Car seat challenge and going home this week

Morgan is getting so close to going home. It looks like it will be sometime this week. He passed his car seat challenge today. He had to sit in his car seat for an hour and a half without dropping his sats and he did well. He was getting a little fussy with 15 minutes to go but luckily I was able to be on pacifier duty and that calmed him. Morgan will be going home on oxygen (they did a room air challenge last week and he did alright but he definitely does better with the oxygen). It's funny because he is on so little...only 21% which is room air so he isn't actually getting any extra oxygen at .05 liters which is nothing really but it seems to make a difference with him. So he'll have the oxygen and an apnea monitor. He doesn't have apnea episodes but I guess at that hospital if you go home on oxygen you automatically go home on a monitor. The monitor will be a pain but it will give me reassurance when he first comes home. I will also have a spot check monitor to check his oxygenation settings. I will probably have to do this a couple of times a day. He will be on two medications (which isn't much for a 24 weeker), flovent which is an inhaled steroid for his lungs and a diuretic to rid extra fluid in his lungs. Both will be given twice a day. Right now he is on thickened feeds so he can coordinate the suck/swallow/breathe combination which he is doing much better with. Tomorrow they are going to do another swallow study to see if he can be reduced down from the honey thick which is the thickest they can make the formula to nectar thick which is in between honey and regular. I really hope the study shows he isn't aspirating the nectar thick anymore because he gets so worn out trying to suck the honey thick through the nipple. Last week they also did an ultrasound of his scrotum and didn't see any intestine so they think it is just a hydroseal (trapped extra fluid) for now, it will have to be monitored to make sure the hernia doesn't reopen. Overall Morgan is doing awesome and I am so excited for him to come home. It has been a very long journey!

Quick Update

Morgan is doing very well. His feedings are going much better. They are feeding him 30 ml by bottle every feeding out of 50 ml total that he is eating. In the next couple of days they will probably increase the amount he is eating by bottle so hopefully we can get the feeding tube out soon!! This really is the last hurdle keeping us in the NICU. I also spoke to one of the doctors this afternoon and she mentioned that there might be something going on with his groin region where he had the hernias. The area is still very swollen, even 5 weeks after surgery and she thought she might have felt some intestine like the hernia has reappeared. The doctor said it could just be extra fluid. She looked at him again this afternoon and didn't feel any intestine so I am really really hoping the hernia isn't back! I really don't want him to have to go through another surgery, the first time was bad enough! But other than that he is doing very well and I am really hoping coming home in the next week or two!

Morgan could be going home sooner

Hello everyone. My mom and I spent a lot of the day with Morgan today. We had a really good visit. He is up to 6 pounds 13 ounces! His nurse today was talking to us a lot about what we will need to do when he goes home. She seemed to think it would be sooner than 44 weeks if we can get his feeding going well. He did well today with the thickened formula and making sure we paced him. Part of the problem is if he gets too hungry he sucks and sucks and forgets to breathe. So in the beginning the nurse showed me how to lower the bottle in order to pace him but after he got some of the formula in his belly he started to pace himself. He only took 20 ml from the bottle from a total of 50 ml but they are going to gradually increase it. So hopefully he can get the feeding down soon and we can go home. It sounds like he will probably go home on oxygen which is fine with me. At this point I am just ready for him to come home.

I also got to give Morgan a real bath today. I'm not sure if he has ever had one. I think at UVA they just wiped him down with disposable wash cloths. My mom and I were concerned that he might not like the bath because he hates to have his diaper changed but he absolutely loved it!!! It was so cute to see. When I was washing his hair he started to fall asleep. It's also funny that at Fairfax they use a plastic storage bin with a mesh incline as a bathtub. I posted some pictures below of Morgan with his new frog blanket -- thank you grandma Bosarge :) and of this bath today. The bath pictures look red because he was under a heat lamp. The heat lamp was pretty nice, I might have to have Brad put one in at our house!

Another 4 weeks :(

Hello everyone. I spoke with the doctor at Fairfax to get an overall update and he thinks Morgan will probably be in the NICU until he is around 44 weeks which takes us to April 12th. The two major things are his feedings which aren't going so well lately...he tends to drop his heart rate and oxygen saturation and his eyes. They are going to do a swallow study on him sometime this week to look at what the formula is doing while it goes down this throat. They somehow dye the formula so it can be seen on an xray to see if he is either refluxing or aspirating (inhaling some of the formula). I am really hoping the study will show what is going on so his feedings can improve. He had another eye exam today and I guess the ROP hasn't gotten better and it hasn't gotten worse although the ophthalmologist sounded optimistic that his eyes will correct themselves but he will continue to have weekly eye exams. So...other than that Morgan is doing well...what is another 4 weeks when you have already gone through 15 weeks already?

Keeping a micro-preemie healthy

Hi everyone. Morgan is doing well. I saw him this afternoon and they had put him back on just a flow of oxygen. He is still on 21%, so he isn't requiring more oxygen just a flow of it. He has been having desat episodes. He is still trying to figure out eating. I tried to feed him this afternoon and he would Brady (drop his heart rate) which I haven't seen him do before but the night nurse said she didn't have that problem last night when she fed him. She said he did pretty well except he dropped his sats twice but took most of the bottle. So we'll see, we haven't quite figured out what is going on...it may simply be that he needs more time. Morgan will have another eye exam tomorrow to see if the ROP is improving...hopefully it is!

I thought I would post this list of things to do to keep preemies, especially micro-preemies healthy. When Morgan comes home the most important thing for anyone to do before they touch him is to wash their hands. Here are some ways to keep him healthy:

1) Hand washing. Hand washing, Hand washing! Hand washing cannot be emphasized enough. It is the single best way to avoid the spread of disease. Every single person who touches a preemie (or any baby) should first wash their hands. This includes friends, family, siblings, healthcare workers, and even parents.

2) Stay away from sick people. This may seem obvious, but do not let sick people visit and do not visit them with your preemie.

3) Avoid crowds. The grocery store and malls are full of people and germs. Even churches can be a hazard, especially because everyone will want to admire your preemie up close. If you have to go out with your preemie pick a time of day when there will be minimal exposure to crowds and do not be afraid to ask people to step back.

4) Hand Sanitizer. Recent studies have shown that the proper use of hand sanitizer can decrease the transmission of disease in the home. It is a great option when there is no sink available or when you have the baby on the changing table.

5) Smart scheduling. When making doctors appointments ask for the first appointment of the day or the first appointment after lunch. This decreases the risk of exposure to other children in the office.

6) RSV and Flu preventatives. RSV is a virus that presents as nothing more than a cold in most children, but it can be a very serious for children at risk including many preemies. Ninety percent of the population is exposed to RSV before they reach two years old, which means it is very likely that your preemie will be exposed to RSV at some point. The drug Synagis is given as a monthly injection to protect against RSV. Synagis decreases the severity of RSV but it does not totally prevent children from contracting RSV. The flu is also a very serious illness in young children. All adults around your preemie should get a flu shot every year.

7) Be the gatekeeper for your child. One of the most important responsibilities any parent has is to be the gatekeeper for their child. This is especially true for preemies. Do not feel bad telling well meaning strangers that they cannot touch your child. Let family and friends know that they cannot come into your home with so much as a sniffle.

8) No smoking. Smoking has been shown to increase the risk of RSV and other respiratory illness in preemies. Yet another good reason to quit and to ban smoking in your home. If you have been smoking change clothes before touching baby.

9) Limit Exposure from older siblings. If there are older siblings in school it is important to teach them how to prevent the spread of infection. Emphasizing hand washing and limiting close contact as much as possible, especially if the sibling is sick, are the best ways to keep older siblings form spreading illness to your preemie.

Lastly, if you do happen to get sick try to stay away from your preemie and let another caregiver take over until you are no longer contagious.

Morgan continues to do well. He is working on his feeding. He will usually take about half of the bottle and then get tired and they will put the rest in the tube. He is now in a big boy crib at the NICU in Fairfax.

Morgan was transferred to Fairfax Hospital

Hi everyone. Well there are two big pieces of news....Morgan has been transferred to Fairfax as of today to be closer to home. We can now visit him more often during the week. I just got back from there and the NICU is a lot different than UVA. I miss UVA but I think it is just going to take some getting used to the new place. Hopefully Morgan won't be there too long anyways. The other big thing and definitely more important is that Morgan has been off of the nasal cannula for a day now. He has no sort of respiratory support, he is just breathing room air and so far so good. The next step is to take him off of the caffeine which helps stimulate babies to breath....so hopefully after they take him off of that he will continue to do well. So things are going well with him and he is becoming much more animated and making faces.

Morgan's Room

We just got the crib together and I thought I would post some pictures of Morgan's room. All of the frog stuff I bought off of Ebay used for $60!

The weekend with Morgan

We had a good weekend with Morgan. Brad and I went down Friday night and spent some time with him. This was the first time Brad has seen Morgan with just his nasal cannula. On Saturday my friend from work Kara and her husband and son came down to see Morgan. It was so nice for them to come down...thanks for letting me borrow the vibrating chair Kara! Then Saturday afternoon my mom came down and stayed until Sunday. Morgan is doing very well. He is just working on his feedings. He is bottle feeding every other feed and drinks most of the formula during a feeding. Morgan was very alert this weekend, quite a few times he has his eyes wide open just looking around.