Updates from CarePage leading up to OHS

Anxiously Waiting

Posted May 14, 2011 11:05pm

Well, we are heading back to Children's Monday for Hailey's cardiology appointment. I can honestly say, I never imagined my infant would have a cardiologist. She is scheduled for an echo and an EKG. We are hoping that Hailey is sound asleep when we get there. If she is asleep, they are going to attempt her echo without sedation. If not, she is too squirmy and active, so she will need sedated. Both of us are anxious to have a surgery date. Hopefully, we will get a date or better time frame Monday.
Hailey is still a very easy baby. She is sleeping 6-7 hours at a time at night...thank goodness!!! She doesn't cry often but when she does it is like 0-60 in just a second or two. She has the standard cries...hungry, dirty diaper and then there is the whiny cry that means "I need held". Oh wait...that would mean she is spoiled :-)

The Waiting Game

Posted May 16, 2011 4:32pm

Hailey had her follow up, EKG and echo today at Childrens. Unfortunately, she did not gain like they hoped. They have increased the amount of formula powder in each bottle to increase calories. We also have to add an extra feeding. Looks like mom is waking up at 3 a.m. again. We are going to our pediatrician in two weeks for a weight check. As long as she continues to gain something we are good. If she loses weight, we may need a feeding tube inserted until her surgery but it would be temporary.
Unfortunately, Hailey was quite active today so they had to be sedated for her echo. It did make it go quicker though. Her cardiologist is presenting her case at her cardio conference this Friday or next depending on how many patients are already on the list. Her surgery should be between 4-6 from today. After the conference, we will hear from the surgical staff to schedule a date for surgery. Two week to a week prior to surgery we will have our pre-surgery consult with the surgeon and then we will go to Childrens the day before to fill out paperwork.
Hailey's surgery should last between 4-5 hours. They will be repairing both defects (ASD - the smaller upper one and the VSD - larger lower one). The repair will grow with her and she should not need another surgery. Barring complications, she should be in ICU for 3 days and then home in 6-8 days (total). The doctor commented on how quickly children recover from surgery. Hailey will need a follow up two weeks later to check her incision. After that she will need to follow up with her cardiologist periodically. The first year will be the most...two months, six months, year, etc until we are then every 2 years.

Poor little peanut

Posted May 17, 2011 3:05pm

We received a call this morning from Hailey's cardiologist. She apologized but she forgot to have Hailey's blood drawn yesterday. Babies with down syndrome are prone to have thyroid issues. If Hailey's thyroid is not functionally properly, she will need to go on medication prior to her surgery. I took her this afternoon for her blood draw. The poor thing...she was only pricked once but she yelled and squirmed the entire 10 minutes that they filled the two vials. Apparently she does not like restrained! All is good now and she is napping.

One Step Closer

Posted May 20, 2011 5:45pm

We just received a phone call from Hailey's cardiologist. They discussed her case today and they all agreed that it is time to proceed with surgery. She said that the surgical staff should call us next week to schedule a date. We are going to make sure that Brayden is finished with school. Brayden and Ian are going to spend time in Indiana while Hailey is in the hospital. They will enjoy seeing their grandparents, aunts, uncles, and cousins. This way they will have a blast and won't notice their sister isn't home. It will also be easier on Jason and I. It was difficult hearing the cardiologist say "it's time". It is what I wanted to hear and it is what I expected to hear but it's different when you actually hear it.
We continue to hear fantastic stuff about her surgeon which is very reassuring!!
Please continue to keep Hailey in your prayers. Thanks!!!

And the Countdown Begins

Posted May 24, 2011 11:03pm

Well, we received the phone call we have been waiting for today. Hailey's surgery has been scheduled for July 12. As long as no one more critical comes in, her surgery will be at 7:30 a.m. We are meeting with her surgeon, Dr. Manning, on July 8 for a full explanation of her surgery and to answer any of our questions. Hailey has a full day at Children's Hospital on July 11 for pre-op. She will get a full examination to make sure she is okay. We are meeting with the anesthesiologist, nurse practitioner, and get a full explanation of the wheres and whys of her surgery and hospital stay.
I was a little disappointed that Hailey's surgery isn't until July. I really wanted it in June to get it over with so we can start living and not focusing on life "before surgery" and "after surgery". I have to change that thinking because as with everything with Little Miss Hailey...her mother with her Type A control-freak personality...cannot control the situation. It is giving Hailey more time to get stronger and bigger.
Hailey is starting to show more of her personality every day. She is smiling more frequently and sharing those beautiful dimples. She is showing her persistence during therapy. She is even portraying a little bit of being spoiled and has learned to whine until someone holds her. Little Miss Hailey has found her niche in the Arthur household and we wouldn't have it any other way!

 

What a busy weekend

Posted May 30, 2011 4:51pm

Hailey had a whirlwind of a weekend with both families in town for her baptism yesterday. We are very blessed to have a large support system of family and friends. In true Hailey fashion, she slept through her entire baptism and was an absolute angel. She really is an easy, happy baby. We celebrated her baptism with both families at the house for lunch and then she took a big nap :-)
Hailey's eating this weekend was much better than it was on Thursday and Friday of last week. I'm hoping she ate enough this weekend to have her weight at a decent number for tomorrow's doctor's appointment. She has an appointment in the morning for a weight check. We are crossing our fingers and praying that it is up a little...we aren't looking for a big number just a gain.
Hailey charmed everyone this weekend by "talking" and flashing her gummy grin to anyone who would look at her.
Her surgery is 6 weeks...42 days from tomorrow. There are days when she is not eating or breathing harder than normal when it seems like it is 6 years away. Then there are days when all is going well that it seems like 6 weeks is okay and it will be here before we know it. As everyone knows, patience is not one of my stronger traits. Hailey and God are helping me work on some of my weaknesses :-)

Hailey Rocks!

Posted May 31, 2011 11:21pm

This morning we met with Hailey's pediatrician. On May 9, Hailey's weight was 9 lbs 3 oz. Today she weighed 9 lbs 13.5 oz. It wasn't a huge gain but it is a gain. I am quite happy with baby steps. Hailey has another appointment with her pediatrician the week of June 13 for another round of vaccinations and a weight check. Praying that we can keep her healthy and all goes well for the next 6 weeks. Way to go Hailey!!!

Tough Cookie

Posted Jun 15, 2011 12:03am

We've had several people comment that if they didn't know about Hailey's heart defect, they would never know there is anything wrong with her. She really does look like a healthy, happy baby.
She's had an eventful couple weeks. Big brother Brayden is finished with school so the noise volume in the house has increased. This doesn't seem to phase Hailey. She seems to sleep better with more noise than less. We are still spending a few days a week at the baseball field as Brayden's season is coming to an end. Big brother Ian turned 4 on June 5. Hailey made her first trip to Kings Island. She didn't seem too impressed and she slept through her first ride on the carousel. Sporting her pretty polka dotted swimsuit, Hailey "swam" for the first time last week. She also met her first "famous" person when she had her picture taken with Nick Lachey at Great Wolf Lodge last Friday.
Over the last week, Hailey has started taking her bottles faster and has been eating more frequently. She has even been fussing for her bottles (this is really a first for her). This showed today when she had her 4 month doctor's appointment. Hailey now weighs (drum roll please.....) 10 lbs 4 oz. For anyone keeping track, that was a weight gain of 7 oz in two weeks. For our little peanut, that is HUGE! I was one happy momma today! Her pediatrician said that she is looking good and to keep doing exactly what we are doing. He thinks we should follow along with our therapy and not worry about pushing her until she has recovered from her surgery. Dr. Evans said the absolute most important thing right now is to keep Hailey healthy. I might need to start carrying my Lysol spray with me :-)
Hailey has therapy in the morning. I'm hoping she can show off her new trick. Today she rolled from her back onto her belly!
Hailey's surgery is only 28 days away...4 weeks from today. We will be so happy to have her heart repaired but so worried at the same time. In the meantime, we plan on enjoying our three children!

Hailey Amazes Me

Posted Jun 20, 2011 10:14pm

All of my children amaze me in one way or another...Brayden's concentration when he is into something and Ian's extreme love and knowledge of sports (just to name some of them). Hailey is no different. It amazes me that a little girl with two heart defects can look and act so healthy. Physically she is a little on the petite-side but that is the only thing little about her. She has such determination and persistence for such a small little body. She is making great strides in physical therapy. Yesterday, she rolled from her back to her stomach and continued on to roll to her back again. I'll admit, I didn't believe it at first because I didn't see it but I witnessed it today and it almost brought tears to my eyes.
The nutritionist called this morning and told us to increase the amount of formula powder we put in each bottle. They would like her to gain a little more weight before surgery. I also started increasing her bottles by 1/2 oz. today because she has been consistently drinking all of her bottle in about 10-15 minutes. I pray that she continues to do this well up until her surgery.
21 days from tomorrow, we take little peanut to Children's to have her heart repaired. If our little girl can do this great with her heart defect, can you imagine how fantastic she will do afterwards!!!!

OCD in overdrive

Posted Jul 1, 2011 11:07pm

Hailey had her last therapy session this morning until after she has recovered from her surgery. As she has done every week, she showed off and "performed" all her tricks. I joke that I feel like we are treating her like a puppy and not a baby. She has improved lifting her head and chest. We were told that Hailey has exceeded the expectations with everything going on with her heart. That definitely makes this mama proud. I hope she continues to do this good after her surgery.
My brain is in OCD overdrive. Those who know me understand....
pack 2 boys for 7 days...
clean the house...
pay bills...
keep up on the laundry...
making list upon list...
These are things I can control. We have done all we can for Hailey over the past three months. Soon it is out of our hands. The time is nearing where we are going to have to hand our precious little girl over to the surgeon, hospital staff and God. At that point, all we can do is pray and have faith. My mind wanders when I start to think about Hailey's surgery, what is going to happen, what can go wrong, how she is going to feel, etc. So, I'm going to try to follow Jason's advice and not let my mind get ahead of today. Today I have three beautiful children who need us in the present. A little girl just starting to giggle and loves rolling around, being talked to and cuddled with. A little boy who loves to play any kind of ball and loves to be read to. An older boy who loves hanging out with mom and dad and playing with his friends. They all three have smiles that can light up any room.
I thank God for today and pray for tomorrow.

The Countdown Now Begins

Posted Jul 8, 2011 6:21pm

Before heading out the door, I heard a commercial for Children's Hospital, where I heard as I have many, many times before "Cincinnati Children's Hospital ranked #3 in the country." To many people, that statistic will make them say "Oh, that's great" or "Oh, really". To me, this morning, all I could think was "Thank God because they are going to fix my baby". Jason and I proceeded downtown with Little Miss Hailey to meet the surgeon who has that enormous task on Tuesday. Our surgeon was running a little behind schedule so we enjoyed some quiet moments with Hailey. Well, maybe not too quiet. She has been quite vocal this week. She did finally let Dad hear her laugh. Hailey's surgeon is close to what I expected. We did look him up on the Children's website so we weren't surprised by his white/blue checked shirt with his red plaid bow-tie. He examined Hailey and commented that there was a lot of noise going on with her heart and lungs (which was not really any surprise to us). Dr. Manning started the discussion with a diagram of a healthy heart. He thoroughly discusses how a healthy heart operates and where Hailey's issues are and what happens as a result of that. He explained why most of Hailey's symptoms appeared to be respiratory issues. Due to the large VSD (ventricular septal defect), oxygenated blood moves back to with the blood that is headed to the lungs. As a result, her lungs are receiving more blood than they need or can handle. Her lungs are working harder to remove the extra blood. This is why she breathes harder and sounds congested. It is a good thing thought that she has these symptoms. It tells us that her lungs have not compensated for the extra blood and there should be no permanent lung damage. Dr. Manning explained that with Hailey's heart defect, it is like she is running in place every second of the day. How easy would it be to eat for you, if you were running in place the entire time?There were lots of "in most cases" and "there is a chance of". In the end though, we can't focus on all of that because not performing her surgery is not an option. She has to have this operation. Dr. Manning did say that the health of the baby going into the surgery does have an impact on how well the child recovers. He was impressed with Hailey's weight and seemed overall happy with how she is doing. After talking about the actual procedure, we asked questions about recovery. In time, Hailey's heart tissue will grow around and through the fabric that they are using to close the larger hole in her heart. Her heart should be as strong as anyone else's. He said that she will be stronger two weeks after surgery than she is today. We should see a difference in her breathing, eating and energy level by the time she comes home from the hospital. She can resume therapy withing a week or two of returning home. Hard to even imagine it! He said to anticipate a 5-7 day hospital stay.I know there are loads of details that I have forgotten or left out. It was a long 45 minute meeting! Monday we return to Children's for her pre-op "stuff". I'm positive she will not be happy with us because of the multiple blood draws. I think it might be a little hard on mom and dad too. Her surgery is at 7:30 a.m. on Tuesday.Thank you for all the prayers for Hailey! We greatly appreciate them. I will try to update Monday and through her surgery and hospital stay. Hailey is a very lucky girl to have so many people care so much for her. Well I'm off to listen to my sassy, energetic baby play on the floor with her brothers. Can't wait to see how much this little firecracker can accomplish with a strong heart!

In less than 16 hours....

Posted Jul 11, 2011 4:17pm

the wonderful staff at Cincinnati Children's Hospital will take our little Hailey back into surgery to repair a tiny heart that is working entirely too hard (but, boy, is it strong!). Jason, Hailey and I headed to the hospital this morning for what we knew would be a difficult day. Luckily it ended up only being a few hours. Hailey started by getting blood drawn. They were checking for MRSA, typing her blood for a transfusion, and a slew of other things. Hailey was blessed with a fabulous nurse that quickly found a vein and we barely heard a whimper out of our little peanut. We then headed to xray to get a peek at Hailey's lungs. She made the techs nervous that she was going to roll off the table. Our last stop was the surgery department for a quick examination, an EKG, meeting with the cardio-thoracic nurse practitioner and a meeting with the anethesiologist. We were quite surprised to find out that Hailey now weighs 13 lbs 1 oz...that is up from 10 lbs 4 oz from last month!!! Hailey's pulse ox numbers are still higher than expected for as hard as her heart is working. The nurse practitioner walked us through the process for tomorrow. When she got to the part where we will hand Hailey to the surgical team, the dam that had been holding back my tears started to give. She said that is where the tears generally start. It was not easy hearing the process....she is our baby. The anethesiologist was our last person to meet. She discussed how she will be monitoring Hailey and the complications that go with it.Hailey was so good through all the procedures this morning. She was all smile and coos. I joked with Jason that Hailey didn't get the memo that she was sick. Everyone seems so surprised at how well she is doing...her rolling, her lifting her head, etc....with her heart defect. She "looks" so healthy that it makes it even harder going into tomorrow, but in my heart I know that she isn't.Thank you for all the prayers you have said for Hailey and our family....and all the ones yet to be said. May God bless and watch over our little Hailey, her surgeon and all the hospital staff that are going to help fix Hailey's heart and bring our baby home better than ever!