If you read the last post, you know we've been battling a stomach flu around here. When Monday morning rolled around, I was pretty sick, so my wonderful husband took the day off work. He was starting to feel bad himself, but he took Eli to Evansville for the echo and appointment with Dr. Kumbar.
Eli did well during the echo. They only had to stop once because of fussing (I didn't ask, but I assumed it was Eli fussing and not Bryan). Bryan said it helped that Eli watched Elmo's World while it was being done...thank goodness for puppets :)
Once at the appointment, an EKG was done. That showed his rhythm is still junctional. At this point, we don't expect his rhythm to change on its own, but we just keep hoping. In a way, I'm happy to know that it's consistently been junctional and isn't changing from one rhythm to another. That would be very rough on him.
Since Eli has tolerated the junctional rhythm so well, Dr. Kumbar wants to restart him on Captopril. That's a medicine to help increase his heart function. He took it regularly after his first heart surgery, but stopped after the second one because of the rhythm. He's done well since being off of it, but it's time for him to resume. He needs the extra help.
Dr. Kumbar said there were a couple things to watch on the echo, but these are things that have been seen previously and we were already watching. One of those things is his mitral valve (valve between the left atrium and left ventricle) is leaking. Again, this is something we already knew and will continue to monitor.
The big news of the day was his oxygen saturation....it was 94%! I don't know if it's ever been that high! He usually hovers in the low to mid 80s. Obviously, he wasn't sporting any bluish lips or fingers when that level was taken!
Overall, she's very pleased and Eli will go back to see Dr. Steinberg in June. He's the one who will ultimately make the decision about when to proceed with a pacemaker and third surgery (Fontane completion).
I've never missed any of Eli's doctor appointments or tests before. Even though he was with his daddy, I hated not being with them and getting to hear the news myself. Some of that is the nurse in me, but mostly it's the mommy.
I think the four of us are on the mend. Bryan stayed home today too. He was feeling pretty bad by the time they got back from Evansville. His stomach is better tonight, but just feels dizzy at times and has no energy. That pretty much sums it up for all of us. We can eat, but don't really want to (that's NOT normal for any of us!).
Eli goes to Dr. Amy's this Friday for his Synagis injection. If you're not familiar with that, it's a vaccination against RSV (Respiratory Syncytial Virus), a virus that is very dangerous for babies but especially ones who were premature or have other health issues. It's a very expensive medicine, but well worth it when you compare it to the cost of a hospitalization or the risk of death because of RSV. Last month we paid $4500 for his monthly dose (he's big enough now that he requires two vials...yea?). This month, we've met his deductible and only had to pay $50! Even better news is that he's approved for 3 more this season. We thought he would only be approved through this month, so we're relieved.
Thanks for all the prayers and support since my last post. We know everyone is dealing with a lot of issues of their own, and the fact that people continue reaching out to us is very touching. I usually end these with a request for prayers, but this time I want you to know that I'm praying for you. My prayer is one of thanks for caring about our family, for peace in your own lives, and that any struggles you're having are relieved. Again, thanks for reading.
Wednesday, February 29, 2012
Sunday, February 26, 2012
Stomach Bugs and Echos
This will just be a quick update and request. Our house is sickly right now, Eli's been vomiting off and on for a few days and having loose stools. I was supposed to work last night, but was put on call. That turned out to be a blessing in disguise because Zachary woke up vomiting at 12:45am. He kept that up through the night and I started early this morning. We think the boys are getting better, but I'm working on getting to the "nothing happening, just feel lousy" stage. Bryan is taking good care of us and doing a pretty good job! Hopefully he can avoid whatever we've had.
In addition to all that excitement, Eli has an appointment with his cardiologist in Evansville tomorrow. He will have an echo before the appointment. I always start to get nervous when he has one approaching. I've been seeing little signs that tell me his endurance may not be what it was before. His activity level doesn't seem to be what it was a few weeks ago. At times, I think he's sleeping more. Like I said, I usually do this before he has an echo. This time, however, his physical therapist and speech therapist have had minor concerns too. It makes me feel better that I'm not the only one seeing things, but it concerns me that others have concerns as well. I'm hoping that maybe he's just not been feeling well for a while and will start to feel better after we get over this round of illness in our house.
Overall, he's still playing, being his usual happy self, and eating pretty well. We just think we see some vague signs that may indicate things aren't going as well as they had been.
With Eli, it's so hard to tell what's going on. He had a rough January with ear infections, colds & tonsillitis, so maybe he's just having trouble getting over that. Maybe it's just his body "preparing" for this illness. Maybe he's having trouble adjusting to the milk we've added to his diet. Maybe his heart function is decreasing. Maybe he found an activity level he's comfortable with and just doesn't challenge it. Maybe, maybe, maybe.
So, that's our update. Now, here's the requst: Please pray for all of us to get over this stomach bug. Please pray for Eli's echo to go smoothly (he's developed a severe dislike of medical personnel and their equipment, our last echo in Evansville should've been about 45 minutes but was over 3 hours). Please pray for good results from the echo.
Again, thanks for reading and caring about our family.
In addition to all that excitement, Eli has an appointment with his cardiologist in Evansville tomorrow. He will have an echo before the appointment. I always start to get nervous when he has one approaching. I've been seeing little signs that tell me his endurance may not be what it was before. His activity level doesn't seem to be what it was a few weeks ago. At times, I think he's sleeping more. Like I said, I usually do this before he has an echo. This time, however, his physical therapist and speech therapist have had minor concerns too. It makes me feel better that I'm not the only one seeing things, but it concerns me that others have concerns as well. I'm hoping that maybe he's just not been feeling well for a while and will start to feel better after we get over this round of illness in our house.
Overall, he's still playing, being his usual happy self, and eating pretty well. We just think we see some vague signs that may indicate things aren't going as well as they had been.
With Eli, it's so hard to tell what's going on. He had a rough January with ear infections, colds & tonsillitis, so maybe he's just having trouble getting over that. Maybe it's just his body "preparing" for this illness. Maybe he's having trouble adjusting to the milk we've added to his diet. Maybe his heart function is decreasing. Maybe he found an activity level he's comfortable with and just doesn't challenge it. Maybe, maybe, maybe.
So, that's our update. Now, here's the requst: Please pray for all of us to get over this stomach bug. Please pray for Eli's echo to go smoothly (he's developed a severe dislike of medical personnel and their equipment, our last echo in Evansville should've been about 45 minutes but was over 3 hours). Please pray for good results from the echo.
Again, thanks for reading and caring about our family.
Friday, February 17, 2012
March of Dimes
We have been asked to be the 2012 March of Dimes Ambassador Family for Daviess County! We are so excited to be a small part of this very important organization.
Most people are aware of the tremendous work the March of Dimes does in relation to premature births, but they are also very active in funding research to treat and prevent birth defects. Eli's future is dependent on medical advances. After his third heart surgery, we wait. The goal of his three surgeries is to make his heart as functional as possible for as long as possible. That could be a few months, a few years, or a decade or
improve the health of babies by
preventing birth defects, premature birth, and infant mortality.
This has quickly become something that Bryan and I feel strongly about, and we are privileged to be involved. Until we became involved with the March of Dimes, we didn't realize how instrumental they are in birth defect research. If we, as a family who's been deeply affected by heart defects, weren't fully aware of the full capacity of the March of Dimes, then what does the general population know?
We started a team and called it "Eli's MVPs." We are currently consumed with planning fundraisers to reach (and hopefully surpass!) our goal. If you have any fundraising suggestions, please let us know. We will let you know about different events as we plan them. The conclusion of our 2012 fundraising will be the March for Babies Walk in Daviess County. It is scheduled for April 14 --- that's only 57 days from today!!!
Saturday, February 11, 2012
Thinking About My Dad
My dad died eight years ago today. I'm still not used to saying that he's gone, but at the same time it seems like it's been longer than that. Although I miss him every single day, the hardest days for me were the days Zachary & Eli were born. I would love to see him hold them & do all the grandparent things. We're sooo lucky to still have my mom & Bryan's parents, but the little girl in me wants my dad there too. I know my dad sees the boys, but I want to see him enjoy them.
Today also makes me think back to one year ago; Eli was scheduled to have his G-tube surgically placed. When they set the date for 02/11/11 it didn't bother me at first, but as the day got closer I got more nervous. It's always scary to have your child under anesthesia, but especially so for one with such a complex and stressed heart as Eli's. He was just a month out from major heart surgery, he was only nine pounds, he was only 15 weeks old, and his surgery was scheduled for the seventh anniversary of my dad's death. I just made myself view it as a sign that Dad would be closer to him and help protect him through the surgery.
Then, as luck would have it, things changed. The two doctors who were to do Eli's surgery got pulled into two emergency cases. They wouldn't be available to work on Eli until after 5 that day, which was not something they wanted to do. Eli's surgery was pretty routine, but he is not, so they wanted to do it early in the day just in case something did happen. He was rescheduled for Monday morning, Valentine's Day. I've never been so relieved for someone else to have an emergency (I was told both emergent cases did fine). In my heart, I knew Eli would be fine from this surgery, but the dark shadows in the back of my mind wouldn't go away. I couldn't bear to lose them both on the same day. Fortunately, everything went well with the G-tube placement and we have absolutely no regrets about doing it. I'm sorry that he needs it, but it has been a major relief and assistance to have it.
Just some random memories about Dad:
It may sound strange, but Dad's illness and death really helped prepare me to deal with Eli's condition. It taught me to "let go and let God," that He is guiding me even when I feel like I've fallen into an emotional black hole, and that despite what happens there's always another reason to keep going.
No matter how old we are, parents have their ways of teaching us lessons...in life and in death.
Today also makes me think back to one year ago; Eli was scheduled to have his G-tube surgically placed. When they set the date for 02/11/11 it didn't bother me at first, but as the day got closer I got more nervous. It's always scary to have your child under anesthesia, but especially so for one with such a complex and stressed heart as Eli's. He was just a month out from major heart surgery, he was only nine pounds, he was only 15 weeks old, and his surgery was scheduled for the seventh anniversary of my dad's death. I just made myself view it as a sign that Dad would be closer to him and help protect him through the surgery.
Then, as luck would have it, things changed. The two doctors who were to do Eli's surgery got pulled into two emergency cases. They wouldn't be available to work on Eli until after 5 that day, which was not something they wanted to do. Eli's surgery was pretty routine, but he is not, so they wanted to do it early in the day just in case something did happen. He was rescheduled for Monday morning, Valentine's Day. I've never been so relieved for someone else to have an emergency (I was told both emergent cases did fine). In my heart, I knew Eli would be fine from this surgery, but the dark shadows in the back of my mind wouldn't go away. I couldn't bear to lose them both on the same day. Fortunately, everything went well with the G-tube placement and we have absolutely no regrets about doing it. I'm sorry that he needs it, but it has been a major relief and assistance to have it.
Just some random memories about Dad:
- I believed anything he said, against my better judgment: I went to a hardware store to buy a left-handed-monkey wrench because he asked for one, I believed he was a dog in a former life, and that he chopped every piece of wood in the woodpile at his old homeplace 30 years after he left there.
- four-wheeling at Grandma Dot's through the strip mines
- picking out my first pair of glasses with him: I have no sense of style, especially as a fifth-grader and those glasses proved it. They were ugly blue snakeskin type frames that were too small and with lenses that tinted in the sun. As soon as I saw my mom's face the first time I wore them I knew they were wrong, but I couldn't have new ones for at least a year. The second pair was no better than the first!
- he wore a cowboy hat and boots almost all the time. Not a lot of guys can pull that off, but he was an authentic "don't give a s*#t" kind of guy so it worked
It may sound strange, but Dad's illness and death really helped prepare me to deal with Eli's condition. It taught me to "let go and let God," that He is guiding me even when I feel like I've fallen into an emotional black hole, and that despite what happens there's always another reason to keep going.
No matter how old we are, parents have their ways of teaching us lessons...in life and in death.
Glen Michael Norris
02/05/48 - 02/11/04
♥ Love you and miss you, Dad! ♥
Friday, January 20, 2012
GI Appointment
Yesterday (01/19) Bryan & I took Eli to Indy. There was some snow on the ground and it was actively snowing when we left town so I got my snow fix for a little while! Eli had an appointment with Dr. Maisel, his gastroenterologist. She's the one who placed his feeding tube. He weighed 20lbs 13 oz and was measured at 30 inches long. Each of those are in the 10th percentile for his age. We really haven't followed the growth chart for Eli the way we did with Zachary; it was too depressing. For a while, both our boys were off their respective charts, but in different directions. Now Eli is on it and consistently gaining an appropriate amount of weight!
Dr. Maisel was very pleased with his size and his activity level. Our next GI goal with him is to get him off his special formula and onto regular milk products. If you don't remember, he was diagnosed with a milk protein intolerance at 3 months old. We took him off breast milk and started using Alimentum, which has the milk protein already broken down. He's been on that ever since February 2011. Most kids with a milk protein intolerance grow out of it by age one, so we're definitely in the "safe zone" to start trying. He has had no problems with food that has milk cooked in it (scrambled eggs, macaroni, cookies, cake, etc), but other than putting some breast milk in his formula, he hasn't tried milk. She recommended we start replacing one of his daily bottles with a bottle of PediaSure. As he tolerates that, we increase the number of PediaSure bottles and decrease the Alimentum bottles. We can also use a little more of my frozen breast milk. So far today he's almost finished a PediaSure (vanilla flavor, we have chocolate too!). We'll keep that up and keep a watchful eye on his stools since his symptom of not tolerating milk is blood in the stool.
She also indicated that, although now is not the time, he will come off the Prilosec at some point. That completely surprised me. I never really considered that he wouldn't need that all his life since he's going to be on other meds long-term. My surprise seemed to surprise her. Right now, Prilosec is his only prescription medicine, the other two are over the counter. We know he will go back on some type of cardiac medicine to help his heart function, but he isn't for now because his junctional rhythm lowers his heart rate and a side effect of those medicines is a lowered heart rate (the combination would be dangerously low). She, along with Dr. Amy & our speech therapist, recommend a dietary consult. We had one set up prior to Christmas, but with all the illnesses we had we decided to cancel & reschedule later in Jan. I need to get that set up so we can have a local resource for helping us adjust from formula to milk products.
She also wanted some blood work done to make sure his body is absorbing all the nutrients he requires. She asked if he'll be under anesthesia for anything in the next month or so. Dr. Maisel is very considerate and said that she could wait for labs to be drawn if he's going to be under. Fortunately he shouldn't have anything like that until his Fontane completion, so unfortunately, he had blood drawn yesterday. Luckily, the lab tech was good and only had to stick him once. He screamed at us and tried to get away, but it actually went better than I thought.
Before the appointment with Dr. Maisel we took a trip to the PICU and got to see some familiar faces. Eli was very good and even let a couple of the nurses hold him. I think it's good for them to see how well he's doing, partly due to their skilled work! I wish I had gotten one of him with Dr. Maisel. We met another of Eli's doctors in the hallway, Dr. Heather Bricker. She was the hospitalist in charge of his care when he was diagnosed with the milk protein intolerance. She hadn't seen him since last February and was very excited to hear good reports.
After the appointment (and a 3:00 lunch at Fazoli's) we went to a party store so I could buy things for my sister-in-law's baby shower. I'm only a LITTLE BIT EXCITED about my little niece's upcoming arrival :) I hope she can keep up with my monsters (I mean boys).
Since Bryan took the day off for the appointment, he was able to take Zachary to school. Zachary enjoyed that, but still did his "shy" thing right as they were walking in the classroom. He loves school, his teacher, his friends, but always gets a little shy right as we're entering the classroom. He'll hang up his coat & start playing just fine (I even have to ask for a bye-bye!), but he doesn't like to walk into a roomful of people.
Speaking of Zachary, he's playing Biddy Ball with the YMCA this year. They've had two practices so far and have one more before their first game. I watched the last practice and am eagerly awaiting an actual game! To say the least, it should be very entertaining. Adding to the entertainment, Zachary's team coach is Bryan. I don't know who I'll enjoy watching more...four year olds "playing" basketball or Bryan's frustration! Team pictures were Wednesday night. We chose a package with trading cards so we had to include Z's height and weight. He's 53 lbs and 46 inches tall. He's two inches from the adult rides at most amusement parks (not that he'll ride them!).
Time for me to go fix lunch & get ready for therapy. My wrist is doing very well, just gets stiff if I don't do my exercises. Thanks for checking in!
Dr. Maisel was very pleased with his size and his activity level. Our next GI goal with him is to get him off his special formula and onto regular milk products. If you don't remember, he was diagnosed with a milk protein intolerance at 3 months old. We took him off breast milk and started using Alimentum, which has the milk protein already broken down. He's been on that ever since February 2011. Most kids with a milk protein intolerance grow out of it by age one, so we're definitely in the "safe zone" to start trying. He has had no problems with food that has milk cooked in it (scrambled eggs, macaroni, cookies, cake, etc), but other than putting some breast milk in his formula, he hasn't tried milk. She recommended we start replacing one of his daily bottles with a bottle of PediaSure. As he tolerates that, we increase the number of PediaSure bottles and decrease the Alimentum bottles. We can also use a little more of my frozen breast milk. So far today he's almost finished a PediaSure (vanilla flavor, we have chocolate too!). We'll keep that up and keep a watchful eye on his stools since his symptom of not tolerating milk is blood in the stool.
She also indicated that, although now is not the time, he will come off the Prilosec at some point. That completely surprised me. I never really considered that he wouldn't need that all his life since he's going to be on other meds long-term. My surprise seemed to surprise her. Right now, Prilosec is his only prescription medicine, the other two are over the counter. We know he will go back on some type of cardiac medicine to help his heart function, but he isn't for now because his junctional rhythm lowers his heart rate and a side effect of those medicines is a lowered heart rate (the combination would be dangerously low). She, along with Dr. Amy & our speech therapist, recommend a dietary consult. We had one set up prior to Christmas, but with all the illnesses we had we decided to cancel & reschedule later in Jan. I need to get that set up so we can have a local resource for helping us adjust from formula to milk products.
She also wanted some blood work done to make sure his body is absorbing all the nutrients he requires. She asked if he'll be under anesthesia for anything in the next month or so. Dr. Maisel is very considerate and said that she could wait for labs to be drawn if he's going to be under. Fortunately he shouldn't have anything like that until his Fontane completion, so unfortunately, he had blood drawn yesterday. Luckily, the lab tech was good and only had to stick him once. He screamed at us and tried to get away, but it actually went better than I thought.
Eli & Mommy waiting for the lab tech to draw his blood. He loved the moveable arms on the chair (until we used one to help hold his legs down).
Before the appointment with Dr. Maisel we took a trip to the PICU and got to see some familiar faces. Eli was very good and even let a couple of the nurses hold him. I think it's good for them to see how well he's doing, partly due to their skilled work! I wish I had gotten one of him with Dr. Maisel. We met another of Eli's doctors in the hallway, Dr. Heather Bricker. She was the hospitalist in charge of his care when he was diagnosed with the milk protein intolerance. She hadn't seen him since last February and was very excited to hear good reports.
Three of our favorites, Brittni, Nicole & Katie. They were so glad to see him.
Nicole LOVED Eli's cheeks. He was pretty good about it (I think he's used to people's fascination with those things), but he was getting tired!
Brittni is our all-time favorite nurse at PMCH. There are several great ones, but she's been with us through a lot of his major events. She was the nurse who admitted him to PMCH back in January when he got off the helicopter before Mommy & Daddy could get there. She was also his nurse the day of his first surgery and she was still on duty when he was brought back from the OR. We've had her several times, and it seems like whenever something big is happening she's there for us!
After the appointment (and a 3:00 lunch at Fazoli's) we went to a party store so I could buy things for my sister-in-law's baby shower. I'm only a LITTLE BIT EXCITED about my little niece's upcoming arrival :) I hope she can keep up with my monsters (I mean boys).
Since Bryan took the day off for the appointment, he was able to take Zachary to school. Zachary enjoyed that, but still did his "shy" thing right as they were walking in the classroom. He loves school, his teacher, his friends, but always gets a little shy right as we're entering the classroom. He'll hang up his coat & start playing just fine (I even have to ask for a bye-bye!), but he doesn't like to walk into a roomful of people.
Speaking of Zachary, he's playing Biddy Ball with the YMCA this year. They've had two practices so far and have one more before their first game. I watched the last practice and am eagerly awaiting an actual game! To say the least, it should be very entertaining. Adding to the entertainment, Zachary's team coach is Bryan. I don't know who I'll enjoy watching more...four year olds "playing" basketball or Bryan's frustration! Team pictures were Wednesday night. We chose a package with trading cards so we had to include Z's height and weight. He's 53 lbs and 46 inches tall. He's two inches from the adult rides at most amusement parks (not that he'll ride them!).
Time for me to go fix lunch & get ready for therapy. My wrist is doing very well, just gets stiff if I don't do my exercises. Thanks for checking in!
Tuesday, January 10, 2012
Emotional Time
What a range of emotions today! On the non-serious side, I had therapy this morning and then went to Evansville. My stitches were taken out and I got a good report. It feels soooo good to have those things out, my wrist had been itching like crazy. I'm much happier now :) I even got to have a grown up lunch with a friend I hadn't seen in a long time. What a treat for me!
Both boys are almost back to normal. They both still have runny noses and Eli has a cough, but they're both so much better. Zachary finally got to go to school for the first time since before Christmas. He took a long nap this afternoon, not used to getting up early anymore I guess!
Eli is a master at crawling & pulling up to his feet. He's really quite the character. He loves making us laugh and is full of surprises. The other day he climbed the stairs (9 steps!!!) without any problems. The farthest he'd gone before was two steps, so we didn't expect nine. His appetite is getting much better too. Hopefully he'll be over the last of his cold in the next few days.
The past two nights have been very emotional. Eli's heart surgery was one year ago today, Jan 10 (although it's almost midnight so it'll probably be the 11th by the time I post this). Putting him to bed last night was really hard. I kept thinking back to the night before his surgery. Bryan & I didn't sleep at all. We were so scared he wouldn't make it through the operation; the surgeon said there was a 30% chance he would not.
Normally if you hear there's a 70% chance of something, it's pretty good odds. A farmer loves a 70% chance of rain in the summer. Anyone would love a 70% chance of winning the lottery. Most people can appreciate a 70% chance of snow at Christmas. A 70% chance your 11 week old son will live is not good enough. It was the absolute worst night of our lives.
We were also told to expect that he would be on a heart-lung bypass machine IF he made it through surgery. Our baby made it out of the operating room and was NOT on the machine. His chest incision had been left open for several different reasons. It was covered with a clear dressing. When we finally got to see him, we just stared at his little chest, rhythmically rising & falling, rising & falling, rising & falling. Even with the incision, it was the most beautiful sight.
I couldn't sleep tonight. I keep reliving all those events and emotions of last January. Last night, I cried a lot while putting him to bed. It was hard to let go of him, even for the night. I lost count of how many times I crept back in to watch him sleep. The number of tears I shed last night is a small fraction of the tears I shed 365 nights ago. Tonight, I keep going back to check him, but I'm not as overwhelmed with emotion as I was last night. Tonight I can remember more of the happier moments, I'm not as focused on the fear. The future is still scary, but even if I could look into a crystal ball, I wouldn't do it. We just have to take things as they come and trust in His plan. I knew that before last January, but I REALLY believe it now.
Last night, while I rocked Eli & cried, he just stared at me with those big, brown eyes. His little hand touched the tears on my cheek and he smiled at me. He & I have had many bonding moments over the past two years (yes, almost two years; he lived in my belly for 9 months!). Some were the normal mommy & newborn moments. Too many have been in the hospital setting, but last night was one of the most special so far: As I was giving thanks for Every Little Beat of his heart, I realized that you just haven't lived until your baby plays with your tears of gratitude.
Both boys are almost back to normal. They both still have runny noses and Eli has a cough, but they're both so much better. Zachary finally got to go to school for the first time since before Christmas. He took a long nap this afternoon, not used to getting up early anymore I guess!
Eli is a master at crawling & pulling up to his feet. He's really quite the character. He loves making us laugh and is full of surprises. The other day he climbed the stairs (9 steps!!!) without any problems. The farthest he'd gone before was two steps, so we didn't expect nine. His appetite is getting much better too. Hopefully he'll be over the last of his cold in the next few days.
The past two nights have been very emotional. Eli's heart surgery was one year ago today, Jan 10 (although it's almost midnight so it'll probably be the 11th by the time I post this). Putting him to bed last night was really hard. I kept thinking back to the night before his surgery. Bryan & I didn't sleep at all. We were so scared he wouldn't make it through the operation; the surgeon said there was a 30% chance he would not.
Normally if you hear there's a 70% chance of something, it's pretty good odds. A farmer loves a 70% chance of rain in the summer. Anyone would love a 70% chance of winning the lottery. Most people can appreciate a 70% chance of snow at Christmas. A 70% chance your 11 week old son will live is not good enough. It was the absolute worst night of our lives.
We were also told to expect that he would be on a heart-lung bypass machine IF he made it through surgery. Our baby made it out of the operating room and was NOT on the machine. His chest incision had been left open for several different reasons. It was covered with a clear dressing. When we finally got to see him, we just stared at his little chest, rhythmically rising & falling, rising & falling, rising & falling. Even with the incision, it was the most beautiful sight.
I couldn't sleep tonight. I keep reliving all those events and emotions of last January. Last night, I cried a lot while putting him to bed. It was hard to let go of him, even for the night. I lost count of how many times I crept back in to watch him sleep. The number of tears I shed last night is a small fraction of the tears I shed 365 nights ago. Tonight, I keep going back to check him, but I'm not as overwhelmed with emotion as I was last night. Tonight I can remember more of the happier moments, I'm not as focused on the fear. The future is still scary, but even if I could look into a crystal ball, I wouldn't do it. We just have to take things as they come and trust in His plan. I knew that before last January, but I REALLY believe it now.
Last night, while I rocked Eli & cried, he just stared at me with those big, brown eyes. His little hand touched the tears on my cheek and he smiled at me. He & I have had many bonding moments over the past two years (yes, almost two years; he lived in my belly for 9 months!). Some were the normal mommy & newborn moments. Too many have been in the hospital setting, but last night was one of the most special so far: As I was giving thanks for Every Little Beat of his heart, I realized that you just haven't lived until your baby plays with your tears of gratitude.
Thursday, January 5, 2012
One Year Ago Today
It's hard to believe that at this time one year ago today we were admitting Eli to the local hospital. He was 10 weeks old and weighed less than he did at birth. We were thinking he had stomach issues, little did we know what we were in for. I think you all know the rest of the story. It's been a crazy year full of stress, tears, prayers, and sleepless nights, but we've learned so much about ourselves & become a stronger family because of it.
The outpouring of support we received in those first few days was overwhelming. The support has continued (as has the stress) and we are so grateful to all of you who help us in so many ways. Thank you for caring about our family and our beautiful little boys. Thank you for realizing how difficult this has been on Zachary & for anything anyone has done to help him cope and adjust. Thank you for all the kind words, cards, gifts, dinners, handmade blankets, offers of help, monetary donations, hugs, and, most of all, encouragement. Most importantly, thank you for all the prayers. God is good. He's brought us this far, He won't abandon us. There's a reason Eli was made this way and a reason why he was given to us. We are so grateful that he & Zachary are ours.
Each day is hard, but at the same time, we don't focus on Eli being a "heart baby" every day. He's a normal little boy who loves to ransack the house, torment the dog & imitate his brother. People who don't know about his issues are surprised to learn of them because he looks so normal & healthy. We do that too. Most days are spent doing normal family things. There's always that fear in the back of our minds or that sinking feeling in the pits of our stomachs as we wait to see what unfolds next. It's difficult not to focus on the negative, but we have so many positives in our lives that we can't stay negative for long.
Thanks again for all the support over the past year. I wish I could write that "we're almost done with this journey" or that "Eli's heart is fixed" but that will never happen. We're in this for the long haul and I'm afraid of wearing people out with our story and prayer requests, but I won't stop! Thanks for caring and remember to treasure Every Little Beat....
The outpouring of support we received in those first few days was overwhelming. The support has continued (as has the stress) and we are so grateful to all of you who help us in so many ways. Thank you for caring about our family and our beautiful little boys. Thank you for realizing how difficult this has been on Zachary & for anything anyone has done to help him cope and adjust. Thank you for all the kind words, cards, gifts, dinners, handmade blankets, offers of help, monetary donations, hugs, and, most of all, encouragement. Most importantly, thank you for all the prayers. God is good. He's brought us this far, He won't abandon us. There's a reason Eli was made this way and a reason why he was given to us. We are so grateful that he & Zachary are ours.
Each day is hard, but at the same time, we don't focus on Eli being a "heart baby" every day. He's a normal little boy who loves to ransack the house, torment the dog & imitate his brother. People who don't know about his issues are surprised to learn of them because he looks so normal & healthy. We do that too. Most days are spent doing normal family things. There's always that fear in the back of our minds or that sinking feeling in the pits of our stomachs as we wait to see what unfolds next. It's difficult not to focus on the negative, but we have so many positives in our lives that we can't stay negative for long.
Thanks again for all the support over the past year. I wish I could write that "we're almost done with this journey" or that "Eli's heart is fixed" but that will never happen. We're in this for the long haul and I'm afraid of wearing people out with our story and prayer requests, but I won't stop! Thanks for caring and remember to treasure Every Little Beat....
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