Jimmie's Occupational Therapist came yesterday almost as soon as she heard Rachael needed her. She showed up just as Jimmie was starting a feed- so perfect timing. She does not think it's an Oral Aversion as those kids reject anything near or in their mouth. Jimmie sucks on anything that he can get into his mouth. His hands, your shirt, your collar bone, his paci.... She thinks that it has to do with the discomfort he has experienced with his reflux. He's remembering what it feels like and as soon as he gets enough milk in stomach to not be starving he stops. Basically he doesn't fill his tummy because that has caused him too much pain. Rachael is keeping him on the Xantac and may try the Prevacid sometime in the near future just make sure he is not still burning. His puking has been almost non existent since he has been back on O2 though so that is good!
The OT said it could take up to 6 months for Jimmie to forget and stop associating his feeds with pain and discomfort. Poor little guy.
Rachael is doing much better. She has been able to look up and out and let go. Jimmie is taking very small feeds every two hours or so. He is probably not getting enough to really chunk it up, but we hope it'll keep him out of the hospital. He takes the small amounts pretty peacefully. Rachael is going to effort to look at the big picture and go from there. Jimmie's Dr. S. and the Neonates at Children's will help her make sure Jimmie is taking in a safe amount.
Justin and Rod did go back to the lake. Pray for them and Kathy as well. Everybody has struggled with this in their own way and it's been very hard for everyone close to Justin, Rachael and Jimmie. Justin was doing very well yesterday before he left. He was very encouraging and supportive to Rachael and he seems to be starting to be able to pull Rachael up some when she's down instead of joining her there. That is definitely what Rach needs. She needs to be surrounded with positive hopeful energy.
You guys are great with your support and prayers! Keep fighting for us! We are so very grateful.
Love,
Amber
Saturday, August 8, 2009
Friday, August 7, 2009
Letting Go
Rod, Justin and Rachael came home late last evening. My mom went out there (to Odessa) to spend the night. Jimmie was completely exhausted and slept all night. This morning at 6am he took 54mls. Since he has not completely stopped eating, he is not truly starving nor dehydrating so he will not be hospitalized. Rach spoke to Dr. S. this morning. The plan is they are going to do 2 bottles a day with formula so they know for sure his minimum calorie intake will be. Rach will mix in breast milk in place of some of the water. And they will continue to look at his weight gain a week at a time.
He could have just had a really colicky day yesterday. He did have a lot of gas. We'll see . . .
There are 2 issues going on here - 1. Jimmie 2. Rachael . . .
Jimmie DOES have feeding issues. If everything is not perfect in his environment he struggles. If he can't breathe well it's horrible! Which is why the O2 has made such a difference. Thanks Whitney for your comment because we are starting to suspect oral aversions and sensory issues as well. Rachael has called his OT this morning. We have experimented some with different nipples. Maybe the OT will be more help in that matter. Jimmie is still in the acceptable (barely) amount of weight gain this week. This whole thing may end up progressing to observation at the hospital and an NG tube while a plan is created. It may not . . . But until Jimmie either completely stops eating or starts losing weight the risks of the hospital outweigh the benefits.
Rachael continues to really struggle mentally/psychologically. She is easily sent way down into depression, anger and anxiety. I asked, "So what do I put on the blog this morning Rach? That you are crazy?" She half laughed and said, "yes!" We are kind of laughing about it this morning, but last night there was no laughing just crying.
Yesterday was just a disaster. Justin had been wanting to go down to the lake house this weekend for the big car show. Friends and family are planning to join them for a fun vacation weekend. Rachael did not feel she and Jimmie should go, but she felt the pressure and went. It proved to be too much for her and possibly Jimmie. It took the better part of the day to get down there because they had to keep stopping to try to get Jimmie to eat. Once they got down there they stayed a horrible hour or so Jimmie frantically biting the nipple and screaming the whole time. And then got back in the truck (Rod hopped in with them) and drove back home.
Rachael (and Justin for that matter) was not in a good place mentally at all -just very angry, anxious and upset. So my mom and Rod spent the night with them to help. This morning Jimmie is very happy and charming. He's eaten a bit and is cooing, smiling and just being delightful. Rachael is feeling she may have overreacted. *sigh* Rachael's personality is very strong. She likes things to be under control. Kathy has admited to me that she is exactly the same way and she feels that Justin married his "mother". (-: What Rachael really needs to do is "let go". She feels because of her dedication and tenacity she has forced Jimmie to eat enough to stay out of the hospital. We want her to let go and let Jimmie be Jimmie. That way his problems can fully manifest. Rachael is afraid to let go and in her words, "watch him waste away." We all know that the medical professionals helping with Jimmie would never let that happen. It is just really hard for her to "let go". Let go of the control she "thinks" she has. I believe this is a big part of what is making her "crazy".
I guess truth is- that Jimmie does have feeding issues, but poor Rachael has some issues as well, and sometimes it really hard for us to sort out one from the other. Rachael is an amazing mother. She is super proactive with Jimmie. She does everything and I mean EVERYTHING for him that is humanly possible. Well actually I think she's trying to be more than human which is *not* possible. Pray for her to LET GO!
Justin and Rod will leave this evening and go back to the lake and try and have a fun weekend Rachael and Jimmie will stay home and my mom will stay with them! Brother David may end up praying with Rachael- for her!
This whole thing the last 2 months has been really hard for me to blog about. It's hard for me to see my sister suffering this way- much less write about it. It's hard for me sometimes to accurately convey the situation when I'm trying to sort through Rachael's reality and Jimmie's issues. I'll keep trying because we know you all will pray. And that's what we need!
Love,
Amber
He could have just had a really colicky day yesterday. He did have a lot of gas. We'll see . . .
There are 2 issues going on here - 1. Jimmie 2. Rachael . . .
Jimmie DOES have feeding issues. If everything is not perfect in his environment he struggles. If he can't breathe well it's horrible! Which is why the O2 has made such a difference. Thanks Whitney for your comment because we are starting to suspect oral aversions and sensory issues as well. Rachael has called his OT this morning. We have experimented some with different nipples. Maybe the OT will be more help in that matter. Jimmie is still in the acceptable (barely) amount of weight gain this week. This whole thing may end up progressing to observation at the hospital and an NG tube while a plan is created. It may not . . . But until Jimmie either completely stops eating or starts losing weight the risks of the hospital outweigh the benefits.
Rachael continues to really struggle mentally/psychologically. She is easily sent way down into depression, anger and anxiety. I asked, "So what do I put on the blog this morning Rach? That you are crazy?" She half laughed and said, "yes!" We are kind of laughing about it this morning, but last night there was no laughing just crying.
Yesterday was just a disaster. Justin had been wanting to go down to the lake house this weekend for the big car show. Friends and family are planning to join them for a fun vacation weekend. Rachael did not feel she and Jimmie should go, but she felt the pressure and went. It proved to be too much for her and possibly Jimmie. It took the better part of the day to get down there because they had to keep stopping to try to get Jimmie to eat. Once they got down there they stayed a horrible hour or so Jimmie frantically biting the nipple and screaming the whole time. And then got back in the truck (Rod hopped in with them) and drove back home.
Rachael (and Justin for that matter) was not in a good place mentally at all -just very angry, anxious and upset. So my mom and Rod spent the night with them to help. This morning Jimmie is very happy and charming. He's eaten a bit and is cooing, smiling and just being delightful. Rachael is feeling she may have overreacted. *sigh* Rachael's personality is very strong. She likes things to be under control. Kathy has admited to me that she is exactly the same way and she feels that Justin married his "mother". (-: What Rachael really needs to do is "let go". She feels because of her dedication and tenacity she has forced Jimmie to eat enough to stay out of the hospital. We want her to let go and let Jimmie be Jimmie. That way his problems can fully manifest. Rachael is afraid to let go and in her words, "watch him waste away." We all know that the medical professionals helping with Jimmie would never let that happen. It is just really hard for her to "let go". Let go of the control she "thinks" she has. I believe this is a big part of what is making her "crazy".
I guess truth is- that Jimmie does have feeding issues, but poor Rachael has some issues as well, and sometimes it really hard for us to sort out one from the other. Rachael is an amazing mother. She is super proactive with Jimmie. She does everything and I mean EVERYTHING for him that is humanly possible. Well actually I think she's trying to be more than human which is *not* possible. Pray for her to LET GO!
Justin and Rod will leave this evening and go back to the lake and try and have a fun weekend Rachael and Jimmie will stay home and my mom will stay with them! Brother David may end up praying with Rachael- for her!
This whole thing the last 2 months has been really hard for me to blog about. It's hard for me to see my sister suffering this way- much less write about it. It's hard for me sometimes to accurately convey the situation when I'm trying to sort through Rachael's reality and Jimmie's issues. I'll keep trying because we know you all will pray. And that's what we need!
Love,
Amber
Thursday, August 6, 2009
Hospital Bound?
Well after almost a week of the oxygen making a difference-- for some reason today Jimmie is refusing to eat. He's started getting a little more fussy with his feedings the last few days. Yesterday we noticed he was a little stuffy with some hard boogies in his nose so we set him up to eat in the steamy bathroom and that really seemed to help. We've also had success with turning up the flow on his oxygen. Today-- NOTHING is working.
Unfortunately Rach and Justin had left this morning for Tablerock Lake. So they are a few hours away. Rachael just called me to tell me what was going on. She was going to call Dr. S. for a direct admittance to Children's Mercy. In her words, "I'm DONE." I think the plan is they are going to drive back up tomorrow morning and possibly directly to the hospital. We'll see. I'll keep everyone updated. Jimmie has taken 9 ounces total today and is still having wet diapers, but is for the most part just chewing on the bottle and screaming because he's hungry.
Rachael is exhausted of the struggle. She just wants her boy to be happy and healthy with a full tummy. Please pray for her. Pray she will have perspective and grace! And please pray for our precious little Jimmie!
Love,
Amber
Tuesday, August 4, 2009
Holy Air
We are rejoicing!!! It has been proven to us over and over that the oxygen is the key. Jimmie will start fussing and struggling during his feed and Rachael will put the oxygen on him and soon after he settles down and eats! Last evening she had him on 1/8 liter and he was struggling. She turned it up to 1/4 of a liter and he settled in and ate. Over the weekend he has gone from averaging 13 terribly hard ounces in a 24 hour period to 16 or 17 much easier ounces down in that time. He should be taking around 18 ounces so this is a huge improvement.
Rachael is keeping him on oxygen at night and during his feeds in the day. She leaves him on after he's done eating for a bit as well. Dr. S. is amazed and perhaps a bit bewildered. He is has referred Jimmie to Children's Mercy. Children's has been in contact with Dr. S. They can't get Jimmie in until Sept. 3rd so in the meantime they are VERY supportive of Rachael's use of the oxygen.
As Rachael processes all of this, she has thought back to her last appointment with the Neonatologist follow up clinic at Overland Park Regional. At that appointment Jimmie had recently started struggling, wasn't breastfeeding anymore and had not gained weight sufficiently at all. Rachael mentioned that the only thing that had changed was they had taken him off oxygen. They just immediately waved that off and said, "no- can't be that.". Then they pretty much just said- "good luck" and released Jimmie from their care! Jimmie's Pediatrician- Dr. S. was shocked they had already released him and a bit uncomfortable about it. Rachael feels a bit frustrated about this too. She feels that the follow up clinic there should just refer people on to Children's for continued care instead of just releasing them with a "good luck". Rachael also said repeatedly to me during that time that she couldn't believe they put Jimmie on the sat monitor for 5 minutes and declared him free of oxygen. She felt it should be a much bigger process than that. It seems she was right in her feelings about that! The NICU at Overland Park Regional is wonderful and Rachael respects and appreciates the Neo's there she just thinks their "follow up clinic" could be more thorough.
Anyway- God is the best physician and He has taken care of Jimmie. It was definitely His word that prompted mom to tell Rach to insist on oxygen. And Children's sounds like they will help Rachael take very good care of Jimmie and help address her concerns.
The interesting thing though is- Rachael is pretty sure Jimmie would pass any sat test. She's positive he is not desatting while he is eating. So a lot of Doctors might continue to say he doesn't need it. When you compartmentalize everything like Western Medicine tends to do you can often miss the big picture. Everything effects everything. It is so obvious to us now that in some way- taking Jimmie off the oxygen has caused a slow decline in his eating and weight gain. And has also contributed to his refluxing, aspirating and puking. Things were so steadily declining that Dr. S. and Rachael discussed the process of hospitalizing Jimmie. Hoping of course it wouldn't come to that.
So what now? Well as I said Children's is very supportive of Jimmie being on oxygen. And long term use in the way Rachael plans to use it is safer than any drug. We are very hopeful that as Jimmie grows and as mom continues to work (TKM Energy Work) on Jimmie that he'll outgrow his oxygen needs. Eventually he'll be able to thrive without it. For now though- it's our Holy Air!
Thank you for your prayers! Keep them coming.
"I bless the Lord who gives me counsel; in the night also my heart instructs me; because He is at my right hand, I shall not be moved. Therefore my heart is glad, and my soul rejoices; my body also dwells secure..." PS. 16:7-9
Love,
Amber
Rachael is keeping him on oxygen at night and during his feeds in the day. She leaves him on after he's done eating for a bit as well. Dr. S. is amazed and perhaps a bit bewildered. He is has referred Jimmie to Children's Mercy. Children's has been in contact with Dr. S. They can't get Jimmie in until Sept. 3rd so in the meantime they are VERY supportive of Rachael's use of the oxygen.
As Rachael processes all of this, she has thought back to her last appointment with the Neonatologist follow up clinic at Overland Park Regional. At that appointment Jimmie had recently started struggling, wasn't breastfeeding anymore and had not gained weight sufficiently at all. Rachael mentioned that the only thing that had changed was they had taken him off oxygen. They just immediately waved that off and said, "no- can't be that.". Then they pretty much just said- "good luck" and released Jimmie from their care! Jimmie's Pediatrician- Dr. S. was shocked they had already released him and a bit uncomfortable about it. Rachael feels a bit frustrated about this too. She feels that the follow up clinic there should just refer people on to Children's for continued care instead of just releasing them with a "good luck". Rachael also said repeatedly to me during that time that she couldn't believe they put Jimmie on the sat monitor for 5 minutes and declared him free of oxygen. She felt it should be a much bigger process than that. It seems she was right in her feelings about that! The NICU at Overland Park Regional is wonderful and Rachael respects and appreciates the Neo's there she just thinks their "follow up clinic" could be more thorough.
Anyway- God is the best physician and He has taken care of Jimmie. It was definitely His word that prompted mom to tell Rach to insist on oxygen. And Children's sounds like they will help Rachael take very good care of Jimmie and help address her concerns.
The interesting thing though is- Rachael is pretty sure Jimmie would pass any sat test. She's positive he is not desatting while he is eating. So a lot of Doctors might continue to say he doesn't need it. When you compartmentalize everything like Western Medicine tends to do you can often miss the big picture. Everything effects everything. It is so obvious to us now that in some way- taking Jimmie off the oxygen has caused a slow decline in his eating and weight gain. And has also contributed to his refluxing, aspirating and puking. Things were so steadily declining that Dr. S. and Rachael discussed the process of hospitalizing Jimmie. Hoping of course it wouldn't come to that.
So what now? Well as I said Children's is very supportive of Jimmie being on oxygen. And long term use in the way Rachael plans to use it is safer than any drug. We are very hopeful that as Jimmie grows and as mom continues to work (TKM Energy Work) on Jimmie that he'll outgrow his oxygen needs. Eventually he'll be able to thrive without it. For now though- it's our Holy Air!
Thank you for your prayers! Keep them coming.
"I bless the Lord who gives me counsel; in the night also my heart instructs me; because He is at my right hand, I shall not be moved. Therefore my heart is glad, and my soul rejoices; my body also dwells secure..." PS. 16:7-9
Love,
Amber
Saturday, August 1, 2009
Oxygen Revelations?
Rachael took Jimmie back to Dr. S. yesterday morning. Jimmie had barely been taking an ounce with his feeds. It's heartbreaking because he acts like he's starving, but won't eat. And this was after a day of Bethanacol.
My mom walks her Labradoodle-Gus every morning and prays and listens on her walk. So yesterday morning she was praying for Jimmie and this situation and she had an idea, maybe a revelation! She received some TKM knowledge about oxygen energy and how it relates to your eating and GI tract. (Mom feel free to comment and elaborate if you want!) And then she realized that Jimmie's eating going down hill directly correlated (the time frame) to him going off oxygen. So she stopped at my house (I live up the street) and called Rachael who was at that point- on her way to the doctor with Jimmie. Rachael agreed to ask Dr. S. for oxygen.
Dr. S. spent his entire lunch break yesterday with Rachael and Jimmie. He is really wonderful. We are very grateful to him. He pretty much admitted that at this point he's stumped. He feels the drugs should be working. So he's referring Jimmie to a Neonatologist at Children's Mercy. Jimmie's Neo's at Overland Park Regional recently released him from their care. Going to Children's will be better now- anyway. The Neo's there are more focused on pediatric problems and children who are out of the hospital and living at home.
Dr. S. basically gave Rachael leave to call him at home if she ever feels it's reached a critical point and he'll get Jimmie direct admittance to Children's Mercy. We want to avoid the E.R at all costs with Jimmie. The odds that he would be exposed to something in that scenario are too big to risk. That said- Jimmie is eating enough at this point to keep out of the hospital. He's still gaining weight and he's not dehydrated. Clinically he looks great.
Dr. S. is open minded about the oxygen. Jimmie's sats are fine every time they've checked them at the office, but he agreed to put in an order. We are all desperate at this point. He listened as Rachael explained things had steadily gone downhill since they discontinued his nightly oxygen. Coincidence? Maybe- maybe not!
But we hit a bump when Rachael and Justin's insurance company started to refuse reordering oxygen without a sat study proving he needs it. We know Jimmie will pass the sat study so Rachael and Justin were preparing to pay for the oxygen out of pocket. Then at the last minute some dear lady with the medical co. made it happen. So the oxygen was delivered yesterday and Jimmie was on an 1/8th of a liter all night. And lo and behold the last 7 feedings have been going better!!! He's not been screaming hysterically and at a few feedings he's taken 70 and 80mls!
Jimmie has had his ups and downs so we'll wait to declare the oxygen as key, but today has been a good day!!! Thank you Lord! We obviously can't leave Jimmie on oxygen indefinitely without weaning, but we will cross that bridge as it comes. Using an 1/8th of a liter at night or when he's having a bad feed can happen for a long time without ill side effects. And perhaps safer than long term use of Zantac/Prevacid and Bethanecol- which haven't really helped that much anyway.
Oh Lord please let this be an answer!!
Thank you also for your prayers for Rachael. She is trying to gain better perspective. Keep praying for her! Mom was with her all day Thursday. Kathy (Justin's mom) spent the night Thursday night and went to the Dr. with them Friday and then went back to Odessa to receive the oxygen delivery while Rachael hung at my house for the afternoon. Rod and Kathy have been with Rachael and Justin all day today as well- helping them. Tomorrow Justin works his 24 hour shift. Rachael will come in at some point in the morning and I will watch Jimmie while mom does some TKM treatments on Rachael. We are trying to make sure they have help every day for a while. Rachael really needs to spend some time taking care of herself.
Thank you so much for all of your comments, support and prayers! It really lifts us up and encourages us to know you all are praying.
I'll leave you with some cuteness! My Dad is a musician here in Kansas City and one of his friends gave Jimmie this "I'm with the band" onsie. Awesome! (-:
Love,
Amber
My mom walks her Labradoodle-Gus every morning and prays and listens on her walk. So yesterday morning she was praying for Jimmie and this situation and she had an idea, maybe a revelation! She received some TKM knowledge about oxygen energy and how it relates to your eating and GI tract. (Mom feel free to comment and elaborate if you want!) And then she realized that Jimmie's eating going down hill directly correlated (the time frame) to him going off oxygen. So she stopped at my house (I live up the street) and called Rachael who was at that point- on her way to the doctor with Jimmie. Rachael agreed to ask Dr. S. for oxygen.
Dr. S. spent his entire lunch break yesterday with Rachael and Jimmie. He is really wonderful. We are very grateful to him. He pretty much admitted that at this point he's stumped. He feels the drugs should be working. So he's referring Jimmie to a Neonatologist at Children's Mercy. Jimmie's Neo's at Overland Park Regional recently released him from their care. Going to Children's will be better now- anyway. The Neo's there are more focused on pediatric problems and children who are out of the hospital and living at home.
Dr. S. basically gave Rachael leave to call him at home if she ever feels it's reached a critical point and he'll get Jimmie direct admittance to Children's Mercy. We want to avoid the E.R at all costs with Jimmie. The odds that he would be exposed to something in that scenario are too big to risk. That said- Jimmie is eating enough at this point to keep out of the hospital. He's still gaining weight and he's not dehydrated. Clinically he looks great.
Dr. S. is open minded about the oxygen. Jimmie's sats are fine every time they've checked them at the office, but he agreed to put in an order. We are all desperate at this point. He listened as Rachael explained things had steadily gone downhill since they discontinued his nightly oxygen. Coincidence? Maybe- maybe not!
But we hit a bump when Rachael and Justin's insurance company started to refuse reordering oxygen without a sat study proving he needs it. We know Jimmie will pass the sat study so Rachael and Justin were preparing to pay for the oxygen out of pocket. Then at the last minute some dear lady with the medical co. made it happen. So the oxygen was delivered yesterday and Jimmie was on an 1/8th of a liter all night. And lo and behold the last 7 feedings have been going better!!! He's not been screaming hysterically and at a few feedings he's taken 70 and 80mls!
Jimmie has had his ups and downs so we'll wait to declare the oxygen as key, but today has been a good day!!! Thank you Lord! We obviously can't leave Jimmie on oxygen indefinitely without weaning, but we will cross that bridge as it comes. Using an 1/8th of a liter at night or when he's having a bad feed can happen for a long time without ill side effects. And perhaps safer than long term use of Zantac/Prevacid and Bethanecol- which haven't really helped that much anyway.
Oh Lord please let this be an answer!!
Thank you also for your prayers for Rachael. She is trying to gain better perspective. Keep praying for her! Mom was with her all day Thursday. Kathy (Justin's mom) spent the night Thursday night and went to the Dr. with them Friday and then went back to Odessa to receive the oxygen delivery while Rachael hung at my house for the afternoon. Rod and Kathy have been with Rachael and Justin all day today as well- helping them. Tomorrow Justin works his 24 hour shift. Rachael will come in at some point in the morning and I will watch Jimmie while mom does some TKM treatments on Rachael. We are trying to make sure they have help every day for a while. Rachael really needs to spend some time taking care of herself.
Thank you so much for all of your comments, support and prayers! It really lifts us up and encourages us to know you all are praying.
I'll leave you with some cuteness! My Dad is a musician here in Kansas City and one of his friends gave Jimmie this "I'm with the band" onsie. Awesome! (-:
Love,
Amber
Thursday, July 30, 2009
A Cry For Help/Prayer
Well last evening's blog was based on a conversation I had with Rach at about noon yesterday. Right after I posted it, I found out that things had been going downhill all day. The last 24 hours Jimmie has not been eating well at all and his puking has increased again. This morning after an hour of screaming and struggling Rachael got him to take 80mls after which he puked, badly- 3 times. He must of aspirated because he was retracting a bit afterward and had wet sounding cough.
My mom is in Odessa now with Jimmie. Rachael has gone to get the Prevacid and the Bethanecol. Jimmie doesn't seem to be in distress now so that's good. Hopefully these drugs will make a HUGE difference. Pray that's the case and that Jimmie doesn't suffer with any side effects.
And please pray for Rachael. The extreme struggle to get Jimmie to eat and keep him from puking along with pumping, worry, lack of sleep and hormones has really gotten to her. She is sad, angry, depressed and totally understandably exhausted. She's having a really hard time letting go of not being able to breastfeed. She's sad for Jimmie because he wants so badly to be on his back kicking and grooving under his play gym, but everytime she lets him do that he refluxes. If she lets him move free at all he suffers for it. The disapointment and grief that Jimmie was born so early is FINALLY really hitting her. And though she is grateful beyond words at how alive and well he is- she is still very sad. In just 10 months Rachael and Justin lost their firstborn Gracie and then of course Jimmie was born into very dire and traumatic circumstances.
We have decided she needs some intervention in the form of MAJOR help with Jimmie. We are working on a schedule that will include someone being there for Rachael every day. Thankfully this is our last day of dance classes for the summer so I will be able to help a lot. Rachael tends to say she's fine and try and struggle through, but that's not working for her right now- she's falling apart and it's not pretty. Justin needs prayer too because he's trying to work and pay the bills, deal with Jimmie's needs and now Rachael is really needing to be dealt with as well. He is at the end of his rope too. Lots of stress. Anyway- this is sort of a cry for help. And the way you all can help- is pray! Pray that Rachael and Justin can face and deal with the disapointment and hurt over this whole traumatic thing. Pray that God meets them and Rachael can have sweet comfort and communion with Him. Pray that they can have a Holy perspective.
This emotional and psychological crisis has been building for a while with Rachael and since we have shared this journey thus far I want to try to keep being as honest as possible. I know there are many of you who read this blog that have gone through something similar and can relate. And there are also many of you - family and friends who love Rachael, Justin and Jimmie and will intercede for them.
My Dad prayed this scripture for them last night, "...but they who wait on the Lord shall renew their strength, they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint." Isa. 40:31
We are so grateful for you all- our warriors!
Love,
Amber
My mom is in Odessa now with Jimmie. Rachael has gone to get the Prevacid and the Bethanecol. Jimmie doesn't seem to be in distress now so that's good. Hopefully these drugs will make a HUGE difference. Pray that's the case and that Jimmie doesn't suffer with any side effects.
And please pray for Rachael. The extreme struggle to get Jimmie to eat and keep him from puking along with pumping, worry, lack of sleep and hormones has really gotten to her. She is sad, angry, depressed and totally understandably exhausted. She's having a really hard time letting go of not being able to breastfeed. She's sad for Jimmie because he wants so badly to be on his back kicking and grooving under his play gym, but everytime she lets him do that he refluxes. If she lets him move free at all he suffers for it. The disapointment and grief that Jimmie was born so early is FINALLY really hitting her. And though she is grateful beyond words at how alive and well he is- she is still very sad. In just 10 months Rachael and Justin lost their firstborn Gracie and then of course Jimmie was born into very dire and traumatic circumstances.
We have decided she needs some intervention in the form of MAJOR help with Jimmie. We are working on a schedule that will include someone being there for Rachael every day. Thankfully this is our last day of dance classes for the summer so I will be able to help a lot. Rachael tends to say she's fine and try and struggle through, but that's not working for her right now- she's falling apart and it's not pretty. Justin needs prayer too because he's trying to work and pay the bills, deal with Jimmie's needs and now Rachael is really needing to be dealt with as well. He is at the end of his rope too. Lots of stress. Anyway- this is sort of a cry for help. And the way you all can help- is pray! Pray that Rachael and Justin can face and deal with the disapointment and hurt over this whole traumatic thing. Pray that God meets them and Rachael can have sweet comfort and communion with Him. Pray that they can have a Holy perspective.
This emotional and psychological crisis has been building for a while with Rachael and since we have shared this journey thus far I want to try to keep being as honest as possible. I know there are many of you who read this blog that have gone through something similar and can relate. And there are also many of you - family and friends who love Rachael, Justin and Jimmie and will intercede for them.
My Dad prayed this scripture for them last night, "...but they who wait on the Lord shall renew their strength, they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint." Isa. 40:31
We are so grateful for you all- our warriors!
Love,
Amber
Wednesday, July 29, 2009
Amazing Little Man
Well-- things are going okay. Jimmie is not doing near as much of the "scary puking". And "no" Rachael has not started him on the Bethanecol yet. She and Dr. S. discussed it and Jimmie has a check up in a week. So they will continue feeding him less (letting Jimmie say when he is done) and keep dosing him 3 times a day with Zantac. At his appointment they will assess his weight gain and determine if this is the right course for Jimmie. Hopefully he'll gain a respectable amount.
Sometimes Rachael can barely get an ounce down him before he's done. And most feedings are still hour long, fussy (sometimes screaming), back arching ordeals! Followed by another hour of handling Jimmie like a china doll, trying to keep him from puking. He seems to be breathing very easy though and Rach has not noticed anymore retractions so that's an answer to prayer!
Except for feeding time Jimmie is an amazingly good baby. Despite everything he's been through, he's peaceful, happy and easily consoled- even amidst his horrible reflux. He is such a fighter; An amazing little boy!
Thank you for your prayers!
Love,
Amber
Sometimes Rachael can barely get an ounce down him before he's done. And most feedings are still hour long, fussy (sometimes screaming), back arching ordeals! Followed by another hour of handling Jimmie like a china doll, trying to keep him from puking. He seems to be breathing very easy though and Rach has not noticed anymore retractions so that's an answer to prayer!
Except for feeding time Jimmie is an amazingly good baby. Despite everything he's been through, he's peaceful, happy and easily consoled- even amidst his horrible reflux. He is such a fighter; An amazing little boy!
Thank you for your prayers!
Love,
Amber
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