I went up on Friday to visit Kelly and Juliana. The latest I had heard was that there was a chance that they would go home next Thursday. When I arrived, Kelly told me that the doctors had said that they might go home this weekend! This was most excellent news!
The news turned out to be accurate. We spent most of the day Sunday waiting to be discharged. We had all the luggage packed up and ready to go and waited... and waited... and waited. We were very much hoping that the doctors wouldn't come back and say "oops, we changed our minds". We did get to leave in the late afternoon. The drive from Nashville to Chattanooga was very smooth.
Juliana is still on oxygen, but only a very little amount. She eats so much faster now. She babbles more and is a lot more active. Her incision is healing very nicely. We had been told to expect three weeks in the hospital - one week in ICU and then two in a room. We are thrilled that she has healed so fast and is leaving the hospital after only nine days. We would like to say "thank you" to all the people who have been praying for her recovery.
It is good to be home. It was good to sleep in our own bed again - Kelly was very sore from sleeping on the bed in the hospital room. It is great to have our little Juliana free from all of her tubes and lines and monitors. It is so good to be able to hold her (albeit very carefully) and have her go to sleep in my arms.
Monday, June 13, 2011
Wednesday, June 8, 2011
Moving on up
to the 6th floor! We have moved. No fever so far today! Nothing on culture so far today! Eating better! Things are looking up!
Pneuma NOOOO!
Juliana got her breathing tube taken out today, she is now on oxygen through the nose. She also got her PA line taken out (basically a big IV in her right wrist). We are hoping tomorrow they will take out her central line and chest tube. Those are some BIG goals. Last night she had a fever so they drew some cultures but won't have the result until tomorrow. She spiked again while I was eating dinner back at the Ronald McDonald House. They went ahead and gave her some antibiotics until they get those cultures back. She is pretty congested. We are just hoping and praying she doesn't have pneumonia. I don't think she does but know it is a possibility. She was more awake today but no smiles :( She went most of the day without pain meds. But she was getting pretty fussy this evening and they gave her some. Nothing we did would make her happy. I can't wait to hold her again. And I can't wait until she is smiling again. I think it is harder now seeing her even without all the extra tubes and wires she has had. She is now awake and frustrated because she can't cough up the stuff in her lungs so we basically have to make her gag so she will cough. The doctor seems encouraged by how she is looking. She will probably at least for the time being, go home on Sildenafil (Viagra) and maybe some Lasix. But that is still too far in the future to know. Thank you all for your support!
Kelly
Kelly
Monday, June 6, 2011
Operation - Day 3
Juliana started the day off with amazingly awesome heart and lung pressures. Everyone was very impressed. As the day wore on, though, her lung pressures went back up to where they do not need to be (about half of her systemic pressure).
They removed the chemical paralysis today. After several hours, she was moving a little. She is on morphine for pain and several other drugs for sedation. She opened her eyes three different times and looked out a little. We had about three seconds of "eyes open" time throughout the day. Not much, but it is good to see her beautiful blue eyes again.
Otherwise there were no changes in her condition.
They removed the chemical paralysis today. After several hours, she was moving a little. She is on morphine for pain and several other drugs for sedation. She opened her eyes three different times and looked out a little. We had about three seconds of "eyes open" time throughout the day. Not much, but it is good to see her beautiful blue eyes again.
Otherwise there were no changes in her condition.
Saturday, June 4, 2011
Operation - Day 2
Juliana has stayed in about the same condition today. She is still chemically paralyzed and still sedated. They have removed a couple tubes, added a couple of medicines, and changed some medicines out for different ones. She is on morphine now for pain management. She did not react to having her nose suctioned or her gums brushed (yesterday - even though she had no signs of consciousness, her heart rate and blood pressure would spike when getting suctioned or brushed - she hates these things).
It is hard to see our little one covered in so many tubes and not be able to hold her or squeeze her. It is hard to call her name and she not answer, to touch her face or hair and feel no response. Only the steady rhythm of her chest from the ventilator and the steady pulsing of all the numbers on the screen show her to be alive.
We lose track of time in this place. What day is it? Time passes slowly. In many ways it feels like "Groundhog Day" again.
It is hard to see our little one covered in so many tubes and not be able to hold her or squeeze her. It is hard to call her name and she not answer, to touch her face or hair and feel no response. Only the steady rhythm of her chest from the ventilator and the steady pulsing of all the numbers on the screen show her to be alive.
We lose track of time in this place. What day is it? Time passes slowly. In many ways it feels like "Groundhog Day" again.
Friday, June 3, 2011
Operation - Day 1
Our surgery was originally scheduled for yesterday. However, it was pushed to today because a more critical child came in and the surgeon spent most of the day in the operating room. In that case, we didn't want Juliana being operated on by a surgeon who has been hard at work all day and no longer fresh.
The hardest part about today was the very beginning. We had heard all the terrible ways the surgery could go wrong. Juliana was all smiling and sticking her tongue out and babbling. We kissed our adorable little bubble-blowing girl goodbye. She does not know what is coming. We know that they are going to saw her chest in half and split her open like a lobster. The nurses take her away, and we were left wondering if we will ever see our little girl again.
The wait was not bad. We were kept informed about every hour as the operation progressed. The surgery took about four hours, then she was transferred to the Pediatric Critical Care Unit (PCCU).
The nurses tried to prepare us for how she would look. They showed us pictures of other children who had been through this surgery. We finally were allowed to visit Juliana. Kelly and I were surprised that she looked as good as she did. We were both expecting to see far worse. Yes, Juliana is a mess of tubing and sensors and wires. She is on a ventilator, on at least a dozen intravenous medicines to control her heart and lungs, and is wired to at least ten different sensors giving real-time updates on her condition. However - both Kelly and I have seen children in so much more dangerous conditions; seeing Julina like this was not shocking or surprising to us - we knew she had heart problems before we adopted her. For what it's worth, there are newborns on this wing with a lot more tubing and wires and medicines.
Juliana is chemically paralyzed and sedated. If her numbers improve (lung pressure vs. blood pressure is the biggie) the doctors will start the process of waking her back up tomorrow night.
We suspect that Juliana will be mad. We hope that she will be glad to see us.
The hardest part about today was the very beginning. We had heard all the terrible ways the surgery could go wrong. Juliana was all smiling and sticking her tongue out and babbling. We kissed our adorable little bubble-blowing girl goodbye. She does not know what is coming. We know that they are going to saw her chest in half and split her open like a lobster. The nurses take her away, and we were left wondering if we will ever see our little girl again.
The wait was not bad. We were kept informed about every hour as the operation progressed. The surgery took about four hours, then she was transferred to the Pediatric Critical Care Unit (PCCU).
The nurses tried to prepare us for how she would look. They showed us pictures of other children who had been through this surgery. We finally were allowed to visit Juliana. Kelly and I were surprised that she looked as good as she did. We were both expecting to see far worse. Yes, Juliana is a mess of tubing and sensors and wires. She is on a ventilator, on at least a dozen intravenous medicines to control her heart and lungs, and is wired to at least ten different sensors giving real-time updates on her condition. However - both Kelly and I have seen children in so much more dangerous conditions; seeing Julina like this was not shocking or surprising to us - we knew she had heart problems before we adopted her. For what it's worth, there are newborns on this wing with a lot more tubing and wires and medicines.
Juliana is chemically paralyzed and sedated. If her numbers improve (lung pressure vs. blood pressure is the biggie) the doctors will start the process of waking her back up tomorrow night.
We suspect that Juliana will be mad. We hope that she will be glad to see us.
Monday, May 30, 2011
All ABout The Girls
Wow! We have been home for 3 weeks, but it seems like a much, much longer time. These 3 weeks have been very, very busy. It is so strange how having your own children (as opposed to my daily occurrence of taking care of other people's children and sending them home) can change so many things about you. I haven't lost my absentmindedness but have noticed remarkable improvement (keeping track of Juliana's medicine, oxygen level, and appointments is always at the forefront of my mind).
Here is a look in to what has been going on and what is about to be going on with each girl:)
ELENA
Elena is doing fantastic in language development. She had tubes put in her ears last Wednesday and is already hearing so much more as evidenced by her new sounds and turning her head when a new sound appears. She is loving music and will even do a little boogie when she hears it; she also tries to sing along (so cute). She is also progressing in learning how to walk. She is using a little push toy to walk from one end of the living room to the other. I am very proud:)
Elena LOVES to eat and will have surgery to repair her cleft palate June 22 (at least that is the plan for now). She has been compensating well eating many things like animal crackers. This surgery will be difficult for us just because we have to be the "meanies" keeping her fingers out of her mouth. We have been working on training her not to suck on her fingers anyway, because it is so germy.
Elena is an absolute JOY. She is so fun and loving. She LOVES kisses and leans in for them and gives them back (very sloppily:P). She is waving and saying BYE-BYE. She is making choices, like when she is eating by pointing to the food she wants. She is signing more and eat. She is saying MAMA deliberately now. She likes going for walks and playing outside. AND my favorite ... she LOVES bath time. I see some swimming in the near future.
Though she will have many experiences without me this month, which makes me very very sad but it is for a very good reason...
Juliana
Juliana has also come a LONG way in 3 short weeks. And even further this past week. We knew when we committed to Juliana that she had a 'heart condition'. We assumed this would mean surgery. After meeting with the orphanage director, we most certainly knew this meant surgery (as she told us the cardiologist there said she need surgery SOON, but because she was being adopted soon they wanted her to have it in America). So, while we over there, I had a dear friend (April Grubbs;who happened to be 8.5 months pregnant at the time) setting up appointments for me here, because I wanted them seen ASAP. We flew home on Friday, May 6. Our first doctor's appointment was Monday, May 9 with the regular Pediatrician here in town. He was great. He has 4 adopted children, including one with a disability. He was able to get us in the next day to see the local cardiologist. Tuesday, we went to the cardiologist and he was CONCERNED. He didn't have an echo tech there so we would have to wait until the following Tuesday. After the echo, the Dr. explained to me that the pressure in her lungs appeared to be very high from the echo. They would need to do a heart cath to get exact measurements to DETERMINE if she would be able to have surgery. This was not what I expected AT ALL. I thought we would come home, get her seen and have surgery QUICKLY and everything would be fine. Now I have this Doctor telling me that she may have damage beyond repair and that surgery could actually make it worse and so would mean a shorter life span. I was devastated. I was beginning to feel very sorry for myself and even compared (in my head) to the Kennedy's. I found myself pleading with God (during one of my student's IEP meetings) that this not be true. God, I lost my baby in miscarriage, I lost 'Marlena' before I even got to hold her, I lost 'John Mark', how can I possibly lose another child. I envisioned the funeral I was going to soon have to plan (but couldn't find myself doing it, I couldn't plan a funeral for my baby) and just thought how in the world can I give her back so quickly.
Fast Forward:
Last weekend we went to the Nashville area to visit my family. Juliana woke up at about 5 AM, fussing. This is very, very unusual (as in never happened before). I picked her up and she felt very, very hot. I got up tried to feed her and calm her down. She did calm down and did eat a little, but was feeling feverish. I searched for a thermometer, but couldn't find one at my Granny's house. I called the pediatrician's office and after answering a series of questions from the nurse, she told me to take her in to the hospital. Vanderbilt is about 25 min. away so we took her there. She did have a small fever, but there biggest concern was her oxygen level. It at one point while we were in the ER dropped to the 60s and even to the 40s at one point. Because they knew she had a heart condition with what appeared to be some sort of infection, they began running tests. The cardiologist came down and checked her out and they decided to admit her to the hospital. The next day in the hospital would bring more tests run and the Vanderbilt doctors consulting with her Chattanooga doctors about there findings. At Vanderbilt, they found one more diagnosis with the echo that we did not know about. We knew from the Chattanooga doctors that she had an ASD and VSD (hole in the upper chambers and a hole in the bottom chambers). But at Vandy, they began looking for something else that was causing such high pressure in her lungs and they found it... Patent Ductus Arteriosus (PDA). Everyone has this in the womb it allows blood to bypass the baby's lungs by connecting the pulmonary arteries (which supply blood to the lungs) with the aorta (which supplies blood to the body). Soon after the infant is born and the lungs fill with air, this blood vessel is no longer needed. It will usually close within a couple of days. Well, hers didn't and was quite large. This was causing her to have too much blood going to her lungs causing the high pressure. They Doctor's decided to do the heart cath there at Vandy (she was supposed to have it done last Thursday in Chattanooga). It just made more sense since IF she was able to have surgery, it would be done at Vandy and they would need all this information anyway. So this means we got cathed a day earlier (last Wednesday). It was a nerve wracking wait. The Doctor had explained to me in detail all the risks in doing this procedure, especially with someone with such high pressures. The nurse called every so often to tell me how it was going, which is a huge help. Although, I would be lying if I didn't say every time the phone rang for me, I thought, this is it something went wrong and this is where they are going to tell me. They last update I got, the nurse kind of stalled because she was basically apologizing for the procedure taking 'so long' (I actually thought it was pretty quick; but maybe that is because I was watching the 'Jerry Springer' show happen in the waiting room with another family). It was like I could finally breath when she said Juliana was doing great and that they were finishing up and that the next call would be to go to the consultation room where the doctor would inform me what happened. The Doctor that performed the cardiac cath and the medical student that is following Juliana met me in the room and I was just holding my breath. I am seriously surprised I didn't pass out from lack of oxygen just from holding my breath while his computer booted up so he could show me the video of the procedure and give me his recommendation (surgery or no surgery). And when he told me he DID recommend her for surgery, I could then take a breath. That is when I started crying, I was so happy. He explained that it would be a BIG surgery and that he recommended doing it during this hospitalization. There is still time to do the surgery but that window is closing. The next day during rounds (I love that all the doctor's and nurses include you in this), I was informed that her surgery was scheduled for the next Thursday unless they could get her in on Tuesday. Dr. Mettler will be the surgeon. There was no reason clinically to keep us until this coming Thursday so they sent us home on oxygen (to keep her pressure in her lungs down). We will have surgery early Thursday morning. She could be in ICU for about a week and another 3 weeks in a room.
She is so much more active on oxygen. She makes more babbling sounds, smiles more, laughs more, eats faster and doesn't sweat, plays more, uses muscles more. I am very encouraged by this. I know we are not out of the woods yet, but I am so relieved that surgery is a go. I will most certainly miss Elena and Ezra on a daily basis, but in the long term this is a very short time.
So that is what has been going on in our world, which hopefully explains the lack of updates:/
We have been so INCREDIBLY BLESSED by a wonderful support system (our parents, our small group and extended church family, close friends, co-workers, even not so close friends). I mean I sometimes will just stop and really think about HOW MUCH we have been blessed by the kindness and generosity of others. People have given us money to help pay for the adoption, "stuff" to care for them, time by completing tasks for us that we just can't get to(like yard work), meals, and most of all love, encouragement, and prayers. We most certainly do not deserve ANY of it, but are most GRATEFUL and HUMBLED at this outpouring of love.
I will have my laptop this time when we are at the hospital so I will update as I can. It is sometimes just too emotionally draining to post, but I will try to keep updates coming.
Thank you for your prayers and encouragement
Kelly
Here is a look in to what has been going on and what is about to be going on with each girl:)
ELENA
Elena LOVES to eat and will have surgery to repair her cleft palate June 22 (at least that is the plan for now). She has been compensating well eating many things like animal crackers. This surgery will be difficult for us just because we have to be the "meanies" keeping her fingers out of her mouth. We have been working on training her not to suck on her fingers anyway, because it is so germy.
Elena is an absolute JOY. She is so fun and loving. She LOVES kisses and leans in for them and gives them back (very sloppily:P). She is waving and saying BYE-BYE. She is making choices, like when she is eating by pointing to the food she wants. She is signing more and eat. She is saying MAMA deliberately now. She likes going for walks and playing outside. AND my favorite ... she LOVES bath time. I see some swimming in the near future.
Though she will have many experiences without me this month, which makes me very very sad but it is for a very good reason...
Juliana
Fast Forward:
Last weekend we went to the Nashville area to visit my family. Juliana woke up at about 5 AM, fussing. This is very, very unusual (as in never happened before). I picked her up and she felt very, very hot. I got up tried to feed her and calm her down. She did calm down and did eat a little, but was feeling feverish. I searched for a thermometer, but couldn't find one at my Granny's house. I called the pediatrician's office and after answering a series of questions from the nurse, she told me to take her in to the hospital. Vanderbilt is about 25 min. away so we took her there. She did have a small fever, but there biggest concern was her oxygen level. It at one point while we were in the ER dropped to the 60s and even to the 40s at one point. Because they knew she had a heart condition with what appeared to be some sort of infection, they began running tests. The cardiologist came down and checked her out and they decided to admit her to the hospital. The next day in the hospital would bring more tests run and the Vanderbilt doctors consulting with her Chattanooga doctors about there findings. At Vanderbilt, they found one more diagnosis with the echo that we did not know about. We knew from the Chattanooga doctors that she had an ASD and VSD (hole in the upper chambers and a hole in the bottom chambers). But at Vandy, they began looking for something else that was causing such high pressure in her lungs and they found it... Patent Ductus Arteriosus (PDA). Everyone has this in the womb it allows blood to bypass the baby's lungs by connecting the pulmonary arteries (which supply blood to the lungs) with the aorta (which supplies blood to the body). Soon after the infant is born and the lungs fill with air, this blood vessel is no longer needed. It will usually close within a couple of days. Well, hers didn't and was quite large. This was causing her to have too much blood going to her lungs causing the high pressure. They Doctor's decided to do the heart cath there at Vandy (she was supposed to have it done last Thursday in Chattanooga). It just made more sense since IF she was able to have surgery, it would be done at Vandy and they would need all this information anyway. So this means we got cathed a day earlier (last Wednesday). It was a nerve wracking wait. The Doctor had explained to me in detail all the risks in doing this procedure, especially with someone with such high pressures. The nurse called every so often to tell me how it was going, which is a huge help. Although, I would be lying if I didn't say every time the phone rang for me, I thought, this is it something went wrong and this is where they are going to tell me. They last update I got, the nurse kind of stalled because she was basically apologizing for the procedure taking 'so long' (I actually thought it was pretty quick; but maybe that is because I was watching the 'Jerry Springer' show happen in the waiting room with another family). It was like I could finally breath when she said Juliana was doing great and that they were finishing up and that the next call would be to go to the consultation room where the doctor would inform me what happened. The Doctor that performed the cardiac cath and the medical student that is following Juliana met me in the room and I was just holding my breath. I am seriously surprised I didn't pass out from lack of oxygen just from holding my breath while his computer booted up so he could show me the video of the procedure and give me his recommendation (surgery or no surgery). And when he told me he DID recommend her for surgery, I could then take a breath. That is when I started crying, I was so happy. He explained that it would be a BIG surgery and that he recommended doing it during this hospitalization. There is still time to do the surgery but that window is closing. The next day during rounds (I love that all the doctor's and nurses include you in this), I was informed that her surgery was scheduled for the next Thursday unless they could get her in on Tuesday. Dr. Mettler will be the surgeon. There was no reason clinically to keep us until this coming Thursday so they sent us home on oxygen (to keep her pressure in her lungs down). We will have surgery early Thursday morning. She could be in ICU for about a week and another 3 weeks in a room.
She is so much more active on oxygen. She makes more babbling sounds, smiles more, laughs more, eats faster and doesn't sweat, plays more, uses muscles more. I am very encouraged by this. I know we are not out of the woods yet, but I am so relieved that surgery is a go. I will most certainly miss Elena and Ezra on a daily basis, but in the long term this is a very short time.
So that is what has been going on in our world, which hopefully explains the lack of updates:/
We have been so INCREDIBLY BLESSED by a wonderful support system (our parents, our small group and extended church family, close friends, co-workers, even not so close friends). I mean I sometimes will just stop and really think about HOW MUCH we have been blessed by the kindness and generosity of others. People have given us money to help pay for the adoption, "stuff" to care for them, time by completing tasks for us that we just can't get to(like yard work), meals, and most of all love, encouragement, and prayers. We most certainly do not deserve ANY of it, but are most GRATEFUL and HUMBLED at this outpouring of love.
I will have my laptop this time when we are at the hospital so I will update as I can. It is sometimes just too emotionally draining to post, but I will try to keep updates coming.
Thank you for your prayers and encouragement
Kelly
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