home so that he could go back to work the next day. I was tore up about him leaving. I knew he'd be back during the week, in the evenings after work and then to stay the weekends with me. I was just an emotional mess. I made it thru it though. :)

October 24, 2011

          Bricen had clothes on when I walked in the module on this morning!! Something about it just made things all seem so much better. I cried. It just somehow made him more of a baby. That may sound crazy. It's like you prepare prepare and prepare for a new baby, especially as new parents. A big part of that preparation is buying all these cute clothes. I just wanted to use all that new stuff, just to be "normal". He was also on half a liter nasal canal and tried a bottle for the first time. He took 4ml. (We were allowed to attempt up to 10 ml twice a day.)

          We continued to get good news as the days went on. October 25 we were told brain bleed was gone. October 27 Bricen reached 4lbs. and he came off the nasal cannula. October 28 was our last day with Dr Torine. The new Dr was rotating in. That was scary. I had come to trust Dr Torine and I was comfortable with her. Maybe she was too much to live up to because the next guy was good, just not great like Dr Torine. :) I was able to do most of Bricen's care and I was very grateful for that. I just wanted him to know who I was and not have a different set of hands touching him and caring for him everyday. So out of the eight diaper changes and feeds I was able to do five of them. I would stay and do his eleven pm feeding and wait for him to go to sleep and then be back the next morning between nine and ten. I think just having the C Section made the exhaustion worse. I was just soo tired. But I enjoyed all the time I got to spend with Bricen. I loved picking out his new outfits for each day and doing any and all the care that they would let me provide. I am thankful for the family and friends that brought up some preemie clothes that allowed me to be able to do this.

          As the days went on I was allowed to hold Bricen more often. Of course we had to keep an eye on his work of breathing, retractions, O2 sats and respiration rate. And I was able to give him baths as well. I liked to sing to Bricen. We were the last bed on the end of the module and it provided some privacy. I was thankful for that, although I'm pretty sure it wouldn't have mattered where we were, I would have sang to him anywhere. I liked to sing lots of song to him but my favorite was Dixie Chicks, Godspeed and He's got the whole world in his hands. Except I would sing he's got little baby Bricen in his hands, then he's got Mommy and Daddy in his hands, then Kita and Scruffy. I told Bricen all about his room and his puppies at home waiting on him. Here are some pics from those days.  

 

                   

November 3, 2011

          We increase the amount of food he was getting and we "popped the top" on his incubator. We liked to call it his castle or his convertible.

November 4, 2011

We moved to a big boy bed!!!

          Loved this. Also on this day I took a side profile picture. Up until this point I hadn't really looked at Bricen's chin. We knew it was small and that once he got big enough, gained enough weight we would have a sleep study then let surgery evaluate him and decide if he would need the distraction surgery. This picture helped me to see things were what they were (or could possibly be).

November 10, 2011

          Oh what a day. We had our sleep study that day. I can't lie, I really wanted to pic him up and run. He was not a happy camper with all this stuff on him. They found out during this sleep study that he obstructs in all three positions, his side, back and belly. His back was worse. Brianna was in the waiting room for this sleep study. I almost told her to switch me places, I couldn't handle this. Even tho he is calm in these pictures, he wasn't the entire time. But just as quickly as that thought crossed my mind I realized that was the weak way out. If Bricen had to go thru this I was going to buck up and be there for him. While it sucked watching him go thru it, there is no way I could sit in a waiting room and not be there for him. Sleep studies aren't usually horrible. I just had a panic moment, I kept thinking his nose is so litlte. You put all that in it and then wanna test how well he is breathing!!  I was having a weak day.
November 12, 2011
Took all ten ml from the bottle. We were using a special bottle that babies with a cleft palate use.
Speech Therapy had been working with us on pacing, watching his signs of distress, etc.

November 16, 2011

Bricen would sometimes get upset when I left. One of the nurses made this picture and hung it up. It was suppose to be me.

Had a swallow study done. We failed and we were cut off from the bottle. Bummer. They said it was probably cause he was a preemie and his chin didn't help. They also said that for each swallow a baby should get 1ml down. Bricen swallowed 69 times and got 8ml down. He was just having to work way too hard. This also helped to shed some light on the reason his weight gain hadn't been stellar lately. Also told us why he falls asleep during feedings (We later heard that he has two holes in his heart which no one had told us and this of course adds to his fatigue.)
November 17, 2011
Preparing to go home. Bedside car seat study. Had to go home in a car bed, but we would take him any way we could.

November 18, 2011
Home home home :) :) :)

This is what Bricen wore on the day he got to go home. I was scared but excited at the same time. I am a mom and I am a nurse but sometimes I think one can cloud the other's judgement (for ex: sleep study day). I had not left Riley except to go to the Ronald McDonald house. It was beyond wonderful to be home. No more community bathrooms, no more cold showers, no more showers with very little water pressure, no more living out of bags. I could finally sit and hold Bricen and drink something or eat something at the same time, I could watch tv and hold Bricen. I could finally spend more time with my husband and son as a family.



          There is no way I could get our grattitude for all the help, love, support (in many ways) and prayers across in words. I've asked myself many times how do you thank someone for praying for your son? It's such an awesome gift that there really isn't a way to thank someone. I'll try anyways. :) We greatly appreciate the food, snacks, love and support from family and friends and my church family. My sister took so much time out of her life, time away from her kids and family and was a stellar sister and aunt during this time. Even though I tried many times to convince her and Marty that I would be fine they decided I should not stay at the Ronald McDonald house (we liked to call it "Ron's") by myself. Bri took the most nights during the week and Marty came up on weekends. Chelsi and Brit did stay with me one night and Brilynn stayed with us one night.

          Katie Skillman and Bricen's Aunt Jodi gave up a couple lunches to run over and see us. Those were such nice visits because it was the middle of the day and no one else was there. They were able to just sit back in the Module and visit with me and Bricen and it was a good break for me on some long days during the week. Thank you, Thank you, Thank you to all those that helped us get thru that time!!