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We are planning to have two to three new blog entries per week. If you would like to contact us, please send an email to GraciStory @ gmail com.

Thank you for the continued love and support!

Signing Leads to Potty Training

One day, when she was about 18 months old, we noticed Graci signing 'diaper'. We reinforced signing back and saying "yes, that's your diaper." "That's a clean diaper." or "Dirty diaper." We did this for a few days until we finally realized... she's giving that sign only when her diaper is ready for a change and sometimes while she's going! We started paying close attention and taught her the 'potty' sign. We would sign 'potty' and say "Graci goes potty!"

After a week or so, we introduced the potty chair. Since she could communicate through signing we could ask her, "Do you have to go potty?" and she would say "ya" or shake her head "no". Sure enough, when she said she had to go and we put her on the potty... SHE WOULD GO! Unbelievable! At 18 months!!!

Typically, potty training begins at about 2 years of age. We only started early because Graci "told" us she was ready. Graci now says "potty" and "poo" while giving the 'potty' sign when she has to go. She doesn't tell us every time, or we don't catch it every time, but at least she understands the concept and goes on the potty when we put her there.

Just another example of why you might want to use Baby Sign in your communication development with your child. Keep it simple... being consistent with 5 - 10 signs can really make a difference!

Contact Us
We are getting several comments and inquiries through the Graci's Story app on Android. If you would like to contact us directly we would love to hear from you. Send an email to GraciStory @ gmail com. We are open to suggestions on topics. If you have one and we have experience with it, we will include it in our Graci's Story blog.

Thank you all for your love and support.

Communication Through Signing

We've been signing with Graci since she was about four months old. Of course, in the beginning, we would simply watch Graci's in-home teacher sign as she spoke and played with Graci. We watched her intently and tried to pick up as many signs as we could, since she only came to the house once every two weeks. Between visits, we would use the signs we could remember and wondered if Graci was catching any of it.

Why Sign?
There are several reasons for learning to sign with your baby. The most obvious is that infants develop the fine muscles in their hands way before they develop those fine muscles required for speech. So, they are much better equipped to give you a quick sign than to use words to tell you what they want. For us, the thought that Graci might possibly be delayed in her speech was enough to turn us on to the idea. The frustration that comes along with not being able to communicate was something that we hoped to avoid with Graci.

If you think about it, baby signs are just another form of gesturing and they learn to do those anyway. How many times have you seen someone play "So Big" with their baby? Mom says "SO BIG" and baby throws his hands into the air to gesture how big he is. Babies also point to things and use their hands to try to give clues about what they want. When they can't get their point across, it can be very frustrating and that's when you might see a tantrum or two.

If Babies Sign, They Won't learn to Speak
This is a common misconception dealing with baby signing. In fact, we've heard that babies who learn to sign actually use their words sooner and have a bigger vocabulary than those who don't. Again, this is hearsay on our part since we haven't done the research to verify that statement. We are strong believers though that what you expect is what you get, so set your expectations HIGH and watch your baby thrive!

In Graci's case, she's always been such a little imitator, that she really picked up the signs quickly. She was able to tell us she wanted 'more'... more peek-a-boo; more row, row, row your boat; more piano... more of whatever we were doing. In the same way, she was able to tell us when she was 'all done'. When we started her on baby foods, she was able to use more and all done right away. By then, she was also able to ask for 'milk', 'juice' and 'drink'. The praise she received each time encouraged her to sign more and more.


Back to the speech issue... Graci now has about 30 signs that she consistently uses. She would use more if we would just learn more to teach her. Two weeks ago, her teacher was pointing at stickers and asked if she wanted the 'bird' sticker. When she said it she also signed it. Graci said 'bird' and signed it at the same time right back at her. She asked if we had taught her that one yet and since we didn't know the sign, the answer was no. In writing this blog, we just asked Graci "Can you say bird?" She looked at us and said 'bird' at the same time she showed us the sign. What a great memory she has! The point is, she is working on her speech even while continuing to sign. If she knows the sign, she does both. If she doesn't, she just says the word. If she knows the word, but doesn't say it, we encourage her to do so by saying "Use your words."

Graci's Words
Last night, we got a bit distracted getting ready for bedtime. Wheel of Fortune, Graci's favorite nightly show, was over and we were starting to clean up. Graci looked over and rested her tilted head onto her 'prayer' hands and said "night-night." When asked if she was tired she said "ya" and said "bye-bye" along with a wave to her little brother. She's been signing 'night-night' and lots of other words for a very long time. She's only just started attempting to say most words in the last four or five months. Speech is directly tied to feeding and we had big feeding issues with Graci. Within weeks of her grasping several different textures, food shapes and tastes in her mouth, her speech really started to take off.


Our absolute favorite signs now are 'please' and 'thank you'. She says "peas", but hasn't attempted the words "thank you" yet. She recently learned to sign 'sorry' to her little five-month-old brother. Remote controls to the head and finger pokes to the eye prompted our teaching her that sign. All typical behaviors, we are happy to report. The best is, she uses her thank you sign without being prompted. If she is handed something, she generally signs 'thank you'.

Baby Signing Resources
There are books and DVD's available at baby stores, book stores and libraries. We used "My Baby Signs Book" by Discovery Toys. One for Bedtime and one for Mealtime. We also used "Baby Sign Language Basics" by Monta Z. Briant. But mostly, we watched Graci's in-home teacher and started consistantly using the signs we could remember.



We also took a "Hanen Communication - It Takes Two To Talk" eight week course. This one class per week program helped us learn practical strategies to help Graci learn language naturally throughout her day. The It Takes Two to Talk Program teaches, step-by-step, how to become your child’s most important language teacher. Learning how to "OWL - Observe, Wait and Listen" to help us learn to follow Graci's lead in communication through play. Signing is simply a tool used to help reinforce this communication. We plan to add a blog specifically on the Hanen class, so watch for that soon.

Upcoming Blogs
Keep an eye on Graci's Story for information on the following subjects:
* Feeding Issues
* Hanen Communication
* Resources for a Down Syndrome child
* Resources for Families
* Will She Ever Walk
* Etc.

Therapeutic Horse Riding

Our two-year-old Graci started taking Horse Therapy riding lessons in January 2011. It was recommended by her early intervention teacher, so we put her on the waiting list right away. She had a spot reserved within just a few weeks and we were so excited!

Below you will see some information on the benefits of Horse Therapy. We would recommend it to anyone! Besides the benefits listed below, Graci's confidence around animals has increased ten fold since she began.

Benefits
Therapeutic horseback riding benefits almost any disabling condition including: cerebral palsy, autism, down syndrome, head injuries, hearing impaired, visually impaired, multiple sclerosis, seizure disorders, speech & learning disabilities, and sensory integration dysfunction. The physical, mental, and emotional benefits of therapeutic horsemanship are many. The rhythmic motion and warmth of the horse stimulates and exercises the rider's muscles increasing mobility the pelvis, hip, and spine. The rider experiences weight shift and trunk mobility as if he were walking on his own.

As the horse and rider progresses through their different gaits, the rider experiences a wide range of sensory input. At a walk, the rider benefits from the calming effort of the rhythmic, three-dimensional movement. As the horse moves to a trot, the rider's alertness is increased, his posture aligned, and he becomes more aware of his own body. Riders respond to this movement. During the lesson, activities and exercises take place to encourage speech, identify objects, and sequence multiple tasks. Students also participate in games and socialize with other students.


Since this is a horsemanship lesson as well as a riding lesson, Graci is learning how to care for her horse, Poncho. At the end of each lesson, Graci is responsible for putting away her reins, counting carrots and placing them into a bucket, carrying the bucket to Poncho, feeding and petting Poncho and finally putting away the bucket.

In her first lessons, her instructor would carry Graci while performing all of these tasks. Now, Graci walks with her instructor while holding the reins and then the bucket in the other hand. She loves her lessons and practices saying and pointing "Go Poncho Go!"

Look for Therapeutic Horse Riding lessons in your area! We highly recommend this type of therapy.

Open Heart Surgery

In July 2011, it will be two years since our gorgeous little girl had open heart surgery to repair a VSD (Ventricular Septal Defect). This type of defect is a hole between the right and left vertical causing oxygen-poor blood to be pumped into the lungs. When the hole is large, as Graci's was, the heart tries to make up for the low oxygen levels and begins to pump too much blood into the lungs. Graci's was large enough at birth that doctors were confident it would require surgery to repair.

Interestingly enough, when typical babies are born with this defect, the surgery is usually performed within the first few days of life. When the baby has Down Syndrome, surgery can wait sometimes up to two years... giving the baby and his heart time to grow. The reason for the wait is because DS babies keep the pressure in their lungs (necessary for life in the womb) longer than typical babies. Why? We haven't found anyone that has answered that question. We like to believe that because 50% of all DS babies are born with a heart defect, it is a God given safeguard in order to give them a better chance at survival.

Cardiologist visits begin
Graci started seeing a Cardiologist within weeks of her birth. At each visit, she had chest x-rays and an EKG (or ECG for Electrocardiogram - the K is from the German word Elektrokardiogramm) both reviewed by her doctor. She had appointments every three to four weeks to monitor her progress.

Between the visits, we were to watch for shortness of breath, fast breathing, paleness, hard breathing, fast heart rate and sweating while eating. It was so frightening because we couldn't help but think, "What if we miss it? What if we're not paying close enough attention?" We were filled with fears and doubts, but with every visit to the cardiologist, we were a bit more at ease.

Incident
We did have a scare when Graci was six weeks old when she went a bit blue, followed by a strange transparent color. Even though she got her color back quickly, we still rushed her to Children's hospital where she was admitted and had to stay for the night. At least she was in the PICU this time, so we could stay with her.

After all the tests were complete, it turned out she probably had choked a bit on her formula, but was able to clear it herself. The best part about the visit with all of the doctors was learning that Graci indeed had a Gag Reflex. Apparently, this is one of those things that can be missing with these little DS babies. One more thing to make us hopeful and excited about Graci's progress.

Surgery scheduled
In late June 2009, we went for a Cardiology appointment and were excited to tell the doctor about all of the new things Graci was doing. He asked us questions and we answered like we usually did. He reviewed the x-rays and EKG and performed Graci's exam. Up until this point, we'd been thinking her heart surgery would happen some time in the fall. When he was done with the exam, he said it was time to schedule the surgery and it should occur within the next few weeks. Then he wrote a prescription for heart medications. She hadn't had to take them yet and we sure weren't prepared to start giving them to her. One med two times per day and the other three times per day. That sure felt like a huge responsibility.

Graci's heart surgery was scheduled for 16 July 2009. She has one set of Grandparents who live in the same city as well as two aunts and two uncles. Her Grandparents from Eugene, OR and aunt from Seattle, WA all planned to come down for the surgery as well.

Meeting with the surgeon
The day before surgery, we were scheduled to meet with the surgeon and his nurse to walk through what to expect and to go through all of the risks associated with the surgery. It was awful to hear about all of the things that could go wrong. They have to tell you everything because in the end, you have to give your consent to proceed. We asked at the end if he ever had anyone who didn't sign the consent form. He simply told us she wouldn't make it without the surgery and we tearfully signed the form.

The most important part of this visit, we learned the next day, was when they showed us a doll that had tubes coming from its belly, tubes down its throat, wires and more tubes coming from everywhere. He and the nurse explained what everything was for. And they said that when we see Graci for the first time after the surgery, she would be covered with tubes and wires and it would look pretty awful.

Prayers for Graci

Graci's Aunt 'Nise added a prayer request on Facebook a few days before surgery. One of her friends said she would light a candle and say a prayer at 8pm in her honor. That message turned into a candle lighting ceremony in several States and Countries around the world. The Moose Lodge in the small town Graci's mom grew up in held a candle lighting ceremony and had hundreds of written prayers for Graci. At our house, we had a friend of the family, who is also a pastor, come lead our prayer and candle ceremony. We felt so much love and were given so much strength from the worldwide event.

Day of surgery
The next morning we were up early and on our way to the hospital. We sat in the pre-surgery area with Graci while they checked her in, took her vitals and we waited for the surgeons nurse. There were lots of hugs, kisses and tears even before they took her away. The handoff to the nurse was absolutely awful and we decided no parents should ever have to do that. The nurse said she would page us when Graci was on the ventilator and heart bypass machine and then again when the surgery was over. Even today, two years later, the heartbreak of this moment still resonates.

They thought the surgery would take up to four hours, so we joined the rest of the family for the long wait. We walked to the chapel, prayed and cried for a while. We added entries to the prayer book and sat in near silence... through the sniffles.

We decided a walk outside would do us all good, so we decided to go across the street for a Starbucks. As we were walking out with our drinks in hand, the pager went off. We dreaded making the call because we really didn't want to know when our baby was on machines. Cole called the number. It had only been an hour and forty minutes since surgery was supposed to have started. You can imagine our complete shock when the nurse told us the surgery was over and she would be in recovery within 20 minutes. She said everything went so well and so quickly that she didn't have time to send the first page! Thank God for answered prayers!

Recovery
We were in the waiting area when we saw Graci's bed get wheeled by and on her way to the PICU. The surgeon and his nurse came in a few minutes later to discuss the surgery. "Everything went as expected and she did very well." Again the answered prayers!!! They said we could go in and see her within the hour. The nurses just needed some time to get her settled.

We made our way to Graci's room to see her for the first time without a broken heart. And here's where we realized how important that doll was that the surgeon had showed us the day before. She had tubes, wires, bandages and wraps everywhere. She still had the ventilator in and that just killed us to see. This might sound a little odd, but Graci had Grandmas, Grandpas, Aunts and Uncles there to see her as well. We decided it might be best to take a photo of Graci and text it to her Aunt in the waiting room. We saw that doll ahead of time and knew a little about what to expect. But, they hadn't and we knew it would be overwhelming for everyone. As hard as it was to see, they all agreed they were glad to see a photo before stepping into the room. Out of respect, that photo was of course deleted immediately.

We spent five days total in the hospital with Graci. Five days? How is it that these little angels can recover so quickly? Graci was off of the morphine drip on day two, had the ventilator removed on day three, the chest tubes removed on day four and was eating like a champ on day five! She made it through open heart surgery like it was nothing! All of our fears were gone just like that. What a blessing and what amazing surgeons to be able to perform heart surgery on their little tiny hearts. Unbelievable.


Now for the good stuff!
The thought of open heart surgery on your child... any child... is devastating. But, we've lived it and want more than anything to share the results with others who are preparing for this surgery. There is nothing that we can say to take the pain of the idea of surgery away, but we can go through all of the positives that we have experienced after having gone through it.

The first thing we noticed after her surgery, and this was just days after, was her color. She was actually pink for the first time ever! Our little porcelin doll was actually supposed to be pink! We hadn't realized this and were so surprised to see it! Graci's cardiologist said that was a common theme among his patient's parents.

Before Graci left the hospital, she was already off of one of the heart medications. And, within two weeks, she was off the Lasix as well. What a relief that was. We worried so much that we would miss a dose along the way.

Within five days of surgery, she was finally belly laughing. How fun to see her have the energy to truly belly laugh!

Graci was only four and a half months at surgery time, so she was still on formula. Before surgery, it would take her up to an hour to get through four ounces of formula. Soon after surgery she was eating six to eight ounces in 15 - 20 minutes! And, she was able to hold almost all of it down. She had a problem with projectile spit-ups out her nose and mouth, but after surgery, this nearly stopped altogether.

She really started working on her gross motor skills after surgery. She had so much more energy that rolling over became a much easier task and pulling herself up to stand on laps began to happen everyday!

These are all common occurances as shared at our family group sessions. If you have a baby in need of this surgery, we hope you will take comfort in Graci's story and that it will help you stay positive and keep the faith.

Meet Graci Nicole

Our beautiful Graci is now two years old. She has been such a blessing to our entire family and has really changed our lives in the most amazing ways. It's funny, when you first have a baby with Down Syndrome, you hear that statement over and over again. "She is a blessing and will truly change your lives." But, it's hard in the moment to imagine how much things will change. It is magical indeed... watching friends and family as their eyes are opened, minds are changed and spirits lifted just by being a part of Graci's life.

One of the best parts of having a child with a disability is the complete celebration of every single milestone. We celebrated when we saw her hands come to center, when she rolled over for the first time, when she transferred toys from one hand to the other, when she sat up on her own... every single little thing she did was celebrated. When you think your child may never be able to do those things, you really take notice when they do. That's part of the magic as mentioned above. Nothing is taken for granted.

In the past two years, we have made it through a stay in the NICU (Neonatal Intensive Care Unit), heart medications, open heart surgery, nasal issues, hematology issues, constipation, feeding issues and a complete lack of knowledge about Down Syndrome. We've worked with in-home early intervention, physical therapists, occupational therapists, speech therapists and even a massage therapist. It is unbelievable still that most of these therapies, at least here in California... (and at least for now - budget cuts are always threatening special needs care) are free. And that's a good thing too because we've also been faced with a job loss followed by a career change. International travel as a Software Consultant didn't really line up with the therapy sessions necessary for Graci. (Watch for a post on how we fixed the constipation, feeding and job loss issues)

We've decided to put this blog together to help guide folks who are pregnant with, have just had a baby with or who may be adopting a baby with Down Syndrome to help guide them through the first few years. There are so many resources available and early intervention is key to helping your baby get off to the best start possible. Graci is two now and we forget so much of the time that she has Down Syndrome. She's just Graci and we couldn't possibly love her any more!

Our New Baby Has Down Syndrome???

The following entry will walk you through our raw emotion of first learning Graci had Down Syndrome. We've come a long way since those first days. It is important for you expectant parents and brand new parents to understand that it is okay to mourn the loss of the perfect baby you thought you would have. We've learned in our support groups that we all go through a grieving process and that it's okay to do so. One of the things we were told early on is that God picks special families to have special children. And, you are never given more than you can handle. Hold those things to be true and you will get more by way of blessings and joy than you can imagine. YOU can do this... and your child will show you how!

Post from March 2009
Our beautiful Graci's first couple of weeks were filled with lots of ups, downs, twists and turns for the rest of the family, but she handled each day with the patience and strength to be admired by all!

Thursday, March 5th
Graci's birth.

Born at 8:59 am weighing 7 lbs 6 ozs on March 5th (the date I said, even before we saw the doctor, would be her due date) Mother's really do know these things. Why the doctors second guess and question a mother is beyond me. :) I knew Graci and I would prove them all wrong!

We had two hours to enjoy our highest of highs with our precious little Graci before a problem was noticed.

Graci's early diagnosis

During those two hours, Graci's color went a bit blue twice. She was placed under the heat and given oxygen and then was fine. At about 11am, the nurse said she wanted to get a second nurse to take a look just to get a second opinion. At 11:30am, they had to take her into the NICU where a Pediatrician could work with her.

Coming down from our high, we were visited by the Pediatrician and two nurses. They asked Denika to go to the waiting room for a bit. And then... that's when they said it. "We think Graci has Tri Somy 21, also known as Downs Syndrome." Our highest of highs quickly changed into out lowest of lows... right there on her birthday. After getting through the initial shock and the docs giving us time to regain ourselves, Cole went to get Denika. We talked as a family about the situation and Denika said "Well, God doesn't make junk." and we know that to be true. We started to get excited again. God is entrusting us with the most precious and joyful angel and we knew we could do it.

They came for Cole so he could go visit her in the NICU and had to leave me behind, because I had fainted. Cole returned with word that she's doing well and is just so beautiful.

Graci's next diagnosis

While on the upward swing back into our next high, the Pediatrician came back to our room. This was now about 3pm or so. "Graci has a possible heart condition. We are hearing something that sounds like a clicking noise. She's being checked by the doctors, but we may need to transport her to Rady Children’s Hospital."

Wow... really? Can't we all go back to that beautiful moment in time when Graci was born? When Cole helped every step of the way... counting and encouraging me... holding my leg and foot in position... filming, taking pictures and Facebooking all at the same time??? Does anyone remember how beautiful that was? When she popped her head out and christened everyone in the room? We all laughed and cried and nobody could believe how beautiful her porcelain skin? Please... stop talking and just go back with us and let us enjoy that moment. Please!

They let us go see her in NICU at 4pm... first I had seen her since they took her from our room at 11:30am. They even broke their rules and let Denika into the NICU to hold her before they had to take her away.

Graci on her way to Rady Children’s

Since I was still recovering, Cole followed the ambulance to Rady’s while Denika helped me with the breast pump and with anything else I was needing. I continue to be taken by her maturity and strength.

Cole got her checked in and stayed with her while the Cardiologist worked with her and looked at her little heart. Visiting hours quickly came to a close, so he had to leave her. He brought food back to the hospital for Denika and we visited a bit more. I sent Cole home with Denika so we could all get some sleep and had the longest night in the hospital without my babies.

Friday March 6th
Graci's diagnosis from Rady’s


They finally set me free on Friday from my hospital so Cole and I were on our way to Rady's. The cardiologist told us she has a significant hole in her heart. One that will not repair itself, but will require surgery. Open heart surgery on our precious little angel. Some good news, the Downs Syndrome actually delays the need for surgery for up to two years. Their little lungs keep the pressure longer than other babies and will help keep the heart from trying to flood the lungs. In Graci's case, they think she will require surgery at around months 6 - 9.

Now we're back in the lows, but encouraged by the amazing staff at Rady’s who ensure us that this is the most common heart defect in any baby and the success rate is high.

The next day, Saturday, we went back to Rady’s to be with Graci. Our friends Wendy and Steve opened their home to Denika for the day to hang out with her friend Ivy... and they had a great day looking for boys during errands and swimming in Ivy's pool.

At Radys, Graci seemed to be thriving. Her saturation levels were staying high and we both worked on breast feeding. The cardiologist came back to chat with us and said they now think Graci's open heart surgery will happen in month 4. I don't remember if we found out why 4 months instead of 6 or 9 or 2 years. Cole and I are on information overload at this point.

Later that day, the cardiologist released Graci from their standpoint and now we just needed the team of doctors and nurses caring for her to do the same. Cole and I were so excited at the possibility of taking her home! A few hours later, they told us to go get the car seat... she's going home!

Cole brought the car seat in and we put her right in! But... the straps were set for a preemie baby and we had no idea how to change them! Luckily, we found the manual and Cole started fixing while I was reading instructions. Thirty to forty-five minutes later, we had the straps set to fit her and other than one little twist in one of the straps, we were good to go! The nurse suggested we fix it at home later.

Taking videos and pictures all the way to the car, we were on our way home!

Saturday March 7th
Graci comes home!!!

Cole called Denika from the car to let her know we were on our way. We picked her up from Wendy and Steve's where Graci got to have her first 'in home" visit. Wendy had put together a Mac & Cheese dish with salad and bread. What a wonderful thing to do for us.

On to the house. Cole brought Graci in and walked her through the house showing her everything. He took her to her room and she kept picking her head up to look around. It was time for her to eat so Denika held her little sister and fed her for the first time.

A little later, Cole's folks, Richard & Norma and Cole's brother, Dave with wife Kerri all came to see Graci. They brought two large pizza's so we decided to put the mac & cheese in the fridge for the next night. It was a wonderful visit, but Graci slept through the whole thing.

That night, Cole and I worked in tandem on feedings every three hours and diaper changes. I had to continue pumping since Rady’s suggested I only put her to breast once per day to monitor the amount she was eating. So, I'd get up just ahead of her to pump and Cole would sooth her when she woke up until I could get the breast milk to her. While he was feeding her, I'd get the diaper change stuff ready. We were a great team... Team Caswell!


Sunday, March 8th
Graci turns yellow

The next morning at around 9am I couldn't get her to wake up for her food. She barely ate anything and just didn't seem interested in much. I sat down in a chair near to the window and realized she looked yellow. I immediately called Mom to ask what to do for Jaundice and she said "Just call the doctor. Don't mess with it." I then called Allison who just had her son Sean and dealt with Jaundice when he was just 5 days old. She came right over and said she thought Graci was yellow and we should take her in.

Here's where it gets tricky. We found out on Saturday that the Pediatrician we chose is not covered on our insurance. Unfortunately, it's the weekend and there is no way to square this away until Monday. So, now it's Sunday and we need a Pediatrician or anyone to call to find out where to take her and what to do.

On the advice of the answering service at my doctor office, we went to an Urgent Care. We got there and were quickly turned away and avised to go to the Urgent Care just up the road. Once there, we were called back immediately where the nurse started her assessment. Cole and I gave her the four page Discharge Summary on Graci, which Radys advised us to do anytime we take her anywhere to be seen. The nurse took it to the doctor and within minutes, we had three doctors in our room telling us they would not touch her. With her heart issues and everything else, they wouldn't even look at her.

At this point I said, "Does she look Jaundice to you?" One of the doctors responded with, "How does her color look to you?" I said, "I think she looks yellow." He said, "Well then you should take her to emergency if that's what you think." Hmmmm.... so does he think she's yellow? I really don't know.

We left the Urgent Care, got out into the sun, and she really didn't look that yellow anymore. I said to Cole, "If he thought she was Jaundiced, he would have told us. I think we should go home and see how she does." Cole agreed. So, we were on our way home.

Graci woke up on the drive home and I was in the back seat with her. Since she hadn't had a drop to eat in now five hours, I decided to try to get her on the breast. As I was holding her, I once again saw the yellow. Deep in her eyes she was just all yellow. I told Cole I could really see it again and I think we need to take her to an ER. He drove us straight to Scripps Encinitas... where we had her three days earlier. This is clearly where we should have taken her in the first place. Ugh... we have so much to learn.

Back to NICU

In the ER, while waiting for lab results, I pulled out my pump and Cole took a couple of snapshots because it's simply one of the funniest things you'll ever see. I finished and was so proud of the two ounces I produced! So proud until I accidently spilled a bit out of each bottle. Ugh... ask any mother... breast milk is pure gold and never should a drop be wasted! Oh well. It was still pretty funny because I was mid-brag on the 2 ounces just when it happened. No use crying over spilled milk.

A few minutes later, the lab work came back and they found her Bellirubin (sp) levels to be 18. Anything over 20 and they're automatically entered into the NICU. With Graci's troubles, she was admitted right away. So, we've come full circle. Right back to where we started. They welcomed her back into the NICU and promised they would take good care of her. It was now 6pm and almost time for visitors to leave. We kissed her goodbye and promised to be back on Monday. Our hearts just ached to leave her again, but at least it was just for Jaundice. Something 50% of all babies deal with... and it had nothing to do with her "issues". This was a good learning lesson for Cole and me. We must always follow our instincts with this little one. No more second guessing ourselves.

We arrived home without Graci and it just felt empty... again.

Monday, March 9th
Graci doing well

Cole and I split our list of to do's... secure a Pediatrician, add Graci to our Insurance, make follow up appointment with Cardiologist, etc, etc, etc. Team Caswell at it again. I finally got to Graci just as she was ready to eat. Her Bellirubin number had gone as high as 21 overnight, but was working its way down now holding steady at 11.7. Good news as they'll send babies home in the 10 to 12 range. She ate well overnight and her saturation levels were right on track.

I stayed with her throughout the day, taking her temperature, changing diapers and feeding her. We were visited by the lactation specialist who whipped us both into shape during one of our feedings. Wow... what a difference. Graci is eating like a champ!

Home now for the evening again without Graci. But, we were comforted by that wonderful Mac & Cheese dish that was waiting in our fridge. Denika said it was the best Mac & Cheese she'd ever had and we all agreed it was probably the best dish ever cooked in our home. Thank you again Wendy and Steve!

Tuesday, March 10th
Graci is getting discharged!


At about 11:30am, they told us Graci was going to be discharged and we should use the time during the day to get errands done... go grocery shopping, pick up a few things at Target and go to PetSmart for dog food and bedding for the guinea pigs. Once finished, we would go back to the NICU with the car seat ready to take our precious angel home again! We were on a pretty good high again just knowing she would soon be home with us (and that the car seat was ready for her!)

Phone call from NICU, she's had an episode

We knocked out Target, but outside of PetSmart while I was on the phone with Cardiology securing Graci's appointment, Cole took a call on his phone. It was the NICU and Graci's saturation level dropped and required intervention to come out of it. They didn't know if it was her tongue that had blocked her airway or if it was a reflux issue. They weren't sure what happened, but since it took a nurse to come to her and turn her to bring it back up, she would have to stay in the NICU until at least Friday for monitoring. Another low, but thank God it happened while she was there and had monitors on her.

Right back to the NICU to be with our Graci girl. While there, Cole got a paper towel and pen and asked me to jot down a grocery list. He would go pick up the girls in our afternoon carpool and would go grocery shopping after.

I stayed until they kicked me out at 6:40pm and made the ten minute drive home... crying most of the way. It's just so draining and hard on your heart to leave her behind. When I walked in, the first thing I noticed was cinnamon spice candles lit in the living room and kitchen. The scent was absolutely wonderful and the candles were beautiful. The stereo was playing one of our songs and Cole was bbq-ing steaks. And, in a vase in the kitchen were my favorites... tulips. I broke down right then and there. Cole always brings me flowers and remembers the little things that make me melt, but tonight it meant more to me than ever and I completely lost it.

After dinner, Denika and I had a special Mother Daughter moment while I was pumping. She had stuff she wanted to talk about and I was happy I was there for her. It was a pretty special afternoon because after Drama class, she and her friend Julian walked from the library to the yogurt shop and had a yogurt together. His mom picked the two of them up after and brought them home and she was on cloud nine about the event. Though some of her discussion topics were pretty heavy, I was glad my pistons were firing enough so that I could be there for her.

Denika was off to bed, so I joined Cole in the man room. We had a glass of wine and then I thought he was putting a movie on the big screen. He started it up and it was a video that he put together of most of our pictures of Graci set to music... "With Open Arms". Oh wow... was I ever bawling now! You can see this video on his Facebook. Bring tissues. What an amazing Daddy and Husband. I have truly been blessed.

I spent a lot of time today trying to figure out how we were going to tell our extended family about Graci and her diagnosis. Why am I so worried about everyone else and how they will take the news? I'm not sure what I am feeling... am I worried Graci will not be accepted? Am I worried they will be disappointed? And, disappointed in what? Oh boy, I guess I better take care of my own insecurities and just get the word out and let them take care of their own.

I decided my daily diary entries could tell the story and I would simply add it to Facebook. I spoke with my sister and she suggested she would also email it out to our entire family and she would be the point person for all inquiries. What a great idea! I worked on my Facebook entry and decided I would add it as a note. There is probably a better forum, but most of my friends and family had followed my pregnancy and Graci's birth on Facebook, so why not make the announcement this way?

Wednesday, March 11th
Possible issue overnight
Cole had HR stuff to deal with at work and a few other errands, so I went to the NICU to be with Graci. The doctor informed me that she had a saturation issue overnight... not one that required intervention, but one that causes concern anyway. She wanted us to know that Friday was still a possibility, she may have to stay in the NICU into next week for monitoring. We know it's the right thing, but it's so terribly difficult not having her home with us.

Today she had about 30 minutes of uptime after her feeding. She just looked around, looked at me and I'm pretty sure tried to smile. She did have gas pretty good, but I'm sure that didn't have anything to do with it. :)

Cole arrived at about 2pm and held her and kissed her all over. She was pretty sleepy, but she knew he was there. We finally put her back in her crib and decided to go get a snack. While there, I told Cole I was exhausted and followed that with a good cry. We went back into the NICU and the nurse said it would be best for me to go home and get some sleep to keep my milk supply up and for my own health. We agreed I probably too weepy to stay there late, so we kissed our beautiful angel and made our way home. I climbed straight into bed and slept like our Graci.

When Cole called me down for dinner, I immediately smelled the cinnamon spice again and found the table set, food on and Denika and Cole waiting for me. Unbelievable this man of mine. We had a nice dinner and called it a night.


Thursday, March 13th
Another day at NICU

Today I got up a bit later than expected and was scrambling to get to Graci before her 9am feeding. Cole offered to get on the road and stop by the bagel shop and Starbucks where he would be waiting for me in the parking lot to pass me the goods. I ran around and got my things together then promptly drove off without the breast milk expressed the night before. This is what she eats at night when I'm not allowed in the NICU, so one quick turn around and I had it.

When I drove into the parkling lot I could see Cole waiting for me. There were people and cars everywhere and my man was interested only in one thing... making me laugh! He had his shorts pulled up with his belt nearly around his chest. People were looking at him and he didn't have a care in the world! OMG he makes me laugh!

Cole and I raced on to the NICU to find Graci just starting to fidget a bit. She and I struggled for about 10 minutes, but then she latched on and ate her breakfast. When she was done, we held her and took some pictures and then she was ready to sleep again. Cole left to run some errands and I stayed with her. It's easier to get milk when I pump when I can look at Graci's precious little face.

At noon, the doctor came over to give me the daily update. Graci's Billirubin had gone up to 14 overnight and her weight was down to 7 lbs 1 oz. She wants to put her back in the incubator under the lights and she needs to see her gain wait. She said Friday is not likely for a release day, but maybe over the weekend or into next week. I held myself together until the doctor left the room. Then, I had to get out for a walk... and a really good cry.

It is such a struggle wanting her home so badly yet knowing she is where she needs to be. I had sent a text to Cole and he called me right away. He reminded me that it is God and Graci making the decisions here and that as hard as it is, we just need to be patient. I know he's right. I walked into the lobby waiting area and continued my cry for a good twenty minutes before realizing it was time for me to eat.

After lunch it was time to feed Graci again. She latched right on and it was beautiful. As soon as she finished, I had to put her into the incubator and she went back to sun tanning. At least she looks peaceful while under the lights.

Cole took care of the afternoon carpool and then brought Denika to the hospital. The two of them stood at the window while I bottle fed Graci. What an awesome thing for Cole to do for both me and for Denika. She hadn't seen her sister since last Saturday night and I know this hasn't been easy for her.

Once done feeding Graci, Denika went to the waiting room while Cole and I kissed her goodbye. It is best to keep her under the lights for all of her feedings until the next morning to try and knock out her Jaundice. Cole, Denika and I decided we should go out to dinner. We had mexican and enjoyed a dessert of fried icecream and some kind of volcanic mud slide thing that was beyond sinful!


Friday, March 14th
Yet another day at the NICU

Up again and back to the NICU to see our precious Graci. She is just so beautiful and such a fighter! She had another good night and the Pediatrician will decide today whether or not she can come home. I found myself watching the clock the entire morning just waiting to see her doctor.

I was changing her diaper and checking her temperature when the Pediatrician arrived. I must say, I am so thankful for the NICU nurses that they allow us parents to do these things... to care for our babies in the way that we would be caring for them at home.

The doctor checked Graci's stats and performed an exam. Although she really is doing much better, he still feels she would benefit from one more night in the NICU. Her Billirubin is down, but he is still concerned enough to want her on the saturation monitors for another 24 hours. Ugh... 24 hours seems like such an eternity. But, on a positive note, it's only 24 hours! They moved her from the sunlamp incubator to a regular NICU crib. How wonderful to see her that way!

I stayed the rest of the day and Cole came to visit his little angel. She studied his face the entire time she was awake with him. I wonder what she thinks of us? I know he is absolutely in love with her. Watching him with her melts my heart completely. I always wondered how he would be as a Daddy. I can tell... he will be the best.

Time to go and prepare to bring Graci home. We are all so excited about tomorrow.

Saturday, March 15th
Graci comes home for good!

When we got to the NICU today, the nurses had already started to pack up Graci's things. The little Graci sign that was hanging on her crib, the foam "glasses" that covered her eyes while under the lamps, the blanket, the hat... all of the the things that she used during her stay. They will all come home, along with her arm bands, to be put into her baby book.

She was finally discharged and we put her, again, into her car seat to make our way home. Time for a huge sigh of relief... and a large gulp for what might be to come.