We still have no teeth yet, but plan to start baby cereal before the end of the month. Hoping we can put the yucky antibiotic into the cereal and keep it down better/ more often.
Tuesday, November 16, 2010
Double Whammie - cold and pukes
Thank you to anyone still checking Cailynn's blog! I just wanted to give an update. We are 2 months from her surgery and she is doing fantastic! Her scar is smooth and we have not had any fevers. Even Dad and Mom are getting used to the role switcheroo. We do ask for continued prayer for Cailynn through this cold and flu season. Right now she is battling head congestion and a stomach bug at the same time. Makes for a cranky, fussy baby and tired, worried Mommy.
We still have no teeth yet, but plan to start baby cereal before the end of the month. Hoping we can put the yucky antibiotic into the cereal and keep it down better/ more often.
Happy Thanksgiving!!
We still have no teeth yet, but plan to start baby cereal before the end of the month. Hoping we can put the yucky antibiotic into the cereal and keep it down better/ more often.
Wednesday, October 20, 2010
Back to work!
Well, I've been officially back to work for 2.5 weeks now and thankfully Cailynn has been infection free! We had an ultrasound last Thursday followed by a visit to the urologist and everything looks great! We have an appointment in 6 months for another ultrasound, VCUG, and urologist. I was told that there is a slight possibility that the VU reflux could fix itself, so the doctor wants to give her some time and that's why we will have another VCUG. In 6 months time there should be some improvement, if there is going to be any. So now we just pray for the VU reflux to be healed because then she would not need another surgery!
As Trent is still unemployed, he took on the role of Mr. Mom when I went back to work. As far as I can tell, he and the 2 girls are surviving. He is also home when the 2 big kids get off the bus. This makes my day shorter because for the first time, I can come straight home from work! Trent has mastered the Beco carrier, bottle feeding, and diaper changing (cloth!). Most days when I come home the 2 year old is still in her jammies, laundry is scattered about, and leftover lunch is on the table (its not as easy as you think Dads!) He's doing a fantastic job and I am so glad he is able to be home with the baby because I cannot. I feel somewhat helpless though as I can't do much to help him out during the day, especially days like yesterday that were filled with crying and poop! This role reversal has given me a bit of an identity crisis as I see him do all "my" jobs. I feel somewhat useless..... I just try to remember that this is temporary.... and we are still figuring it all out!
As Trent is still unemployed, he took on the role of Mr. Mom when I went back to work. As far as I can tell, he and the 2 girls are surviving. He is also home when the 2 big kids get off the bus. This makes my day shorter because for the first time, I can come straight home from work! Trent has mastered the Beco carrier, bottle feeding, and diaper changing (cloth!). Most days when I come home the 2 year old is still in her jammies, laundry is scattered about, and leftover lunch is on the table (its not as easy as you think Dads!) He's doing a fantastic job and I am so glad he is able to be home with the baby because I cannot. I feel somewhat helpless though as I can't do much to help him out during the day, especially days like yesterday that were filled with crying and poop! This role reversal has given me a bit of an identity crisis as I see him do all "my" jobs. I feel somewhat useless..... I just try to remember that this is temporary.... and we are still figuring it all out!
Saturday, September 18, 2010
PRAISE GOD!!!
Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you. 1 Peter 5:6-7
Its been almost a week since Cailynn's surgery and I really want to thank everyone for your thoughts and prayers. The surgery itself went fantastic, according to the doc, and she is recovering/ healing nicely. I will let the pictures help tell the story, but want to thank Pastor Joe for giving of his time to keep us company during the 4 hours (only 4? felt like 40!!!) she was away from us. Thank you Pam, too :)
I need to thank my Mom, for so many things, but particularly for being there and keeping the 2 year old entertained, for visiting that night, for always being there when we need her.
We were in at 9:30 AM Monday morning, and went right to pre-op. Surgery was scheduled for 11:35. Answered a lot of questions, signed releases, asked some questions, and waited, and waited, and waited. A woman from the lab came up to draw blood :( Didn't get enough from the first vein, so had to stick her again, but got what she needed. Doc wass running late on another surgery, so it was 12:17 when they finally took her. It was heart wrenching to give her over to the nurse, but at least they carried her, and didn't wheel her away..
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| keeping big sister entertained in pre-op |
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| resting in Nana's arms before surgery |
They told us it was a 2- 2.5 hour procedure.... so after 3 hours, I asked for an update and was told they were closing. An hour later the Doc finally made his way out and told us she was in recovery. He said the surgery was textbook and that it couldn't have gone any better! I know God's hand was on his because it was a perfect surgery, he even said zero blood loss.... ??? She recovered well, and we got to meet her back in the room in the Almost Home unit. The nurses were familiar with us up there since I had spent a day and night there the week before. We were doubled up in a room at first, but around 7pm I asked if there was any way to get our own room (at the insistence of my hubby) and we did which made for a more restful night for both families. Cailynn slept on me all night. By this time all her leads and monitors were off, so I was only dealing with the IV and cath. Around midnight, during her IV antibiotic, her IV started to come out. The nurse tried to fix it, but lost it. OH, NO! I thought, and started praying again. They called the Doc and he just put her back on her oral antibiotic rather than put in a new IV - another prayer answered! THEN we rested.
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| after recovery |
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| still a little drugged.... |
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| back with mom... |
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| and dad |
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| incision site bandaged |
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| sooooo relieved |
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| IV, catheter, drainage tube, leads, O2 monitor, blood pressure cuff... I didn't know how to pick her up! |
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| Slept all night in mommy's arms, and most of Tues too. |
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| feeling better, more like my baby |
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| 2 inch incision on right side |
We got to go home Tuesday evening. She has been pretty comfortable, just needing pain meds around 4-5 in the evening. It looks like her incision is healing nicely, no sign of infection. She starts new meds tomorrow, and we are hoping she will be able to stay infection free for a long while.
Sunday, September 5, 2010
2nd worst day of my life
First of all, I want to say that I am writing this from home and not the hospital. For which I am so thankful. Second, Cailynn's surgery is Monday, September 13th, don't know the time yet. We have been working hard to be infection free until then.
Now for the "2nd worst day ever" part....
We have been using the PICC (peripherally inserted central catheter) line (that was started in the beginning of August during our second hospitalization) to administer Cailynn's antibiotics at home. It was pretty much smooth sailing, at home anyway, with the IV antibiotics. Then this past Thursday night, when I went to give her the 9pm dose, the saline flush just leaked out all over and was dripping from her arm, so I called the Home Health Care (HHC) nurse and she came out at like 10:30pm to see what was wrong and try to fix it. We had hoped it was just the connector piece that had come loose, but it wasn't. The line had a hole and was leaking. The HHC nurse called into the hospital to IV therapy and asked if there was any way to save the line and was told, no. So she called our doctor and got orders for us to go to the hospital the next morning at 10:30am to get a new PICC line put in. OK, no big deal really. We were supposed to be leaving for a long weekend in Erie, but maybe we will just leave a little later than planned, and with a brand new PICC and dressing so I'll have nothing to worry about..... or so I thought.
So Friday morning I took myself and Cailynn to the hospital and checked in to the Almost Home unit. We were told to be NPO (no more eating for the baby) after 10am. Of course, the IV therapy team was running behind, so they didn't come in til about 2pm. Before putting in the PICC, they have to start a peripheral IV to administer the sedation medication so Cailynn would not feel anything and would be calm for the PICC procedure. I was told that I was not going to be able to come with her to the treatment room when they did the PICC procedure, which I was not OK with and I made my feelings known. Eventually the IV therapist relented and said I could accompany her, but had to sit to the side during the procedure, but I could be in the room, so that was ok with me. Good thing too, because well..... it didn't go so well. Two IV therapists tried for 2 hours to get an IV started on her. They made 5 attempts where they actually put a needle in her, including one on her head!, all of them failures. At this point the poor baby had been crying for hours and hadn't eaten in 6 hours. The IV therapists were apologetic, and kept saying "this never happens." Our options were try to get orders for an oral sedation medication- which would take another 45 -60 minutes to start working, more time before she could eat. OR, we could go ahead with the PICC placement without sedation and be done in less than 45 minutes and she could be eating again. I went with the quicker route and the PICC was placed without sedation, but she was so tired from crying, that she mostly slept through the whole procedure anyway!
Finally it was done, we just needed to wait for our turn at the x-ray lab so they could check the placement of the line. So another hour wait, then x-ray, then wait for results. Results were not good. The line had curled around her shoulder so they needed to adjust it. By this time the IV therapist was not willing to keep going at this alone so she got a doctor to adjust the line and they did it under fluoroscope (a video x-ray). It took like what seemed forever and poor Cailynn screamed the whole time. It did not hurt her, but they had to hold her down and immobilize her arm, and she really hated that. My mom had come to stay with us after work so when we were done she brought us home. It was 7:30pm.
At 9pm I got her antibiotic ready but when I went to flush the line with saline, nothing happened. I could not get anything to go through the line. So I called the HHC nurse again and she called the hospital and after talking to them she recommended that I go back to the hospital and have them check it. So at 11pm I was back in the hospital. The same IV therapist had stayed past her shift to check out Cailynn's line. Long story short, she found a hole in the line and pulled it. That's 2 holes in 2 days. She said she goes 5 months and doesn't see one hole in a PICC line. Lucky, lucky us. Everything we had gone through that day and the result was NOTHING. I honestly felt something against us all day. I had prayed so hard, called all my prayer warrior friends and continued to watch my baby suffer.
The IV therapist called our doctor and we were told we needed to stay and spend the night so they could try again in the morning. At his point I finally conceded defeat and realized our little family getaway wasn't going to happen. I was broken and tired and done. At 2am the night IV therapist came to try again to get an IV started so Cailynn could get her medsmeds in the morning. But surprise, surprise! Couldn't get it! She was merciful though and only tried once, the only one left I suppose. So we went back to our room, Cailynn slept on my chest while I dozed in the chair, not really knowing what the morning would bring...
So then it was Saturday morning and as far as I knew, the plan was still to try and put in another PICC. No one wanted Cailynn or me to suffer any more. That was a huge consideration when discussing the next move, second only to her health. She needs to finish the treatment of her last infection, and we are desperately trying to keep her free of infection til her scheduled surgery.
Finally our doctor came and we started discussing our options.
1. Try another PICC. The problem was getting her sedated and that was the problem the day before. She could finish her antibiotics, but no guarantee she won't get another infection before the 13th. AND inserting another foreign body into her came with a risk of infection.
2. Put in a central line. That would require a visit to the operating room where a surgeon would place a catheter in a main vein near her neck or shoulder. It would be accessed at her chest and it would be in place as long as we wanted it. She would not need any more needles because they could draw blood from it, administer meds and fluids, and the anesthesiologist could use it too for her surgery next week. She would go under general anesthesia (gas) so no need to get an IV line started. Its pretty invasive for 5 more days of IV antibiotics, but I was leaning that way because of how much IV stuff she had already received and how many more times she is likely to have to have IV access in the near future. (I count 2 times in the next 10 days without counting the IV antibiotics). Again, she could finish her antibiotics, but no guarantee she won't get another infection before the 13th. AND inserting another foreign body into her came with a risk of infection. The doctors felt we had kinda pushed the limits of that already that day.
3. Try an oral antibiotic. The problems with oral antibiotics is that she doesn't always take them well (spit up, puke up or just push out of her mouth) and the bacteria we are fighting needs a really strong antibiotic and the doctor didn't know if there was even one we could use for such a young baby.
So we discussed this with the doctor. He went off to talk to the infectious disease doctors to see if there was something we could take orally to fight this bacteria. I was still leaning toward the central line, just because if we could do that and never have to torture her again with another IV it would be so worth it to me but Trent was more concerned about the invasiveness of it and wanted to take a more conservative route..... Then the doctor came back and proposed we put her on Cipro. It isn't indicated for babies under 1 yr old, but there are twins in the NICU who were on it because of bad infection so the infections disease doctors, the pharmacist, and our doctor felt that the drug could be used with our baby. The selling point to me was that she could be on the Cipro til her surgery date almost guaranteeing that she would not get another infection before that date. We got it flavored grape, praying it would be more palatable and she would tolerate it better. She will still need to get IVs, but the doctor wants them to try once she is under general anesthesia and if they still have so much trouble even when she is still, then they can consider putting in the central line while she is already in surgery. That option got us out of the hospital that day, without any more "trauma" for the baby (or mommy!).
So we finally came home about 4pm. And as the other kids were with my Mom, baby and I spent the rest of the day napping. She seems to take the Cipro OK, so I am encouraged that we will be able to have surgery on schedule. Hopefully there is no need for more blog updates til then!
Now for the "2nd worst day ever" part....
We have been using the PICC (peripherally inserted central catheter) line (that was started in the beginning of August during our second hospitalization) to administer Cailynn's antibiotics at home. It was pretty much smooth sailing, at home anyway, with the IV antibiotics. Then this past Thursday night, when I went to give her the 9pm dose, the saline flush just leaked out all over and was dripping from her arm, so I called the Home Health Care (HHC) nurse and she came out at like 10:30pm to see what was wrong and try to fix it. We had hoped it was just the connector piece that had come loose, but it wasn't. The line had a hole and was leaking. The HHC nurse called into the hospital to IV therapy and asked if there was any way to save the line and was told, no. So she called our doctor and got orders for us to go to the hospital the next morning at 10:30am to get a new PICC line put in. OK, no big deal really. We were supposed to be leaving for a long weekend in Erie, but maybe we will just leave a little later than planned, and with a brand new PICC and dressing so I'll have nothing to worry about..... or so I thought.
So Friday morning I took myself and Cailynn to the hospital and checked in to the Almost Home unit. We were told to be NPO (no more eating for the baby) after 10am. Of course, the IV therapy team was running behind, so they didn't come in til about 2pm. Before putting in the PICC, they have to start a peripheral IV to administer the sedation medication so Cailynn would not feel anything and would be calm for the PICC procedure. I was told that I was not going to be able to come with her to the treatment room when they did the PICC procedure, which I was not OK with and I made my feelings known. Eventually the IV therapist relented and said I could accompany her, but had to sit to the side during the procedure, but I could be in the room, so that was ok with me. Good thing too, because well..... it didn't go so well. Two IV therapists tried for 2 hours to get an IV started on her. They made 5 attempts where they actually put a needle in her, including one on her head!, all of them failures. At this point the poor baby had been crying for hours and hadn't eaten in 6 hours. The IV therapists were apologetic, and kept saying "this never happens." Our options were try to get orders for an oral sedation medication- which would take another 45 -60 minutes to start working, more time before she could eat. OR, we could go ahead with the PICC placement without sedation and be done in less than 45 minutes and she could be eating again. I went with the quicker route and the PICC was placed without sedation, but she was so tired from crying, that she mostly slept through the whole procedure anyway!
Finally it was done, we just needed to wait for our turn at the x-ray lab so they could check the placement of the line. So another hour wait, then x-ray, then wait for results. Results were not good. The line had curled around her shoulder so they needed to adjust it. By this time the IV therapist was not willing to keep going at this alone so she got a doctor to adjust the line and they did it under fluoroscope (a video x-ray). It took like what seemed forever and poor Cailynn screamed the whole time. It did not hurt her, but they had to hold her down and immobilize her arm, and she really hated that. My mom had come to stay with us after work so when we were done she brought us home. It was 7:30pm.
At 9pm I got her antibiotic ready but when I went to flush the line with saline, nothing happened. I could not get anything to go through the line. So I called the HHC nurse again and she called the hospital and after talking to them she recommended that I go back to the hospital and have them check it. So at 11pm I was back in the hospital. The same IV therapist had stayed past her shift to check out Cailynn's line. Long story short, she found a hole in the line and pulled it. That's 2 holes in 2 days. She said she goes 5 months and doesn't see one hole in a PICC line. Lucky, lucky us. Everything we had gone through that day and the result was NOTHING. I honestly felt something against us all day. I had prayed so hard, called all my prayer warrior friends and continued to watch my baby suffer.
The IV therapist called our doctor and we were told we needed to stay and spend the night so they could try again in the morning. At his point I finally conceded defeat and realized our little family getaway wasn't going to happen. I was broken and tired and done. At 2am the night IV therapist came to try again to get an IV started so Cailynn could get her medsmeds in the morning. But surprise, surprise! Couldn't get it! She was merciful though and only tried once, the only one left I suppose. So we went back to our room, Cailynn slept on my chest while I dozed in the chair, not really knowing what the morning would bring...
So then it was Saturday morning and as far as I knew, the plan was still to try and put in another PICC. No one wanted Cailynn or me to suffer any more. That was a huge consideration when discussing the next move, second only to her health. She needs to finish the treatment of her last infection, and we are desperately trying to keep her free of infection til her scheduled surgery.
Finally our doctor came and we started discussing our options.
1. Try another PICC. The problem was getting her sedated and that was the problem the day before. She could finish her antibiotics, but no guarantee she won't get another infection before the 13th. AND inserting another foreign body into her came with a risk of infection.
2. Put in a central line. That would require a visit to the operating room where a surgeon would place a catheter in a main vein near her neck or shoulder. It would be accessed at her chest and it would be in place as long as we wanted it. She would not need any more needles because they could draw blood from it, administer meds and fluids, and the anesthesiologist could use it too for her surgery next week. She would go under general anesthesia (gas) so no need to get an IV line started. Its pretty invasive for 5 more days of IV antibiotics, but I was leaning that way because of how much IV stuff she had already received and how many more times she is likely to have to have IV access in the near future. (I count 2 times in the next 10 days without counting the IV antibiotics). Again, she could finish her antibiotics, but no guarantee she won't get another infection before the 13th. AND inserting another foreign body into her came with a risk of infection. The doctors felt we had kinda pushed the limits of that already that day.
3. Try an oral antibiotic. The problems with oral antibiotics is that she doesn't always take them well (spit up, puke up or just push out of her mouth) and the bacteria we are fighting needs a really strong antibiotic and the doctor didn't know if there was even one we could use for such a young baby.
So we discussed this with the doctor. He went off to talk to the infectious disease doctors to see if there was something we could take orally to fight this bacteria. I was still leaning toward the central line, just because if we could do that and never have to torture her again with another IV it would be so worth it to me but Trent was more concerned about the invasiveness of it and wanted to take a more conservative route..... Then the doctor came back and proposed we put her on Cipro. It isn't indicated for babies under 1 yr old, but there are twins in the NICU who were on it because of bad infection so the infections disease doctors, the pharmacist, and our doctor felt that the drug could be used with our baby. The selling point to me was that she could be on the Cipro til her surgery date almost guaranteeing that she would not get another infection before that date. We got it flavored grape, praying it would be more palatable and she would tolerate it better. She will still need to get IVs, but the doctor wants them to try once she is under general anesthesia and if they still have so much trouble even when she is still, then they can consider putting in the central line while she is already in surgery. That option got us out of the hospital that day, without any more "trauma" for the baby (or mommy!).
So we finally came home about 4pm. And as the other kids were with my Mom, baby and I spent the rest of the day napping. She seems to take the Cipro OK, so I am encouraged that we will be able to have surgery on schedule. Hopefully there is no need for more blog updates til then!
Tuesday, August 24, 2010
so done with this...
I apoligize for not keeping you up to date. We came home after our last hospitalization with a PICC line in and directions to administer IV antibiotics. Sunday 8/15 was our last dose of IV antibiotic and the home care nurse was to come on Monday and remove the PICC line. Sunday I was looking forward to getting that thing out. By Monday at our visit to the pediatrician, I had seriously considered asking if we could keep the line in for a few weeks, in case we ended up back in the hospital. Then they wouldn't have to put in a new IV line. Call it mother's instinct or a whisper from God, but I listened.
And thankfully so. We were back in Children's Emergency on Saturday night because of fever. And no surprise, were admitted for UTI. We are now up to 3 hospitalizations in her short, 11 week life. I haven't written because I just don't know what to say anymore. Same drill really. IV antibiotics, have to stay until fever is gone for 24 hours and culture has grown. Someone coming in every other hour to poke or prod or bother Cailynn in some way. I've gone from being afraid, unsure, overwhelmed at our first stay, to an "old pro" this time. We've run into doctors and nurses from previous visits that still remember her name. Not sure if its because its only been 2 weeks since we were here last, or because she is so memorable in her cuteness!
Talked to the uroligist yesterday, and after asking my million questions that all boil down to, "Why does this keep happening?" have come to the realization that we will be back, probably in a couple more weeks, and will keep coming back until she is able to have her "big" surgery to correct her "plumbing." So more tests will be ordered...
(later......) Just heard from the nurse that we have been scheduled for an MRI at 9pm tonight, so I guess we are not going home today. She will be sedated and she will need another IV put in because they cannot put the contrast fluid through her PICC line. She also has to be NPO for 4 hours, so no more breastfeeding after 5pm. This will be rough as her fussy time is between 7-10pm. But we will make it through because we have to. I'm upset she has to have another IV line, I know how much that hurts her, but what can I do??? We just have to endure, deal with whatever comes up, and keep trusting God. Can't say its as easy as it was at first. Both Trent and I are getting emotionally worn out over the whole condition.
Thank you for being interested enough in our lives, in her life, to continue to read her blog. Thank you for your continued prayers.... don't really know what else to say....
And thankfully so. We were back in Children's Emergency on Saturday night because of fever. And no surprise, were admitted for UTI. We are now up to 3 hospitalizations in her short, 11 week life. I haven't written because I just don't know what to say anymore. Same drill really. IV antibiotics, have to stay until fever is gone for 24 hours and culture has grown. Someone coming in every other hour to poke or prod or bother Cailynn in some way. I've gone from being afraid, unsure, overwhelmed at our first stay, to an "old pro" this time. We've run into doctors and nurses from previous visits that still remember her name. Not sure if its because its only been 2 weeks since we were here last, or because she is so memorable in her cuteness!
Talked to the uroligist yesterday, and after asking my million questions that all boil down to, "Why does this keep happening?" have come to the realization that we will be back, probably in a couple more weeks, and will keep coming back until she is able to have her "big" surgery to correct her "plumbing." So more tests will be ordered...
(later......) Just heard from the nurse that we have been scheduled for an MRI at 9pm tonight, so I guess we are not going home today. She will be sedated and she will need another IV put in because they cannot put the contrast fluid through her PICC line. She also has to be NPO for 4 hours, so no more breastfeeding after 5pm. This will be rough as her fussy time is between 7-10pm. But we will make it through because we have to. I'm upset she has to have another IV line, I know how much that hurts her, but what can I do??? We just have to endure, deal with whatever comes up, and keep trusting God. Can't say its as easy as it was at first. Both Trent and I are getting emotionally worn out over the whole condition.
Thank you for being interested enough in our lives, in her life, to continue to read her blog. Thank you for your continued prayers.... don't really know what else to say....
Tuesday, August 10, 2010
Plan for the day.... GO HOME!
We don't really know what is next for her, and I didn't really want to ask yesterday. I just want to get through this experience and we will find out what is next at our next doctor visit.She spent a few hours after the procedure hooked up to monitors and IV fluids, but was off of them shortly after lunch. Thanks to friends, Mom and Dad were together for the procedure and when she returned. It was probably the most time we have spent together all week! Cailynn spend the rest of the day mostly in Mom's arms nursing and sleeping.
It seemed like last night lasted forever, but here it is, almost 6am and I am in the final countdown! I expect today to consist of long periods of boredom interrupted by bursts of flurry and activity as the different doctors and hospital people come to get everything set up for us to go home. Because of the IV antibiotics she must be on for another 10 days, we need to coordinate the home health care before we can be discharged. While I'd love to be out of here as soon as possible, I'm shooting for dinner at home.
I just want to thank those of you nearby who were able to come visit us during our stays in the hospital. I really appreciated your company and support. And to each of you who thought of us during your busy day, Thank you. It helped a lot to know we had a lot of people all over the country, and even the world, thinking of us and praying for us. I hope to not have to update this blog again soon for anything other than a doctor visit.
Sunday, August 8, 2010
Saturday, August 7, 2010
Day 3...I think?
Got the PICC line in by noon. First x-ray showed it needed some adjustment so the IV therapist came back & readjusted the line. Second x-ray showed it was good enough. Apparently she doesn't have very good veins. Poor baby went though a lot to get the PICC line it, including getting doped up with morphine and Versed. She is a very squirmy baby and even with the pain killers and sedative, she was still pretty wiggly. I was glad that I got to be with her during the procedure. With the PICC line in, we should be able to come home after the surgery. The hospital will then send a home nurse to our house to administer the IV antibiotics and change the dressing. I still need more info on how exactly that will work, but glad to hear that we don't have to be in the hospital for 2 weeks!
The big kids left for Disney World with Nana and Pop-pop today. I was sad this morning as I thought of them leaving...wishing we could all be going together. But I know that they will have a great time, and it will be easier for Trent to just have one at home. And that means less for me to worry about too.
We had visitors today! Trent and Carissa came by for at least 3 hours and then my friend Amy came and brought me twizzlers! :) I am so thankful for our family, friends and church for all the prayers and support. It is comforting to know that when I am too tired or overwhelmed to pray, so many of you are interceding for us.
The big kids left for Disney World with Nana and Pop-pop today. I was sad this morning as I thought of them leaving...wishing we could all be going together. But I know that they will have a great time, and it will be easier for Trent to just have one at home. And that means less for me to worry about too.
We had visitors today! Trent and Carissa came by for at least 3 hours and then my friend Amy came and brought me twizzlers! :) I am so thankful for our family, friends and church for all the prayers and support. It is comforting to know that when I am too tired or overwhelmed to pray, so many of you are interceding for us.
Friday, August 6, 2010
We're back!
I am writing this from our 3rd night in a hospital room in Children's again. Cailynn had a fever last Monday night so we had to cancel her surgery on Tuesday. The fever went away for most of Tuesday, but Tuesday night it went up again so Wednesday we came back to ER. They did not have to do a spinal tap this time because of her age and her history, quite a relief for us! The blood test came back fine, but they didn't even have to send out the urine before we were pretty sure we were going to be staying. It was cloudy, like last time, which indicated an infection. Another IV block was put in as we waited for the urine test to come back. I had anticipated the likelihood that we would be staying so I packed an overnight bag.
We got up to our closet of a room about 8:30pm at which time Cailynn seemed to be in a lot of pain and crying. I got her calmed and asleep by 10 pm and had a decent night. During the morning exam the doctor thought baby's lower abdomen was swollen so ordered an ultrasound to check for a hernia. Fortunately no hernia!!!
We were supposed to leave for a family vacation to Flordia/ Disney World on Saturday. I was still hoping that we could make it, even if a couple days late. But later that day we got the good/ bad news. Good news - our surgery was reschdeuled for Monday! Bad news - we will have to miss our vacation. We were incredibly dissapointed (it would have been Trent's first visit!) but obviously Cailynn's health comes first. And I don't think Mickey is going anywhere....
Once we got that news, and that we were going to be here til after the surgery, I requested a bigger room! The urologist ordered a folley catheter to relieve pressure on the uerterocele and in order to keep things clear in her bladder to reduce chance of infection. Later in the day we got a nice, big room!
Day 2 -
After a night in the big room with the big couch/bed, we got our next batch of good news/ bad news. The urine cultures had begun to grow, but what there were growing was a bacteria uncommonly found in the urinary tract (Pseudomonas). So our antibiotics were changed. But because of the bacteria and because of her age, the antibiotic therapy for her will be 2 weeks of IV antibiotics. After digesting the idea that we would have to be here for 2 weeks, the doctors started talking about putting a PICC line in Cailynn to replace the IV block. The IV only lasts an average of 3-4 days. A PICC line is a very small, flexible tube that they put in her vein and thread to the vena cava. It is more permanent IV line, so that they don't have to keep poking her and putting in new IVs.
They give her a sedative to put in the PICC line so we were told we couldn't nurse 4 hours prior to the procedure. I was told to stop nursing at 2pm because the procedure was scheduled for 6pm. But the IV therapists were called of to a couple different emergencies in the hospital and our procedure was postponed twice before they came in and cancelled it for today and let me feed the baby (almost 6 hours!)
The IV nurse came back tonight and talked to me and plans to have Cailynn first on the list for tomorrow. Tomorrow's nurse arrives at 9am and she told me we can nurse until then. Apparently the first nurse had planned on using versa and morphine as a sedative, but the nurse tonight didn't see why they needed the morphine, so we didn't have to be NPO for 4 hours. That was a relief.
So now its almost 11pm, 2 more hours til her next round of antibiotics. Praying the IV line she has in now is still good... then maybe some sleep. Tomorrow morning we will have the PICC line put in, x-ray to confirm placement, and then maybe take a walk around the hospital since they will let us off the floor.
Good night...
We got up to our closet of a room about 8:30pm at which time Cailynn seemed to be in a lot of pain and crying. I got her calmed and asleep by 10 pm and had a decent night. During the morning exam the doctor thought baby's lower abdomen was swollen so ordered an ultrasound to check for a hernia. Fortunately no hernia!!!
We were supposed to leave for a family vacation to Flordia/ Disney World on Saturday. I was still hoping that we could make it, even if a couple days late. But later that day we got the good/ bad news. Good news - our surgery was reschdeuled for Monday! Bad news - we will have to miss our vacation. We were incredibly dissapointed (it would have been Trent's first visit!) but obviously Cailynn's health comes first. And I don't think Mickey is going anywhere....
Once we got that news, and that we were going to be here til after the surgery, I requested a bigger room! The urologist ordered a folley catheter to relieve pressure on the uerterocele and in order to keep things clear in her bladder to reduce chance of infection. Later in the day we got a nice, big room!
Day 2 -
After a night in the big room with the big couch/bed, we got our next batch of good news/ bad news. The urine cultures had begun to grow, but what there were growing was a bacteria uncommonly found in the urinary tract (Pseudomonas). So our antibiotics were changed. But because of the bacteria and because of her age, the antibiotic therapy for her will be 2 weeks of IV antibiotics. After digesting the idea that we would have to be here for 2 weeks, the doctors started talking about putting a PICC line in Cailynn to replace the IV block. The IV only lasts an average of 3-4 days. A PICC line is a very small, flexible tube that they put in her vein and thread to the vena cava. It is more permanent IV line, so that they don't have to keep poking her and putting in new IVs.
They give her a sedative to put in the PICC line so we were told we couldn't nurse 4 hours prior to the procedure. I was told to stop nursing at 2pm because the procedure was scheduled for 6pm. But the IV therapists were called of to a couple different emergencies in the hospital and our procedure was postponed twice before they came in and cancelled it for today and let me feed the baby (almost 6 hours!)
The IV nurse came back tonight and talked to me and plans to have Cailynn first on the list for tomorrow. Tomorrow's nurse arrives at 9am and she told me we can nurse until then. Apparently the first nurse had planned on using versa and morphine as a sedative, but the nurse tonight didn't see why they needed the morphine, so we didn't have to be NPO for 4 hours. That was a relief.
So now its almost 11pm, 2 more hours til her next round of antibiotics. Praying the IV line she has in now is still good... then maybe some sleep. Tomorrow morning we will have the PICC line put in, x-ray to confirm placement, and then maybe take a walk around the hospital since they will let us off the floor.
Good night...
Tuesday, August 3, 2010
sick baby, surgery postponed
Yesterday evening, Cailynn got a fever. She was feverish and cranky throughout the night. I was up with her a few times throughout the night and she had some vomiting. Sounds exactly like the virus her sisters had last week, so I am assuming that is the case. I called the urologist and they had to cancel and reschedule her procedure. Its scheduled for October 3rd, but we were put on a cancellation list so hope to get in this month still. We really don't want to go through the ER stuff again, so hopefully by this time tomorrow she is doing better.
Thank you for your continued prayers. The unpredictable nature of all this has taken a toll on both Mom and Dad.
Thank you for your continued prayers. The unpredictable nature of all this has taken a toll on both Mom and Dad.
Monday, August 2, 2010
countdown to surgery #1
We finally heard from the surgical department at Children's Hospital. Cailynn's surgery is scheduled for 3:45pm tomorrow. We need to be there 2 hours before to check in and do pre-op. Because the paperwork we received said no more breastfeeding 8 hours before surgery, I was eager to talk to someone at the hospital because that was just not going to work. At first the nurse that called said we couldn't nurse after 9:45am - 6 hours without nursing a 2 month old!!! I burst into tears. He was very nice about it all, but I was still upset. I had done research on the internet and found out that many Children's Hospitals have a 3-4 hour cut off and I was so hoping that we could use that. Shortly after hanging up with the nurse, he called back saying that he checked with the anesthesiologist and they gave us 2 extra hours, so we can nurse til 11:45. I was so relieved!!! I also found out that once we check in, Cailynn will be given a "cocktail" sedative and then taken back to the surgery room. They will give her gas to knock her out and put the IV in after she is unconscious. After our experience in the ER, that was a relief. I was also told that we can nurse immediately after she wakes up in recovery. We will be admitted for overnight observation because of her age, but should be able to leave Wednesday as soon as the Doctor sees and releases her.
Thursday, July 22, 2010
There and back again
I think I left off on the last post while we were waiting to be released from the Hospital. Well, we did get to go home on Monday evening. It is now Thursday. The first 2 days home were really rough. Cailynn was super cranky and cried most of Monday night and Tuesday. Wednesday was better, as she took longer naps during the day and didn't cry so very much, but still wouldn't let me put her down. Last night we were blessed with a "normal" night and today I have my baby back!! She is back to her regular eat, sleep, wake, cry patterns and lets me put her down occasionally.
Tuesday was our first visit to the ENT to check our the cyst in her mouth. We were relieved to hear that it poses no problems right now, so the plan is to check back in 6 months.
Wednesday was the first day in a while that we didn't have to see doctors, so we just enjoyed a day off.
And that brings us to today. We went back to the urologist at Children's. He reviewed the DMSA scan (done Monday, pictures posted) and reviewed her hospital stay information. The scan did reveal that the right kidney has much poorer function than the left one, but beyond that, the radiologist's interpretation is more subjective than objective in our case. We were told the scan showed the left kidney functioning at about 73% and the right at 27%.
In light of her infection and to help keep her from getting more, she will be having surgery the first week of August. In this surgery, the doctor will use a scope and burn a hole in the uereterocele to drain it. This should help decrease the VU reflux which in turn will help to keep her free of infection. The dangerous part of this surgery is the general anesthesia she will undergo at a mere 8 weeks old. It is a 45 - 60 minute procedure, but because of the anesthesia, we will have to stay overnight. It goes without saying that she will need another IV - probably the most traumatic and painful part of the whole procedure this time!! We are just waiting to hear what day the surgery will be scheduled for.
As I sit here and write so clinically about what is going on, I am trying to sort out my feeling about all this. We say we are trusting God with all this, but I am unsure exactly what that "looks" like. Sometimes I feel like a robot, just doing what we need to do, going through the motions and saving all my own thoughts and feelings about it for some other time....??
Give all your worries and cares to God, for he cares about you. 1 Peter 5:7
Tuesday was our first visit to the ENT to check our the cyst in her mouth. We were relieved to hear that it poses no problems right now, so the plan is to check back in 6 months.
Wednesday was the first day in a while that we didn't have to see doctors, so we just enjoyed a day off.
And that brings us to today. We went back to the urologist at Children's. He reviewed the DMSA scan (done Monday, pictures posted) and reviewed her hospital stay information. The scan did reveal that the right kidney has much poorer function than the left one, but beyond that, the radiologist's interpretation is more subjective than objective in our case. We were told the scan showed the left kidney functioning at about 73% and the right at 27%.
In light of her infection and to help keep her from getting more, she will be having surgery the first week of August. In this surgery, the doctor will use a scope and burn a hole in the uereterocele to drain it. This should help decrease the VU reflux which in turn will help to keep her free of infection. The dangerous part of this surgery is the general anesthesia she will undergo at a mere 8 weeks old. It is a 45 - 60 minute procedure, but because of the anesthesia, we will have to stay overnight. It goes without saying that she will need another IV - probably the most traumatic and painful part of the whole procedure this time!! We are just waiting to hear what day the surgery will be scheduled for.
As I sit here and write so clinically about what is going on, I am trying to sort out my feeling about all this. We say we are trusting God with all this, but I am unsure exactly what that "looks" like. Sometimes I feel like a robot, just doing what we need to do, going through the motions and saving all my own thoughts and feelings about it for some other time....??
Give all your worries and cares to God, for he cares about you. 1 Peter 5:7
Monday, July 19, 2010
Long days, longer nights
Well, its Monday, Day 3 in the hospital (technically day 4 if you count the day down in ER, and WE DO!) No more fever since Friday night, so the past two days have been uneventful, just waiting. The cultures came back as expected; nothing grew in blood or spinal fluid, but negative gram rods grew in urine, confirming the infection, The absence of bacteria in her blood and spinal fluid means that the infection did not spread to other parts of her body. The first overnight, both baby and Mom slept well, due to exhaustion. The second overnight wasn't as good with baby really fussy and clingy, but we made it through, despite the frequent pokes and prods from the nurse every 2 hours or so! Last night was better. Cailynn was not so fussy, but still only slept on Mom, so I slept better, but by far not well. But Moms are used to functioning on little sleep so its no big deal really.
Which brings us to today. The plan is to be home by dinner. The DMSA scan (kidney function test) was ordered for today, but not yet scheduled. I was told they usually do inpatient testing in the morning, so hopefully we will know by 9am when we go. There is a 2 hour wait time between the injection and the imaging. We also expect our urologist to come by today too. He's got the final word on our discharge, but the doctors here don't see any reason to keep her here longer.
Hopefully our next post will be from home!!
Saturday, July 17, 2010
4 dolphins...
Well, this weekend isn't going as I had planned!! Thursday afternoon, after the big kids came back from VBS, Trent took us out to Englewood Metropark for a hike. We saw lots of bugs and wildflowers and even a couple of Blue Angel jets practicing! It was a really nice family day.
That evening, as I was getting Cailynn ready for bed, she felt hot to me so I took her temp. It was 101.4 I gave her some Tylenol and in an hour, her temp had dropped, so we went to bed. She stayed ok through the night, but started getting hot again in the morning, so when we got up at 8am, I took her temp again and it was 100.5 Thankful it was Friday and not Saturday, I called and left a message for our pediatrician. They called back in a few hours and told us that, because of her age (6 weeks) and her kidney/ urinary tract issues, we needed to take her to Dayton Children's hospital ER.
Obviously this is not what we wanted to hear, and we had mixed feelings about it. We didn't want to get there, wait 6 hours to see a doctor, be give a Rx and sent home $100 poorer, but we didn't want to take any chances with her health either. Honestly, I thought she'd get a urine test and depending on the results, we'd leave with new medicine or be told she just has a virus. We were not aware how serious it is for a baby this young (under 8 weeks) to have an infection. Apparently, since her immune system is still so underdeveloped, it is very easy for an infection to get septic quickly, go to her brain and cause brain injury/ death!
We got to ER at 11:30 and were seen almost immediatly be the ER doc. Thats when we got our first shocker of the day! The doctor ordered blood tests, a urine test, and spinal tap! I think we all cried throughout the whole ordeal. First they tried to get the urine, but as they were inserting the catheter, she peed, so they had to try again later. Then they brought out the needled for the blood draw and IV block. They tied off all both arms and legs looking for a good vein (any vein, by the sound of it!) before trying one of her arms. It didn't work, so they called another nurse in to try. It seemed to take forever, but she got the IV block in. I think we had 10-15 minutes to regroup before the phelobotomist came back to draw blood. It took 2 sticks to get the amount he needed because the first one clotted. Pretty quickly after that the doctor came back to get the spinal fluid. We were not allowed to hold/ touch her during the procedure. That, and hearing her cries of pain, was emotional torture!
Once they got everything they needed from her, it just became a waiting game. The tests were to take about a half hour, we were told. So we waited. Cailynn finally had a chance to nurse and sleep, held tightly by Mommy. We recieved the test results when expected, but not what we expected.
Blood and spinal fluid came back good. Urine didn't look so good, indicated a urinary tract infection. Despite the amoxicillian she has been on since birth, an infection got through. We then got our second shocker. She was going to be admitted to the hospital and we have to stay 2-3 days. They put her on some different antibiotic and we couldn't leave until the blood, spinal fluid, and urine cultures came back, 48 hours. So we just waited to be admitted. And waited, and waited. Finally Trent went to get some lunch at 3pm. And at 5pm someone from admission came and took us to our room. There is a painting of 4 dolphins in our room, hence the title of this blog (since "A Day in the ER" sounds boring!)
The rest of the evening was spent recouperating from the day. Cailynn slept and nursed a lot. Mom and Dad rested and prayed, contacted family and friends, and even had a few visitors.
Baby and Mom slept well through the night. Dad slept at home. The rest of the kids slept at Nana's house.
Sunday, July 11, 2010
One month, one week, & one day old.
These commandments that I give you today are to be upon your hearts. Impress them on your children. Talk about them when you sit at home and when you walk along the road, when you lie down and when you get up. Deuteronomy 6:6-7
I was just going to use this blog to keep friends and family and anyone else joining us in prayer over our baby up to date on her condition, medical procedures, doctor appointments, etc. But it dawned on me today that I cannot separate her physical journey in this world from her spiritual journey. This babe has had praying hands laid on her since she was in the womb. She has been covered by prayer since before she was born. Every time we are faced with scary medical tests/ procedures, every time we take a moment to think about the surgeries she faces, perhaps 2 even before her first birthday and are overwhelmed with fear and sadness, we gently place her in God's hands. He created her, He knows her future.
Today we had Cailynn dedicated in church. Usually I wait until the babies are a bit bigger, but I don't know what is in our future so I thought the sooner the better in her case. Every other Sunday at church, Cailynn sleeps quietly almost the whole service. Today, she was quiet but alert until the singing stopped. Then she got fussy, and by the time Pastor Joe got her, she was out-right furious!!! Oh well...
Here are a couple of pictures off my camera (the family one is not so great!). Hopefully my friend got some better ones on her camera!
And this is at the church picnic later that afternoon "eyes open!" as her big sister would say!
Friday, July 9, 2010
A busy week, medically speaking.
Monday morning found us at two different doctors; Cailynn, Corinne and I at the pediatrician, and CJ, Carissa and Trent at the orthodontist for CJ. Cailynn had her 1 month check-up. She is now a whopping 10 pounds!!! and grew an inch too. Really glad to see that she is growing well, though I wouldn't have minded her staying little just a bit longer! The Doctor heard a heart murmur during his examination and referred us to a cardiologist for an electrocardiograph. I know a lot of babies have a heart murmur (I had one, Corinne had one) but because the kidneys and heart develop at the same time in utereo and because Cailynn's kidneys have problems, the Doctor wanted it checked out. We got that scheduled for Friday (today), the same day as out appointment with the urologist.
Which brings us to today! We began today at Children's Medical Center in the Cardiology department. To be brief, the EKG was uneventful (meaning Cailynn didn't put up much of a fuss) and the doctor said that he didn't see anything out of the ordinary. Yipee!
Then the receptionist from Cardiology took us to Urology. We were an hour early for our appointment. Of course as soon as I left to take Cailynn to change her diaper, we were called in. So I hurried back, baby half dressed, and we were taken back to a room, where we waited another 20 minutes until the doctor came in. He reviewed Cailynn's renal ultrasound and her voiding cystograph with us and then drew us a picture illustrating the problems with her kindeys.
There are 2 issues, but they are related. She has the duplicated ureter in her right kidney and ureterocele (a tiny hernia) in her bladder. It also appears that the upper lobe of her right kidney is not functioning well (that's where the extra ureter is attached). She also has VU reflux, pretty severe. VU reflux is characterized by grades 1-5, 5 being most severe. She has grade 4-5. This has caused her ureters, and kidneys to some degree, to become swollen.
So the plan is..... she needs a test of her kidney function (DMSA) to see how well that right upper lobe is working. The doctor is assuming it is not working well. If that is the case, she will need surgery to remove it (and as much of the ureter that is attached to it). That woud occur when she is 3-4 months old. If, on the other hand, it functions well, surgery will not be needed.
She will also need surgery to re-attach the 2 remaining ureters to her bladder and remove the ureterocele. This, we were told, is a much more delicate and complicated surgery. Therefore the doctor prefers to wait until she gets bigger/ older. Maybe 6 months old - 2 years. This will depend on her staying infection free.
For now we continue to pray for healing and keep giving Cailynn antibiotics. We are waiting to schedule the next procedure, DMSA. This procedure requires Cailynn to have an IV and most likely be restrained for 30-45 mins. I imagine it will be scary and uncomfortable for her, so we are praying for her to experience peace and comfort throughout the procedure. Also, we pray that the right upper lobe functions well enough that it doesn't need to be removed.
Which brings us to today! We began today at Children's Medical Center in the Cardiology department. To be brief, the EKG was uneventful (meaning Cailynn didn't put up much of a fuss) and the doctor said that he didn't see anything out of the ordinary. Yipee!
Then the receptionist from Cardiology took us to Urology. We were an hour early for our appointment. Of course as soon as I left to take Cailynn to change her diaper, we were called in. So I hurried back, baby half dressed, and we were taken back to a room, where we waited another 20 minutes until the doctor came in. He reviewed Cailynn's renal ultrasound and her voiding cystograph with us and then drew us a picture illustrating the problems with her kindeys.
There are 2 issues, but they are related. She has the duplicated ureter in her right kidney and ureterocele (a tiny hernia) in her bladder. It also appears that the upper lobe of her right kidney is not functioning well (that's where the extra ureter is attached). She also has VU reflux, pretty severe. VU reflux is characterized by grades 1-5, 5 being most severe. She has grade 4-5. This has caused her ureters, and kidneys to some degree, to become swollen.
So the plan is..... she needs a test of her kidney function (DMSA) to see how well that right upper lobe is working. The doctor is assuming it is not working well. If that is the case, she will need surgery to remove it (and as much of the ureter that is attached to it). That woud occur when she is 3-4 months old. If, on the other hand, it functions well, surgery will not be needed.
She will also need surgery to re-attach the 2 remaining ureters to her bladder and remove the ureterocele. This, we were told, is a much more delicate and complicated surgery. Therefore the doctor prefers to wait until she gets bigger/ older. Maybe 6 months old - 2 years. This will depend on her staying infection free.
For now we continue to pray for healing and keep giving Cailynn antibiotics. We are waiting to schedule the next procedure, DMSA. This procedure requires Cailynn to have an IV and most likely be restrained for 30-45 mins. I imagine it will be scary and uncomfortable for her, so we are praying for her to experience peace and comfort throughout the procedure. Also, we pray that the right upper lobe functions well enough that it doesn't need to be removed.
Tuesday, June 29, 2010
Cailynn was born about 2 weeks before her due date because I had low amniotic fluid, but her story begins months before that....
At our 20 week ultrasound, we were told that our baby had a cyst in her bladder. Otherwise, everything looked fine, I was told to go back in a month for another look. We would go back every 3-4 weeks. Over that time it was discovered that she also had a double uerter coming from her right kidney. Finally we were reffered to a pediatric urologist at Children's Medical Center. But before we could talk to him about what all this meant for our baby, it was discovered that my amniotic fluid was low, and getting lower - and low fluid made complications (including death) more likely during delivery - so that very same day we went in to the hospital to induce labor and have our baby girl.
Despite the induction, labor and birth went wonderfully and both Mommy and baby did very well. The peditrician saw us and consulted with the urologist and put Cailynn on an antibiotic due to her abnormalities. We were also scheduled for testing at Children's the following week, and then we were allowed to go home!
At one week old, Cailynn was given an abdominal ultrasound and a test called voiding cystourethrogram (VCUG). Despite being the only newborn who won't automotically pee when her bladder is pumped full of 100cc of water, she tolerated the tests well and didn't seem too upset by everything.
The next day was our 1 week appointment with the pediatrician. He had the test results and was able to tell us that she has a condition called vesicoureteral reflux (VU reflux), which is when urine from the bladder goes back up the uereter and into the kidney. This can cause kidney infections. He said the ultrasound showed "goofy" anatomy, whatever that means! He also said that with these conditions, she will need surgery, but the timeline and details will be determined by the urologist. So we left that appointment with some questions answered, but even more new ones!
I need to mention here that this child's life has been in God's hands, has been God's plan since before her conception. After our 3rd child, and all the drama surrounding her entrance into this world, Trent and I had left the possibility of a 4th child up to God. Last fall we were delightfully surprised to find out we were pregnant. The timing was perfect, as I was due just after school was out (I'm a teacher). And as the time drew near, my husband was laid off the end of May, just days before she was born. God worked the timing and circumstances of the job loss for our good and Trent has been able to be a helper at home as well as able to attend doctors' appointments, baseball games, church activities, and even a dance recital! We have never had this much time together as a family. God is growing us as a couple and as parents, and strengthening our marriage and family.
As for Cailynn, our next appointment is July 9th, with the urologist. We hope to leave that appointment with our questions answered and a plan of action for our daughter. We thank you for your prayers and plan to keep you updated as to her journey with blog posts.
"Tori Buehler"
At our 20 week ultrasound, we were told that our baby had a cyst in her bladder. Otherwise, everything looked fine, I was told to go back in a month for another look. We would go back every 3-4 weeks. Over that time it was discovered that she also had a double uerter coming from her right kidney. Finally we were reffered to a pediatric urologist at Children's Medical Center. But before we could talk to him about what all this meant for our baby, it was discovered that my amniotic fluid was low, and getting lower - and low fluid made complications (including death) more likely during delivery - so that very same day we went in to the hospital to induce labor and have our baby girl.
Despite the induction, labor and birth went wonderfully and both Mommy and baby did very well. The peditrician saw us and consulted with the urologist and put Cailynn on an antibiotic due to her abnormalities. We were also scheduled for testing at Children's the following week, and then we were allowed to go home!
At one week old, Cailynn was given an abdominal ultrasound and a test called voiding cystourethrogram (VCUG). Despite being the only newborn who won't automotically pee when her bladder is pumped full of 100cc of water, she tolerated the tests well and didn't seem too upset by everything.
The next day was our 1 week appointment with the pediatrician. He had the test results and was able to tell us that she has a condition called vesicoureteral reflux (VU reflux), which is when urine from the bladder goes back up the uereter and into the kidney. This can cause kidney infections. He said the ultrasound showed "goofy" anatomy, whatever that means! He also said that with these conditions, she will need surgery, but the timeline and details will be determined by the urologist. So we left that appointment with some questions answered, but even more new ones!
I need to mention here that this child's life has been in God's hands, has been God's plan since before her conception. After our 3rd child, and all the drama surrounding her entrance into this world, Trent and I had left the possibility of a 4th child up to God. Last fall we were delightfully surprised to find out we were pregnant. The timing was perfect, as I was due just after school was out (I'm a teacher). And as the time drew near, my husband was laid off the end of May, just days before she was born. God worked the timing and circumstances of the job loss for our good and Trent has been able to be a helper at home as well as able to attend doctors' appointments, baseball games, church activities, and even a dance recital! We have never had this much time together as a family. God is growing us as a couple and as parents, and strengthening our marriage and family.
As for Cailynn, our next appointment is July 9th, with the urologist. We hope to leave that appointment with our questions answered and a plan of action for our daughter. We thank you for your prayers and plan to keep you updated as to her journey with blog posts.
"Tori Buehler"
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