Thursday, December 17, 2009

Hospitalization #582

It wasn't really number 582 but it feels like it. So anyways we ended up not having surgery the day before Thanksgiving. We went to the main admitting area that we were supposed to go to before surgery and we let them know what we were there for and went and sat down. Ten minutes later the lady comes up to us and tells us that it was canceled and they had tried calling us before we got there but not to leave because the surgeon wanted to talk to us. We sat there for a half and hour and Dr.Curnow comes and talks to us and tells us why he had canceled it. He had been doing surgery for 36 straight hours and could hardly see straight, he didn't want to be doing such a complicated surgery in that state. Which was a good thing!

Brody had a cold for awhile and it got worse and he stopped eating so we took him into the doctors on the following Monday. They found out he had pnuemonia again(6th time) and was having a hard time breathing and wouldn't eat. He was admitted to the hospital at St. Alphonsus. AMAZING hospital!! We were there for a couple of days and then released. He is now on oxygen at night. He has surgery TOMORROW! Hopefully no cancellation because he really needs this surgery, we really don't want pnuemonia anymore.

Monday, October 26, 2009

Click to play this Smilebox slideshow: BJC
Create your own slideshow - Powered by Smilebox
Make a Smilebox slideshow

Blessing








Brody was blessed this last Saturday. It was a very sweet blessing! Here are some pictures of then and some other pictures. The one with the wrap like thing on his head are from his 72hour EEG. The lady who did it some how made it cut him all over and she also told us it was her first time. We were not so happy when we saw what his forehead and head looked like after she took it off. Now we know why he cried so bad the first day because she probably put it way to tight.

Also we went to the Pediatric surgeon to schedule surgery Monday, it was supposed to be this month. But he changed his mind again and said we will check up on him in 2 months. It's frustrating but his GI doctor will be talking to him(the surgeon) and hopefully we'll have the surgery sooner. He will eventually need it so we would like it ASAP so he can be out of pain and get his other hernia fixed. We also just found out about that one, I think he thought he told us about it. It is called a Hiatal Hernia. Anyway here are the pictures, enjoy!

Thursday, September 3, 2009

Pictures












Size one diapers

A little over a week ago we switched from newborns to size one! It seemed like that day would never come. He still fits newborn, it just doesn't contain his poop or pee. I can't wait until he fits into the cheaper sizes.

He has had a pretty nasty cold since last Thursday. Saturday and Sunday were horrible, non-stop wheezing and coughing but no runny nose still. So I have my mom suction him out because it scares me that I will do it wrong. We went to the G.I. on Monday and she said that he sounded like he might have stuff in his lungs so he got an X-ray. That showed that he had left lower lobe pneumonia and bronchitis. Poor little guy. They also switched his formula because he has allergies to milk. They gave me two types to try and he hated them both but would semi eat and then Tuesday he wouldn't eat at all. Finally that night I just gave him regular formula because he was so hungry. I left a message yesterday for the nurse and they called me back before they closed and said that they had 3 other formula's to try one was flavored with vanilla. Okay and let me just tell you how nasty his new formulas are especially because they aren't flavored! SO GROSS I cannot even explain it to you.

We went and picked up the formula's for him and he actually seems to think the vanilla one is okay. I think he will get used to it. I actually think it tastes better then his regular formula, no Iron taste to it. He looks really good for being so sick and he is just a happy guy. He will get an X-ray next week to see if the pneumonia is gone or not. We are just glad we didn't have to end up in the PICU again! I was going to post some pictures but it won't let me so I will do it some other time!

Sunday, August 30, 2009

Forgot to add...

When we saw his surgeon he did another biopsy in the office for hurshbrungs and it came back negative. No need for surgery to fix that!:)

Friday, August 28, 2009

It's been awhile...

So I have been meaning to update this but have been busy or to tired too.

July 8th we went to a down syndrome picnic. My Mom, Dad, brothers, sisters, Raul and I went. It was really fun and interesting to meet those awesome families that have the same little blessings in there lives. All the down syndrome kids LOVE to dance. They had an Elvis impersonator there and he did a great job. They had ponies, face painting, inflatable bouncers(not really sure what they are called), food and little games with prizes. It is so interesting to see the different range with down syndrome.

July 14th we went to St. Lukes Downtown for the 24hr probe to see how bad his acid reflux. That went pretty well, although he really doesn't like having anything shoved down his nose. But other then that he did great. Not so great for me, they don't really accommodate the rooms for sleep in parents.

July 16 he had a cardiologist appointment. It went FABULOUS! No more oxygen, we were super excited to not have to lug around anymore oxygen tanks. By the way I love his cardiologist Dr. Walker, she is amazing and never keeps you in the dark!

July 23 was his G.I. appointment. They didn't want to tell us over the phone the results they wanted us to come in and talk. So we therefore knew something was up. Barbie, his N.P.(also amazing), told us he refluxed a lot. His longest episode was something like 93 minutes no stop acid reflux. Poor little man. The report that they got, she let us read, said that he needed surgery or drastic medical intervention. They decided to try medication first. He was put on reglan to help him digest food faster. He was also put on Pepcid to neutralize the acids in his stomach so he wouldn't hurt so much. Reglan did have a side-affect of twitching, very rare though. But we needed to watch him for it. He had also lost weight down to 7lbs 11oz, he was 8lbs 6oz.

July 25 I thought I saw him twitch so I called the on-call G.I. doctor and he told me that he was fine and not to worry about it because I only saw it happen once. Anyways I had notice that he kept looking skinnier and skinnier. You could see all of his ribcage and collar bones. He also was not eating good at all and preferred to sleep. I was getting really worried.

July 27 I called the G.I. and told them what was going on and they told us to come in right away. We got there and Dr. Smith saw him and was really concerned. He had lost more weight and was just not happy. Dr. Smith said that he was really really skinny and that he had to think over what he wanted to do. He told us he was thinking about admitting him and having a feeding tube(NG) put in and doing a probe. He said he was definitely going to be admitted but he had to think about everything else. So we sat there for a little bit until he decided. I really liked that he took time to talk to the other Doctors and Barbie. So they decided that all of the above needed to be done. We went to the pediatrics unit and they put a feeding tube in and all the lovely monitors were placed on him. So that day we pretty much feed him from the feeding tube because he would not take a bottle and breast feeding obviously wasn't doing much for him but I still did it for 10minutes. They would come in and check his stats every three hours.

28th & 29th pretty much the same thing. They increased his feeds each day though. And he would actually take a bottle so not always fed through the NG tube.

30th we went down to pre-surgery for the probe at 5:15am. I was soo nervous and scared. It's so difficult knowing that you little 2month old baby was going under anesthesia for something like this. I had a very hard time keeping my emotions under control. We met all of the nurses and anesthesiologist that would be in there. It was nice because I had him asleep(he was not happy because he was not allowed to eat past 10pm that night) and this nice older nurse took him and said we will take really good care of him. Dr.Smith told us of all the possible things that could happen like an accidental perferation of the intestine when they took tissue samples for the biopsy(the biopsy was to test for hurshbrungs disease). He was also having a lung washing to see if he had fluids going into his lungs from his reflux, which was done by Dr.Beck(E.N.T.). We also met her she is super nice. She would also be checking his esophagus to see if any damage was done by reflux. This all would take 40mins to an hour.

So we went to the waiting room and it seemed like it took forever! We kept looking at the surgery monitor tv. And no change was made by his name. An hour had come and gone then 30 more minutes finally Dr. Smith comes out. He looks at us and looks around and asks one of the ladies that keeps tabs on everyone in there if there is a room he could talk to us in. This was my biggest fear because you know things aren't right, and the look on his face wasn't right. I was so nervous and so was Raul, we just looked at each other. While we were walking to the room he started telling us about how things went I think to assure us that Brody didn't die or anything. Once we got in the room he said that while doing the biopsy(taking the tissue samples from the intestines) he perforated the intestine. I started to silently cry and Raul just looked away and listened because he was so upset. He told us he caught it right away which usually doesn't happen, they usually go home without knowing and have to come back in symptoms of infection. He stopped right away when he knew what happened and called the surgeon. He told us this was the first time it has ever happened to him and he kept going over it in his head and there was nothing he could have done differently. I could tell he felt so bad. He said that when the surgeon got there in 15 minutes they would come back in and talk to us about what he was going to do.

Dr. Beck came in and told us how things went for her and showed us some cool pictures that I will post later of his esophagus and such. He esophagus was really red and irritated but other then that in good shape. His trachea was in a C shape instead of the normal oval, which means he has tracheomalacia. He will grow out of that but it makes the reflux worse. They did find fluid in his lungs and were going to have them tested to see what the fluids were. She finished talking to us and left.

Dr.Curnow, the surgeon, and Dr. Smith came in. Dr.Curnow told us that he was going to try and do laparoscopic surgery to stitch up the intestine but if he couldn't find the hole he would have to make a big incision and do exploratory surgery. All in all they said that the surgery would take and hour and a half. So we got to spend most of our day waiting. An hour and a half had come and gone and then 2 hours and finally Dr. Curnow came out. He told us everything went great he stitched it up no problem and they didn't need to do exploratory surgery. He said it took so long because he fixed his hernia under his bellybutton and made his bellybutton normal(he had had an elephant trunk looking bellybutton before). He told us that we would probably have to wait 30mins to see him.

30 minutes came and past finally I went and asked one of the ladies if he was ready to be seen yet and she was like oh yeah they just said that you could come back and see him if you wanted to. And DUH we wanted to. We went to post surgery and he looks so white and not himself. But I was SO happy to see him. He would kind of wake up and whimper and go back to sleep. We waited a little bit before they had the room ready in the PICU for him.

The PICU room is soo much bigger than the peds room. The nurses were one on one that night. Which was really nice. They told us that he probably wouldn't be able to eat for 2-3days and would be in the PICU for that long. When he woke up he definitely wanted to eat and he was in pain. It was so hard not to be able to help him. The one downside about that room is with all the monitors and IV's on him I was on a pretty short leash when I held him. He was also on the most oxygens he had been on sense he was born which was a little disappointing because he had just got off it. But late night/early morning the nurse took him off it and his stats were great! She also told me that Dr. Curnow said he could eat because he was looking so good and doing so well and he obviously wanted to eat. He wasn't allowed formula or breast milk for a few days just pedialyte which he gladly took. He was doing so well that we had the choice to go to peds that night. But we had decided that we felt safer here one more night with him being monitored.

The next afternoon he was transferred to the clean pediatric side(no sick babies or contagious things to worry about). Dr.Curnow visited us a few times a day and checked on him and updated us. He told us that he would be in there for probably a few days and that he could eat normal food now!! Which was way sooner than expected again because he was doing phenomenal. He came back by at like 3am and took off his bandages. Brody's bellybutton looks amazing, and his incisions! He did such a good job. Dr.Curnow told me that he could go home tomorrow night or the next morning if he was continuing to do so well but it all was really up to me and how I felt he was doing. So the next morning the nurse came by and told me again that Dr.Curnow said that he could go home that night or the next morning all depending on how I felt. So we talked about it and decided that we felt comfortable enough to go home that night.

May 1st 8pm Brody was discharged from the hospital. The surgeon wanted us to go by his office weekly and get him weighed. Dr.Curnow went on Vacation until August 20th and wanted to see us that day to discuss his NISSAN surgery and decide when. The Nissan surgery is to stop his refluxing because it is so bad. Also his G.I. doctors wanted to see him weekly. OHHH and while we were in the hospital the 2nd day he started to twitch really bad so they took him off the reglan
but he has sense continued to twitch, which the G.I. says shouldn't be happening.

May 5th & 6th Brody turned 3months on the 5th and we to the surgeons to get weighed and he weighed 8lbs and 8oz!! We went to the G.I.(Dr.Thompson this time) and talked about getting him on some extra calorie formula and about the twitching he said that he thinks that it is cause by immaturity sense he is so small for his age. But to keep an eye on it but he should stop once he starts really growing. Then we went to the cardiologists and she said he was doing great and we don't have to see her for 3 months!!

He has been gaining great he weighs 10lbs 2oz now. We talked to the surgeon on the 20th and he had originally said the end of August he wanted to do surgery but he has changed his mind and wants him to get really big so surgery is scheduled for sometime in November. We will go back in October and he will check how things are. But if he starts losing weight or other symptoms occur surgery will happen really soon. Also they don't want to do surgery so close to such a big surgery he just had and the laparoscopic surgery they have to hold the liver up with a clamp and it makes it bleed so they don't want to do that again so soon. But I hate having to see him in so much pain and things are just getting worse, he coughs a lot and spits up way more and is super wheezy sounding in is chest. They told us things will just get worse until surgery, so it's to be expected but still not fun and flu season will be in tow in November. We have an appointment with the neurologist for a second opinion on his twitches since they are still happening, but that's not until late September.

Other then that things are great, Brody is doing amazing despite his reflux. He is such a happy baby and has quite the personality. He definitely knows what he likes and dislikes. His PT and OT are super happy with how well he is doing with his muscle tone. He is so strong and loves to kick and try and stand, he also loves to talk and play with his toys. He can hold his head up pretty good on his own and look around. He LOVES his swing and music and singing. I will post pictures soon!

Monday, July 6, 2009

2 months old
















Yesterday was Brody's 2 month birthday! I cannot believe how fast it has come. He is such a sweet baby. He definitely has his own personality now. I love him to death!! Everybody that meets him falls in love instantly. My little brothers and sisters love to be around him and try to kiss him all the time.

He is now almost 8lbs. He is still on oxygen, though very little of it. He has some of the nicest specialist doctors. And they are very helpful and tell us a lot of information about what to expect. He is very strong and very far along especially for a baby with down syndrome. He also has an excellent team of ladies that come help us with physical therapy or whatever he needs. We are so VERY blessed to be able to have him in our family. I am so happy and can't even imagine my life with out him. He is the most perfect little boy in the world!!

I love waking up to him. He is so happy when he wakes up. He looks up at me and smiles and laughs. It is so fun to watch him sleep, even sometimes sad because he cries in his sleep. I always wonder what he is dreaming about that makes him cry. He has these funky noises he makes that freak us all out. It almost sounds like he is gasping for air but we are pretty sure it is just acid reflux and have to go for more testing to find out the severity of it. Poor little man has gone through so much. He always is getting poked and prodded at all bazillion of his doctor appointments. He is such a trooper through all of it!

Sunday, July 5, 2009

Brody James Carbajal










On May 5th 2009 at 2:30 am I woke up with some pretty strong contractions. I went out into the living room and sat there for awhile and timed them. They were strong and only a couple minutes apart. At about three I decided to call my mom and ask her what she thought. When I called her she told me that I should probably go over there and if I needed to I could go to the hospital from there. I woke Raul up and we headed over there. I was also throwing up along with the strong contractions, which is no fun. We got to my mom's and I walked around the couch for a little bit and had to throw up a couple times. My mom decided that I should probably go to the hospital because I could be getting dehydrated.
We arrived at the hospital around 5 am. I was in a lot of pain by then. They had checked me and I was 5-6cm. I decided that I couldn't stand the pain and told them I wanted an epidural, even though I had really wanted to try natural while I was pregnant. So they told me that they could put in an IV but that I had to wait for my CNM Georgianna to get there so she could check me. It seemed like it took FOREVER for her to get there. But it really didn't. Brody's heart rate was dropping quite a bit and they were getting nervous and even thought that they might have to go a C-section. When Georgianna got there and checked me I was fully dialated and I was ready to push, no epidural for me!
I started to push at 5:58 and had him at 6:02 am. He weighed 7lbs 2oz and 21 and 1/4 inches. It was amazing that it went so fast! And I was really glad that I ended up not having an epidural. When Brody was born he had a hard time breathing. I remember them putting him on my chest and I was rubbing him because he was still blue and then they grabbed him and called the NICU nurses up. He was having a hard time breathing. They had to give me so pitosum and pain medicine afterwards because of a problem with the placenta.
When they told me they thought that he might have down syndrome I was really not there. I couldn't fully understand what they were saying because of the medicine. They then rushed him to the NICU and Raul went with him. I wasn't allowed to go up there until I ate something. And I was soo worried about Brody.
I finally got to go up and visit him. It was so sad because he was under an oxygen tank and had IV's in him. He was so little and cute! I really wanted to hold him. I was able to stay in the hospital for 3 days so I could be there with him while he was in the NICU. And I also was sick.
He was in the NICU for 10 long days. I was they all day and most of the night. The last two days we were able to stay in a transitional room with him. I was so stressed that he wasn't going to be able to go him because the first day in the transition room he lost weight. But he ended up gaining a little bit and got to go home. We were all so excited! We love him VERY much and are so blessed that he is in our family!

Friday, March 27, 2009

8 weeks and counting

I am now 32 weeks and have only 8 weeks left until my due date. Hopefully less until I have the baby! I cannot wait to be done being pregnant! I am not a fan of pregnancy.
Well I just thought I would update everyone:) See mom I do to update my blog!

Monday, January 5, 2009

It's a boy!!






By the way we also celebrated our 1 year anniversary on December 28th:)