Saturday, August 21, 2010

Skylar's glasses and fairy wings!







Just an update!!!

Skylar is just had her 9 month birthday...So cute. She is such a little 9 month baby girl. Her current weight is 12 pounds, not very much. Her biggest struggle since she has been home is keeping food down and gaining weight. We recently put her on night feedings, which is similar to an iv pump that runs all night and pumps so much food per hour into her tummy through her mickey button. Some nights it doesnt bother her while others I have to turn it off because she will wake up puking, poor baby. She has a great team of doctors and occupational therapists that have been helping us come up with new ideas and ways to get her to eat and keep it down. Personally, I hope to get her eating some yummy foods like banannas and pears so she may like her birthday cake for her 1 year that is not too far off. On a good note, Sky's lungs are doing so well. She is on an 8th of a liter and soon to be on a 16th, which is nothing! She is so tuff! Some of you may not know that we added an addition to things on Skylar's face, glasses. She is very far sighted like her daddy and needs to wear glasses. After a long struggle to find her glasses small enough for her little face we found some little pink ones and they are adorable. They make her pretty eyes look even bigger! I will be sure to post a picture of her and her new glasses.
As for Ryan and I we are both very busy, we are back in school and Ry at his new job with GEICO. He works all week and has the weekends off, thank goodness! Fortunatly, we are very excited to be taking our first trip as a family very soon! I hope Sky does well! All and all we are doing very well. Skylar continues to be our amazing little miracle and a very happy baby too! We are so lucky to have her!

Friday, June 11, 2010

Just an update!

Wow, Skylar has been home a month! She is doing so good. She is so precious I just want to squeeze her all the time. The latest news with her health is she is going for another small surgery at the end of this month to get a mickey button to replace the tummy tube. While she is under they are going to scope her to see if there are any internal causes to why she vomits 85 percent of her feedings. Fortunatly, she is still gaining weight. Her little lungs still need sometime to grow, she is still on oxygen and has a little ways to go. Skylar is still full of attitude and spunk. She loves to talk to us, well make noises, laugh and cry when we are not giving her our full attention! We love it...her attitude is what makes her our little fighter. We will talk to you all soon and post pics!

Sunday, May 30, 2010

So cute



Skylar has been home 3 weeks as of yesturday. So far things are going pretty well. She and I went on our first car ride to the doctors alone the other day and she was so good. Luckily she slept almost the whole way which was a 45 minute drive there and back. We went to our first Resturant, Macaroni Grill on Friday and she did very well...no tears just curious looks the whole time. Her oxygen is nothing to me it's just another part of her body and where she goes it goes. The tummy tube isn't bad either only at feeding time and that is not possible in public not yet anyway. I'm just not that comfortable with it.....So I plan my time away to only be between 2-3 hours so I can go home and feed her. As for Daddy he has been very busy with his new job and studying. He spends time with her at night when he gets home from work, but other than that he is gone from 7 to about 530 and he misses her soooo much. He catches up with her on the weekends. Skylar as most of you know is a daddy's girl! She loves it when daddy gets home and starts talking to her she always smiles and laughs with him, it's very cute. That is not to say that her and I don't have plenty of fun during the day I just know that she misses her daddy.
As for her health, she is gaining weight, keeping her food down better and breathing fine. Her oxygen did have to go up a little but without the lasix and breathing treatments things are just a little harder on her little lungs. Her development, mentally is good she is with in the norm of her age and she is really learning to use her hands and feet. Her favorite thing lately is eating her fingers and kicking. She holds her head up really well and we are working on rolling over and standing up. Ryan and I are very proud of our little fighter. We will be sure to let you know more in a couple of weeks, hopefully she will be at least a pound more!

Just hanging out at home



Skylar spending time with her Auntie Saydee and Cousin Ella


Sunday, May 16, 2010

Skylar has come home!

Skylar has made it home after 6 long months in the NICU! It has truly been a roller coaster ride with so many ups and downs, but in the end we got to bring our little miracle home, FINALLY!! She came home the day before Mother's day what a blessing that was. The week was a little scary and tiresome, but we had a blast!

Our last day in the NICU!


Friday, May 7, 2010

Thursday, May 6, 2010

Good NEWS!!!!!!

Life at the Nicu has been crazy the past few weeks! Crazy good though, Skylar's surgery for her g tube placement went great! It was the longest hour of my life waiting for her to get out of surgery, but all was well when we heard her coming down the hall crying! Crying was a good thing because we knew that she was able to be extubated right away. Her recovery over the next few days went well and the g tube looks pretty good. The best news, the most wonderful thing is.....she is coming home!!!!!!!! Yes, finally our little baby girl will be home with mommy and daddy this weekend! We are so thrilled, a little nervous because she will be on oxygen and etc, but we couldn't be happier! Skylar will be a NICU graduate in just a few days! We will miss all the nurses, but not the life of the NICU. We have been truly blessed through this whole experience, we have met so many wonderful people and we have experienced and seen so many of life's miracles! I promise to keep u posted and we will be posting up pictures soon!

Wednesday, April 21, 2010

Just an Update

Skylar has had a hard couple of days because her little belly is giving her troubles. For the past 2 weeks or so, after almost every feeding she vomits. Skylar is on many medications and it's upsetting her tummy, but it could be reflux or something else. The last couple of days she has refused to eat by the bottle and she is not taking enough to be able to get her ng tube out of her nose. Sadly it looks like she will be getting a g tube put in her belly which will allow us to feed her through her tummy, if she does not eat by mouth. And she can go home with the g tube in her belly unlike the ng tube down her nose that she cannot come home with. In the next week or so she will be having the tummy surgery. The things that make Ryan and I nervous about this is not the actual g tube, but the fact that she will be intubated again. It's scary because worse case, she could get stuck on the tube and have to be weened all over again. If all goes well and the tube comes out right away and there is no infection and she comes back down to a low rate of .2 liters per minute, than she could come home in a month! Skylar is a strong little girl and she has gotten through so much that we think she can do this too! Please keep your fingers crossed and her in your prayers because we need this tummy surgery to go well. I will keep you informed and let you know how it all goes!

Sunday, April 11, 2010

Saturday, April 3, 2010

Skylar's nurse Erika

Play time!

Our little family

Skylar and her baby gym

Skylar is getting so big!

Skylar reached 8 pounds 10 ounces last night! Her chubby legs and arms are so adorable, she is our little chunk! Skylar's progress is an amazing thing to watch everyday. She is our little noise maker, constantly grunting and talking baby talk. She continues to put a smile on our face with her little expressions including the eye brow lift and scrunched face. Ryan and I love talking to her and even making faces at her because she will just stare at us trying to figure out what we are doing. The newest thing we have been doing with her is playing on a mat that is on the floor in front of her crib. We set up her baby gym and watch her play with the toys hanging above. Skylar has learned to scoot around on her belly and she loves to kick and wave her little arms! She is growing up and taking in everything and we love every minute of it! We are so thankful that there are cuddlers there to hold her when we can't be there and her nurses take such good care of her and we can't thank them enough.
As far as her health she is doing really well! The good news is that she is growing and gaining weight quickly. As she grows she will make new lung tissue and it will become easier and easier for her to breathe. Her oxygen settings still have to come down a lot, but she has made it from 2 liters to .9 in a couple for weeks. It is all a waiting game now. To go home her oxygen needs to be at a 16th of a liter, so it will be a little longer. Sadly we just got the news that her time frame of leaving the nicu will be from 3 more months to possibly being there her first birthday. The doctors can not push her on her oxygen because she has to do it all on her own. Unfortunatly, her severe lung disease enables the doctors to get her home any faster. It is all a matter of time. Ryan and I are trying to focus on what she is, a miracle that had only 10 percent chance of living and that 1 year of her life in the Nicu is nothing compared to the rest of her life with us here. I'm not saying it's easy because having her home is all we want everyday and the hospital was old a long time ago, but it is all out of our hands. Everything is up to our little girl, she is so strong and we are just so grateful that we know she will be okay and that she is coming home. We want to thank everyone that continues to follow her progress and we know that all the prayers from everyone has brought our little family miracles. I promise to be better and updating everyone sorry it has been awhile.

Monday, March 1, 2010


Still here.....

Yep...we are still here in the NICU...waiting for our baby girl to come home. It's hard to put a timeframe on her homecoming but we think that she is making great progress and will be home soon. Sorry :)....that's all we got! We know everyone is wondering!

So currently Skylar is battling a little cold...but she continues to amaze us with her strength and will. She is starting to bottle feed and continues to progress on the nasal cannula. Her oxygen flow fluctuates between 50-65% at 2L per min. She's still got some work to do but so far, so good. We hear that we will probably be taking her home on some form of oxygen and/or breathing treatments. That's just fine for us! We just want her home! NICU life is by no means an easy walk. Day after day we drive to the hospital...drive home...drive to...drive home...talk to the doctors...stamp the little parking pass...get in the overcrowded elevator to the 8th floor. Uggghhhhhh! Normal? What is normal? 2009 and beginning of 2010 has been the best time of our lives...but seriously, let's not do that again please.

On another note...Sky is still dealing with hydrocephalus. The doctors are watching it closely as it still continues to remain small. Jourdan and I just hope and pray that it somehow resolves. If you are wondering what this condition is...it's basically fluid build up within the ventricles of the brain. There is a wide span of severity and outcome for this but from what we know, Skylar's is mild, and probably developed from just being born premature.

Good news is that her ROP is stable...her lungs are improving, she's learning quickly with bottle feeding ,and is 6 1/2 pounds! We have also caught a few smiles now and then too!

Jourdan and I... and Skylar too want to thank everyone for your prayers and thoughts. We seriously couldn't get through this without you! You keep us going knowing that we have so many people that care.

We also want to extend a special thank you to Skylar's NICU nurses. We think the world of you! Skylar is where she is today because of the love you share with her! How lucky is she to have you there. The relief we feel when we hear your voice on the other line, or see you at her cribside as we walk through the door is huge! Thank you so much.

...more updates to come as we progress through the nasal cannula and feeding stage these next few weeks.