Monday, September 29, 2008


Pediatrician Appointment

We brought Brandon to the pediatrician for the first time this afternoon. He saw Dr. Sasson. He will have to go weekly for awhile because he is a preemie. He weighed 5 pounds 12 ounces according to the scale at the doctor's office. The doctor said that he looks good and his lungs sound good. He wants me to increase the amount of formula he gets to 65 cc's every 3 hours starting tomorrow, then 70 cc's the next day, and then 75 cc's the day after that and see how he does with that. He also wants to keep him on the oil that he is taking for extra calories.

Opthemologist Appointment

We took Brandon to the opthemologist this morning for his ROP appointment. He still does not have plus disease in his eyes so he still does not need the laser surgery. I have an appointment again next Tuesday and as long as things still look OK like he thinks they will the appointments will become more spread out. We got to wait in a room when we got to the office which was great because the appointment was in the pediatric office so there were lots of kids around. They were very understanding because they see a lot of preemies.

Sunday, September 28, 2008

First Night Home

Brandon's first night home went pretty well. Brandon woke up every 3 hours for a bottle and then went back to sleep. The only time he was up for a little while was after the midnight bottle when we were about to go to sleep for the first time. I held him until he fell asleep and then put him down in the bassinet and he slept. I did not get much sleep but Stu managed to sleep well in between each bottle. I kept hearing Brandon make his little noises all night. I am sure there will be several naps today when Brandon is sleeping.

Saturday, September 27, 2008

Brandon's Home

Brandon came home today between 5:30 and 6:00. Some firetrucks from Stu's fire department were waiting for us when we were about to turn onto our street so they led us to our house from the end of the street. Some of the wives and children of the firefighters were also waiting for us in front of our house. So far Brandon has had two bottles and then gone to sleep after each. Hershey is doing really well with Brandon so far. He seems to really like him. He keeps wanting to look at him in his pack n play. Here are some pictures from our homecoming.

Friday, September 26, 2008

Coming Home

Brandon will be coming home tomorrow. We have monitor training at 3:00 for the apnea monitor and then we will be able to bring him home after that. I am both excited and nervous at the same time. Brandon weighed 2380 grams tonight so he is now 5 pounds 4 ounces. It is going to be strange to not have his weight taken each night. They did start him on some kind of oil tonight to help him gain weight. His weight has been fluctuating since he started the diuretics which is understandable since the job of diuretics is to remove extra fluid. It will be up to his pediatrician if he stays on the oil or not.

Brandon had a repeat head ultrasound yesterday. He still has mild slightly enlarged ventricles. Dr. Rekedal thinks that this is just normal for Brandon and is not concerned.

We were having some issues with Brandon and his multivitamin. He had been getting it through his feeding tube but he had to start taking it orally several nights ago. The first night he had it after he had his bottle and he threw it all up after taking it. Two nights ago and last night he desatted after taking it due to the taste. Dr. Rekedal suggested giving him 1/4 of it 4 times a day in 15 cc's of formula and then giving him the rest of his bottle. We tried that tonight for the first time and it seemed to be better. I am going to talk to his pediatrician on Monday when he goes and see what they say. Maybe they can switch to a different one that tastes better if there is one. The reason he is on it is the eye doctor thought it would help with his eyes.

I spoke to one of the neonatologists today about RSV and he told me about an interesting study. Years ago there was a baby that had RSV (not sure what hospital). They took people and divided them into three groups. One group just looked at the baby, one group touched the baby, and one group picked up the baby and cuddled it. In the group that just looked at the baby nobody got RSV. In the group that touched the baby 40% got RSV and in the group that picked up the baby 70% got RSV. We are more than happy to have friends and family (no children until after RSV season unfortunately) come over to visit once Brandon is home in small quantities but please understand if you are not able to touch Brandon or hold Brandon during RSV season. It is very important that we keep him healthy so that he does not wind up back in the hospital. We also ask that if you have a cold or have been exposed to someone with a cold that you do not come over until you are 100% healthy.

Brandon got his pictures taken professionally at the hospital today. They came out really cute. I will put one on here when we get them.

Wednesday, September 24, 2008

Still No Oxygen

Brandon has been off of his oxygen since yesterday morning at 11:00 and is still off and doing really well. I was at the hospital all afternoon and his sats were in the high 90's and 100 a lot of the time. Unless things change drastically he should be going home without oxygen. One of the residents came to talk to me today and told me about several appointments that have been made for him once he is home. He has the opthamologist on Monday, the pediatrician on Monday (I am waiting for them to call so I can schedule it but I am sure it will not be a problem), the cardiologist on October 10th because of his VSD (hole in the heart), and the pulmonary doctor in 2 weeks. He will also have to go back to the pulmonary doctor 2 weeks after that for his next RSV shot. I also have 4 prescriptions that I need to get filled for Brandon. Brandon is now having bottles when he appears hungry which is pretty much every 3-4 hours. He is allowed to have as much as he wants. It is also still looking like Saturday is the big day to bring him home!

Tuesday, September 23, 2008

RSV links

Many people who I have spoken to are not aware of the seriousness of RSV or aware of what RSV is. I found some really good links that tell what RSV is that I am posting.

Busy Day

Brandon had a busy day today. He had his eye exam this morning. He still has stage 2 ROP but no plus disease so he still does not need the surgery. He will go to the opthemologist on Monday for his next appointment. We will take him to the Red Bank office for that since he is most likely being discharged on Saturday. Brandon also had his circumcision today and his first RSV synergis (shot). He also was taken off of the cannula today to see how he does without oxygen. So far he is doing well but they will have to give it a few days to see how he continues to do. Dr. Sembrano, the pulminary doctor, also came by this afternoon to look at Brandon. He will help to determine if Brandon comes home on oxygen and/or a monitor for apnea and/or a pulseoximeter. Brandon also had his hearing screening last night and passed.

Monday, September 22, 2008

Some Pictures from the walk yesterday and of Brandon yesterday

No More Feeding Tube

I got to the hospital today to find out that Brandon was going to be having bottles for every feed today and his feeding tube was taken out of his nose. I fed him his 12:00 bottle and his 3:00 bottle and he did great with each of them. I called the hospital a little while ago and his nurse told me he did a great job with the 6:00 bottle too! He also had to take his medicine by mouth today since he no longer has his feeding tube. He had his diuretics mixed in with a little bit of formula for the 3:00 feed and the nurse squirted his zantac in his mouth this morning with his 9:00 feed.

Dr. Rekedal talked to me this afternoon and said he is thinking Brandon will probably come home on Friday or Saturday. He does not think he will come home on oxygen but he needs to see for sure. He will try him off of it tomorrow and see how he does.

Stu gave Brandon a bottle last night. Brandon did really well with it.

Sunday, September 21, 2008

NICU Walk and Special Care

Stu, our parents, and I did the NICU walk this morning. It was a beautiful day for it and it was really neat seeing the babies that were NICU graduates. Some were born as early or earlier than Brandon and were running around. It will be nice to have him there with us next year.

We went to the hospital after the walk and found out that Brandon had been moved to special care. Special care is the step down unit where babies usually go before they are discharged. It is much quieter there and there are less babies there. We visited with Brandon for a little while and then went to the NICU party that was in the parking lot. The NICU is celebrating the 40th anniversary of the NICU. After we went back to see Brandon again and I gave him his bottle. He is still having a bottle every other feed and is up to 46 cc's. He was switched to neosure today since he will go home on that. He finished the whole bottle in 20 minutes and burped on his own each time I removed the bottle from his mouth. Dr. Rekedal also started Brandon on diuretics today. He came over and talked to us and said that since Brandon's oxygen is at 21% (room air) on 1/4 liter he wanted to see if the diuretics help to keep fluid out of his lungs to help him breathe better. He feels this could possibly help him to not come home on oxygen. He said it is at least worth a try. We will see what happens. I am nervous that Sue is not going to be Brandon's nurse tonight now that he is in special care. I will find out when we go back tonight. I really hope she gets to come over there to be with him tonight.

Saturday, September 20, 2008

A Letter from Brandon

Hi Everyone! This is so special that my mommy and daddy wanted me to write to tell you my good news. I have made so much progress that I will hopefully be coming home in the next week or two. All I have to do now is be able to drink all of my milk, and still gain weight and have my oxygen liter flow lowered. It is really hard work though and may take me a little while still. Once I come home, I still have to be very careful. I can get sick very easily, and if I get a scary thing called RSV, I could have to go back in the hospital. I don't want to do that because I have already given mommy and daddy enough gray hairs for a while. I won't be able to be around people really, and the doctors say I can't be around other kids for a long time because they have so many germs, but I will be playing before you know it. I also have to stay away from strong smells, like smoke and alot of perfume. I know I am not very much fun right now, but unfortunatelly I couldn't wait to get here, and my body still has a lot of developing to do. Not to mention that mommy is a little over protective. Daddy says she is a little nuts, but I know she means well so try and bear with her. Mom and Dad tell me all the time about all of you out there that have been praying for me, and I can't wait to get home and meet and play with you when spring comes and RSV season is over. I'll see you soon!
Love, Brandon

11 Weeks Old

Brandon is 11 weeks old today. He is now having a bottle every other feed and still doing really well with his bottles. His liter flow was turned down to 1/4 liter and he was doing well on that when Stu and I were at the hospital this afternoon. Dr. Rekedal is his doctor today. He came over to talk to Stu and me when we were there and he said they were talking during rounds this morning about sending him home in a week. He said they talked about the possibility of him coming home on oxygen. He may need it all the time if he comes home on it or for feeds and sleeping only. They might give him a diuretic to see if that helps him to come off of the oxygen. They still need to lower the liter flow and then they will see what happens from there. So it sounds like sometime in the next 1-2 weeks at the most Brandon will be home. I have gotten so used to going to the hospital that it will be very strange to not go anymore. It will be so nice to have Brandon home though so I am sure I will get used to not going once he is home.

Brandon's room

Friday, September 19, 2008

37 weeks corrected

Brandon had another really good day. He is down to 1/2 liter of oxygen and doing really well on it. He is also at 3 bottles today, each 44 cc's, and did great with the first two. Sue will give him his third bottle at 3:00 a.m. Dr. Alemany told me that they will lower the flow on his oxygen on Sunday to 1/4 liter and a few days later to 1/8 liter and then try him off. He thinks there is a good chance he will do ok off. If not he will come home on 1/8 of a liter. He said Brandon should be home the week after next week. Brandon weighed 2340 grams tonight which is 5 pounds 2 ounces.

Thursday, September 18, 2008

Great Day

Brandon had a really good day today. I was at the hospital from 12-4 and Stu and I were at the hospital tonight from 7:45-10:15. Brandon did not have any desats the entire time we were there. His liter flow is still at 1 liter and he is doing great at that. He had two bottles today since he did so well yesterday with one bottle and he drank both bottles within 15 minutes. He is up to 42 cc's which is almost 1 1/2 ounces. Dr. Alemany came over to talk to me when I got to the hospital this afternoon and he said that they are going to keep increasing the amount of bottles he has each day as long as he continues to do well and that every few days they will come down on his liter flow and that he should be out of here soon. Tonight the case manager told Stu and me that she had talked to Dr. Alemany and he was thinking roughly 2 weeks until Brandon comes home. It is amazing how much better he is doing now that he is back at Monmouth. I did hear when I got to the hospital tonight that I created a monster when I was at CHOP. Apparently Brandon was crying extremely loud with a mad cry all night long except for when he was being held. Then he would stop crying. I am going to leave him in his crib a little more tomorrow to try to break him of that. Brandon weighed 2305 grams tonight so he is a little more than 5 pounds, 1 ounce.

Back at Monmouth Medical Center and Pictures from CHOP

Brandon arrived back at Monmouth Medical Center yesterday afternoon around 3:30. I rode in the ambulance with him and Stu followed behind the ambulance. We were very happy to be back. Sue was Brandon's nurse last night which was such a relief for me after being at CHOP for 2 weeks with most of the nurses there that were inexperienced and only did things the "CHOP way". When Brandon got back he was put in an isolette because he is supposed to be in isolation for 2 days until the infectious disease tests come back. The same thing happened when he went to CHOP. Anytime a baby comes from an outside hospital that is what happens. He was too hot in the isolette so Sue had to put him into a crib. She was also able to lower his liter flow from 1 1/2 liters to 1 liter. As of 6:00 this morning when I talked to her he was doing okay with 1 liter. He had a 40 cc bottle last night and drank the whole thing in 10 minutes. He does not quite have the suck, swallow, breathe thing down but he did not do too bad with it. He would take some sips and then stop and take some breaths. Eventually he will be able to breathe while taking sips. It is something that will come with practice. Brandon weighed 2270 grams last night which is 5 pounds.

Tuesday, September 16, 2008

Going Back to Monmouth Medical Center

Brandon had his eye exam today. The opthemologist said that his eyes did not get any worse so he still does not need the laser surgery. He said he would be comfortable with him going back to Monmouth Medical Center if Dr. Pardone was comfortable taking over and doing the eye exams. He called her and she said she was comfortable with it. So we will be going back sometime tomorrow. He had a good day today and a good day yesterday. He was also good overnight last night. His oxygen is at 25% and his sats have mostly been between 98% and 100%. He was not happy at all when his eyes were examined and also when he had to get a new feeding tube put in his nose since he pulled his out tonight. He weighed 2205 grams tonight so he is now just short of being 4 pounds 14 ounces.

Monday, September 15, 2008

September 15, 2008 part 2

Last night Brandon weighed 2175 grams which is a little over 4 pounds 12 ounces. The speech therapist came at 3:00 today. Brandon drank 6 cc's with her. He would have done more but she does things really slow with him because she is listening to him suck, swallow, and breathe with a stethoscope while feeding him. She will come back tomorrow to work with him again. It is ridiculous because he had started bottle feeds already and was doing fine. Brandon's eye exam is 12:30 tomorrow so we will see then what the next plan is. During rounds this morning they said there is a possibility we can go back to Monmouth depending on what the exam shows.

September 15, 2008

Brandon had a good day yesterday and has had a good day today too with his sats. The setting on his cannula is 25% right now and he his sats have been mostly between 97% and 100%. Brandon had a bath last night. He was SO angry when he was put on the scale before his bath that he did not like his bath as much as usual. He had a repeat echo this morning to make sure that his PDA is still closed. I didn't realize that they can reopen. I spoke to one of his nurses from Monmouth and his nurse today and both said that he is old for it to be reopen. They also said he would probably be showing signs that it had reopened such as high blood pressure which he has not shown. They said it is routine here to get a repeat echo. I should have the results late this afternoon/ early evening. He was not at all happy during the echo. It took about 45 minutes and he got pretty stressed out. He would only settle after it when I was holding him. Speech came to do her consult 10 minutes after the echo but she could not do much with him since he was still stressed. In order for him to bottle feed she needs to do a consult on him since that is the way it is done here. Never mind the fact that he had started on a bottle before coming to CHOP. She said that he sucks good and swallows good. That is as far as she got because he was too stressed with her. She is going to come back at 3:00 to see if he has settled at all. He settled immediately once she was gone while I was holding him. I seem to be the only thing that really settles him. Once I hold him he relaxes right away. The only change during rounds today is his feed was increased to 40 cc's.

Saturday, September 13, 2008

10 Weeks Old

Brandon has had a really good day today. The only difference is he is going to be on special care 20 formula only now. Brandon had two of his two month shots yesterday and one today. He let out one loud scream each time and then stopped. He was a little cranky last night for awhile but is much better today. His reflux is still bothering him a lot. It lasts for awhile after his feeds. They are going to give the zantac a chance to kick in now that his dose was increased but if he is still having bad reflux on Monday then they might give him another medicine in addition to the zantac.

Friday, September 12, 2008

36 Weeks Corrected

Brandon is 36 weeks corrected today which means that I would have been 36 weeks pregnant with him. Last night he was up 20 grams. At rounds this morning they decided to switch his formula to special care 20. He had been on special care 24 originally and was doing fine with it. After he had his virus his formula was switched to alimentum which is an easier to digest formula because it is broken down a little more. The doctor here does not seem to like it very much and since he had been tolerating the other formula fine until he got sick they decided to switch him off of it and onto special care 20. He will be on that for now and will come home on neosure. Monmouth Medical Center also sends home the majority of preemies on neosure so at least he will have that consistency. Brandon was switched to a crib this morning. So far he is holding his temperature. His temperature will be checked again with his 3:00 cares so we will see then how he is doing. I have been doing the majority of things at his cares when I am here...changing his diaper, taking his temperature, checking his aspirate (what he did not digest), and putting his formula in the syringe and hooking it up. He had a much better day yesterday than his night the night before and has had a pretty good day so far today too.

Thursday, September 11, 2008

September 11, 2008

Brandon weighed 2100 grams last night so he is not 4 pounds 10 ounces. I called a few times throughout the night and was told that he kept having desats into the 70s so they had bumped up his liter flow and his oxygen. He was doing well this morning when I got to the hospital and was back down on both his flow and oxygen. I kangarooed for awhile and towards the end of kangarooing he started to desat again and had to be bumped up on both his oxygen and liter flow again. Once he settled himself he was fine. I asked his nurse what times the desats have been happening because I am wondering if it is his reflux that is causing them. He did have his episode this morning towards the end of his feed. She said she would start to look into that as a possibility. About 45 minutes after his 12:00 feed he spit up and then started to desat. So the doctor is going to increase the amount of zantac that he is getting to see if that helps.

The developmental team came to look at Brandon this morning and decided that the occupational therapist would come to see him at 1:00. She showed me some positional things I can do with Brandon. It turns out she is a friend of someone that I work with. It is a small world.

Wednesday, September 10, 2008

September 10, 2008 morning

The doctors just finished rounds and we sat in on them. We are allowed to sit in on rounds here unlike at Monmouth so we get to hear everything that is going on. They are going to start Brandon on vitamin E. They were saying there are some studies that show that it helps with ROP. I guess anything is worth a shot.

Stu and I were pretty upset about something that happened with our nurse last night. Brandon was desatting for at least 20 minutes straight and our nurse did not seem to be paying attention at all. I was not saying anything because I did not want to butt in and it also seemed to me that he would pull himself out but then his sats would drop all over again but after 20 minutes I finally said something to the nurse. Her reaction was to immediately jump up his oxygen from 30%-50%. We are not upset that he required more oxygen for a little while but instead of gradually increasing it she jumped it up. The eye doctor had just finished telling us yesterday afternoon that the quick jumps in oxygen are what cause ROP. We are concerned that if the nurses jump him up that quickly it will make his eyes worse instead of better like we are hoping.

We are having a meeting sometime today with the social worker, head nurse, doctor and any other people on his team (residents, nutritionist, etc.) to discuss everything that has been going on here and what the plan for Brandon will be now that he will unfortunately be staying here a little longer than we were originally told. Hopefully that will help to make it a little more comfortable for me to have him here.

Brandon was up 30 grams last night so he is back to what he was the night before.

Tuesday, September 9, 2008

Pictures of Brandon

I don't have email access on the laptop from the Ronald McDonald House so I brought the computer to the hospital tonight so that I can post some pictures of Brandon that I have taken here.

No News Is Good News and Bad News

The opthemologist came to look at Brandon's eyes today around 1:00. He did not see any change in Brandon's eyes from when he saw them on Thursday. They were not any better and not any worse so he does not need the surgery yet which is good news but the bad news is he wants to see him again next Tuesday. His eyes can still get better on their own and he does not have plus disease yet which is why he does not need the surgery yet. If there is no change he will want to continue to see him every week. We are hoping if that is the case that the opthemologist who looks at the babies eyes at Monmouth will feel comfortable doing the follow up and we can go back to Monmouth. If she is not comfortable he will have to continue to stay here until he is ready to be discharged which could be another 4 1/2 weeks. They tell us here that most preemies do not get discharged until around their due date and he still has 4 1/2 weeks until then. We were told at Monmouth that he probably would have been out in about another 2-3 weeks roughly. I will be staying here by myself since Stu will be going home tomorrow to go back to work. Then he will be here on weekends and next Tuesday for the next eye appointment. Brandon was down 30 grams last night from the night before. Hopefully tonight he will gain some weight again. The doctor had the nurse lower his oxygen from one liter to 3/4 liter. So that is a good sign. He is still in the isolette but is set at room air temperature so if he continues to stay like that for a few more days they will try him in a crib again and see how he does with that. We also talked to the doctor to see when they plan on starting to try some bottle feeds again since they have not tried that since he got here. It seems like that should start again too. I just hope the doctors here plan on moving him through things at the same pace as they were planning to at Monmouth. It seems to me like they go slower here.

Monday, September 8, 2008

September 8, 2008 morning part 2

Stu and I sat in on rounds a little while ago. The doctor did not seem concerned that Brandon's platelet count is low or that his white blood cell count is slightly high. Brandon does not seem to be acting sick at all so as of now he is not concerned about it being an infection. They will continue to watch him and see if he starts to act sick. He will have another CBC done on Wednesday to see what his platelet counts are then. Brandon will be up to his feeds goal at 12:00 today. His iv was removed last night when we were here. The doctor also did not seem concerned that Brandon's respiratory rate has been slightly elevated at times. He said they look for the trend and it is okay if his is up and down. They would be concerned if it was constantly high.

September 8, 2008 morning

Brandon gained 40 grams yesterday. He is now just over 4 pounds 9 ounces. He seemed a little stressed out yesterday afternoon about everything that has been going on here but seems much more relaxed now. It was very loud in his section yesterday and I don't think that he liked that. He is now relaxing in his isolette and they did put a cover over it like he had at Monmouth (this was after the nurse yesterday in the day told me that they do not cover isolettes at 35 weeks corrected like he is now). It amazes me how much the nurses here contradict eachother. I had been asking for days for a bulb syringe so that I could suction his nose with it and kept being told they don't have them here and that they don't suction with them. Yesterday's nurse said they do have them and got us one. It seems that way with a lot of things. Some nurses say they don't do it, others say they do. Brandon's platelet count is still down. It is close to needing a platelet transfusion so we will see what the doctors say during rounds. It has been low ever since he had his virus last weekend. His white blood cell count is a little elevated too but we just talked to his nurse and she said he looks great and is very active so she does not think he has an infection.

Stu and I got a room at the Ronald McDonald House last night. We will have it the whole time Brandon is here. It is actually very nice. Our room looks just like a hotel room. Plus there is dinner every night if we want it and tons of food that we can cook for ourselves. There are computers to use and tons of other things. And the cost is only $15 a night.

Sunday, September 7, 2008

September 7, 2008 morning

Brandon weighed 2040 grams last night. He is one gram away from being 4 pounds 8 ounces. He got put into an isolette today. They had him on a warmer since he got here. Sometimes they needed to give him some heat, sometimes he was keeping up his temperature while he was dressed and wrapped in a blanket. Since he was up and down on keeping up his temperature they decided to put him in an isolette. He had been in one still at Monmouth and was almost ready to go into a crib but not quite so I am sure he is almost ready here too. This way he can work on other things he needs to do and not worry about maintaining his temperature. He is still dressed and wrapped on a blanket. He is just getting some heat in the isolette.

Brandon is now at 25 cc's of formula every 3 hours and will be at 30 cc's at 12:00 today. They will let his iv fluids run out and then take him off of those since he will not need them anymore. He has been tolerating his feeds well. His feeds had been stopped when he had the virus last weekend.

Something I keep forgetting to write on here is that when we first got here on Thursday and I was holding Brandon I asked for a boppy pillow. At Monmouth they had a bunch of boppy pillows for anyone to use. You just had to put a blanket on top of the boppy before you used it. I figured it would be the same thing here so I was very surprised when a brand new in package boppy came up for me. I didn't realize that by asking to use a boppy I was really buying myself a boppy. Or rather my insurance company was buying me a boppy.

We can't wait for the eye exam on Tuesday. We feel like we are just sitting here waiting to see what happens which is a little frustrating. I will try to update again later. Our parents are all coming today to visit. If anyone else is up for making a trip to Philadelphia to visit please let us know.

Saturday, September 6, 2008

9 Weeks Old

Brandon was 2 months old yesterday. Last night he weighed 2005 grams so he is between 4 pounds 6 ounces and 4 pounds 7 ounces. His milk has been being increased pretty quickly. I guess they are trying to get him back up to the amount he had been getting before he got sick quickly. They increase the amount he is getting by 5 cc's every 12 hours until he gets to 38 cc's. At that point I am not sure how much they will increase it. He still has his iv fluids too (he was put back on the iv when he got his virus last week). Here they make them stay on them until they are at least at 30 cc's. Monmouth is completely different about when they take them off of their iv. He had been off of his iv by the end of July.

Friday, September 5, 2008


We are here at CHOP. We arrived yesterday afternoon around 3:00 and shortly after the ophthalmologist came to look at Brandon's eyes. The part of his eye that is affected is zone 2 and it is a stage 2 problem. The ophthalmologist wants to look at Brandon's eyes again on Tuesday. It is not bad enough yet to need laser eye surgery but is almost to that point. He wants to see on Tuesday if it has started to correct itself which in some cases it does or if it has stayed the same or gotten worse. If it has stayed the same or gotten worse he will do the surgery. It will be either Tuesday night or Wednesday morning if he does it. We will be here for 2-3 weeks. Monmouth had told us 1-2 weeks. If he gets the surgery he will need to stay here a little while after for the doctor to look at again. We had been told prior to coming here that the doctor likes to keep him an extra week but the doctor yesterday told us he likes to keep the babies an extra two weeks unless the eye doctor at home is comfortable following through. Then maybe we can come home one week after the surgery.

I really hate it out here. It is very inpersonal. They do things here completely different than they were at Monmouth (the way they feed him, suction his nose, etc.) and when I ask about doing it the way we were before I get told that is not how we do it here. If you want to talk to the nurse when you are not here you call and they page the nurse and then you wait for the nurse to pick up. They also page the nurse when you get to the NICU and you need to wait for the nurse to come get you. You can't just walk in.

Thursday, September 4, 2008

CHOP update

Brandon's nurse Chris just called to tell me that the ambulance is leaving CHOP at 10:00 and should be at Monmouth around 12:00.

Still Waiting

We are still waiting for Brandon to be transferred to CHOP. CHOP called the NICU this morning to tell them that they are waiting for a space for Brandon. He is not an emergency situation since he is only going for his eyes so when some babies are discharged and a space opens up they will call the NICU and then we will have more of an idea of when he is going. We found out that I can definitely ride in the ambulance with Brandon so I will do that and Stu will follow right behind.

I forgot to mention yesterday that Brandon started feeds again and is back on the nasal cannula. He was at 21% (room air) on the cannula for most of yesterday. I assume he is still at 21% now but I will find out when we go in later. They started his feeds but he is only getting 5 cc's. They have to build up slowly to what he was getting to make sure his stomach continues to be okay. He had 3 feedings by bottle and did well. For some reason they wrote an order for all of his feeds to be by bottle but we do not think that is right since he was only getting 2 bottles a day before he got sick. Maybe since he is on such a low amount that is why they wrote it for all feeds. The nurses have been giving him every other feed as a bottle which is fine by me. His nurse last night told me I might want to mention at CHOP that he only started bottle feeding so that once his feeds are up to where he had been before he can work on getting good at one bottle before he is expected to do all feeds by bottle.

I will post an update to what is going on when I get a chance.

Wednesday, September 3, 2008

Retinopathy of Prematurity

I got a phone call this morning from the eye doctor who has been examining Brandon's eyes. Brandon has to go to CHOP (children's hospital of philadelphia) because he might wind up needing laser surgery. His eyes are now in stage 2 at zone 2. They can still possibly correct themselves at this stage but they could also get worse which would require surgery so they want to transfer him for a second opinion. Unfortunately CHOP and Jefferson (also in Philadelphia) are the only hospitals that do this surgery and the eye doctors from there will not come to Monmouth to examine his eyes so that is why he needs to be transferred. He should hopefully only be there for 1-2 weeks. It is very uncommon for babies from Monmouth to actually need this surgery. The last time they even sent a baby there was in 2007. From what some of the nurses have told me prior to now the reason babies need the surgery is from nurses going up on the oxygen to quickly. He will be transferred either tonight or tomorrow morning. We will find out more later. I will try to update when he is there but I am not sure how often I will have time to get on the computer. I will be staying at a hospitality room or Ronald McDonald house when he is there. Stu will be with me at least through Sunday.

Tuesday, September 2, 2008


Poor Brandon is starving. Hopefully he will be fed again tomorrow. They still have not been able to feed him because his platelet count is still pretty low which is part of the virus and there is still a little blood in his poop which is part of the virus. Dr. Rekedal said he is hoping to get him started on feeds again tomorrow. He is also hoping to get him back on the cannula tomorrow. I hope he does go back on tomorrow and off of CPAP because the CPAP makes his nose so stretched out. It goes back to normal once he is off of CPAP for a few days. Brandon has been sucking on his pacifier all day really hard. I think he is thinking if he sucks hard enough maybe it will give him some milk. Chris, Brandon's nurse today, said they are going to give Brandon a new formula called alementum when he starts to eat again. It is supposed to be a lot easier to digest but unfortunately is pretty expensive. I forgot to mention in my post on Sunday that Brandon is in a new isolette. He was downgraded again to one of the older isolettes. Sue thought it was a good idea to give him a nice clean, germ free isolette once he was starting to feel better. I arrived tonight to Brandon having an absolute hissy fit. He was screaming and moving his whole body all over the place. He is definitely feeling better.

Monday, September 1, 2008

Back to being himself

Brandon is back to being himself. He is as feisty as ever. He weighed 1920 grams tonight but it may not be that accurate. He had a blood transfusion today and usually they give him lasix after which is a diuretic because he can retain fluids but they did not tonight. He also has two iv's in still so they could have added a little extra weight. We dressed him in a onesie tonight. He has been in only a diaper since he got sick. He is on straight CPAP at 21% (room air) so he should be back on the nasal cannula in no time. His sats (oxygen) were great tonight when he was on room air. We did put him on the cannula when he got weighed so I took some quick pictures before he was put back on CPAP.

Quick Update

One of the nurse practioners just called. She told me that Brandon is getting a blood transfusion. She also said that he is being switched to straight CPAP. He had been on the CPAP with the assisted breaths. They are not going to resume his feeds today because of the platelet count and a few other signs of the virus that are still present. They will talk tomorrow to see if they will resume his feeds then.

Feeling Much Better

Brandon seemed to be feeling much better last night when we were at the hospital. He was moving around a lot more than before and crying when he was bothered. He was also sucking on his pacifier which he had not been doing when he did not feel well. Before I left the hospital he had a big poop. That was really good because his bowel sounds had not been good due to the virus. After his poop they improved. I came home to sleep last night since he was doing well. Sue said she would call if anything changed and said I could call as much as I wanted. I did call in the middle of the night once and this morning. Both times she said he was doing well. He had another big poop and she took the tube out of his stomach that was taking the air out since there was no more bile coming out of it. His CO levels improved. When he first got sick he was in the 80s, this morning he was down to 59 which is much better. His oxygen on the CPAP was down to 21% which is room air. He had started at 40% oxygen when he first got the virus. The hemoglobin level (I think that is what she said) is still low so if that does not go up he may need a blood transfusion and his platelet counts are low which may require a platelet transfusion. Both of these counts do get low with viruses. His body may make more on its own but if not he may need the transfusions. Sue seemed to think they will not feed him if his platelet counts are low. Hopefully they will go up soon or he will have a transfusion because he seems to be getting hungry.