Here are some pictures from the past week. Brandon is doing great. The visiting nurse was supposed to come for the last time tomorrow but the insurance company won't pay for anymore visits so she won't be coming. I was looking forward to seeing how much he weighs but I will have to wait for his pediatrician appointment which is in mid-November. Stu and I went out last night for the first time. We went to the Coldplay concert. The daughter of one of Brandon's primary nurses babysat. She is going to school to be a nurse and is trained in both CPR and on the apnea monitor.
I am posting about a very important matter: RSV. For those of you who plan to visit us over the next few months, and even if you are not, please take a few minutes to read this.
I want to start by saying that we are experiencing the biggest challenge of our lives, and we’re lucky to be surrounded by so many family members and friends who have shown us so much love and support.
We’d also like to share an important topic that we recently discussed with our pediatrician. If you are not aware of RSV, respiratory syncytial virus, you are among the majority. Most people have not heard of RSV, even though nearly every child has had the virus by age two. For full-term babies, RSV typically is not any worse than a common cold, but for preemies, the virus can be quite different. Babies born earlier than 36 weeks are at the highest risk for serious complications like pneumonia, bronchiolitis, and other sometimes fatal complications.
Brandon was born premature, was a multiple for the majority of the pregnancy, and had a low birth weight; these are among the highest risk factors for contracting RSV and developing serious complications. This website offers a great visual comparison of a preemie’s lungs compared to the lungs of a full-term baby: http://www.preemiecare.org/LungsTrees03-4.pdf
Preventing the spread of RSV is very difficult. Thus, we must be vigilant about keeping Brandon safe during RSV season (October through April). The virus is spread through physical contact, in the air via a cough or sneeze, or by touching an infected object. The virus can live as long as six hours on hands and up to twelve hours on objects, and it spreads very easily, especially from child to child. Studies have also shown that infants pose an even higher risk of spreading RSV to others.
You may ask, “Can’t they fight it off and build up their immune system? Kids need to get sick, right?” The simple answer is NO. Since Brandon was pre-term, he did not acquire the necessary immunities to fight off infection. If he contracts RSV, he could be hospitalized and develop serious complications.
We’ll be asking our visitors to follow a few guidelines to help prevent Brandon from contracting RSV or any other illness.
We ask that all visitors do the following:
1. When you arrive, please wash your hands and use hand-sanitizer as needed before touching Brandon.
2. Please, if it is possible, get a flu shot.
3. Please refrain from coming over if you are currently sick and have not been symptom-free for at least 5 days, if you live with someone who is sick, or have been in close contact with someone who is sick.
4. If you smoke, we ask that you change your clothing and refrain from smoking prior to visiting, as a preemie’s lungs are very sensitive to smoke. Most RSV sites recommend against passive smoke exposure.
5. If you are parents to a baby or toddler, please refrain from bringing them to our house during RSV season.
Unfortunately we will not be attending many events during RSV season. Our goal is to make it through this and the next RSV seasons without Brandon contracting RSV or any other serious illness. His lungs are still very fragile until he is 2-years-old.
Please understand that this post is not meant to offend anyone, just simply to provide an explanation. We hope you understand, and we appreciate your help keeping our baby safe.
Here are several resources with additional information about RSV below. http://www.preemiecare.org/rsv_resourceshtm.htm http://www.preemiecare.org/rsvfaq.htm http://www.preemiecare.org/rsv2.htm http://www.mostonline.org/preemieBB/viewforum.php?f=82
Brandon had an opthamologist appointment this morning. His eyes still do not have plus disease so he still does not need the laser surgery. Dr. Turtel says they look good enough for him to come back in 2 weeks instead of next week. We have been going weekly since he was discharged. His eyes still have not finished developing even though he is past his due date when they should have which is why he needs to go back.
The visiting nurse also came today. Brandon weighs 7 pounds, 15 ounces. That was naked so I guess yesterday's weight even though he had his diaper and onesie on was accurate. We did tummy time with Brandon while she was here and played on his playmat. He was wide awake for a few hours this morning just looking around and kicking. He also has been downing his 3 ounce bottles the past few days so I am slowly increasing the amount he drinks by 5 cc's a day.
Brandon went to the pulminologist (Dr. Sembrano) for the first time today since being discharged from the hosital. He went for two reasons. One was so he could get his next RSV shot and the other reason was to see how he was doing with the apnea monitor. The nurse weighed Brandon when we got there and he weighed 7 pounds, 14 ounces. I am sure it is off a little because he had a diaper on (it was dry) and his onesie and the apnea belt. The visiting nurse comes tomorrow so I will have a more accurate weight then. Dr. Sembrano then came in and did an exam on Brandon. His lungs sound great and he was very happy with how Brandon is doing. He hooked him up to an oxygen machine to see what his oxygen saturations were and his sats were 99% which is great. Dr. Sembrano said as Brandon is growing so are his lungs which is helping him do well. He is going to keep Brandon on the two diuretics at least until we go back next month for the next RSV shot. I am allowed to take Brandon off of the apnea monitor when he is awake. The only time he needs to be on it now is when he is sleeping and if I am not in the room with him. It showed that Brandon is doing some periodic breathing but that should resolve itself eventually. He has not had any apnea episodes.
Brandon had a pediatrician appointment today for a weigh in. He is now 7 pounds, 7 ounces. I had him at the pediatrician a few days ago too since he sounded snotty and he weighed 7 pounds, 5 ounces that day. I didn't believe that the nurse had weighed him accurately but obviously she did if he weighed 2 more ounces today. I can't believe how much he is growing. He saw Dr. O'Brien today and he said that everything looks good. He had the rotavirus vaccine which he did not like. It is an oral vaccine and he must have not liked the taste of it. Brandon does not need to go back to the pediatrician for 4 weeks.
I brought Brandon to the opthamologist this morning for his appointment. Still no plus disease so still no laser surgery. There is a little improvement in his eyes but they are still stage 2 with a little stage 3. That should start to improve soon. Usually it does by the time they should have been born but Brandon is past that date already. Sometimes they just take a little longer. He wants to see Brandon again towards the end of next week. The only day that he had available was next Wednesday so we go again then. Hopefully at that point they will be improved enough that we can space out his appointments a little.
I brought Brandon to the pediatrician yesterday because he sounded snotty. The visiting nurse told me that it is because of his reflux but I wanted to make sure. Dr. Sasson saw him and said his lungs sound clear. He told me to use saline drops many times throughout the day for the next 4 days and that should help to loosen everything up.
We gave Brandon his first bath in his new tub the other day. He outgrew the basin that we used to bathe him in the hospital. He seemed to like his new tub.
Today was my due date with Brandon. It is weird that I should be having him today but instead I have a baby who is 3 months and 5 days old. The visiting nurse will be here later this morning to weigh him and look at him. At the cardiologist yesterday he weighed 6 pounds 11 ounces but that was with his diaper on so he is probably a little less than that.
Brandon had a cardiologist appointment this morning with Dr. Rivera. She looked at his heart and said that his VSD is getting smaller. He also has another hole but I don't remember what she said it is called. It is not a concern and is there because he had lung disease. It apparently takes away the pressure from the lungs. Both holes should close on their own eventually. Brandon needs to go back in 3 months.
This morning I took Brandon to Dr. Turtel, the opthamologist, for his follow up eye exam. His eyes still have no plus disease and are still at stage 2, zone 2 so still no laser surgery. Dr. Turtel still feels they probably will not get worse so the need for laser surgery in the future is also very low. I have to bring him back next Tuesday and then at that point he will probably start going every other week.
This afternoon Brandon had a pediatrician appointment with Dr. Sasson. He is now 6 pounds, 8 ounces and 19 inches long. The nurse said this is probably what he would have weighed if he was born on time which is a perfect weight for newborns. Speaking of my due date October 10th (my due date) is kind of like Brandon's second birthday. It is what is considered his adjusted age. For all developmental purposes this date will be used to track him. So even though he will be 14 weeks old on his due date, he will be 0 days old developmentally. Brandon goes back to the pediatrician next Monday but everything looks great.
We had a visiting nurse come out to the house today to look at Brandon. I originally debated not having her come since he has so many doctors appointments and is being monitored well from all of them but I decided to give it a try to see how it was. Stu's insurance company, Aetna, had called the other day to inform us that we were being approved for two home visits. Before that I had no idea that it was even a possibility. She wound up being very useful. She had some good suggestions for elevating his bassinet which I had been trying to do but had not been too successful with. It has to be elevated because of his relux. She measured Brandon's head, listened to his heart and lungs (they both sound good and she could hear his heart murmur), and weighed him. He now weighs 6 pounds, 2 1/2 ounces. I can't believe how big he is getting since he came home! This Saturday will be a week since he came home and he has gained almost a pound. The visiting nurse will be back next Friday.
Brandon was awake all night last night. He seems to have mixed up his days and nights because of course he has been sleeping all day today. I am exhausted. Hopefully he will sleep a little better tonight.
Stu and I took Brandon on a walk to the firehouse the other day and then I took him on a walk in the park with my friend Sommer and her baby.
My name is Karen and I have been married to my husband Stu for a little over 9 years. I was pregnant with twins and lost our baby girl at 20 1/2 weeks after I had premature rupture of membranes. I stayed pregnant with the other baby and our first child, Brandon Tyler, was born on July 5, 2008 at 26 weeks and 1 day. Our second child, Wesley Matthew, was born full term on June 29, 2011. This blog is documenting our children.