Virus Update

Stu and I did wind up staying in the hospitality room last night at the hospital. It was nice being able to walk down the hall to see Brandon a few times throughout the night. He seems to be doing a little better. His CO levels are slowly coming down and as of this morning he didn't seem to have any more bile coming out of the tube that was dropped down his stomach to suction him. He was also starting to wiggle around much more than he had been the day before. Brandon has always been a wiggler so I am sure that is a sign that he is starting to feel better than he was feeling. Stu and I came home this morning around 9:45 to rest. We will go back to the hospital in a little while to see Brandon and will go again tonight. I am not sure if I will stay yet or not. We have the hospitality room until Tuesday I think. Sue was Brandon's nurse last night. It was really nice to have someone there who really knows Brandon really well and to talk to about what was going on with him.

Virus

They think Brandon has a virus. I got a call this morning at 7:50 from Dr. Rekedal. He said that Brandon had abdominal distention and he thought it was most likely a virus that is causing it. He said they were going to decompress his stomach by dropping a tube down his stomach to suction it, they were going to stop his feeds, and put him back on CPAP since his stomach was pushing into his diaphragm and making it difficult for him to breathe. Once he gets over whatever is going on he will be put back on the nasal cannula and will start feeds again although initially the feeds will be less than he was getting and he will work his way up. I went to the hospital an hour later and spent the whole day at the hospital. I have a hospitality room for the next 3 days incase I want to stay over. I might stay because this way if I wake up in the middle of the night I can go and see him to see if he is okay instead of calling to see. Hopefully it will work its way out of his system soon. I hate seeing him back on CPAP and undressed.

34 Weeks Corrected

Brandon continues to show no signs of infection. He is still on the antibiotic until tomorrow when they know for sure if he has an infection. So far there is not a positive on the bloodwork for an infection which is good.

Brandon weighed 1900 grams tonight. He is 4 pounds, 3 ounces.

Brandon had a bottle at 3:00 today. He drank 17 cc's of the 33 cc's so he had to have the rest in his feeding tube. That was not bad though. Rachel, his nurse tonight, is going to give him a bottle at his midnight feeding so I will see how he did when I call in the morning.

Infection Update

I spoke to Rachel last night once and this morning. Both times she told me that Brandon was great. He had no temperature again and he was doing fine with his feeds. She told me that his iv is out now. So I guess the temperature wound up being nothing.

Possible Infection

I got to the hospital today around 1:00. I held Brandon for awhile and then Mark told me to do his cares around 2:30. When I took Brandon's temperature it was 100.2 which is high. The resident came over to look at Brandon and thought he looked ok even though he was warm so she said Brandon could have his bottle. Mark tried to feed Brandon his bottle at 3:00 and showed me how to do it. I had some trouble feeding him. I am going to try again sometime tomorrow. It is a lot harder to feed a preemie a bottle than a full term baby. Brandon only drank 13 cc's out of the 33 cc's. Not nearly as good as last night's bottle. When I left Mark had been told to get a rectal temperature on Brandon when he got a chance. I called at 5:30 to see what the temperature was and it was 100.4 so they thought it was a possible infection. They put an iv on Brandon's arm to start fluids and started to give him an antibiotic. They also took some blood and were holding his feeds. Stu and I went to the hospital and one of the nurses paged Dr. Hudome for us to talk to. She called back and she answered all of our questions. She also said she was going to be coming in between 8 and 9 tonight to look at a different baby so she would look at Brandon too and if he seemed ok and looked ok he could resume his feeds. When she was there she said he looked good so she said he could have a bottle with 20 cc's at his 9:00 feeding and if he continued to be ok he could have his full feedings after that. Rachel was his nurse tonight. She gave him his bottle at 9:00 and he drank the whole thing. Dr. Hudome also said the CBC (blood work) came back fine. They will find out the results of the other bloodwork by Saturday morning to see if he has an infection. It could just be that he is hot since he has been dressed and wrapped and in the isolette. It doesn't hurt that he was started on an antibiotic incase it was something. If the results come back that it is not an infection they will stop the antibiotic.

Brandon weighed 1818 grams tonight. He hit the 4 pound mark!

First Bottle

I got to the hospital this afternoon and Chris was Brandon's nurse. She told me that he was going to be getting his first bottle today to see how he did. She said we could do his bottle at any time that was good for me and if Stu wanted to be there for him. He did want to be there so we decided we would have Chris give him the bottle at his 6:00 feeding. The nurse gives the first bottle incase there is a problem. It is very hard for preemies to drink a bottle because they need to remember to suck, swallow, and breathe. They give the babies a half hour to drink what they can and then they give them the rest in their feeding tube. Brandon did great with his bottle. He drank the entire thing and did not have any episodes. His oxygen went down a few times but that it expected with the first bottle feeding and he went right back up each time. He really seemed to enjoy drinking the milk and finished the whole thing within the half hour. He had 33 cc's which is what his feedings are. That is one ounce and 3 cc's more. He did a really good job when he was burped too. Tomorrow I will get to give Brandon his bottle. His nurse will be right by my side to help. Brandon weighed 1800 grams tonight so he is a little more than 3 pounds 15 ounces. I am sure he will hit the 4 pound mark tomorrow.

Quick Evening Update

Brandon was 1764 grams tonight so he is now 3 pounds 14 ounces. Stu and I gave him a bath tonight and then he was out cold during his feed. He is having 33 cc's now every 3 hours.

Afternoon Update

Brandon had a follow up eye exam today. His nerves are now in zone 2-3 (an eye has 3 zones...zone 3 is the outside zone so his nerves should get to the end of zone 3 eventually) so his eyes are developing nicely. He is in stage 1 for eye problems which Dr. Rekedal says corrects itself. Stage 2 corrects itself too. Stage 3 requires laser surgery and stage 4 is usually blindness so he is not even close to having a problem. His eyes are developed like a typical preemie.

Brandon's nurse today also mentioned that the cardiologist was going to be doing an EKG today. I asked why and she got his file and said as a follow up to his VSD (ventricular septal defect). I told her nobody had ever mentioned that he had this before. The only heart problem I had ever been told about was his PDA which closed itself 24 hours after he was on neoprophin during his first week of life. She went and talked to Dr. Rekedal and he came and talked to me. He explained that a VSD is when the two lower ventricals have an opening in between them. Brandon has a small VSD which should close by itself within a year or two. If it does not then he will need surgery. The large ones are usually more of a concern but he said Brandon's is small. A VSD is not a preemie thing. He would have had this even if he had been full term. We think Stu had this when he was born too. He had a hole in his heart that closed itself by the time he was 18 months old. The cardiologist did not wind up looking at Brandon's today. She will come back to see it before he is discharged and then he will probably need to go for follow up visits every to often.

Brandon also definitely has reflux. About 45 minutes after he ate I was holding him. He made a pained face, coughed 3 times, and then spit up. I felt so bad for him.

August 25, 2008

Brandon had a good day yesterday and a great night last night. The only problem he seemed to have were his reflux still. I think the medicine and rice cereal are helping a little but he definitely still has the reflux. Now it is mostly after he eats, not in the middle of his feeds. Brandon weighed 1749 grams last night so he continues to have nice weight gains. He is almost 3 pounds, 14 ounces.

August 24, 2008

Brandon weighed 1693 grams last night which is a little less than 3 pounds, 12 ounces. It may not be a completely accurate weight though because he had not pooped in 2 days and he is retaining a little water. He finally did poop in the middle of the night so there will not be a huge weight gain most likely tonight.

When we got to the hospital last night Brandon's head was bobbing up and down when he was breathing. I had never seen this happen before. It turns out he had to be suctioned. He had a TON of stuff in his nose. Sue said the night before that she has to suction him twice during her 12 hour shift since he does get a lot in his nose. What annoys me about last night is when Stu and I were at the hospital in the day I asked his nurse if he had been suctioned and she said no because he did not sound like he needed it. Last night Sue said that he sounds good when he needs to be suctioned but Sue knows him well (the day nurse yesterday had never had him before) so she knows he needs to be suctioned. At least I know the signs to look for now so I can tell when he needs to be suctioned and mention something to the nurses if nobody is suctioning him. Once he was suctioned last night he was completely fine.

Frustration

I am starting to learn that you get different answers depending on who you talk to. Dr. Hudom and Dr. Rekedal both mentioned last weekend that they thought Brandon would be in the hospital 4 more weeks at the most. Dr. Attardi is Brandon's doctor today. When I asked her how much longer she thinks he will be here she said 4 weeks is a stretch. It will probably be a little longer. I don't know who to listen to. I think a big part of the problem is that the doctors see him for a week and then don't see him for weeks so they don't really know how he is or how he has been. They only know what is going on with him right then.

"Big Steps for Little Feet" walk to benefit the NICU

Stu and I will be walking to benefit the neonatal intensive care unit where Brandon is on Sunday, September 21, 2008 in "Big Steps for Little Feet." The walk is a 2 mile walk in Long Branch, NJ and begins at 10:00 a.m. All proceeds will benefit the NICU at Monmouth Medical Center. If you are interested in joining us on the walk or making a donation please let me know. Checks for donations need to be made out to The Monmouth Medican Center Foundation. You can mail them to us. If you are interested in joining us for the walk please let me know and I will give you more information.

August 23, 2008

Stu and I were with Brandon this afternoon for a few hours and tonight. Brandon weighed 1623 grams tonight. He is 3 pounds 9 ounces. Stu and I gave him a bath tonight which he loved as usual. He was so relaxed when I held him while he ate his dinner and after. I held him with his head on my shoulder which he loved. Brandon is now having 30 cc's of milk every 3 hours which is one ounce. He is still on the nasal cannula. Dr. Attardi said this afternoon there is a 70% chance he will stay off of CPAP and on the cannula. If he starts to work too hard he will go back on CPAP for a little while but so far he is doing great on the cannula.

7 weeks old

Brandon weighed 1575 grams last night so now he is almost 3 pounds, 8 ounces. He was doing well on the cannula still. When I talked to Sue this morning she said he was at 21%-23% oxygen on the cannula. He is on 1 liter of oxygen. That will eventually decrease to 3/4, 1/2, 1/4, and then 1/8 liter. He is also still doing well regulating his temperature when wrapped. She told Stu and me last night that we are at the point now where we can come in and just do things (take his temperature, change his diaper, etc.) on our own without asking and then take him out on our own and hold him. She thinks he will be coming home in about 3 weeks. I am excited about bringing him home but a little nervous too. I have gotten so used to being in the NICU with him and I will definitely miss some of his nurses a lot. At 11:30 last night Brandon started rooting. It was the first time I have seen him do that. Sue says it means he is ready to start trying to drink from a bottle. She thinks the doctors will decide that he can try one bottle within a few more days.

Nasal Cannula Trial

I got to the hospital this afternoon and Lauren, Brandon's nurse, told me that Dr. Rekedal had decided that Brandon would try the nasal cannula during kangarooing today. I kangarooed for 2 hours and he did really well on the cannula the whole time so Dr. Rekedal decided to let him try it when he went back in his isolette. I left at 4:30 and he was still doing really well. He had been on it for 4 hours at that point. I will see when we go back tonight if he is still doing well on it. If he starts working too hard then he will be put back on CPAP for a little while and then try again in a few days.

More pictures from last night

33 weeks corrected

Today I would have been 33 weeks pregnant. Brandon weighed 1550 grams last night which is almost 3 pounds, 7 ounces. Stu and I gave him a bath last night and as always he loved it. We then dressed him in his clothes for the first time. We put on one of his onesies and one of his sleepers over it. He looked so cute. He had the cannula on during his bath and when we dressed him and for a little while after when Stu was holding him and he was doing fine on it.

I called the hospital this morning when I woke up and talked to Sue and she said that his blood gas was really good so she thinks he will be tried on the cannula today. She also said that his reflux was fine. We don't know if it was the zantac or rice cereal. She was surprised that they tried both at the same time. She thinks they should have tried one first and if that didn't work then tried the other. Now we won't know which is the one that is helping. She also said he has been doing a good job maintaining his temperature. She said if he does come off of CPAP and on the cannula not to be surprised if the temperature in his isolette is put up a little because he is having one of his heat sources taken away.

All Wrapped Up

I got to the hospital this afternoon and Brandon was dressed in a hospital undershirt and wrapped in one of his blankets. His nurse did not realize that I had brought his clothes in. We will dress him in them tonight. His nurse today said that his temperature was warm each time she checked him so since he hit the 1500 mark she wanted to wrap him and see how he did. He was doing fine as of when I left the hospital a little after 4:00 today. He really seemed to enjoy being wrapped.

Dr. Rekedal decided to start Brandon on zantac today as well as put rice cereal in his milk. Both of these should help with his reflux. He will stay on them for a few days and then they will see if it is making a difference. If it is he will continue. If not they will stop it. Dr. Rekedal also said Brandon will be tried on the cannula tomorrow to see how he does.

Eye Exam

Brandon had his first eye exam today by the eye doctor. Chris was his nurse today and she told me that the eye doctor said she was surprised that Brandon is a 26 weeker. She said that his eyes look more like a 28 weeker. I talked to Dr. Rekedal after and he told me that he has premature eyes which he should because he was premature. His eyes look good and he has no problems with them other than them being premature. That is a good thing because sometimes babies need laser surgery to correct problems but Brandon won't need that. Brandon weighed 1536 grams tonight so he is 3 pounds, 6 ounces. He is not wearing clothes yet except for when we hold him but Kate was his nurse tonight and she told me the reason he was not being dressed and wrapped all of the time yet is because he is going to be trying the nasal cannula soon and if he is dressed and wrapped they will not be able to see if his chest is rising and falling. Before I left Kate said that he may be dressed and wrapped starting tomorrow night. Brandon was having 28 cc's of milk again today every 3 hours. Kate also told me when I was doing Brandon's cares tonight that the last time she was in she gave Brandon a hug in the middle of the night because he looked like he needed one. She is so good to him.

Big Enough for Clothes

Brandon hit the 1500 mark tonight! He is actually 1505 grams which is a little over 3 pounds, 5 ounces. He is big enough now to wear clothes and be wrapped in a blanket in his isolette. His nurse tonight was the same as last night and she let me put one of his preemie shirts on him for us to hold him but then she took it off when she put him back in the isolette after I held him. I am sure either Kate or Sue will let us dress him in more of his clothes starting either tomorrow or Thursday when they are here. They have been telling me all along that he could wear clothes starting at 1500 grams. The preemie shirt that I put on him fit perfectly.

Brandon was at 21% again for last night and most of the day. He had to be turned up to 23% for two of his feedings but that was it. Dr. Rekedal was the doctor today. He came and talked to me and told me that Dr. Hudome had told him that she and I talked about trying him on nasal cannula. He said he was fine with that too and once Brandon hit 1500 grams he could be tried on it. So I am guessing in the next day or two they will try him on it. It seems like they will try him for short periods and see how he does like try him when we kangaroo. Brandon's feeds were increased to 28 cc's today/

Picture from Mark

Brandon's nurse Mark sent me this text message during my shower.

August 18, 2008

I just got back from my night visit with Brandon. He had a nurse tonight that said she had him when he was a day old. I don't remember her having him. I probably did not go to visit him that night since I was still pretty tired from the c-section then. After having her tonight she is not one of my favorites. You get some that you love and you get some that you don't like as much. At least all of them are good with Brandon.

Stu and I gave Brandon a bath tonight. After his bath his nurse wanted to replace his feeding tube so she took it out. He still had his CPAP off at that point so we took advantage and took a few quick pictures of him with nothing on his face. He did have some clear tape on still above his mouth but it is clear so you could see his whole face. The clear tape is to hold the velcro on which holds the CPAP on. He looked SO cute with nothing on. It really was nice to see what he will look like once he is done with the CPAP and feeding tube.

Brandon weighed 1468 grams tonight so he is almost 3 pounds, 4 ounces. He was also measured today and was 16 3/4 inches long. So he has grown almost 4 inches since he was born. When I left tonight Brandon was at 21% oxygen. He mostly seems to be between 21% and 23% which is good.

Baby Shower

My baby shower was today. It was so nice to see all of our friends and family that were there. Brandon was spoiled by everyone. He got so many great gifts. I had a great time. Mark was Brandon's nurse today. He sent me two text messages with pictures of Brandon when I was at my shower since he knew that is usually the time that I am at the hospital visiting. The first was a note that was taped to Brandon's isolette that said Happy Baby Shower Mommy Love Brandon. The second was a picture of Brandon and underneath he typed I love you mommy.

Stu and I went to the hospital this morning before the shower so that I could see Brandon. I kangarooed when we were there. Brandon is up to 1409 grams which is a little more than 3 pounds 1 ounce. Several of our friends and relatives came to see Brandon today after the shower. Stu and I both held him tonight.

August 16, 2008 evening

We got to the hospital tonight and then had to go wait in the Michael's Feat room which is a waiting room for parents of NICU babies because a baby in Brandon's pod was being transferred to CHOP. We were there for over an hour before we were finally able to stay with Brandon. He weighed 1378 grams tonight. Not a big gain but he finally pooped so that is why he probably did not have more of a gain. Stu and I held Brandon wrapped in a blanket again tonight. Brandon seemed very content to be held like that.

6 Weeks Old

I kangarooed this afternoon for a few hours. I spoke to Dr. Hudom and she said that Brandon is still looking good. His biggest problem seems to be his reflux when he is eating. He desats, although not as low as he used to, because of the reflux. There was talk during rounds of possibly having him take zantac but it sometimes causes sepsis (infection) in babies and they do not want that to happen to him. She said they might try a little rice cereal in his milk to see if that helps with his reflux. In the meantime they are going to just turn his oxygen up a little during his feedings since they know he will desat otherwise. Dr. Hudom said that he has done really well the past two weeks and that I should see even more improvement during the next two weeks. I asked Dr. Hudom when she thought Brandon would be able to come home roughly and she said 4 weeks give or take a little. So that seems to be right on track with what they have been saying all along. Brandon had to be given a suppository while I was there since he has not pooped in 3 days. Hopefully that will help. I am going to call in a few hours to see if it helped.

32 weeks corrected

I would have been 32 weeks pregnant today if I had not had Brandon early. Instead I have a 6 week old. Stu and I were talking tonight and can't believe it has been 6 weeks already. We have gotten used to being at the hospital all of the time but at the same time we are so ready to be done with this. Hopefully he will be home in another 3-5 weeks.

I kangarooed with Brandon this afternoon for almost 3 hours and then Stu and I both held Brandon tonight. Brandon has a blood transfusion today because he was a little anemic. He weighed 1376 grams tonight which is between 3 pounds and 3 pounds, 1 ounce. So he cleared the 3 pound mark! Kate, Brandon's nurse, dressed him in a t-shirt tonight and wrapped him in a blanket for us to hold him. He will probably be able to start wearing clothes all of the time by the end of next week. The babies have to be 1500 grams in order to wear clothes and he is very close to that.

Bath time

Here are some videos from Brandon's bath last night.

August 14, 2008

I was at the hospital this afternoon and Stu and I were there tonight. Brandon is still on straight CPAP and is doing well. His oxygen seems to be between 21% and 24% most of the time. Dr. Hudom said that they may try him on the nasal cannula this weekend for a little while and see how he does. I kangarooed this afternoon. Stu and I gave Brandon a bath tonight. He enjoyed it just like he enjoyed his first two baths. Brandon weighed 1304 grams tonight. He was down a little from yesterday but Kate, his nurse tonight, said that happens sometimes.

August 13, 2008 evening

Brandon weighed 1322 grams tonight so he is almost 2 pounds 15 ounces. I kangarooed with him for 1 1/2 hours. When I left the hospital his nurse, Salo, had him down to 21% oxygen on the CPAP which is room air. So he is doing a really good job.

On Straight CPAP

Brandon has been on straight CPAP since 10:30 this morning and so far is doing well on it. They want his oxygen level to stay at 92 or higher on straight CPAP or they will give him some assisted breaths again. So far he has been staying there except for when he is eating and then he goes into the 80s a little but comes right back up. He is getting 28% oxygen on the CPAP but they will start to lower him as he is doing well on it. It is okay that he is a little higher because he is doing all of the breathing on his own now. Each change requires more work for him. Brandon is also up to 26 cc's of milk. An ounce is 30 cc's so he is not too far from that.

August 12, 2008

Brandon had a good day today. I was at the hospital for 3 hours this afternoon and Stu and I were there tonight. I kangarooed tonight. Brandon weighs 1305 grams which is 2 pounds 14 ounces so he has gained 1 pound from his birth weight.

2nd bath and lots of good pictures

Stu and I gave Brandon his second bath tonight. There was a 28 weeker who was supposed to come to the NICU around the time we were giving him his bath so Sue let us do most of the bath by ourselves since they were getting ready for the new arrival which was nice. After his bath I held Brandon for awhile like a baby instead of kangarooing incase the 28 weeker did come during that time and things got crazy and Brandon had to go back. The 28 weeker never did come during that time, at least to our pod. We got lots of good pictures tonight. We even got some with nothing on him (no CPAP, velcro to hold the CPAP on, hat) after his bath before I started holding him.

August 11, 2008 afternoon

Stu and I went to see Brandon this afternoon. Stu kangarooed and then we both got to hold him like a real baby for a little while. It was great being able to hold him like that. Brandon is up to 24 cc's of milk every 3 hours.

August 10, 2008 evening

Brandon had a good night when I was there tonight. I kangarooed for 2 hours and he was good the whole time. Sue was his nurse tonight and I talked to her about the head ultrasound results. She said not to worry at all, that it means nothing about the ventricles being slightly enlarged. He weighed 1213 grams tonight so he is now 2 pounds, 11 ounces.

August 10, 2008 afternoon

Brandon continues to do well. He is still on 21% oxygen except for his cares when he needs to be turned up slightly since he gets mad that he is being disturbed. Dr. Alemany called before Stu and I went to the hospital and said Brandon is doing "amazing" and that he really turned the corner. He said he will be on CPAP for another 2 weeks approximately. He should be on straight CPAP sometime this week. Right now he gets some assisted breaths but they will stop that sometime this week so he is only getting oxygen. Once he comes off CPAP they will start with bottle feedings and not too long after will be able to come home. He is still getting his milk through a tube that goes through his mouth into his stomach. Probably he will be home in another 4-6 weeks it sounds like.

5 weeks old

I was at the hospital all afternoon and again tonight. Stu worked today so he came after work. I kangarooed with Brandon both times. Brandon has been at 21% oxygen since yesterday afternoon almost the whole time. His nurses have had to turn him up slightly for his feeds and cares but then they turn him back to 21%. He has been doing really well. He had 23 cc's of milk today. His weight was 1172 grams so another gain. Two nurses that had not seen Brandon in a few weeks stopped by his isolette tonight to see him. They both said how big he is getting. He really is starting to fill out a lot.

Evening Update

Brandon weighed 1159 grams tonight so he is now almost 2 pounds,9 ounces. He seems to put on an ounce everyday. I kangarooed for 2 hours tonight and he was very relaxed.

31 weeks corrected

Brandon was still on 22% oxygen when I was at the hospital this afternoon. Room air is 21% so it is great that he is so low. His pressure on the nasal IMV was also lowered. He is now at 50, which means he is getting 50 puffs of air a minute, instead of 60. He was switched yesterday and has been doing great. He is now getting 22 cc's of milk every 3 hours. Dr. Alemany talked to me when I was there about the results of the head ultrasound. The ventricles are slightly enlarged but Dr. Alemany does not seem to think it is a concern. He said the reason they are enlarged is because of having been on the vent and now on the IMV/CPAP. However, he needs to be on those. Brandon will have a repeat head ultrasound in a few weeks.

First Bath

Brandon had his first bath last night and really enjoyed it. He didn't cry and seemed very relaxed. Sue showed me how to do the bath and I did it. Before giving him his bath she told me that he might not be able to kangaroo after the bath because it might be too much on him. After his bath he was doing fine so she said I could kangaroo if I wanted. She thought my temperature would get his temperature up quicker than the isolette would. I kangarooed for almost 2 hours and he did great. He was very relaxed after his bath and just slept the whole time.

Brandon had his second head ultrasound yesterday afternoon. I will find out the results today. Sue looked in the computer last night to see if the results were in yet but they were not. She said that the lab is quick to call the NICU if there is a problem and they had not called so she said she is sure everything is fine.

Brandon is now 1127 grams which is almost 2 pounds, 8 ounces. I can really see how big he is getting now when I go to see him.