Back to the Cardiologist

Juliet had her 30 month appointment and Bayley evaluation the beginning of May. She goes to see her high risk pediatrician twice a year to check up on her developments and growth and eating.
Overall, she is doing great. She is on track or ahead for everything except "self care". (Basically, she's not potty trained yet so that knocks her down a bit.) She is a problem solver, talker and stubborn! (I know, shocker, right?!)
Her growth is perfect! She is no longer "adjusted" so even though she should only be just two, she is in the average range for weight and height for a 2.5 year old.

Unfortunately, we did not get only good news while there. Juliet was born with a large PDA, which is hole in her heart. While she was in the NICU, she was given medicine in hopes of closing that completely. Well, it didn't close it the whole way but it got it small enough that it was not causing any issues for Juliet, so we left it alone.
She had seen the cardiologist after being released and it seemed the PDA had finally gone away. We had not heard it for over a year. But, it was heard again at her 30 month appointment. So we headed back to her cardiologist to check it out.
Turns out, it is still there, and since she is over 2 years old, there is little to no chance that it will close on its own. So after discussing all the pros and cons, we have decided to go in and close it via surgery. Because of her being premature and having CLD (chronic lung disease) her doctor wants to wait until she is at least 3 to give her body a better chance at a quick recovery. And thankfully, the hole is not causing any other damage to her heart in the mean time. This means we will watch her a little closer for the next year and this time next year we will be taking her in for surgery.
It is a very basic and common procedure. However, that does not take way the fear of my little girl go in for surgery. It's always scary to see your kids needing surgery, (which I know because our oldest required surgery at 11 months old), but this is a different fear. She has fought so hard to survive, and any little thing is harder to bare because I have almost lost her before. It's not a totally irrational fear because I have had to make the decision to pull my son off life support. I have seen Juliet weak and motionless as a machine breathed for her. I know I could worry myself into a hole of depression so deep there would be getting out. But, Juliet is resilient. She survived in odds that were so stacked against her she shouldn't have survived at all, let alone being left healthy!

So I ask for prayers. For Juliet, for my family and for me. For us to have the strength to keep going, even though this surgery is coming up. For peace about it all and help us to not worry about the future.

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your request to God. And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus." ~Philippians 4:6-7

2015

Wow, it has been a while. This year started off crazy. We had 25 dogs in our house, yes that's correct 25. We breed German Shepherds and we had two litters the week of Christmas. They are finally all to their new homes and my life has slowed down a lot. I am finally get back into my blogs and writing again. I always miss when I cannot write.

Juliet is doing awesome. She had a great Christmas, New Year, and start to 2015. Juliet is continuing to grow and she loves to try out new things.

Her favorite foods are yogert, berries, carrots, rasins and anything with peanut butter on it! She is a great eater and is become very independent when it comes to feeding herself.

Juliet LOVES her baby brother. Every morning she asked where "baby" is and want to go give him lots of kisses. I love watching her interact with him. They have had a special bond from the beginning and it amazes me to see it grow every day. She enjoys anything that means spending time with Bradley.

She also loves being outside. Her favorite is the sand box. She will spend hours in the sand it I were to let her. I know as summer gets here, she will be begging to swim every day as well. Anything with sand and water is her perfect play place. (Too bad we are not close enough to the beach for daily trips!) Juliet likes to swing and "climb" trees too. (She doesnt get off the ground, but she loves to climb them anyway).

Juliet has also taken after her mommy and has an amazing gift and love for animals. Our dogs are so gentle around her and love to stick close. Its almost as if they realize she is special and needs to be watched over. She is by far my animal lover, and I dont see that changing anytime soon.

Juliet is developing right on track and she loves to learn. Her favorite songs are Twinkle Twinkle Little Star, and Jesus Loves Me. She cannot go to sleep without both of those songs!

She has come a long way from that frail baby she used to be 2.5 years ago. We are all doing well, but the pain of missing Jacob is still so raw. Juliet is missing him too. She says she "sees" brother outside sometimes, and I hear her talking to him at night in her crib. I believe children have a sense that adults don't have anymore. I don't know if she really sees him, or if he is just her "imaginary friend", but I love to hear her talk to him. It's almost as if he is still here with us. One day we will see him again, and it will be a joyous reunion when we do.

Overall, Juliet is doing amazing and blowing doctors away every time they see her. We don't know what her future holds, but I know it will be great. And we will take it one day at a time.

November and December Review

Things are always crazy this time of year. Between holidays, family, end of year parties, illnesses, and shopping, it's easy to forget to take time and write updates. I apologize for not many updates lately. 

Juliet is doing great! We celebrated Jacob and Juliet's 2nd birthday as a family this year. She is getting the hang of opening presents and I know Christmas will be a blast! She had a fun time and loved her cake! 

We spend the 8th together as a family, and sent up 24 balloons for Jacob. (One for every month he has been gone). We also started a new tradition and planted a tree for Jacob. We will plant one every year on his angelverary now. As the balloons disappeared, my husband said, "well they are gone now". My oldest said, I think more to himself then to us, "Well, they are at least gone from us". I don't know why, but it was the perfect way to describe Jacob. He is not gone, just gone from us. It's always an emotional day as I play this day over and over again in my head. The pain, the tears, the feeling of holding him as he turned cold in my arms. November 8th is a hard day. 

We hosted Thanksgiving this year, which kept me busy, and my mind preoccupied. I know everyone is excited about the holidays, but these days are some of the hardest for me. It's hard to be thankful when a piece of your heart is missing. Plus, going out and shopping for my children always reminds me that I should be shopping for one more. 

We put a tree and decorate our house though. If not for us, at least for our other children. We also took family pictures for the first time since Jacob died. We got some great ones and a perfect picture of Juliet with the Jake elephant. I know Jacob was there with us. 

We have had a few illnesses run through our house as well. As much as I wish I could protect Juliet from ever little germ and bug, we know she has to start slowly building her immune system. So far, we have had 2 ear infections, an upper respiratory infection, and a few colds. Nothing has led to a hospital stay yet, but seeing her ill just brings up too many old memories. We just keep chugging and moving through this season praying for only small bugs, and NO hospital stay!

Christmas is almost here, and I am excited and scared and heartbroken. Another year without Jacob. I know Juliet will have a wonderful time this year. She is really enjoying the "opening" part of presents, even if she doesn't realize the toys is what she is suppose to play with! 

I pray peace for you all, and a wonderful Christmas. May God Bless you many times over this coming year! 

Autism Free

Juliet went in for her 18 month corrected evaluation and autism screen. I am proud to say she passed with flying colors and once again God is proving himself to be faithful in his promises. He has kept her mind safe, and allowed her to have full function of her brain and body. Today, one in two micro-preemies are diagnosed with autism. It really is amazing to me that with numbers that high, Juliet is perfect. All the things that could have affected her have yet to touch her. God has been amazing to our little girl. She is developing slightly above her adjusted age. Her high level thinking is great and everyone keeps telling me she will be my straight A student! I look forward to seeing her continue to learn and succeed!
Juliet's baby brother has been home a few weeks now and Juliet is in love with him. She loves to sit and just watch him. One day, these two will make wonderful playmates. He will be the playmate she has been missing since Jacob died. I look forward to watching these two grow up and enjoy a life together (and probably picking on each other a lot, as any good brother and sister relationship should do).
Juliet goes back for one more evaluation in November, then we should be done with all of them! Slowly we are crossing off her long list of appointments! Only a few more and our baby girl will be free of all the extra evaluations! Thanks for all the continued prayers! Please keep them coming for our miracle girl!

Welcome Baby Bradley

We are so excited to announce the arrival of our Rainbow baby, Bradley James Phillips on August 1st, 2014. Bradley and mommy spent a week in the NICU due to weak lungs, but he is now home and doing well. Juliet loves her baby brother and is doing an awesome job as big sister. I love to watch her interact with him and I look forward to watching their relationship grow.

Saying GOODBYE to PT!!

Our therapist of over a year came out this past week and officially discharged Juliet from all Physical Therapy! We are beyond thrilled to see this season in her life come to an end. It is never easy to be told your child is not perfect. Especially when no one can give you answers. We had no idea how long Juliet would need therapy. We were prepared for her to need it at least until 3 or 4 years old, and this week, at 20 months, she is officially done. God continues to show HIS faithfulness in her life. She will always be our miracle.
We cannot thank Kelli enough for everything she has done for Juliet. From seeing her 2 times a week at the beginning and helping her learn to hold her head up, to now not "needing" to see her, but playing with her, helping her jump and run and play. Kelli has been a huge part of our life and a major part of Juliet's development. We will miss seeing her greatly, but I know we will always have a special bond with her. She helped our baby girl do so many things, and so many days were spent trying to figure out the best path for Juliet, no matter what that meant for Brett or I, or Kelli.
Now on to the next chapter of her story...

First Trip to the Beach

We made a last minute trip to Port Aransas, TX yesterday for some fun in the sun. We went to Port A in May 2012 for our wedding anniversary. We  came home from that trip with two precious blessings. (Yes, Juliet and Jacob were conceived there)
After we lost Jacob, I told Brett I never wanted to go back. I was afraid the memories would be too much for me. But for some reason, on Friday I felt called to the beach. So we packed up our crew and heading out early Saturday morning for a day trip at the beach. The kids had a blast and Juliet loved the water. It was her first trip to any beach and she really enjoyed it. It was a great way to start off the summer, and we will defiantly be doing it more often this summer!

I know Jacob was smiling down on us yesterday. It just felt right. I look forward to going back, and the kids are already begging for another trip! (Although next time, I think we will bring more sunscreen, haha)

"Jake" the Elephant

Jake and Juliet

She loved covering Mommy in sand

Daddy holding Juliet and Jake

Kisses from Daddy

Jake at the beach

Juliet is... GOING TO BE A BIG SISTER

Yes, you read that correctly, Juliet and Jacob will officially be big brother and sister to their new baby brother due mid August. We have been keeping it quiet this time around for many reasons.

For those of you who don't know, Brett and I have suffered 6 miscarriages early in pregnancies. For this reason we don't ever say anything until we are out of the 12 week mark. Then add on top of it the stress from the twin's pregnancy and all the possibilities of my water going again. So we wanted to wait until we hit viability (the time when the doctors would at least try and save our baby's life if he were to come early, which is 24 weeks).
Now that we have passed that, I can finally breath a little easier and begin to be excited about bringing home another baby. So here are some of the details for those who are interested.

We learned in January when I went in for my yearly exam that my birth control failed in November. I was roughly 8 weeks pregnant. And to be exact, it looks like I conceived on November 8th, 2013: Jacob's one year Angelversary. We were shocked and scared and worried, but also slightly relieved. Brett and I both wanted another child, but we could not see going down that path again by our own decision. We have been praying that if our family was to grow again, that God would just do it. And that he did! We knew this pregnancy was going to be hard, both emotionally and physically, but thankfully God has kept this pregnancy "easy" and healthy. Yes I was sick and exhausted until 12 weeks, and I have been on pins and needles about my water breaking again, but I had no major issues. My doctor has been wonderful and we are keeping a close eye on my fluid levels as well as making sure I am not going into labor. I get ultrasounds every 3-4 weeks as well as P17 shots to help keep preterm labor away. Due to my history, we do not expect for me to go full term, but we are hoping that will be the case. As it stands right now, we are shooting for August 1st. (Which just happens to be the day my water broke with Jacob two years ago).

We have also had some very God-like things happen throughout this pregnancy that just confirm to me that God is at work and he will deliver a healthy beautiful baby boy into our family when the time is right. (For instance, at just 13 weeks we found out this little one is a boy! We never have found out that early, but God knew I needed to know, so he made it possible!)

With all this being said, I ask for continued prayers for our family as we get ready to welcome another little boy into our home. I will be honest, I have not held a baby boy since Jacob died in my arms.

 I know it will be very emotional for all involved, so prayers for peace would be greatly appreciated. As well as prayers for a continued healthy pregnancy. Oh and prayers for Juliet. It will be a big transition for her from being the baby and getting all the "mommy time" she could want to having to share me.

Juliet and Griffin

For each of our children's first birthday, they get their "own" german shepherd puppy. We raise and train shepherds, so we have a house full of them. Juliet's pup just got here a few weeks ago and he is a sweetie pie. His name is Griffin. Griffin was born on February 14th, 2014. (Juliet's "supposed to be" first birthday.) He was also a preemie and needed extra care in order to survive. They are bonding great and Juliet loves to "tickle" him. I know they will be great friends as they grow up together and Griffin will be just the protector she needs.

17 Months and Going Strong

I realized I have not given any detailed updates on Juliet lately. So get ready...

Juliet will be 18 months on May 6th. She is making wonderful progress in all aspects and truly is a joy to be around. Juliet has been spending her time playing outdoors at our new property. (We are in the process of building a new house on 7 acres.) She is now able to hold onto and swing on a tire swing, go down the "roller coaster", and play catch with her big brother. She loves to be a part of the "big kids" and tries hard to keep up. She has recently figured out to rock on her rocking horse, and will spend hours a day rocking away.

Juliet has also started talking more. Her favorite words are "whoa", "wow", "boom" and "yeah"(especially when our pastor pauses during his sermon). She is slowly learning "all done" when she is done eating. She will say "dada" when she wants him, but its like pulling teeth to get her to say "mama". When you are the 5th child in the family, you learn to be heard, and Juliet is no exception. If she is getting "ignored" or talked over, she will squeal like a little piggy until everyone stops and looks at her. She usually just smiles and is happy to once again be the center of everyone's world. (She is not spoiled at all, haha)

Juliet is now 22 pounds and is starting to try and "run". It looks more like a waddle, but I'll take it! She will finish up with PT this month, and only receive evaluations every 6 weeks to make sure she is staying on track. She goes back to get another evaluation in August for a "corrected age" 18 months evaluation.

Juliet has been given the OK to start going out in public again. YAY for NO MORE RSV!! She will not be allowed in any form of child care until June, and we are advised to stay away from extremely crowded areas. So far we have been back to church for 3 weeks and she has done very well. She still gets over stimulated very easy, so we will be taking things slow when it comes to introducing her to public places.

Easter was a blast. We were all back at church as a family, which was wonderful. Juliet was big enough to go "egg hunting" with her big brothers and sister. She loves to open and close the eggs over and over.

Overall, Juliet is doing wonderful and keeping me busy. Every day we blessed to have her in our life, and the joy she brings in irreplaceable. Jacob will always be missed, but Juliet is our link to him and I see him in her every day.

Sick Baby

This past week we took Juliet in to get her second to last synagist shot. I am so looking forward to being done with this chapter of her story. Unfortunately, the next day she started feeling very sick. She was lethargic, had a slight fever, and she was breathing faster than normal. My first instinct is to always check her O2s. She was still stating around 97, but she just looked off. My mommy instincts told me something was not right. I took her to see her doctor on Wednesday. She had a horrible ear infection, her fever had jumped up to 103, and her breathing was still faster than normal. Her doctor was concerned with the sound of her breathing, so we headed over to get an x-ray of her lungs.

We got both good and bad news. Juliet did NOT have RSV, which is always the biggest fear with premature babies with weak lungs. However, she did have pneumonia in her right lung. Her right lung is the stronger of the two. Due to being born early, her left lung was damaged more than her right. This means that her right lung was not working as well now, which was putting more stress on her left, weak lung. We started her on a steroid antibiotic and watched her like a hawk. We agreed that if possible, it was best to keep her home instead of taking her to the hospital and risk exposing her to other illnesses. Brett and I took turns staying up with her at night and keeping an eye on her breathing. By the end of those first 24 hours she was feeling better and her breathing had slowed. The doctor said it would probably take 2-3 weeks for her to fully overcome the pneumonia.

Even with doing everything we can, we cannot always keep her from getting sick. I am so thankful God has given me my mommy instincts and allowed me to know my children well enough to know when they are not themselves. Our doctor had mentioned if we had waited even another 24 hours, it probably would have ended up with her needed oxygen at the hospital. We are just so glad we caught it fast and she is on the upswing now!

Valentine's Day 2014

Juliet with Jacob's urn

Today marks the day Juliet and Jacob "should" be celebrating their first birthday. Oh the what if...

Instead, Juliet is 15 months old now and progressing great. She went in for her 15 month check up and here are her stats (all of these are based on full term babies)

Head circumference: 17.91 inches (45 percentile)
Weight: 20lbs 8oz (39 percentile)
Height: 29.5 inches (15th percentile)

Over all, her development has been great and she is growing at a constant rate. She is healthy, which is wonderful as we begin to come to the end of RSV season. We will be continue to be on lock down until the middle of April.

Juliet is consistently taking 3-7 steps at a time, and she is really enjoying being able to be up. She loves to walk with help all over our house! I cannot believe she will be a toddler before too long! We will go into First Steps for a full evaluation in March. That should be our last appointment with them as long as everything goes well.
All in all, she is doing wonderful and we are excited that she is improving so well. Thank you for all the continue prayers for her and our family!

Juliet and "Jacob Bear"