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.
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