Wednesday, September 23, 2009

I Love

I Love having a girl, I am so excited!

I Love that the boys love having a sister. Skyler says all day long phrases like 'baby Ryley is the most beautiful girl in the universe' or 'baby Ryley is the best girl in the world' I try not to take offense that I am not included in the elite group. Ethan simply repeats himself all day 'she is so cute, she is soo cute...'

Sunday, September 20, 2009

She came home

Yay, we finally got to bring Ryley home from the hospital, it is soo nice. I am totally exhausted, and I have to fend off her brothers that love her soo much all day, but she is home where she belongs. Now all of the doctors appointments begin...

Friday, September 18, 2009

Ryley 09-18-09

She is posted for discharge on Sunday!!! As long as she doesn't alarm in the next 24 hours, she will meet all requirements by tomorrow afternoon. Tonight they will do the car seat test, tomorrow I will get my discharge teaching, and Sunday morning we will be on our way home with our princess, and I am soo excited!

Thursday, September 17, 2009

Ryley 09-17-09

Nothing but good news and encouragement. Ryley continues to improve, she is 72 plus hours alarm free,and her feeding went from 50 % gavaging to 10% gavaging, so if she continues to improves as she is then we will get to bring her home sooner than the 3 more weeks that I was told to expect. I am probably jinxing it, but I am hopeful!

Wednesday, September 16, 2009

Ryley 09-16-09

Our little princess continues to improve. It seems that today she has decided that she enjoys feeding, and has bottles really well. She is also over 48 hours alarm free since the caffeine has been discontinued.

I saw the lactation physician today, and she prescribed a miracle cream. I have used it twice, and I feel great! It could be that it is fixing the problem, or that it has pain killers in it, who knows, but I like it! Her suspicion is that I have eczema, which I do get on my arms in the winter, and because it is being irritated by pumping, and I am raw I am really prone to getting bacterial and fungal infections, so when I am treated, it will come right back, or I will just get something else, and the pain never goes away because the eczema itself is so painful when irritated.

Overall today was a great day.

Donations for the NICU

I am going to organize donations for the nicu, this is my second baby in there, and they are an amazing team (although I would be soo happy to never have to go back!)

They asked me for a few things specifically, although there is a lot that they could use that they do not have the funding for.

Scrapbooking paper and supplies - the nurses like to make little name tags for the isoletes to make it a little more personal, and easier to identify. They have no budget for this, and rely on donations.

Baby boy stuff, newborn and premie onsies and sleepers, as well as blankets. They have a lot more boys that girls in the nicu, and they never seem to have enough for what they need. They would appreciate girl things as well, but they have a higher need for boys.

Baby wrap, as well as instructions to use it - they would love a couple of baby carriers that they can get the baby out of quickly, but would allow them to keep the baby upright, and thier hands free.

mobile or other things to stimulate older babies. some of the babies are there for upwards of 3 months and need some stimulation

Swing to allow them to sooth some of the older babies wanting more attention

any number of other things that you can think of.

If any of you are able to make something, or donate something I am going to spend the next couple of weeks gathering up what I can. The nurses and staff in the nicu have kept Ryley going, and are so supportive. Please help where you can.


Tuesday, September 15, 2009

Ryley 09-15-09

Ryley continues to do well. She made it 24 plus hours alarm free after having the caffeine discontinued, and I hope to go in to the hospital tomorrow and have that up to 48 hours plus. her feeds are ok, not fabulous, but not horrible. When I feed her it is typically 3/4 or more of her feed that she will take from her bottle. Jordan got to feed her tonight, and she took all but 3 ml by bottle. she would not finish the last 3 ml!

I think she is beautiful, and I am soo excited to bring her home. I hope to continue to see improvements!

First Day of Preschool

Yesterday was Skyler's first day of preschool, and he was soo excited. He was super happy that he got to use his spiderman backpack, lunchbag, and drink bottle. There is a new preschool in our community that he gets to go to which is nice because it is soo close, and a friend from church has her son in Skyler's class, so she has offered to pick him up from school while I am dealing with Ryley which is such a huge blessing!Ethan was super jealous, and wanted to do everything that Skyler did. He had to have his backpack, and his water bottle, and he would have happily stayed at school with Skyler. I don't have a picture of Skyler at school because he promptly took off into the thick of the action in circle time as soon as we were in the door. It was a struggle getting his attention long enough to have him take his shoes off, and hang up his backpack.

I really think that preschool will be good for him this year. He is a very social child, and needs the stimulation. Tonight I took him to a screening offered by his preschool, and on Saturday his is going to have a formal assesment of his speach. There are about 4 letters that he doesn't pronounce, but his language skills are excellent!

Monday, September 14, 2009

Ryley 09-14-09

Ryley has had 2 days of alarms now, and I fought with a nurse today to put in a smaller feeding tube. She struggles with and obstructive airway, but because gavaging is faster with the bigger tube that is what they put in. I won, and she no only has a partially obstructed nasal passage. (up to 2 days ago her feeding tube was in her mouth because of this) She was taken off caffeine today, so we are watching her to see if we have a set back, or if we get to keep moving forward. her feeding went well today, but it is moving slower that I would like to see, but she is earlier than Ethan, and I remember it being hard to establish with him as well. I have a fancy little camer that a sweet friend has let us borrow, so I have some more pictures, they will be up tomorrow.

Sunday, September 13, 2009

Ryley 09-13-09

XMy baby is 10 days old today, and still has not seen the outside of the hospital. She made it to 92 plus hours without an alarm, and then she had an episode this afternoon. I actually feel pretty guilty for this one, which may not be warranted, bu that is how I feel. I have my breast infection, and it is looking more like a staff infection, than yeast and there is a chance that it can be passed through my milk, and I fed her milk yesterday afternoon that I had just pumped. Did she have the episode because she now has an infection that they searched so carefully for beforehand? Regardless tomorrow is going to be a big day, we hopefully get to try going off the caffeine which may be a step in the right direction, or we may have a huge set back. I also have an to call for an appointment with a lactation specialist (as in Doctor, not nurse consultant) because of my wonderful infections. I have decided to give it 3 weeks, and if we don't have a solution, and I am not feeling better, than we will go for formula. With Ethan I gave it 3 months, they never figured out what was wrong, I hurt all the time, and I was soo happy once I finally made the decision to go to formula.

Skyler made the trek up to the hospital today and got to hold Ryley for the first time. He is a very proud and loving older brother, and I am excited to have Ryley home to see that relationship grow and change.

Saturday, September 12, 2009

Ryley 09-12-09

Nothing much has changed, she has another day down that she has been alarm free, her feeding is still looking like it will be an issue. She can't be bothered to wake up for feeds, and just lets them dump it in the gavage. Regardless I cried all the way home from the hospital today. I just want my baby home. I want to be able to change diapers, have sleepless nights with her, clean up all of the spit up. I don't want to miss the first month of my babies life. She is 9 days old now, how old will she be when I can finally adjust to having a new baby in my home?

Friday, September 11, 2009

Ryley 09-11-09

Today is more of the same, more improvement. She is 48 hours plus without and episodes, and is currently feeding about 1/2 orally, with the other half being gavaged through a feeding tube. I did however have to make a trip to the doctor myself because I already have a breast infection, and I am not even nursing yet, just pumping. With Ethan I had an infection for 3 months before I gave up because I was in too much pain, and I was on dozens of different drugs, seeing the doctor numerous times a week, and they were never able to figure out what it was and get rid of it.

Thursday, September 10, 2009

My other children

I have felt really bad for my boys the past week, and I know that it is normal for things to be a little hairy when there is a new baby, but our baby isn't even at home. I have been shipping them off, or having people come over to watch them every morning so that I can go to the hospital to spend time with Ryley, I try to spend the afternoons with them, but that is when Ethan naps, and I am soo tired that we tend to just read books, or watch cartoons. I am back up at the hospital some time in the evening, so really I feel like they are getting very little stimulation. I took them up to the park the other night to run off some energy after dinner, and before bed and my next trip to the hospital.
Skyler loved it, and Ethan would not let me get a picture of him, at least not one where he was actually looking.
On a side note, we bought a new camera, and I was soo happy, but then the picture quality was really bad even though it was higher resolution then our old one, but it started to randomly delete pictures, so it was returned, adn I am camera less again. All we have for pictures right now are our cedll phones. Thankfully we have those to capture special moments, even if the quality is a little low.

Ryley 09-10-09

She continues to improve which we can't help but be grateful for, but with these improvements it becomes painfully obvious how slow the process is going to be. Ryley no longer has the IV, so her feeds are strictly milk, although they are a large portion gavaged which is through a feeding tube instead of bottle or breast because she is too tired to feed. She is over 24 hours (close to 48 now) without any episodes. The doctor said that they will wait until monday to taker her off caffeine (this is the slow part) after she is off caffeine then we can start counting our 5 days episode free.

It is soo much nicer holding her without the IV, and more fun to visit now that she is in a normal isolete instead of the incubator.

We are soo grateful for all of the support. Skyler is quick to tell anyone who visits that the flowers are for baby Ryley, they sure are a beautiful addition to our kitchen!

Wednesday, September 9, 2009

Ryley 09-09-09

Ryley continues to improve, in fact since 3am this morning she has not had an episode. She is feeding well, but the feeding tube is still in, it seems that she likes to sleep at night, and cannot be bothered to wake up and feed. She still has an IV, she is onto her 7th site in 6 days - the good news, if it comes out again her feeds will be high enough tomorrow that they will not put it back in. The nurse practitioner came to talk to me after rounds this morning to explain to me the criteria that Ryley needs to meet before she will be discharged. It is great to have information, but she told me to plan on another 4 weeks in the nicu. Ryley needs to have 5 consecutive days episode free, as well as be taking all of her food orally - those seem easy enough so maybe Ryley will surprise us, and meet them sooner, but for now we are planning on 4 more weeks.

Tuesday, September 8, 2009

Ryley 09-08-09

We are soo blessed!

Ryley continues to improve, I am kind of waiting for our set back. After not being sure that she would make it through the night on Saturday she has made steady progress. Last night she only had 2 episodes, and as of 5 o'clock today she hadn't had any today. Her breathing, and feeding tubes were removed today, and she seems to be doing well, she has taken a bottle and loves it! Today we had neuro testing, and we will not have official results for a few days because the tests get sent to children's hospital to be read by a pediatric neuro specialist.

We have so many friends and family members rallying behind us, we really do feel loved. Thank you for all of your strength and support, whenever I feel weak, I have other to help lift me up, and encourage me to keep going.

Monday, September 7, 2009

Ryley 09-07-09

I love that we can now hold Ryley. We are seeing slow progression, but we will take whatever we can get. She is feeding now, although through a tube, she has been taken off her antibiotics that she was on. She is still having episodes, but can recover from them on her own most of the time, and they are less. All of these things are fabulous, and I want nothing more than to have her home with me, but I am so grateful for the amazing nurses working each day to keep my baby alive. I am grateful for the doctors too, but lets be serious the nurses are the front line, they are the ones getting their hands dirty caring for Ryley day in and day out! This is one of those times that I am also very grateful for socialized healthcare.

Sunday, September 6, 2009

Ryley 09-06-09

Believe in miracles, no matter how small. Jordan and his uncle Paul gave Ryley a blessing this morning. I had to get special permission for Paul to come into the nicu, and they really don't understand that in our church men can hold the priesthood, and not be a priest, or minister. She has been on oxygen since she was born, which is why I have been unable to hold her. She was basically in something like a plastic bag, and they were able to anoint and bless her by putting their hands into the bag . I was at the hospital with her for about 2 hours after the blessing, and right after we left she was taken off of oxygen, and has not needed it all day! I was able to hold my baby tonight!!! she keeps having these attacks where her heart rate drops, and then she causes all kinds of trouble, but being off oxygen is one small miracle, and I am going to take it, and hold and cuddle my baby girl every chance I get!

Saturday, September 5, 2009

Ryley 09-05-09

I was discharged from the hospital this morning at about 10am. We spent some time with Ryley before leaving. I hadn't been home an hour before I got a phone call to give permission for a Lumbar Puncture. Apparently at 10:28 she coded for the first time, and then repeated it throughout the day. We knew that we were dealing with respiratory problems, but as long as we were in the hospital it was mostly oxygen saturation issues, and now she decides that breathing is optional.

I am a total emotional wreck, but hey, I had a baby less than 72 hours ago. I do feel totally blessed by the outpouring of support and love from friends and family. I know that everything will be ok, we just need to get through this trial of our faith first.

Baby Girl!

Baby Ryley was born on September 3rd 2009 at 6:41 am after my water broke 6 weeks early again. She is in the nicu with some respiratory problems, but that is to be expected when she comes as early as she did. I am home from the hospital now, and just praying that she can join us at home soon. She was 5 pounds 5 ounces, and a short 18 inches long. As of today she is still not feeding, and is being nourished only by the iv, but we are hoping for feedings to start in the next day or two. We love her tons!