Mahaela has had a day of difficulty breathing. It is one of the expected complications with the type of surgery that was done. M. has fluid in her lungs. Her lungs have to get used to this extra fluid load with her new re-route of circulation to her lungs. They are trying some diuretics to get the fluid off. She is on high flow oxygen to keep her oxygen level up. They will put in more drainage tubes tomorrow if the meds don't get rid of the extra fluid.
On a good note...she did sit up in the chair this am. She ate a great breakfast and was in a good mood. The doctors were playing jokes on people with a "fart" machine that is remote control. They hid it under her sheets when they saw daddy coming and then it tooted when he walked in the room. He was so happy congratulating M. for good toots. M. was blaming them on daddy. It went back and forth for 3-4 toots while we were all laughing and M. and daddy kept blaming each other...and it's not even April Fool's day yet!
By lunch M. was feeling lousy and we even made her walk in the hall. It was torture, she hated it, and cried the whole time. I bet she totally can't understand why she had to walk to nowhere and daddy wouldn't even pick her up. She was up much of the day and has been napping off and on since 3pm. She just looks depressed!
In spite of it all, she is being so sweet, giving smiles to visitors, and of course a few "I'm gonna getcha's" to the staff and family.
We keep praying for small improvements throughout the next day and beyond.
(By the way, she wants MOMMY to lay with her and she wants to be covered with the BLANKIE that I crocheted for her--this might be the turning point for me.)
The Lord's MERCIES are new every morning...I'm counting on it!
Thursday, March 31, 2011
A Good Start to Mahaela's Recovery
Snuggle BugI really need to make this quick so I can get some rest. I wanted to post that Mahaela is recovering so well without any complications. She got some really good rest for most of the day, with a few fits sprinkled in. Bill snuggled with her a bit today...her favorite thing. This evening, I got to do the same, and loved it. She sucks her thumb and with her pinkie of the same hand, she likes to hook it around my pinkie--our little pinkie promise. So face to face we get a little sweet bonding time. We know she is doing good, but she looked "bad" today. Just the typical post-op swelling that makes you not looks your best. She did wake up a bit tonight...the most she has since the surgery, and was her chatty, cute self.
Below is a video of her beautiful HEART (view with discretion). It's a pretty unique thing to see your child's actual beating heart. We think this is pretty cool, I'm sure she will agree someday. Thank you for continued prayers for a smooth recovery. Our kids at home are getting taken care of and that is such a relief for me. So thankful for family and friends. God has blessed us crazy good!
Tuesday, March 29, 2011
Praise God from Whom all Blessings Flow!
Mahaela is resting, peaceful, perfect!
What an amazing day of answered prayers. I know hundreds of people were praying for our little girl and God was merciful to us. She has done so well. I know so many have bumps in their recovery, but everything is going crazy well for Mahaela today. I just wanted to give that update...details later. Pray for her as she wakes up...that is the tough part. Right now she is very comfortable and sedated. As she wakes up, she does not appear to have pain, but just irritation--especially because she is just so thirsty. She has "come to" just long enough to ask for a drink, suck on some swabs, get really mad and hold her breath because she just wants to gulp down a drink. Each episode brings with it breath holding and a big dip in her oxygen levels. At one point she hit the bed with her fist (the nurse said)...her personality and spunk just shine through. I am thankful tonight for her fight...and her simple need of just a drink of water! Tomorrow lines and drains will start to be removed...and she will get up to WALK. Oh my! That should produce some ATTITUDE!! Thanks for praying for our sweet girl. As Bill said, "What a journey this has been!"
Monday, March 28, 2011
It's a Go
Mahaela will have her surgery in the morning--8:30 start time. We saw the surgeon this afternoon so that he could clear her. We really felt like it could go either way. She still has an enlarged lymph node. We feel assured that her illness was bacterial -ear/throat. She did a course of the right antibiotic and has really not been ill lately. She just would complain of her neck and I believe possibly her throat hurting, but not since a day or two into the antibiotic. The thing with lymph nodes is that once they are that swollen, it can take several weeks to months to return to the normal size. The surgeon said he is much more concerned with upper respiratory viruses that can cause lung problems after surgery. He felt good about doing her case tomorrow and that's what we wanted to hear. Mahaela then went for her EKG and chest xray. She is familiar with the hospital as we have been several times now, but she has no clue of what tomorrow will bring. Ignorance is bliss. But I feel like we are tricking her...I would hate to wake up to...well...what she will wake up to! As I write this, she is riding her trike in the driveway as the boys and dad play catch. It's cold, but the sun is shining. We are hoping to be home in 5-7 days. Wouldn't it be nice to have some warm, sunny days for Mahaela to enjoy while she is recovering! Thank you in advance for your prayers. Bill told Dr. Fortuna that many will be praying for him tomorrow. We are happy to just get on with it, but now...my sweet little girl...
Thursday, March 24, 2011
Hope for Surgery is Fading
I know it sounds completely selfish, but I really want Mahaela to have her surgery on Tuesday. It just felt like the best time. It is about the least disruptive week to have the surgery...of the whole year it feels like. I know, an exaggeration, but not a huge one. Anxiety builds for me when I have to consider how things will work out for the other kids. I just don't have any anxiety over next week. I'm concerned for Mahaela, but not anxious. I really just desire for her surgery to be in the past...not hanging over our heads. But our hopes are fading. Mahaela needs a miracle for her lymph node to recede/soften back to normal and even then, I feel as though they may cancel it just due to her having this recent infection. It's all for a reason.
If it is cancelled then it is a huge question mark of when we will reschedule it--2 weeks or 5 months??
On a happy note...she is a little dolly sleeping next to me as I type this. She is having fun with her cousins in Colorado. She has been sleeping with us a lot lately and always asks to sleep in our bed...Bill caves. We love just talking about her and loving on her while she sleeps so sweetly. She is a sweet blessing.
If it is cancelled then it is a huge question mark of when we will reschedule it--2 weeks or 5 months??
On a happy note...she is a little dolly sleeping next to me as I type this. She is having fun with her cousins in Colorado. She has been sleeping with us a lot lately and always asks to sleep in our bed...Bill caves. We love just talking about her and loving on her while she sleeps so sweetly. She is a sweet blessing.
Tuesday, March 22, 2011
Praying for God's Timing
We have our timing and our timeline and then God does what He wills...which is Always BEST!
Mahaela had a "minor" ear infection and started amoxicillin a week ago. The problem is she had a very large lymph node on her right side neck, the same side as ear infection. It seemed to make sense, but it was so large that Bill said to have her pediatrician check it again. Last Thursday her doctor checked her and threw out his suspicion of Mono??!! So, Thursday, Mahaela had blood work drawn. Did I say already that it took 6 sticks? It was just awful.
Her first blood test came back Saturday morning and it was positive for mycoplasma pneumonia, which is the name of a common bacterial infection that causes ear infections. But amoxicillin does not cover this bacteria well, so we switched her to zythromax--once a day for 5 days--love it. We have been waiting for cytomegalovirus and epstein barr virus ( which causes mono). They both came back negative. We are thankful. So we are just treating the ear infection. The lymph node is just a result of the infection--drainage from the ear and throat--oh, yeah, she had tonsillitis, too. But the upshot is that this lymph node is large and impressive. We have arranged to see the surgeon the day before her surgery to have a final check and for him to clear her for surgery. He may cancel it on account of this large lymph node. It is smaller today, but it is so firm and solid that it seems it may take weeks for it to really go back to normal. There was some mix up with the surgeon's office and they called today to see if we were coming in. We are on vacation in Colorado this week. We intended for the appt. to be the day before her surgery. If he clears her she will then go to get an EKG and chest xray. Those would be a waste if he cancels her surgery. So, I believe we will still go next Monday to have a check. We feel he may very likely postpone her surgery. It seems so uncertain to not know until the afternoon before if it will really happen or not. We are praying she is remarkably recovered. Anything short of that, and we know it is best to postpone the surgery. Selfishly, I pray it still happens as it is one of the least disruptive times for our family to have it done.
We covet your prayers for wisdom for us and our physician.
In the meantime, we are enjoying time in Colorado with family and cousins. We are so thankful for these good times that we and our kids can enjoy.
Mahaela had a "minor" ear infection and started amoxicillin a week ago. The problem is she had a very large lymph node on her right side neck, the same side as ear infection. It seemed to make sense, but it was so large that Bill said to have her pediatrician check it again. Last Thursday her doctor checked her and threw out his suspicion of Mono??!! So, Thursday, Mahaela had blood work drawn. Did I say already that it took 6 sticks? It was just awful.
Her first blood test came back Saturday morning and it was positive for mycoplasma pneumonia, which is the name of a common bacterial infection that causes ear infections. But amoxicillin does not cover this bacteria well, so we switched her to zythromax--once a day for 5 days--love it. We have been waiting for cytomegalovirus and epstein barr virus ( which causes mono). They both came back negative. We are thankful. So we are just treating the ear infection. The lymph node is just a result of the infection--drainage from the ear and throat--oh, yeah, she had tonsillitis, too. But the upshot is that this lymph node is large and impressive. We have arranged to see the surgeon the day before her surgery to have a final check and for him to clear her for surgery. He may cancel it on account of this large lymph node. It is smaller today, but it is so firm and solid that it seems it may take weeks for it to really go back to normal. There was some mix up with the surgeon's office and they called today to see if we were coming in. We are on vacation in Colorado this week. We intended for the appt. to be the day before her surgery. If he clears her she will then go to get an EKG and chest xray. Those would be a waste if he cancels her surgery. So, I believe we will still go next Monday to have a check. We feel he may very likely postpone her surgery. It seems so uncertain to not know until the afternoon before if it will really happen or not. We are praying she is remarkably recovered. Anything short of that, and we know it is best to postpone the surgery. Selfishly, I pray it still happens as it is one of the least disruptive times for our family to have it done.
We covet your prayers for wisdom for us and our physician.
In the meantime, we are enjoying time in Colorado with family and cousins. We are so thankful for these good times that we and our kids can enjoy.
Sunday, March 20, 2011
Called2Care Orphan Event
Kelly Putty from Ordinary Hero Foundation (www.orndinaryhero.org) will be speaking at our church's orphan care ministry kick-off. Our new ministry is named Called to Care.
We can all make a difference. We can all do something--what will your "thing" be?? It just takes one to change the life of one! Who will be your one?
The kick-off event will be April 9th at 6 pm at Cornerstone Baptist in Morton, IL. All are welcome. You will be challenged to make a difference in your community, in the world, in the life of a child.
Start with a pair of shoes. Imagine what child will fill them. Pray for them.
go to http://www.cbcmorton.org/ and click on special events for more information.
Thursday, March 17, 2011
Photo Session for Mahaela
I am thrilled that I actually got this done...They were photographs taken outside, so the weather needed to be decent. So Tuesday was supposed to be the day, but it was very dreary and wet out. So we rescheduled for this am. It was a beautiful, sunny day, and not yet windy. My friend (and a great photographer), Joy, took Mahaela's photos. The best thing is we get a little sneak peek! I was a bit worried, because M. wasn't in a super great mood this am. I think she has an ear/lymph node that is bothering her and she was kind of whimpering with pain. Thankfully, the Tylenol kicked in by the time we were ready to take some pictures and she did great.
Check them out on this blog www.vintageblu.blogspot.com. Check out the dolly posted on 3/17. That is Mahaela, of course! Joy did a great job capturing her sweetness.
That's all good news...the bad news is Mahaela has some kind of infection?? We are hoping it is just viral or just an ear infection and will resolve quickly. But, she is having her blood drawn for Strep, Mono, Cytomegalovirus. I am hoping it all comes back negative. After her doctor told me what he was suspicious of, I asked about her surgery...he just wrinkled his nose. I know what that means. But, I will wait for results before jumping to conclusions. Praying that it is nothing that would require her surgery to be cancelled.
Tomorrow, Mahaela has all her preop testing done. EKG, chest xray, lots of blood, and some nose swabs. Also, the surgeon's nurse practitioner wants to do a history and physical. I think I may try to go up there first. I have slight thoughts of her surgery being cancelled and all these tests being a waste. I just want everything to go my way :)
Check them out on this blog www.vintageblu.blogspot.com. Check out the dolly posted on 3/17. That is Mahaela, of course! Joy did a great job capturing her sweetness.
That's all good news...the bad news is Mahaela has some kind of infection?? We are hoping it is just viral or just an ear infection and will resolve quickly. But, she is having her blood drawn for Strep, Mono, Cytomegalovirus. I am hoping it all comes back negative. After her doctor told me what he was suspicious of, I asked about her surgery...he just wrinkled his nose. I know what that means. But, I will wait for results before jumping to conclusions. Praying that it is nothing that would require her surgery to be cancelled.
Tomorrow, Mahaela has all her preop testing done. EKG, chest xray, lots of blood, and some nose swabs. Also, the surgeon's nurse practitioner wants to do a history and physical. I think I may try to go up there first. I have slight thoughts of her surgery being cancelled and all these tests being a waste. I just want everything to go my way :)
Tuesday, March 15, 2011
Two Week Countdown until Surgery
Mahaela will have open heart surgery 2 weeks from today. Our goal is to help her stay healthy until her surgery...how exactly that is done, I have know idea. But right now, she has an ear infection and started Amoxicillin today. See--what could we do about that??. She is doing so well, otherwise. We will leave for Colorado/spring break sometime this weekend. We are looking forward to enjoying Bill's sis and her family and Colorado skiing and scenery.
This week feels so crazy busy. Aubrey told me that it helps to write lists (thanks, dear), so she wrote me out a to-do list. I guess it will help because I can barely remember what is happening each day...and there is a lot happening. Like just now I'm remembering that I have a hair appointment tomorrow and it is NOT on the list!
We covet your prayers that her ears heal and she stays well, otherwise. We also covet your prayers for her surgery.
This week feels so crazy busy. Aubrey told me that it helps to write lists (thanks, dear), so she wrote me out a to-do list. I guess it will help because I can barely remember what is happening each day...and there is a lot happening. Like just now I'm remembering that I have a hair appointment tomorrow and it is NOT on the list!
We covet your prayers that her ears heal and she stays well, otherwise. We also covet your prayers for her surgery.
Saturday, March 12, 2011
Who Can Adopt??
Sorry for this long post...as so many of my posts seem to be. I didn't intend to ramble or hop up on my soapbox...but...
Before March, 2009, I knew nothing about adoption or that it would be any part of my life. On February 28, 2009, I read a post from a friend that was posted on Feb 22, 2009. It was her announcement that their family was beginning the process of adopting a little boy from Ethiopia. We were acquaintances--our kids go to the same school. I don't recall ever considering adoption before that very moment. I am still really amazed by how the seed was planted and how quickly it grew in my heart. I sat looking at this post and asked "who can adopt?" It was a question that was completely wrapped in all the excuses and reasons why we and most other people don't adopt. I believed financial to be the biggest, occasionally superficial, reason why most people say they can't see adopting. But I was reading about this family employed by a Christian school, single income, 3 kids--they were adopting! That was my answer. Having never even really considered adoption, so never really making an excuse not to adopt, suddenly it was before me...shouldn't we be adopting and what reason do I really have not to adopt? If this family (completely awesome...you know who you are and I thank God for you) could adopt, why couldn't/shouldn't we?
So if money doesn't stop you from adopting...what does? If you have the money to adopt or had the faith to believe that it would be provided, what stops people from adopting? There are many legitimate reasons not to adopt. Just as God gives you children to birth, He must give you the heart to adopt. If he doesn't, you shouldn't. I don't stand in judgment of others. I just know for us, I am so happy that we have Mahaela. (It is sort of like having an argument over how many children to have...if you would have another child, then you would know that you were meant to have another child. Consider the last child you have...should you have stopped before you had them? I can't imagine not having Lindsey. Now I can't imagine not having Mahaela.) I also know that so many others would experience the same joy and blessing that we have experienced if they would step out...just start down the road and see what doors open and what doors close. Trust God that He has a little soul that you will completely wrap your heart around...God can grow your heart big enough!
Now, if everyone could read this and not just the 15 followers that I have--half of which have already adopted. LOL!
Ok...all that to say...It was two years ago this month that I felt led to check out what adoption was all about and how to go about doing it. I did crazy research on the internet...looking on-line for hours investigating everything about it. It was 2 years ago that I had lunch with Bill at Buffalo Wild Wings while Lindsey was in preschool, and he said he wanted to talk to me about something...gulp. He said, "I think we should adopt." I immediately couldn't believe he was convinced of it, and immediately felt all the inadequacies of my mothering pour down on me. The tears came. I had submitted enough children to my mothering...did I need to be bringing another one into my craziness? He didn't want to hear anything about it..."you're a good mom."
I know the truth, but from that moment, I sucked it up and put my nose to the grindstone. I might add that my life wasn't settled and in order and the time felt right. It was far from it. This call to adopt came really right in the middle of what seemed like some messy stuff. I think I really appreciated the distraction from some of the negatives going on in my life.
I was on a mission. With God's help, I was going to find the child that belonged in our family. Even one year ago, we still had no idea that it was a little girl they called "Misha."
Before March, 2009, I knew nothing about adoption or that it would be any part of my life. On February 28, 2009, I read a post from a friend that was posted on Feb 22, 2009. It was her announcement that their family was beginning the process of adopting a little boy from Ethiopia. We were acquaintances--our kids go to the same school. I don't recall ever considering adoption before that very moment. I am still really amazed by how the seed was planted and how quickly it grew in my heart. I sat looking at this post and asked "who can adopt?" It was a question that was completely wrapped in all the excuses and reasons why we and most other people don't adopt. I believed financial to be the biggest, occasionally superficial, reason why most people say they can't see adopting. But I was reading about this family employed by a Christian school, single income, 3 kids--they were adopting! That was my answer. Having never even really considered adoption, so never really making an excuse not to adopt, suddenly it was before me...shouldn't we be adopting and what reason do I really have not to adopt? If this family (completely awesome...you know who you are and I thank God for you) could adopt, why couldn't/shouldn't we?
So if money doesn't stop you from adopting...what does? If you have the money to adopt or had the faith to believe that it would be provided, what stops people from adopting? There are many legitimate reasons not to adopt. Just as God gives you children to birth, He must give you the heart to adopt. If he doesn't, you shouldn't. I don't stand in judgment of others. I just know for us, I am so happy that we have Mahaela. (It is sort of like having an argument over how many children to have...if you would have another child, then you would know that you were meant to have another child. Consider the last child you have...should you have stopped before you had them? I can't imagine not having Lindsey. Now I can't imagine not having Mahaela.) I also know that so many others would experience the same joy and blessing that we have experienced if they would step out...just start down the road and see what doors open and what doors close. Trust God that He has a little soul that you will completely wrap your heart around...God can grow your heart big enough!
Now, if everyone could read this and not just the 15 followers that I have--half of which have already adopted. LOL!
Ok...all that to say...It was two years ago this month that I felt led to check out what adoption was all about and how to go about doing it. I did crazy research on the internet...looking on-line for hours investigating everything about it. It was 2 years ago that I had lunch with Bill at Buffalo Wild Wings while Lindsey was in preschool, and he said he wanted to talk to me about something...gulp. He said, "I think we should adopt." I immediately couldn't believe he was convinced of it, and immediately felt all the inadequacies of my mothering pour down on me. The tears came. I had submitted enough children to my mothering...did I need to be bringing another one into my craziness? He didn't want to hear anything about it..."you're a good mom."
I know the truth, but from that moment, I sucked it up and put my nose to the grindstone. I might add that my life wasn't settled and in order and the time felt right. It was far from it. This call to adopt came really right in the middle of what seemed like some messy stuff. I think I really appreciated the distraction from some of the negatives going on in my life.
I was on a mission. With God's help, I was going to find the child that belonged in our family. Even one year ago, we still had no idea that it was a little girl they called "Misha."
A few things about Mahaela:
She does not care for blankets and will often remind us, "No blankie."
She has a very active saliva gland. You know how occasionally you will spray saliva out from under your tongue or you will see someone do it? Like your saliva gland gets pinched? Well, Mahaela does it about 3 times a week. Strange and unique.
Friday, March 11, 2011
Thanks for Reading
I agree with most bloggers...I blog to record events, journal my thoughts. If nobody reads...I'll never know it and I'll keep blogging just for me. But I have to say, for those of you who read something and then send encouragement my way...I truly appreciate it. I appreciate the kind words, the prayers, the "I get what you're saying" remarks. The one thing that I miss about blogging is the dialog. So I wanted to take a moment to thank those who have made comments all along our journey. They are appreciated.
Hugs to you all!
Thursday, March 10, 2011
"Ya, she's adopted"
Aubrey asked me the other day, "When will we stop thinking about adoption when we think of Mahaela?" I totally get what she means. Like she said, "I think about adoption all the time."
Well, I don't know when that happens, but for now, Mahaela and her adoption go hand in hand. It has nothing to do with being proud about adopting and wanting everyone to know it--nothing like that. It's kind of like having a newborn...everyone is aware that the baby is a newborn...and they can imagine the experience you have been through to have a newborn. But, no one knows Mahaela is adopted...she looks like she belongs to us. When she says cute things to people in her low voice in adorable English, I just want to tell them...she was "fluent" in Bulgarian just a couple months ago! When she pushes the cash register buttons at the jewelry store and the lady gives her a "lecture" (probably more for my benefit than Mahaela's), I just want to tell her, "we have a lot of training to catch up on...she's never walked down a city sidewalk, into a jewelry store and had a cash register waiting at her height, for her to push all the buttons on--she's adopted from Bulgaria."
Her adoption is such a profound, permeating experience...I don't know when the uniqueness of it will wear off.
What I do know is that I don't want Mahaela to have the label of "the adopted sister" or "their adopted daughter." That will get old, really quickly. I understand that it is the easiest way to tell our story, but I don't want Mahaela to grow up feeling less a part of our family or less of a Hauter! We won't think that, but it does play on young minds. I don't want to have to convince her how much she belongs, I just want her to know it and to feel it, because it's TRUE.
She barely has eyelashes
She loves her daddy
She loves the water, bath, shower. She will spray the shower sprayer right into her face--and likes it!
She always requests "let it shine" while circling her finger="this little light of mine" when I sing to her at night
Well, I don't know when that happens, but for now, Mahaela and her adoption go hand in hand. It has nothing to do with being proud about adopting and wanting everyone to know it--nothing like that. It's kind of like having a newborn...everyone is aware that the baby is a newborn...and they can imagine the experience you have been through to have a newborn. But, no one knows Mahaela is adopted...she looks like she belongs to us. When she says cute things to people in her low voice in adorable English, I just want to tell them...she was "fluent" in Bulgarian just a couple months ago! When she pushes the cash register buttons at the jewelry store and the lady gives her a "lecture" (probably more for my benefit than Mahaela's), I just want to tell her, "we have a lot of training to catch up on...she's never walked down a city sidewalk, into a jewelry store and had a cash register waiting at her height, for her to push all the buttons on--she's adopted from Bulgaria."
Her adoption is such a profound, permeating experience...I don't know when the uniqueness of it will wear off.
What I do know is that I don't want Mahaela to have the label of "the adopted sister" or "their adopted daughter." That will get old, really quickly. I understand that it is the easiest way to tell our story, but I don't want Mahaela to grow up feeling less a part of our family or less of a Hauter! We won't think that, but it does play on young minds. I don't want to have to convince her how much she belongs, I just want her to know it and to feel it, because it's TRUE.
Things about Mahaela:
(a new list I am going to add to as I think of things that describe Mahaela)
She slaps her hands together at us when she is mad...like she has seen her nannies do it a lot.She barely has eyelashes
She loves her daddy
She loves the water, bath, shower. She will spray the shower sprayer right into her face--and likes it!
She always requests "let it shine" while circling her finger="this little light of mine" when I sing to her at night
Tuesday, March 8, 2011
Surgery Date Set
The date is set. Mahaela will have surgery on Tuesday, March 29 to do the last correction that is needed on her heart. It was good to finally meet the surgeon that I have heard so much about from Bill. Bill does many anesthetics for pediatric heart cases and so gets to work with this surgeon a lot. The surgery is fairly straightforward in what needs to be done. She will be in the hospital for 5-10 days. We left the surgeons office and headed to the lab for a nose swab for MRSA. If Mahaela is a carrier, which I guess is not that uncommon these days, she would have to be medicated (ointment in her nose, I think) for the week before surgery; But Bill just texted that she does not have MRSA.
During the cath procedure, the cardiologist sent off a blood sample for a test that indicates whether or not she has a functional spleen. Her type of heart condition can often mean that other things are "messed up" that are developed during the same embryological stage. Strangely enough, it hasn't been easy to find out if she has a spleen or not. I guess oftentimes, these kids will have multiple small spleens that are nonfunctional. We don't know what her anatomy is, but the blood work indicated that her spleen is nonfunctional. She has been so healthy, for us and in the orphanage, that we had convinced ourselves that she probably did have a spleen. I'm pretty disappointed...we will have to get some recommendations, but she will be at risk for significant infections--the kind that could be life-threatening with her heart condition. That's the worst case scenario. On the other hand, we have heard that there is some debate on how to treat these kids. There is a difference in research between those that have congenital asplenia (no spleen from birth) or traumatic asplenia (from injury). The initial thought and treatment is that she would have to be on antibiotics for the rest of her life...we will see what they say. We are not sure who will manage this part of her care. It was strange, because nobody seemed to be interested in finding out this fact besides us. So, we may need some further test before surgery. More to that saga later.
On Friday, March 18 she will have to go to the hospital for all her preop testing...which I feel like we just did...lab work, chest xray, nose swabs...I hope they can get what they need as we leave for Colorado on March 19 for the kids' spring break. Then, as the surgeon said, my job is to keep her healthy. We will get home Saturday night...and I guess I'll try to quarantine her?? Ha...I have 4 other kids that also function as germ passers!
Mahaela always steals daddy's glasses and blows on them and cleans them on her shirt
During the cath procedure, the cardiologist sent off a blood sample for a test that indicates whether or not she has a functional spleen. Her type of heart condition can often mean that other things are "messed up" that are developed during the same embryological stage. Strangely enough, it hasn't been easy to find out if she has a spleen or not. I guess oftentimes, these kids will have multiple small spleens that are nonfunctional. We don't know what her anatomy is, but the blood work indicated that her spleen is nonfunctional. She has been so healthy, for us and in the orphanage, that we had convinced ourselves that she probably did have a spleen. I'm pretty disappointed...we will have to get some recommendations, but she will be at risk for significant infections--the kind that could be life-threatening with her heart condition. That's the worst case scenario. On the other hand, we have heard that there is some debate on how to treat these kids. There is a difference in research between those that have congenital asplenia (no spleen from birth) or traumatic asplenia (from injury). The initial thought and treatment is that she would have to be on antibiotics for the rest of her life...we will see what they say. We are not sure who will manage this part of her care. It was strange, because nobody seemed to be interested in finding out this fact besides us. So, we may need some further test before surgery. More to that saga later.
On Friday, March 18 she will have to go to the hospital for all her preop testing...which I feel like we just did...lab work, chest xray, nose swabs...I hope they can get what they need as we leave for Colorado on March 19 for the kids' spring break. Then, as the surgeon said, my job is to keep her healthy. We will get home Saturday night...and I guess I'll try to quarantine her?? Ha...I have 4 other kids that also function as germ passers!
Snow Days...fun, but we are ready for spring!
The three of us before Mahaela's angiogram.
Daddy got to take her back...something that parents rarely get to do..."membership has it's privileges"
Mahaela always steals daddy's glasses and blows on them and cleans them on her shirt
Friday, March 4, 2011
What we know so far...
Mahaela had a diagnostic angiogram through a heart catheterization this past Tuesday. We often refer to it as simply a heart cath, but they are the same thing. She aslo had a TEE (transesophageal echocardiogram)--that is an echo that is done by a probe inserted down her esophagus. It is able to get images from the back side of the heart and possibly more clearly than the echo that is done from the outside of her chest. Maybe TMI, but I have to put that nursing degree to use every once in a while. Through this testing, they were able to confirm her anatomy, her oxygenation, the function of her heart and valves, and what correction she still needs. I could go into long, boring explanations of her anatomy, but the upshot is...she needs one more surgery. She looks perfect enough right now, that we can hardly stand putting her through it, but in the long-run, she will have better exercise tolerance, better oxygenation, and better lung function down the road.
It was nice to get a little trial run at the hospital, on the same floor she will be on after her surgery. There is a corner of the peds ICU that is just for Congenital Hearts. I'm so thankful to have this resource right where we live and work. The funny/sad thing is the kids can't wait for her to have her surgery because they have seen and heard of all the amenities that OSF has for families in their beautiful, new Children's Hospital. They really take care of the other kids also. (Child life center, video games, game room, snacks, etc). I have to remind them that this is about Mahaela and they will hopefully be in school and taken care of at home...not running around her ICU bed!
One question we hear a lot: "so will this be it--the last surgery?"
The answer: yes, we hope so....But, there are no guarantees with her heart condition. Her heart will always be at risk for heart failure...but we hope it is 50 years from now and with new technology, they could help her even more. She may have issues with arrhythmias that would require a pacemaker, or her valve, that is a bit leaky, could need repaired. So we don't know what the future holds. But we expect her to have a very normal, active childhood...just maybe not an Olympic swimmer. As the doctor told us, just start her off in golf! Many kids, especially those that tend to be athletic and enjoy active sports, do well until maybe age 10. As they grow, and the activities become more strenuous, kids are less likely to be able to tolerate that level of exertion and just can't keep up. But for now, and in the distant future, I don't believe she will be limited that much, if at all.
Today, during cath conference at the hospital, the cardiologists and the surgeons talked about her case together and the plan for her surgery. We will see the surgeon on Monday and plan a date. Now, I can't wait to just get it over with and dread seeing her feeling so yucky. I know she will do well and will be resilient, as kids are.
It was nice to get a little trial run at the hospital, on the same floor she will be on after her surgery. There is a corner of the peds ICU that is just for Congenital Hearts. I'm so thankful to have this resource right where we live and work. The funny/sad thing is the kids can't wait for her to have her surgery because they have seen and heard of all the amenities that OSF has for families in their beautiful, new Children's Hospital. They really take care of the other kids also. (Child life center, video games, game room, snacks, etc). I have to remind them that this is about Mahaela and they will hopefully be in school and taken care of at home...not running around her ICU bed!
One question we hear a lot: "so will this be it--the last surgery?"
The answer: yes, we hope so....But, there are no guarantees with her heart condition. Her heart will always be at risk for heart failure...but we hope it is 50 years from now and with new technology, they could help her even more. She may have issues with arrhythmias that would require a pacemaker, or her valve, that is a bit leaky, could need repaired. So we don't know what the future holds. But we expect her to have a very normal, active childhood...just maybe not an Olympic swimmer. As the doctor told us, just start her off in golf! Many kids, especially those that tend to be athletic and enjoy active sports, do well until maybe age 10. As they grow, and the activities become more strenuous, kids are less likely to be able to tolerate that level of exertion and just can't keep up. But for now, and in the distant future, I don't believe she will be limited that much, if at all.
Today, during cath conference at the hospital, the cardiologists and the surgeons talked about her case together and the plan for her surgery. We will see the surgeon on Monday and plan a date. Now, I can't wait to just get it over with and dread seeing her feeling so yucky. I know she will do well and will be resilient, as kids are.
We would covet your prayers for Mahaela. Pray that she would stay healthy up until surgery and have a speedy recovery after. I know she will want to get out there and enjoy the spring! She will definitely get a new bike for all she has to go through!
Tuesday, March 1, 2011
Mahaela is doing well
Just a quick update...Mahaela had a heart catheterization/angiogram today. We spent 12 hours at the hospital and we are home this evening. She did really great. I have to run as I'm going to go snuggle with her. I will post results later, but they were as expected and "good."
God is so good to keep her safe.
God is so good to keep her safe.
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