We're over here enjoying our long weekend. I love when my husband is home from work and we can hang out. Right now it's 1:28PM and all three girls are down for naps! Yay!
Aislinn's 5th birthday party was on Saturday and my nephew Jack's 2nd was on Sunday. We had lots of fun this weekend.
I'm in kind of a funk right now, worrying about Linden's heart, dreading the start of summer---officially starts tomorrow. Waaaaaaaah!!! I'm really wanting to do something different in our house. We're renting right now and sometimes it doesn't feel like home to me, just a place where we're staying. It looks like we'll be here for a while, so I really want to do some personal touches with it like paint the living room walls. Currently, they're taupe, and I'm a more bright fun color kind of person. Our couches, walls, furniture, floor are all brown. Also, most of it was my husband's furniture from before we got married, so I would love to have some of my own things as well. The only thing that is 'mine' is our kitchen table which he really doesn't like. It's too 'old fashioned' he says. I say it's classic. We differ. Haha. Anyways, I'm thinking something like a butter yellow in the living room because I'm pretty sure that 'Brown man' will agree to that as it's not a drastic change. I would love to be able to change the floor in the kitchen because it's orange, yellow, and brown lineoleum. Doesn't that sound so beautiful?!? Right from the 70s, so it hasn't been changed in 30 + years! Yeah, um, time for some new flooring, eh?
I'll post pictures when we actually do paint the living room, but for today it's just a sweet picture of Aislinn looking so much like me when I was her age.
Sweet and beautiful Faith Hope passed away today. My heart broke in two when I read Myah's latest post. She will not be forgotten. I read the blog everyday and Faith brought a special joy to my life. I pray that Myah will find peace in this.
Well, the prayers are STILL working!! I have good news and bad news. The good news is that there is no more and no less valve leakage in Linden's heart. The bad news is there is no more and no less valve leakage in Linden's heart. That means that the medicines are still working, but there still is quite a bit of leakage. Linden is currently on 5 medications-- Enalapril, Sotalol, Asprin, Lasix and Digoxin.
To everyone who comes in contact with her mentions how she doesn't seem like a sick baby, but there are some things that I've noticed about her, especially since starting the Enalapril and the Digoxin and getting back on Lasix. She used to have good muscle tone, but since those meds, she's been alot weaker. Her legs, at times, are very floppy. She was working on standing up when being held, but now I'm lucky if she has enough strength to play in her excersaucer. Her eyes have very dark circles underneath and they're always tearing up. Sometimes, at night, she will toss and turn for hours until she finally falls asleep. I believe that the Lasix does that to her because it starts happening within the day when she starts on Lasix. *she's been on it 3 times since November*
However you look at it, today is both a first and a last. It's the last day of first grade for Tristen! It's the first day of summer! We have lots of fun activities planned for the summer. Tristen and Aislinn will be in an art class at the local community college. They're really excited for that. This is a picture of Joe and Tristen on her first day of first grade.
November 19, 2007-- Linden was 2 days post op from her open heart surgery. My baby is amazing. Her doctors are amazing. Modern medicine is AMAZING. God is good.
I cannot believe that it's been six months since we were at Children's Hospital thousands of miles from home waiting for my sweet girl to come out of surgery. Day 2 was actually a good day. She was extubated and I got to nurse her for the first time after her operation. I remember how swollen she was and how hoarse her cries were, but she smelled so sweet and her tiny fingers curled around mine. I cradled her and rocked her for hours so thankful that she was going to be all right. I was so thankful that she was going to be healthy and I was dreaming of what kind of girl she'll be. I felt an actual bond forming on that day. Before then, I was so scared to lose her that I didn't feel such a strong connection with her, but on Day 2, I did.
This is right before I got to nurse her.
After she nursed. Look at how content she is here.
How tiny that sweet hand was. I took this because that is the approximate size of her heart. Isn't that crazy how they could fix something so small?!?!
It's really been hitting me hard lately about how much pain there is in this world. My eyes have been opened to all of these sick children and their families who love them. I read blogs about people who have lost a child or have a sick child and through all the pain and tears and sadness and medicine there is still a sense of joy when 'speaking' about their children. I know that the only way to actually see beyond what is happening right now is to simply have faith in God. He will carry you through it.
This is a blog that I visit several times a day. "B", as she calls herself, is pregant with April, who is due day now and she is an absolute miracle. She has been diagnosed with Trisomy 13 and Holoprosencephaly. Her doctors were pushing for termination but they decided to leave everything in God's hands and here she is at 39 weeks (!!!) along!! God is definitely good. So, go on over there and read her posts and feel the presence of the Lord. He truly speaks through her. These coming weeks will be some of the hardest of B's life so please lift her up in your prayers.
She had some valve leakage at her last appointment so that's why her doctor wanted to put her on two new blood pressure meds, Enalapril and Digoxin, to lower her lung blood pressure and to force the 'bad' blood out of her heart. According to the 4d echo that was taken last appt it did look like she had a defect in the anatomy of her heart and that the meds most likely would not work because another surgery would be required to fix the leakage. After reviewing her echo today, her doctor said "She looks marvelous! There is significantly less leakage than last time and it looks like the meds are doing their jobs. We're going to put surgery on the back burner for now." I am sooooooooo relieved! It doesn't necessarily mean that she won't need surgery but for now she's responding incredibly well to the medicines. Her doc was shocked! He said that wasn't what he was expecting to see at all.
Thank you so much for the thoughts and prayers!!!!
Linden had her AV Canal repair surgery at Boston Children's Hospital on November 17, 2008. We were referred there when, after she was born, the echo showed that her heart had a more complicated anatomy than what they were expecting. Her doctor didn't expect her to get much bigger than she was at birth--5lbs 9.2oz--and he said that Boston is where he sends his "sickest, smallest, and most serious" patients. I remember that appointment like it was yesterday. My mom was with me and we were crying our eyes out. Well, Linden ended up never getting sick or showing signs of heart failure before her surgery. You never would have known that her heart was sick by looking at her. I was so thankful that God kept her well during that time. I'm also very thankful that God led us to Boston because they saved her life! She was in and out in a matter of a week. Can you believe that? I wanted to run through the halls screaming "She had OPEN HEART SURGERY a week ago!!!"
Well fast forward to the five month check-up after her surgery. Her cardiologist Dr. B was doing the echo and was unusally quiet. I don't think I even heard him breathe.
"She has alot of valve leakage, more than I want to see," he said after about 5 minutes of complete silence.
He then went on to tell me that before anything else, he wanted to admit her into the PICU for a blood pressure medicine to lower her lung blood pressure called Enalapril. He wanted to administer it in the hospital in case she had a bad reaction to it. He also wanted to put her on Digoxin to slow her heart rate down and Lasix to get rid of the extra fluid around her heart. That brought the grand total to 5 meds for her as she was already on Sotalol for the SVT (Super Ventricular Tachycardia) that she experienced 4 episodes of after her surgery in the hospital and baby Asprin for what is believed to be a small blood clot in her heart. He admitted her in the hospital that night and administered the drugs.
She responded amazingly well to the medicine well and was discharged after three days. She was coughing alot in the hospital and it continued once she got home so I was concerned that she may have a respitory infection of some sort. The many doctors and nurses who saw her didn't think that she did, though. However, Mommy's gut instincts are always right! She was coughing so much that she vomited all over our middle daughter (Sorry Aislinn!), so I called her pediatrician, who happened to be on vacation and referred me to another here in town. She saw Linden that afternoon and checked her ears and said that she had a raging double ear infection. My poor baby! She had been sick the whole time and no one bothered to check her ears even though I said that she was not feeling well. Dr. C put her on Augmentin, an antibiotic, which brought the counts of meds up to 6!
She started the Augmentin on Monday and by Wednesday she was STILL vomiting and had diarrhea, so I called Dr. C again and she said to bring her in right away. She didn't like the way Linden looked and I was concerned that she wasn't nursing or urinating enough. She ordered a chest x-ray (to rule out pneumonia) and bloodwork to check her electrolytes. About an hour or so later, Dr. C called back to say that her bloodwork came back and her electrolytes were really low so I needed to bring her in for an IV of fluids.
It took the nurse three sticks to find a vein and she finally did. Linden just cried and cried but never really squirmed around. She just keep looking at me with this sad face like "Mommy, please pick me up and nurse me." It was terrible. As soon as it was in, though, I did pick her up and nurse her while she got the fluids. She slept for about 30 minutes and didn't even wake up when the nurse took the IV out. Her doctor also ordered her off of the Augmentin and gave her some antibiotics through the IV, which was wonderful.
Her cardiologist called me in the meantime and wanted me to come to the bigger office because there's a more technologically advanced machine and he wanted some 4D images of her heart to rule out an anatomical defect that would require another surgery. We went a couple days later. It was really neat to see her heart in 4D--it's not what I thought it would look like. It took about 15 minutes to get a really good look at her heart and he sent me in the back room to nurse her while he looked at the shots with his partner. He came in after about 20 minutes and said, "Unfortunately, there is an anatomical defect with Linden's heart and no matter how much medicine we give her we can't fix it. She needs another surgery." I asked about where the surgery would be and he said that we would be going back to Boston but he had to send the information and video images to his colleague in Boston to look over and then they would decide the timeframe for the surgery.
Joe and I were really, really sad. We thought that we put that behind us and she just looked SO healthy that it was impossible that her heart was so sick.
Tomorrow is our follow-up appointment from that day and we're finding out when her next open heart surgery is. I'm very nervous about it. Don't think badly of me, but before her first surgery, I didn't bond with her as much as I could have. I was so scared to lose her that I was basically preparing myself in case something happened to her before surgery that I would be OK. Now, I am a wreck. She is my world. I cannot imagine losing her. I do love her so much more now. It's a different kind of love than before. I was scared to lose her and then she was healthy, but now she's sick again. Please keep us in your thoughts and prayers.
I miss my friends. I miss living at my mom's house. I miss fighting with my sister instead of going to sleep. I miss Howie. I miss nursing Aislinn. I miss being carefree. I miss Dad-Dad. I miss sharing a room with Kip. I miss MamMaw. I miss cutting out pictures of babies and dreaming of how my life would be when I grew up. I miss staying up all night talking on AIM. I miss my room wallpapered with Hanson posters. I miss borrowing clothes from Amanda. I miss swimming at Haley's. I miss Haley. I miss being crazy at Kristi's. I miss Kristi. I miss making plays with Melany. I miss Melany. I miss Melanie's 'oranges'. I miss Melanie. I miss fighting with Kathryn over the denim booksack that she got. I miss Kathryn
Life happens SO fast. Time flies. I'm feeling so sad today.
In September 2008, we were blessed with our youngest baby girl, Linden Caroline, who happens to have an extra 21st chromosome (Down Syndrome). She is a complete and utter joy! She also had a heart defect, Complete Atrioventricular Canal Defect which was repaired November 17, 2008 at 11 weeks old and only 8lbs 8.8oz. She came through that just fine, but she'll have to have another surgery soon to correct the valve leakage issue that she has now. She's a trooper. :)
Here's a picture of her at 7.5 months. She's always such a happy, smiley girl!