Had a weight check yesterday with our little girl and she is now 7 pounds 14 ounces. She is slowly getting bigger, which is good for her damaged heart.Kylie is even starting to fit into 3 month baby clothes. It will be fun when we get to buy size 1 diapers instead of the newborn. Kylie's breathing is still okay and we use oxygen when she sleeps. We look forward to a great Thanksgiving with family an wish everyone a wonderful holiday.
Of course it's been months since I last posted and I am again terribly sorry!! Since the last time that I posted, we've had a birthday, a little weight gain, and some updates.
The week before Kylie's birthday was very scary. Her breathing took a turn for the worst and we were afraid we were going to lose her. Kylie made it to her big day and we celebrated with tons of friends and family.
Kylie has also gained some weight. Our little fatty is now 7 pounds 13 ounces. She has also received her first round of RSV shots and we are praying that the cold and flu stays away this year.
We had a great Halloween and Kylie was our little mermaid. We had fun trick-or-treating with the neighborhood kids and walked a few streets with Kylie while she looked at the lights and listened to the different sounds.
Lastly, we two new additions to our family. We adopted chickens from my friend from work and they are making themselves at home in our backyard.
I have this new app on my phone and hope to be a little more consistent with my posts.
Here are are again and sorry again for taking so long to post!!! Life has been hectic around here, but it should be no excuse for our absense here on the blog.
Kylie is now a whopping 7.2 pounds. We are slow going, but the doctor figures that Kylie's heart will dictate her growth and will only allow her to get as big as her heart will allow. It is always hard to hear this, but I guess it's a reality that I have to recognize at times. It is easy to get lulled into thinking that Kylie is normal, when clearly she isn't, but we are able to do this nonetheless. Kylie has also been dealing with breathing issues. Her breathing is very shallow when she sleeps and almost nonexistent if she is very relaxed. I really do not get any sleep at all because I am monitoring her breathing constantly and the other times, she is not sleeping at all. We are using oxygen on Kylie more often, but it seems to help her when she is working too hard breathing. For the past 2 weeks, she has been wanting to party all night long. John and I tend to play tag team on those nights and let's just say that the nights become a blur.
On a positive note, we are planning Kylie's 1-year birthday party. It took us a little while to be okay with planning such a task, but we are full force!! It is so much fun to plan a big day to celebrate with friends and family the life of our little one. She is so strong and such an inspiration to me and others, just writing it right now brings tears to my eyes. She makes us so happy and is such a blessing; no matter how hard our lives are, she is worth every moment.
We still do not have any teeth, but are expecting some soon. Kylie loves to suck on her mittens (which we still keep on her because of her feeding tube) and is drooling a little more. Kylie is smiling a lot more and giggling and babbling a little (yes sometimes at midnight--she is truly a girl).
Thanks for all your prayers!! They give us much comfort and they do help tons!!!
After another loss of weight (getting down to 6 pounds 6 ounces), Kylie finally jumped to 6 pounds12 ounces. We are so happy!!! She still loves eating her veges (especially carrots, green beans, and peas). We are feeding Kylie an increased concentration of Similac Alimentum coupled with breast milk. Every other feeding we give her only formula and she seems to be doing very well with it.
We love to see her growing stronger every single day. The added benefit of Kylie gaining weight is her being able to sleep a little better through the night, phew!! We still wake up every three hours to feed her (as she still needs her calories), but she does not wake up hungry or fussy any more. Our little girl is waking up happy and ready to face the word.
I also noticed when she was losing weight, she was not wanting to (or could not) lift her head as much. Now she is back to playing with possibly lifting her head. We would love to see her a little more independent and I tell Kylie all the time that lifting her head will open a whole new world for her.
For being 9 months old, she is still so very small and as we are out in the world and people ewww and ahhh over her, it is a reminder of not only how strong she is and a fighter, but how much more we are going to have to face in the future. Looking at these little pink toes make the worry melt away.
Kylie had a great doctor's visit yesterday. She gained another 2 ounces and is now 6 pounds 8 ounces. I really hope that we are on the way to some healthy weight gain. We are so pleased.
Kylie also gave us a scare yesterday. While practicing some bottle feeding, Kylie asphyxiated on some milk. She had a really bad time of it, having a difficult time breathing, her coloring being very pale, and just giving us a very bad scare. Hospice, as usual, was right on it. They guided the grandparents (as John and I were at work) in what to do and our hospice nurse was hot on the way over to our house. John and I have never had a longer drive home from work.
After a very dicey afternoon, Kylie recovered (she is so strong) and is now back to herself. We were scared for a while of her having fluid in her lungs, but after a day, she did not have any fluid left over.
Kylie did a great job last week. After a lot of hard work, Kylie has gained 4 ounces. The doctor asked me when we showed up what I was shooting for, and I told him I wasn't going to be greedy and just wanted her to maintain. What a sweet surprise when the doctor told us she was 6 pounds 6 ounces. Everyone, including the doctor, were all smiles.
Thank you all for the prayers and well wishes, we so appreciate them. I am praying that Kylie's gain continues. She is such a bright and sweet girl. Kylie loves to smile and is quite the drama queen (she loves to sleep with her arm draped over her forehead). We are still working on getting her to lift her head on her own. She can do this a little bit, but still has a ways to go. I keep telling her that she will have a new kind of independence if she learns this new trick.
Kyle needs your prayer. We had our weigh-in last week and had the bad news of Kylie losing weight again. Kylie is now 6 lbs 2 oz, which is down from 6 lbs 7 oz. This of course has us concerned because she is already a very little girl and does not have a lot to lose as it is.
We have started feeding Kylie formula (which we started a few weeks ago) and have increased the amount of formula we are giving her. We still feed Kylie breast milk, which she is doing very well with. Kylie also loves her veges (especially her green beans and carrots). Kylie has also progressively gotten better at sucking on the bottle. Kylie still cannot drink enough to sustain her, but this improvement is encouraging.
We are hoping that increasing Kylie's food intake is what she needs. We hope that Kylie is just a little girl who is growing and we have been too conservative in the amounts we have been feeding her. The scary possibility is that her body is shutting down and her body is not taking in nutrients from the food that we are feeding her.
We are so proud of our little girl!! She is so strong and is a true
So sorry it has been so long since my last post. We have been having fun with Kylie and she keeps us on our toes (albiet very tired, sleep deprived toes). Kylie has a doctor's appointment for a weight check and we pray that she is maintaining if not gaining. Kylie continues to eat minimal baby food (she really likes her veges and barely tolerates her fruits). She eats about a teaspoon of baby food per feeding (still about every 3 hours). Kylie is up to 36 ccs of breast milk per feeding (yes, I am still getting a very little bit of breast milk still, talk about getting blood from a turnip). Some feedings she is in to eating solid food, but other feedings, she is not too into it. She sees the spoon coming and then proceeds a scream fest.
Kylie continues to be our little miracle and we just love on her each and every day. She is smiling more and is still working on lifting her head on her own. She is a very hardworking little girl. We are still having "poop issues" and Kylie gets very uncomfortable when she goes 4 to 6 days without pooping, but so would I.
Thanks for your continued prayers and I promise I will post after our appointment this Friday, keep your fingers crossed and prayers a coming.
Easter was fabulous. Kylie got to put on her Easter dress and her ballet shoes and celebrate the resurrection of our Lord. It was a nice quiet day with family and just relishing in the goodness that is our daughter.
We also have celebrated, since the last blog, Kylie's 6-month birthday. It is hard to believe that 6 months ago, John and I were on our way to the hospital and a whole lot of unknown. We did not know if Kylie would be born alive or dead, we did not know if we would be able to take her home with us, and we did not know how much time we would have. A lot has changed since then.
We have a beautful little girl who continues to surprise us every day. Kylie continues to thrive and makes due on her own time. Kylie has not grown much in the last few months, but we take solace in that she is healthy and alert. Kylie is still 6 pounds 4 ounces and 20 3/4 inches. We will take her for weigh-ins every 2 weeks to monitor her progress. She has started eating carrots, along with her pears and rice cereal. We hope to increase her breast milk feedings to 35 ccs this week too. I am trying to not be too disappointed in her lack of growth, but am just focusing on her thriving and doing so well.
The picture to the right is Kylie enjoying a little bit of frosting from her 6-month cupcake. She really seemed to enjoy it. Drool and frosting equals much fun.
This week, we also had the great joy of having Kylie's great Nana Kay down from Fortuna to visit as well as her great Aunt Net and her Cousins Anthony, Steven, and Jonathan. Everyone took great joy in taking turns holding Kylie and Kylie loved all the attention. Hearts were heavy when all left because Lanette and her family live in Pleasanton and Kay lives in Fortuna, which makes it very difficult for frequent visits.
Until next time, Kylie says, Thanks for the prayers.
So sorry it has been so long since our last post. Life has been crazy and John was sick with a cold last week and we were in lock down trying to keep Kylie healthy, which seemed to work.
She is such a strong girl and has been doing great (no blue episodes for about a month now). Kylie did lose a little weight last month, but we seem to think that it is from missing a feeding at night. We have Kylie's 6 month doctor's appointment this week and hope that she will be back to 6 pounds 8 ounces or better.
Kylie does a great job in sleeping through most of the night, most nights. Some nights, Kylie just does not want to go down, but who can blame her. Sometimes it is due to not pooping for a while or just her party lifestyle. Even though those nights keep us fairly frazzled, it is so darn cute to watch. It usually starts with her sucking on her lower lip (imagine Maggie Simpson from the Simpsons), graduates to fidgeting with her hands (imagine Mr. Burns from the Simpsons), and then goes to turning her head from side-to-side trying to check out what is going on. Sometimes she will go back to sleep, but if she gears up, watch out. I think she just misses her late night TV (her favorites being Chelsey Lately and Jimmy Kimmel Live).
Kylie is turning 6 months this week and I just cannot believe it!!! We are so proud of her and she is working so hard. Like I said before, she is sleeping through the night most nights. Her new big girl feat is eating rice cereal mixed with pears (for their magical pooping properties). She usually likes the taste, but there are those times when she is not too into it. I think her new trick is pretending to sleep when it is time for her rice and pears so she doesn't have to eat them. I think she is just wanting something new. Kylie is still working on trying to support her head on her own. She does a little tummy time and can lift her head quite a bit, but still struggles. Kylie is also enjoying the warmer weather so she can go barefoot and wiggle her toes.
What a whirlwind the last few weeks have been!!! A couple weeks ago, Kylie had an issue with pooping; mainly not doing it. After five days of being really cranky, our girl finally surprised us with some really full pants. We figure it was due to starting Kylie on rice cereal and just starting her out too fast. We have learned our lesson and Kylie gets one meal of rice cereal and breast milk right before bed and all is well through the night.
Last weekend, we celebrated Kylie's baptism. It was a GREAT day of friends and family.
Kylie's godparents came all the down from Santa Maria and so did her cousins Cody and Dana. Kylie had a fabulous christening gown from my boss Denise and a blanket from her great Nana Kay.
Lastly, we enjoyed a beautiful day at the beach. Kylie didn't seem to mind the sunshine.
Tuesday was Kylie's appointment with the cardiologist for an echocardiogram. Let's just say Kylie was super patient for the 45 minutes that it took for them to look at her heart. Kylie got a little restless, but I think I would too.
Needless to say, Kylie has some pretty serious cardiac problems, usually a side effect of her Trisomy 18. She has a VSD and PDA (Ventricular Septal Defect and Patent Ductus Arteriosus). The cardiologist also told us that it would be near impossible to find someone to operate on her (we haven't decided if that is something that we wanted to do any way). He was amazed by Kylie though. He indicated that if he would have seen her at birth, he would have only given her 1-month to live. Here she is at 4 months and a miracle to everyone. John and I were wondering about comfort measures for Kylie. The cardiologist indicated that there are cardiac drugs that could do that for her, but would only prolong the end. I of course do not understand that!! Maybe it is just the heart of a mother screaming out what is wrong with my child being comfortable and living a little longer. What is so wrong with extra time as long as she is happy and comfortable??? John and I have not made the decision on giving her cardiac drugs. We will weigh options with her pediatrician and hospice. Side effects from these drugs may also outweigh their benefit too. The cardiologist will like to hear from us in a month and to let him know how Kylie is doing (I think he was captivated by her too).
The other funny part of this whole story is dealing with insurance. Insurance approved us seeing the specialist as long as we left hospice. Without hospice, we would be lost!!! They are a constant source of comfort and information. They are here for us 24/7. After grieving their denial of Kylie seeing the specialist on hospice, they of course said no again. Out of this battle though, we did get a benefit. Kylie was finally approved for her RSV shots (which are $1,000 a pop, but will help keep her safe from further sickness that is out there). Insurance denied her $1,000 echo, but okayed her $1,000 RSV shots, go figure.
Kylie has had one blue episode since then. We thought we would make it a week without one, but we were only one day shy. We just pray that each day will be a good one and Kylie will continue to amaze us.
We went all day yesterday without a blue spell until after Kylie's 5:00 o'clock feeding. John had gone to Target and Kylie and I were enjoying some time together and it happened so fast. She arched her back, let out a cry, and turned purple. It passed relatively fast, but then happened again about 45 minutes later when John got home. We were hoping for one day without this happening and thought we had made it through, but I guess we were not so lucky. Typically, these episodes happen earlier in the day, some times between 10:00 and noon.
As of this writing, Kylie is doing well. No episodes yet on this beautiful Sunday and hope it continues.
Kylie is now 16 weeks old, about 5 pounds 10 ounces and getting to be a cute/big girl. She continues to amaze us everyday, but prayer is needed.
Over the last 48 hours, Kylie has had 4 apnea/turning blue episodes. We think it is possibly due to her heart and have an appointment with a cardiologist this Tuesday for an echocardiogram. We pray that it is nothing too big or damaging to her heart because we do not know how or what they will be able to do to help her. We also ask for prayer for Kylie because we do not even know if she will make it to her appointment.
She is so precious to us and know that her time here with us is limited, but we just want to give her all that we can to thrive for as long as we can. She has constantly surprised us and we pray that she will continue to do so. She is the strongest person that I know.