Saturday, February 28, 2009
Friday, February 27, 2009
Wednesday, February 25, 2009
It all started around 11:30pm Sunday evening when we noticed blood in Cain’s diaper. Obviously, we were very worried about this and we were trying to decide if we should take Cain to the ER.We ended up calling the home health group that is currently coming to our house for their advice. We had a follow-up appointment scheduled with Cain’s cardiologist the following morning at 9:00am so the home health nurse suggested we wait for that appointment and not go to the ER, which would expose him to a number of various sick kids.
On Monday morning we went to the cardiologist for Cain’s follow-up appointment and discussed with Dr. Liske the blood we had noticed in Cain’s diapers. Dr. Liske had us change Cain’s formula that we are mixing with breast milk to a soy based formula to rule out any food allergies. During this appointment Cain had a chest x-ray and an EKG and Dr. Liske did inform us that the shunt put in during Cain’s surgery looked and sounded great.
Later in the day when we were finally home from the Dr’s appointment, Cain became VERY irritable and no matter how hard we tried to console him….nothing worked. Up until this point Cain had been a perfect baby with a perfect temperament so we started to feel worried. Cain’s irritability got worse which lead to an extremely long night. He also started having blood in his diaper again and this time it was significantly more than we had seen before. Throughout the evening, his heart rate would continue to spike, reaching as high as 193 beats per minute and his O2 saturation began trending downwards. We continued to monitor him throughout the night consoling him the best that we could and contacted his cardiologist first thing in the morning.
After contacting Cain’s cardiologist they told us to go ahead and bring Cain to their office. When we got to the office they told us to go downstairs for an abdominal x-ray (KUB). Afterwards, we went back upstairs so Dr. Liske could take another look at Cain. And then...before we knew it we were being re-admitted into the hospital again! They decided they want to keep Cain in the hospital a few days for observation. Because of the blood in the stool they wanted to stop his feeds and give him nutrition through an IV and start taking x-rays every few hours to watch for something called necrotizing enterocolitis (NEC). In some cases, cardiac babies will have difficulty getting adequate blood flow to their bowels and this will put additional stress on their digestive system. We were told that if they found he has NEC it can potentially be treated medically; however, if there are any perforations in Cain’s bowel then it will require surgery to repair any holes. So far, the x-rays are not showing signs of perforations so we pray nothing changes.
At one point we did become extremely concerned of Cain getting dehydrated as his continuous feed was discontinued at 8:00a.m. yesterday and it took until almost 4:00 in the afternoon for them to finally get an IV in him. In cardiac babies, specifically ones who have had a BT shunt like Cain, not receiving feeds for > 4 hours becomes a huge concern and potentially fatal. If they become too dehydrated, their shunt could clot sometimes causing unrecoverable consequences. Numerous nurses made attempts to get Cain’s IV line in, but for whatever reason, his veins were not cooperating. At one point they had indicated that they may have to put an IV in his head. Fortunately, they found a highly skilled nurse from the PICCU who was able to start a line on her first try on Cain’s right foot. Cain finally got some fluids in him and we are told by his doctors that his shunt still sounds good.
As of this morning, Cain seems to be feeling a little better and is acting more like himself. The x-ray this morning looks a little better than the one last night. They will continue to keep him hydrated, hold feedings, and observe.
Friday, February 20, 2009
Big A and I were talking about baby Cain today and I was trying to explain to her what the doctors were doing to help his heart. She kept asking questions re: how they got to his heart etc., and I told her that the doctor had to make a cut into his chest so that he could see his heart, but that Cain wouldn't feel any pain because he would be in a deep sleep. She thought about it for a minute and then said..."Will he get to see God?" and I said "who"....She said "the doctor." I thought about it for a minute and realized she was referring to what we tell her...that God lives in our hearts. I told her that the doctor will see God in Cain's heart (afterall, Cain's life is a miracle created by the Lord as all our children are) She then said..."mommy....I really want to see God too." I said "me too baby...me too."
Is that not the most precious thing you have ever heard? Kids thoughts are so precious and innocent. I can’t wait to have these precious conversations with Cain one day.
Thursday, February 19, 2009
One of the most important things that Cain’s pediatrician will follow is Cain’s weight. We were very pleased today to find out that he had gained 2 ounces since he left the hospital. He weighed 7lbs. today. He is still under his birth weight but he is gaining weight so that is great!
Cain also received the first part of his RSV vaccination today. Hopefully we will NEVER have to worry about RSV.
When we returned home from our visit to the pediatrician Sadie (our dog) was outside in our front yard! For those of you that don’t know, she is an inside dog. We let her out this morning and forgot to let her in before we left. This is the first time in 6 years that this has ever happened. Needless to say…I don’t think she was too happy with us!
We ended our day with giving Cain his 1st bath tonight. During his hospital stay he only received a few sponges baths in his bed. From what we could tell Cain seemed to like his bath. He was very cooperative and never cried. We hope all his baths are this easy! Wishful thinking...right?
Wednesday, February 18, 2009
Our drive home yesterday was full of so many emotions. We were thrilled to be taking Cain home but at the same time scared to death. His last wires to monitor him were removed just hours before we left the hospital.
I am hoping now that we are at home I will be able to reply to the numerous emails I have received over the past few weeks. I thank you all for your encouraging words. This experience has changed my life forever. I feel blessed to have so many people praying for our family. Please continue to keep our little guy in your prayers. Before we left the hospital, we were reminded by our cardiologist that 5% of these babies do not make it to their 2nd surgery. Obviously, the next several months are going to continue to be quite stressful for us. If all goes as planned, Cain will have a heart cath around 3 months of age which will require a night or two stay in the hospital and his 2nd surgery should be around 4 months of age. That time will be here way too soon!
I plan to continue blogging as much as I can. There will be plenty to blog about. Even though we finally made it home, we already have numerous Dr’s appointments scheduled. As a matter of fact, our first home heath visit was today. Cain has his first appointment with his new pediatrician tomorrow morning, another home health visit Friday, a follow-up appointment with his cardiologist on Monday, home health coming to the house on Tuesday and Friday of next week and an appointment with his surgeon next Thursday. He plans to keep us very busy!
Now here is what you’ve been waiting for…pictures of us taking Cain home for the 1st time!
(patiently waiting to be discharged)
(Cain had to be weighed one last time)
Tuesday, February 17, 2009
(I finally have all my leads (wires) off and ready for mom to dress me so I can go to my new home)
Saturday, February 14, 2009
Today had to be my best Valentine’s Day ever! I was able to spend the entire day with my two favorite men…my husband and my new baby boy. They make me feel like the luckiest girl in the world. My day started off with a rose and a card from the both of them. I can’t imagine loving Cain any more than I already do and watching Brad take care of Cain makes me love him more and more every day!
Overall today was a good day for Cain. I will update you more tomorrow about his weekend.
I hope each of you had a wonderful Valentine’s Day!
I know you may be wondering the outcome of Cain’s kidney ultrasound. Well, we have good news to report! The Nephrologist came by yesterday afternoon and informed us that his ultrasound came back normal and everything looked good. He will probably be put back on BP medicine tomorrow if his BUN and Creatinine levels stabilize.
During the night, Cain had a chest x-ray taken and we were told today that he needed to have another x-ray because they thought he may have a pocket of air in his lungs. The Dr’s did not seem overly concerned of this finding because Cain looked so good today and his SAT’s have been staying within normal ranges today. But they did want to perform a 2nd x-ray to rule out any air pockets in his lungs. Thankfully, the 2nd x-ray looked just fine.
Another part of Cain’s busy day today was that he had his first hearing screen performed. Cain received a certificate that he passed the screening but will need a follow-up at 6 months of age. We were told NICU babies are at a higher risk for hearing loss so these babies have regular follow-ups for the first few years of their life.
Our biggest hurdle to now overcome seems to be Cain’s feedings. He is still taking very little during his bottle feedings. Actually, the most he has taken at one time is 26 cc’s. We have a therapist working with us to help with his feeds. Unfortunately, we have a very strong feeling that Cain will be going home with his feeding tube. It’s a lot to learn and quite stressful for us but we will be able to handle the feeding tube if it is what Cain needs. There are so many steps involved with the feeding tube such as mixing breast milk with formula (to increase caloric intake), administering his meds, flushing the line, listening to Cain’s stomach with a stethoscope to make sure the tube is still in the correct placement.
Most importantly, our biggest and best news of the day is that Cain’s last chest tube was removed. This is a really big step in getting us closer to being able to go home. Having the chest tube removed will also make Cain much more comfortable. The chest tube was stitched in to Cain’s abdomen and could be very painful at times. Luckily, he will not have to deal with this anymore.
Wednesday, February 11, 2009
Another unexpected "event" of the day was his feeding tube came out of his small intestine and up to his stomach. Because of this the tube had to be removed and he had to have x-rays done to rule out any aspiration. Thankfully, the results from the x-ray came back just fine. Of course they then had to replace the feeding tube again.
We were able to attempt feeding Cain from a bottle. We tried twice but both times he couldn't keep the milk down.
(1st attempt at bottle feeding)
His originally noted "wet lungs" as seen on his chest x-ray has improved, but is still present.
Other concerns include renal markers (BUN, creatinine) were out of range and therefore his blood pressure medication was stopped temporarily. They have consulted a nephrologist for a kidney ultrasound. This is sometimes expected in cases like Cain's and is just a precautionary measure at this point. We should hear the results from the kidney ultrasound tomorrow.
(Cain's new room on the 6th floor. You can see our bed in the background. It will be nice to be home in our bed again after sleeping on this for the next several nights/weeks.)
Today was a much better day. Cain's mood improved and that just makes everyone around him feel better in general. He was able to come back off of oxygen and is breathing room air again. We had a busy day of learning: infant CPR, how to insert a NG (nasogastric) feeding tube, giving him his medicines via this feeding tube, giving him shots of another type of medicine (to prevent clotting), cleaning his incision, mixing breast milk with additives for higher caloric intake, and other important necessary information needed to raise a "cardiac" baby. Needless to say...all 3 of us are pooped.
(night...night...cozy and ready for a good nights sleep)
Monday, February 9, 2009
Since this week is CHD Awareness Week I thought I would share this video with you. This is Mark O'Shea's video for the song "Look at You Now!", filmed at the Vanderbilt Children's Hospital Pediatric Cardiology Unit. Who knows, maybe Cain will be in a video like this one day.
Saturday, February 7, 2009
On that note, we have GREAT news to report today. Cain's breathing tube was removed today around 10:30 a.m. and he is finally breathing on his own. It is such a relief to see him without the breathing tube. And so much fun to finally see his whole face. We still haven't heard him cry so it will be a great day when we hear that first cry. We are told it may take a few days for his vocal chords to get used to not having the tube down his throat. Once we hear that cry several times I'm sure we will be looking for a "mute" button! Other great news from today is that he also had one of his chest tubes removed, his foley catheter removed, both Brad and I were finally able to hold him again, he was moved into a "big boy" crib, and he had a feeding tube inserted so he could start receiving my colostrum.
(Look at me! No more breathing tube. Yipee)
(Daddy holding me for the first time after surgery)
(Mommy holding me for the first time after surgery)
(Tucked in for the night in my "big boy" bed)
Cain's not the only one "moving along". Today was the day the Grandparents had to move along and get back to Louisiana. Brad, Cain and I hated to see them leave. My parents, Brad's mom and his step-sister have all been here this week. They were a huge help and wonderful support to us while they were here. We will miss them while they are gone but I'm sure they will all be back soon.
(picture with my parents before they had to go back to Louisiana. See you soon MiMi and Granddaddy)
This is the letter we had waiting on us when we returned to see Cain after dinner last night. I thought each of you would enjoy reading it as much as we did. Overall, Friday turned out to be a good day. The following is some of the good news we received yesterday.
- Cain's oxygen saturations were finally much better. They started going up Thursday afternoon and have stayed where they need to be.
- They have been slowly decreasing his BP med's. Cain has been on diuretics to get rid of fluids. This has been working well. Actually, it has been working so well that as of midnight last night the nurse was going to call in to the Dr. to see about decreasing the diuretics so Cain doesn't become dehydrated.
- They may get to remove the 3 drainage tubes from his chest today.
- Yesterday evening they had been weaning the ventilator down to see if he could take breaths on his own.
- They started doing trial C-PAP tests during the night. This helps to see if he can breathe on his own. And they have talked about extubating him today depending on how he does during C-PAP tests which means they would take the ventilator out!!!
I hope to have a lot to report on by the end of the day today! It would be so wonderful to finally see him breathing on his on. Also, we have not seen him with out tape across his face (to hold in the ventilator tube) since he was born, so it will be nice to get a good look at him. Of course, if he's not ready we don't want to rush anything, but today may unfold to be a pretty good day. As Dr. Liske said best in his note...."I am expecting big things of him!"
Friday, February 6, 2009
I know our last blog's pictures are not the easiest pictures to look at. So to let you know we are staying positive and upbeat during this challenging time I wanted to include the fun times we are having with Cain during his stay in the hospital. Cain may not be having such a great time but Cain's mustache certainly made us and the nurses laugh.
Thanks to the help of Cain's Daddy and Robin, his nurse, Cain received a handsome mustache the day before his surgery. Cain's Daddy kept saying that the tape above Cain's mouth needed to have a mustache drawn on it. It just so happened that his nurse carries around a black marker. And since both his nurse and his daddy have a great sense of humor; his Daddy went to work!
Of course, Cain told his Daddy that he better start sleeping with one eye open. Who knows when he will wake up with artwork on his face. Daddy better keep the makers away from Cain to avoid payback!
Thursday, February 5, 2009
Although, Cain's surgery was very successful, the excitement of that news burned off quickly. He is not yet a healthy baby and there are plenty of challenges to overcome. The first 48 - 72 hours after his surgery is critical for his recovery and ultimately his survival. The medical team will work to ensure that he is stable. He will hold a lot of fluids and the doctors will be working with him to drain through three drains tubes that are inserted in his thoracic cavity, and diuretics. Naturally his kidneys are also expected to assist with this process as Cain's body expels urine. It is expected that he will have significant swelling from the additional fluid, but he doesn't seem to look to "puffy" at the moment. Despite, his "looks fantastic" reports from the Dr.'s this am, we are currently concerned with is cerebral blood flow as his O2 saturations tend to be considerably lower than needed. We have been assured that adjustments have been made to ensure that all other vital measurements are where they need to be so the rest is up to Cain. It is uncertain what effect, if any, this will have on Cain, but it worries us never the less. The doctors will continue to follow it closely. It's just another challenge in little man's life, which we will remain optimistic that he will overcome as well.
(resting well after surgery)
(My scar that I'll think is "cool" one day)
(I can't sneak anything by my parents...I have too many machines keeping a watch on me)
(All my computers can't even fit in one picture)
Wednesday, February 4, 2009
Cain, Catherine and I would like to thank everyone for their support and prayers. We are clearly not out of the woods yet, but we have overcome the first major obstacle on Cain's long journey. We will continue to keep you posted on Cain's progress. Please keep the little guy in your thoughts and prayers.
Both Brad and I stayed at the hospital with Cain throughout the night. We both got a little nap in from 3:00am-4:45am. We had tried to go to sleep an hour earlier but Cain finally decided he would open his eyes right when we were getting ready to get some rest. Cain really hasn't opened his eyes much since his birth so this was huge for us. How could we get rest now! We are so glad we stayed the night with him because we both were able to spend most of the evening and morning with him in our lap.
The hardest part of our day so far was this morning when we had to turn him over to the group who would be taking him to surgery.
The first stage of his surgical procedures is called the Norwood procedure and this is the surgery that will be taking place today. I have attempted to explain what will occur in today's procedure; however, I am unsure in what particular order these events may take place. Dr. Bichell will attempt to combine the two main arteries (pulmonary and aorta) that lead from the heart to the rest of the body. These arteries are currently transposed in Cain's heart (aorta is where pulmonary artery should be and vice-versa). This newly developed, combined-larger artery is what will provide blood flow to the rest of the body from the heart's ventricle chamber. The large ventricle septal defect will not be repaired as this will actually provide one large single ventricle that will pump blood through this newly developed artery. The ventricle wall defect may also be widened to ensure a larger chamber for pumping. Although the majority of the workload will come from the healthy left ventricle, the hypoplastic right ventricle will provide whatever little help it can. The atrial septal defect will also not be repaired, will rather be re-sized to also make it one large atrial chamber. Additionally, a Blalock-Taussig shunt (BT shunt for short) is a gortex pulmonary shunt that will be placed to provide blood flow to the lungs. This procedure will require Cain to have his body cooled down considerably and he will be attached to a cardio-pulmonary bypass machine, which will effectively continue to provide blood flow to his organs during this procedure.
We have been told we will receive updates approximately every hour to hour and a half and our plan is to keep you updated to the progress reports we receive. The following is what we know thus far:
8:00 am-was taken by anesthesia group to the OR
9:17 am - informed that Cain's first incision was made around 9:10 and he was tolerating the procedure well
10:43 am - informed that Cain continues to tolerate the procedure well and is currently doing fine. No unforeseen issues have yet to arise.
11:54 am - informed that Cain has tolerated procedure well so far. However, they are beginning to warm his body up to take him off of the bypass machine. In doing this, they will look for places that bleeding might have occurred and address them as needed. This is to be expected and is not out of the norm. Additionally, they will begin adding drainage tubes that will be connected to his thoracic cavity that will help reduce the swelling/edema that is expected to occur after the surgery.
We will provide additional updates as time permits. Thanks again for all the well wishes and prayers we have received throughout the day.
Well today, thanks to our wonderful nurse Robin, we finally had the chance to hold our baby boy for the very first time. It is a feeling we will NEVER forget!
Holding Cain was just what we needed since it was the day before his surgery. We knew this day would be filled with emotions but we never expected that emotion to be so much joy! You couldn't wipe a smile off our faces after we both had the chance to hold him.
And of course we have pictures to share our special moment with each of you.
(moment when I held Cain for the first time)
(Mommy holding Cain)
(Daddy holding Cain for the first time)
(The Clinkscales Family)
Tuesday, February 3, 2009
I hope to have a few more blogs posted by the end of the day or during the day tomorrow.
Cain's surgery is still scheduled for all day tomorrow. While I'm waiting I should have time to write several posts about the last several days and posts for you to stay up to date of the feedback we receive during his surgery.
As always, thank you all for all your support and prayers. So far, they seem to be working!