Well, Jordan has had her feeding tube in for over a week and I have been feeding her through it for one week now. I am fairly comfortable with what I am doing, although she makes it difficult by pulling it our or kicking the tube full of Pediasure. I am amazed at how quickly she is healing! She still has the steri-strips over her stitches and the stoma (site where the tube is placed) is healing nicely. She is getting just over 25 oz per day over 6 feedings. I have been able to work her out of the overnight feedings - she does get one feeding while sleeping - usually 10 or 11 pm. I am getting more sleep which makes it much easier for me to function day to day.
Jordan is back to herself, crawling around and getting into everything. She especially loves to follow Conner as he runs around the house. She is pulling herself up onto her knees and I'm sure will soon pull up to standing. I am still amazed at how far she has come over the past 6 months!!
We found out yesterday that the stomach acid can bleach her clothing! She was in the exersaucer while we ate dinner. After we were done, Derrick picked her up to feed her and her shirt was wet. It looked kinda funny and I looked closer and realized that the once cute blue tank top with butterflies on it, had a big bleached spot on the front. I guess we will keep her in ugly white onesies at home and only dress her when we are going out of the house. It kinda stinks because she has sooooo many cute clothes but I don't want them to get ruined!
Thank you to everyone for your prayers and support. We are amazed at how caring and generous our friends are. We have seen God working through this situation and in Jordan. Please continue to pray for her continued growth and development. We are so excited at the things she is doing, but we know that there's lots more things that she will accomplish!! She continues to blossom more and more every day.
Another thing is that I will be having surgery on my wrist on Thursday, Sept. 4th. I have DeQuervain's Tenosynovitis - it's a form of tendonitis with the 2 tendons that connect my thumb to my arm. It starting causing some discomfort several months ago and escalated to severe pain at times. After trying Naproxin and icing it, seeing a hand specialist and having a shot of cortisone and wearing a splint for the past 6 weeks, they are going to go in and fix it. I should be unable to do much for several days following the surgery and will be restricted for about a month. Please pray that the procedure goes smoothly and the recovery is quick and I am able to care for my family and kids.
Saturday, August 30, 2008
Sunday, August 24, 2008
Difficult First Night Home
Last night was difficult for me. Jordan's feedings seemed to go well during the day but at her 10pm feeding I started having some technical difficulties with the syringe part of the feeding tube that I use to check if there is any residual food from her last feeding. I am supposed to do this to determine if it is okay to feed her yet or if I need to wait another hour to let her food digest. Well, it was kinda sticking and I was having difficulty with it, but I made it work and figured it was just maybe a little sticky or something.
Then I went to bed around 11 and woke up for her 1am feeding. I was soooo tired but got up and got everything together. When I tried to stick the syringe into the tube it wouldn't go in at all. It was almost like it got stretched out and wouldn't fit into it. I struggled with it for a few minutes and then Derrick came into Jordan's room to help and took it out to the kitchen to work on it. He came back in and had used some Pediasure to lubricate it to get it to go in. It was extremely difficult to pull back on to check the residuals in her stomach, but I felt there wasn't much there and it was okay to proceed with her feeding. Derrick left and went to take a shower and get ready for bed (yes, he was still up putting together some projector brackets for a project at church). I fed Jordan her Pediasure and then gathered all of the feeding tubes and accessories to go clean them. I opened the door from Jordan's room into ours and closed it behind me.
That's when I realized there was a bat flying around our bedroom!!! I knew Derrick had seen one the night before but couldn't find it after searching the house for an hour and thought maybe it somehow got out of the house. Well, apparently it was still here. I freaked out and ducked down onto the floor and covered my head with my hands. I yelled for Derrick and told him the bat was in our room and he came and looked in and told me to go back into Jordan's room. I was scared so it took me a few minutes and finally I jumped up and quickly slid through the door and shut it behind me. Derrick turned on the light to our bedroom and grabbed our bat killing tennis rackets (this happens several times a year) and got it and took it outside.
By this time, Jordan was crying so I had picked her up and was rocking her. Partly for her comfort, and partly for mine. Derrick came in and told me that it was gone and he went back to getting ready for bed. At this point, I was completely flooded with emotions and started crying. I realized that I had not yet dealt with everything that we had just gone through. I was overcome with the realization that Jordan's feeding issues were severe enough that she required a medical intervention to get her nutrition. I mourned over the fact that she now had a tube sticking out of her tummy and she would always have a scar from the surgery. I feared what the future might hold and the unknown that lay ahead of us. I rejoiced that everything had gone well and she was healing quickly. There were so many things running through my mind I didn't know what I was actually feeling.
I eventually made it back to bed and cried for a while before falling asleep. When I got up for Jordan's 4am feeding, I had more difficulties with the syringe and the rubber stopper popped off inside the tube. I fished it out with my hand and proceeded with the feeding assuming she was ready to be fed. She took it well and fell right back to sleep. I was exhausted and had only gotten about 2 hours of sleep at this point so I quickly fell asleep. I got up for her 7am feeding and started having difficulty with the syringe and decided to just bypass that step of the feeding. She again tolerated the feeding well and went back to sleep. I got a little more sleep before I heard Jordan waking up and got up myself to take a quick shower. I am now remembering just how exhausting it is to get up in the middle of the night to feed a baby. I will definitely try to get a nap this afternoon when she goes down for hers.
I thought the hospital had sent us home with extra feeding supplies but when I unpacked everything at home, I found out it was tubes for the other kind of G-tube and that there was no syringe tube. I was quite frustrated with this, but didn't figure I would need replacement parts this soon. I have called the surgeon and he wants me to skip that step of the feeding and to call their office on Monday to have them order extra supplies from the home health care company.
Please pray that we have no more difficulties with Jordan's feedings and that I gain confidence in knowing I am doing things correctly. Pray also for some peace for me as I adjust to this new phase in Jordan's development. Thank You!!
Then I went to bed around 11 and woke up for her 1am feeding. I was soooo tired but got up and got everything together. When I tried to stick the syringe into the tube it wouldn't go in at all. It was almost like it got stretched out and wouldn't fit into it. I struggled with it for a few minutes and then Derrick came into Jordan's room to help and took it out to the kitchen to work on it. He came back in and had used some Pediasure to lubricate it to get it to go in. It was extremely difficult to pull back on to check the residuals in her stomach, but I felt there wasn't much there and it was okay to proceed with her feeding. Derrick left and went to take a shower and get ready for bed (yes, he was still up putting together some projector brackets for a project at church). I fed Jordan her Pediasure and then gathered all of the feeding tubes and accessories to go clean them. I opened the door from Jordan's room into ours and closed it behind me.
That's when I realized there was a bat flying around our bedroom!!! I knew Derrick had seen one the night before but couldn't find it after searching the house for an hour and thought maybe it somehow got out of the house. Well, apparently it was still here. I freaked out and ducked down onto the floor and covered my head with my hands. I yelled for Derrick and told him the bat was in our room and he came and looked in and told me to go back into Jordan's room. I was scared so it took me a few minutes and finally I jumped up and quickly slid through the door and shut it behind me. Derrick turned on the light to our bedroom and grabbed our bat killing tennis rackets (this happens several times a year) and got it and took it outside.
By this time, Jordan was crying so I had picked her up and was rocking her. Partly for her comfort, and partly for mine. Derrick came in and told me that it was gone and he went back to getting ready for bed. At this point, I was completely flooded with emotions and started crying. I realized that I had not yet dealt with everything that we had just gone through. I was overcome with the realization that Jordan's feeding issues were severe enough that she required a medical intervention to get her nutrition. I mourned over the fact that she now had a tube sticking out of her tummy and she would always have a scar from the surgery. I feared what the future might hold and the unknown that lay ahead of us. I rejoiced that everything had gone well and she was healing quickly. There were so many things running through my mind I didn't know what I was actually feeling.
I eventually made it back to bed and cried for a while before falling asleep. When I got up for Jordan's 4am feeding, I had more difficulties with the syringe and the rubber stopper popped off inside the tube. I fished it out with my hand and proceeded with the feeding assuming she was ready to be fed. She took it well and fell right back to sleep. I was exhausted and had only gotten about 2 hours of sleep at this point so I quickly fell asleep. I got up for her 7am feeding and started having difficulty with the syringe and decided to just bypass that step of the feeding. She again tolerated the feeding well and went back to sleep. I got a little more sleep before I heard Jordan waking up and got up myself to take a quick shower. I am now remembering just how exhausting it is to get up in the middle of the night to feed a baby. I will definitely try to get a nap this afternoon when she goes down for hers.
I thought the hospital had sent us home with extra feeding supplies but when I unpacked everything at home, I found out it was tubes for the other kind of G-tube and that there was no syringe tube. I was quite frustrated with this, but didn't figure I would need replacement parts this soon. I have called the surgeon and he wants me to skip that step of the feeding and to call their office on Monday to have them order extra supplies from the home health care company.
Please pray that we have no more difficulties with Jordan's feedings and that I gain confidence in knowing I am doing things correctly. Pray also for some peace for me as I adjust to this new phase in Jordan's development. Thank You!!
Saturday, August 23, 2008
Home from the Hospital on my Birthday - the Best Present EVER!!
Let me start by saying THANK YOU for all of the prayers!! Many of you have kept Jordan and our family in your prayers over the past several days to months and we have experienced the grace of God every day because of them. I am amazed at how much is happening in our lives and yet we are somehow able to stay strong amidst the storms. Thank you for encouraging us through this difficult time.
We started Jordan's feedings yesterday about noon. We started with 1 oz. every 3 hours. If she was able to handle it for 2 feedings, we increased the amount by 1/2 oz. We continued this every 3 hours. Jordan's goal was 24 oz of Pediasure which breaks down to 3 oz every 3 hours (8 feedings in a 24 hour period). Jordan reached her feeding goal of 3 oz at noon today and was able to go home. After the process of discharge instructions and emergency tube info, we finally left the hospital at 2:30pm.
We are now at home. Jordan had her first home-feeding at 3:45pm and then fell asleep and is still napping. I laid down for a brief nap after cleaning the tubes and am now getting caught up on everything at home. We will continue to feed Jordan every 3 hours until she sees the surgeon for her follow-up appt in 2 weeks. Then I will contact Dr. Burdo-Hartman's office and they will give me instructions on how to get Jordan onto 5 larger daytime only feedings. So for the next few weeks it will be like having a newborn at home with a couple of nighttime feedings every night. Derrick and I discussed her schedule and think that we can get it to where I will only have to get up 2 times per night (of course, that doesn't include all the times Conner might be up and need to be put back in bed...) At this point, we need to take it slow during the feedings, so they still take about 15-20 minutes each. After she becomes more comfortable with them, we should be able to increase the speed of the feed so it should only be 10 minutes or so.
We are so relieved that Jordan made it through surgery and recovery so quickly. Several of the nurses commented on how well she tolerated the feedings and how her overall recovery was quicker than many G-tube patients. A couple of the nurses took quite a liking to Jordan and would just hang out in the room and play with her! I was very happy with everyone at DeVos Children's Hospital.
Overall, the stay in the hospital was great! The nurses were wonderful - I never had one that I didn't like. Our first night we had a roommate which made things quite difficult after kinda getting off on the wrong foot because we they came in not long after us and we had several visitors at once. Then overnight between the two babies, they were awake most of the night. I am guessing I got a total of 3 hours of sleep but never for more than 1/2 hr - 45 minutes at one time! The second night I explained the situation to my nurses and they worked hard to keep roommates out for me to get a good night's sleep. Of course I was up 3 times for feedings and a couple of times her machines had alarms go off - but overall, it was a good night's sleep.
Please pray for Jordan's continued healing and recovery and for her to continue to tolerate the feedings. I also need prayer for sleep at night and energy during the day as feeding her every 3 hours for 24 hrs is going to be exhausting. The boys have been with my parents in Kalamazoo and will stay there until Monday to give me a chance to adjust to things with Jordan at home. Please pray also for them as they are not used to entertaining a 3 yr old and a 13 yr old at the same time (they usually have one at a time).
We started Jordan's feedings yesterday about noon. We started with 1 oz. every 3 hours. If she was able to handle it for 2 feedings, we increased the amount by 1/2 oz. We continued this every 3 hours. Jordan's goal was 24 oz of Pediasure which breaks down to 3 oz every 3 hours (8 feedings in a 24 hour period). Jordan reached her feeding goal of 3 oz at noon today and was able to go home. After the process of discharge instructions and emergency tube info, we finally left the hospital at 2:30pm.
We are now at home. Jordan had her first home-feeding at 3:45pm and then fell asleep and is still napping. I laid down for a brief nap after cleaning the tubes and am now getting caught up on everything at home. We will continue to feed Jordan every 3 hours until she sees the surgeon for her follow-up appt in 2 weeks. Then I will contact Dr. Burdo-Hartman's office and they will give me instructions on how to get Jordan onto 5 larger daytime only feedings. So for the next few weeks it will be like having a newborn at home with a couple of nighttime feedings every night. Derrick and I discussed her schedule and think that we can get it to where I will only have to get up 2 times per night (of course, that doesn't include all the times Conner might be up and need to be put back in bed...) At this point, we need to take it slow during the feedings, so they still take about 15-20 minutes each. After she becomes more comfortable with them, we should be able to increase the speed of the feed so it should only be 10 minutes or so.
We are so relieved that Jordan made it through surgery and recovery so quickly. Several of the nurses commented on how well she tolerated the feedings and how her overall recovery was quicker than many G-tube patients. A couple of the nurses took quite a liking to Jordan and would just hang out in the room and play with her! I was very happy with everyone at DeVos Children's Hospital.
Overall, the stay in the hospital was great! The nurses were wonderful - I never had one that I didn't like. Our first night we had a roommate which made things quite difficult after kinda getting off on the wrong foot because we they came in not long after us and we had several visitors at once. Then overnight between the two babies, they were awake most of the night. I am guessing I got a total of 3 hours of sleep but never for more than 1/2 hr - 45 minutes at one time! The second night I explained the situation to my nurses and they worked hard to keep roommates out for me to get a good night's sleep. Of course I was up 3 times for feedings and a couple of times her machines had alarms go off - but overall, it was a good night's sleep.
Please pray for Jordan's continued healing and recovery and for her to continue to tolerate the feedings. I also need prayer for sleep at night and energy during the day as feeding her every 3 hours for 24 hrs is going to be exhausting. The boys have been with my parents in Kalamazoo and will stay there until Monday to give me a chance to adjust to things with Jordan at home. Please pray also for them as they are not used to entertaining a 3 yr old and a 13 yr old at the same time (they usually have one at a time).
Thursday, August 21, 2008
Successful Surgery!!
Jordan's surgery went well today. She has been running a slight fever and still seems quite uncomfortable but the pain meds help quite a bit. She doesn't sleep much when laid in the crib and is much better when I cuddle and hold her. It might be a long night, but I'm not complaining that I get to spend the next few days cuddling my baby girl without having to chase Conner or get Mak to do some chores. Please continue to pray for her healing and recovery and that when we start feedings tomorrow that they go well. The surgeon is thinking that we could go home as early as Saturday! I will try to update again soon.
Tuesday, August 19, 2008
Jordan's Surgery
Jordan is scheduled for her Nissen G-tube surgery on Thursday at 8:55am. The surgery is scheduled to take approximately 1 to 1 1/2 hrs. We will need to be there at 6:55am which will mean an early morning for all of us!! After Jordan has been discharged from recovery, she will be admitted to DeVos Children's Hospital and will be given a room for the next 3 days or so.
Derrick and I have somewhat mixed feelings about all of this. We are looking forward to feeding Jordan without having her cry, fuss, gurgle, and have food come out of her nose. She will be able to get the amount of nutrition her little body needs to grow and develop without concern for getting it into her safely. The time relief for me will be huge!! I currently spend over 3 hours a day feeding Jordan and I don't feed her when we are eating so it's a large portion of my day.
On the other hand, we have very normal concerns about our little baby going under anesthesia for an open surgical procedure. We know that there are always risks with this sort of thing and therefore are a little anxious about it.
Please be praying for Jordan with her upcoming surgery and for the Dr.'s and all of the medical staff that will be assisting with the procedure as well as Derrick and I and our whole family as we go through this process with her. Please also pray for her recovery and the stay for us in the hospital (I will be staying with her). I will try to find a way to update the blog from the hospital - hopefully they will have a computer with Internet access somewhere.
Thank you for all of your prayers for Jordan as we face this journey.
Derrick and I have somewhat mixed feelings about all of this. We are looking forward to feeding Jordan without having her cry, fuss, gurgle, and have food come out of her nose. She will be able to get the amount of nutrition her little body needs to grow and develop without concern for getting it into her safely. The time relief for me will be huge!! I currently spend over 3 hours a day feeding Jordan and I don't feed her when we are eating so it's a large portion of my day.
On the other hand, we have very normal concerns about our little baby going under anesthesia for an open surgical procedure. We know that there are always risks with this sort of thing and therefore are a little anxious about it.
Please be praying for Jordan with her upcoming surgery and for the Dr.'s and all of the medical staff that will be assisting with the procedure as well as Derrick and I and our whole family as we go through this process with her. Please also pray for her recovery and the stay for us in the hospital (I will be staying with her). I will try to find a way to update the blog from the hospital - hopefully they will have a computer with Internet access somewhere.
Thank you for all of your prayers for Jordan as we face this journey.
Friday, August 15, 2008
Discharged!
On Tuesday at Jordan's feeding therapy at MFB, Ellen informed me that she wanted to discharge her from therapy. She truly felt that there was nothing more she could do for probably 6 months or so. After getting the feeding tube next week, Jordan will have a week or so of no oral feeding and after that, Ellen felt the best thing to do was to only pleasure feed a few times a day a small amount (1-2 oz) just to keep her experiencing oral feeding. She said it will take around 6 months for any damage from her reflux to heal completely and for her to forget the discomfort she has felt and move forward with feeding therapy. She doesn't see Jordan accepting other textures and/or thicknesses well for quite a while and therefore, felt we should stop therapy.
I was kinda caught off guard by this. I expected maybe a month or so off to adjust to the tube feeding, but I figured we would be moving forward with trying to get her to eat well orally in the near future. I'm kinda bummed because I felt like Ellen and Jane were my biggest support system through this. I know that I am doing what is best for Jordan but it sure was comforting to know that I had an OT and RN that I could just call whenever I had any concerns. I asked if Ellen would be my therapist when Jordan started therapy again and she said I could request her, but it would be based on who is available. I would appreciate prayers that when therapy is needed that we could be with Ellen - she has been a huge part of this journey with me and I hope to be able to continue with her later.
I want to say a HUGE "Thank You!!" to both Ellen and Jane for all of the information, support, and encouragement they have given me during the past 4 months. I saw several other therapists during that time and I feel that I have been truly blessed to be put with Ellen. She seemed to care more about Jordan where the other therapists seemed to care more about the goals. I appreciate all of the people at Mary Free Bed Outpatient Therapy and all they have done for my little Jordan!!
I was kinda caught off guard by this. I expected maybe a month or so off to adjust to the tube feeding, but I figured we would be moving forward with trying to get her to eat well orally in the near future. I'm kinda bummed because I felt like Ellen and Jane were my biggest support system through this. I know that I am doing what is best for Jordan but it sure was comforting to know that I had an OT and RN that I could just call whenever I had any concerns. I asked if Ellen would be my therapist when Jordan started therapy again and she said I could request her, but it would be based on who is available. I would appreciate prayers that when therapy is needed that we could be with Ellen - she has been a huge part of this journey with me and I hope to be able to continue with her later.
I want to say a HUGE "Thank You!!" to both Ellen and Jane for all of the information, support, and encouragement they have given me during the past 4 months. I saw several other therapists during that time and I feel that I have been truly blessed to be put with Ellen. She seemed to care more about Jordan where the other therapists seemed to care more about the goals. I appreciate all of the people at Mary Free Bed Outpatient Therapy and all they have done for my little Jordan!!
Wednesday, August 6, 2008
Coming out her nose!!
Well, today we had another first with Jordan. When I was feeding her, it started coming out her nose! Now while it may seem kinda funny, the problem is that she seems to be developing more difficulty swallowing. While feeding her today (and sometimes yesterday) she started processing her food in her mouth and gurgling. It was almost like she was enjoying her food and moaning. Anyway, because of her swallowing difficulties, instead of swallowing the food, it was going into her nasal passages and coming out through her nose.
Please pray that Jordan will get past this and swallow her food normally. I know we only have 2 weeks until her surgery, but at this point, it can't go fast enough. We just want her to be able to get her nutrition safely without the concern of complications.
Please pray that Jordan will get past this and swallow her food normally. I know we only have 2 weeks until her surgery, but at this point, it can't go fast enough. We just want her to be able to get her nutrition safely without the concern of complications.
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