Heard from Connor and Katie's room while cleaning up:
C: Thank you for obeying, Katie.
K: You're welcome!
C: Thank you for saying, 'You're welcome'. Now, don't say you're welcome again, I just say thank you for saying 'you're welcome.'
Is there such thing as too much "thank you?" Apparently Connor thinks there might be. And once I did have a manager tell me to not say "thank you" so often because it came across as fake. Hmm... I do get a lot of pleasure from expressing gratitude, so please allow me (and my children =) to say "thank you" often. ;)
This morning while I was half dressed:
C: That orange shirt doesn't match those red shorts, Mommy!
M: You're right, I need to get dressed. (after) Now do I match? (with the "coral" shirt and tan corduroys)
C: No!
M: You're right, they don't match. But they look better (hopefully!)
Tuesday, May 31, 2011
Conversation at Breakfast
Between Mommy, Connor, and Katie.
C: Katie, what's wrong? (M is in kitchen)
K: My tummy is ouchy.
K: Mommy, you need to hold me, my tummy is ouchy.
M: That is not how you ask!
K: Mommy, please hold me, I have ouchy oatmeal in my tummy and my throat.
(Katie is put on Mommy's lap)
C: I have an ouchy tummy too.
M: Are you making that up so you can sit on my lap?
C: yeah
M: That kind of story is a lie. We do not tell lies, we tell the truth. You need discipline if you tell a lie.
C: But are you going to give me grace? (with anticipation)
M: Yes
C: (laughing with relief) Oh, I thought so
K: Oh, I actually (sounds like "ashually") have grace too.
Amen!
C: Katie, what's wrong? (M is in kitchen)
K: My tummy is ouchy.
K: Mommy, you need to hold me, my tummy is ouchy.
M: That is not how you ask!
K: Mommy, please hold me, I have ouchy oatmeal in my tummy and my throat.
(Katie is put on Mommy's lap)
C: I have an ouchy tummy too.
M: Are you making that up so you can sit on my lap?
C: yeah
M: That kind of story is a lie. We do not tell lies, we tell the truth. You need discipline if you tell a lie.
C: But are you going to give me grace? (with anticipation)
M: Yes
C: (laughing with relief) Oh, I thought so
K: Oh, I actually (sounds like "ashually") have grace too.
Amen!
Thursday, May 26, 2011
Super Secret Option "E"
Ah, Children's. and visits to Children's. Today we had 3 appointments. On the way to Children's, I was talking to my friend Meredith about what we expected. We expected to mainly find out about whether or not (really, when!) we could move to a G tube for Kara (straight into stomach through her skin). We knew it was a surgical procedure and was better for long-term feeding tubes. However, I was commenting to Meredith that every single time we've gone in for appointments, we have expected to learn "1 of 2 things" or "whether or not we'd need surgery" and were always given unexpected super secret option E or a barrage of different information than we expected. Today was no different.
Super secret option E today was learning that while a G tube sounds great for our situation, they do not manufacture them small enough for Kara. We'll re-evalute in a month. Ay, Karamba! Well, I have been wrestling with the idea of perseverance (from James) and its meaning in Greek of "remaining under". We are being asked to "remain under" the NG tube. Everything in my sinful, postmodern body wants to wriggle out of where God has me. I am thankful for His Word and the reminder to "remain under".
So now that you know super secret option E for today, I'll chronicle the day. We had an 11 a.m. ECHOcardiogram to check on Kara's pulmonary hypertension. I had a nice chat with the sonographer who is 36 weeks pregnant with her first. Kara just cooed and chatted (she's making Guh sounds and raspberries now) and was just a doll. Actually, I don't think she cried all day. Then Kara and I ate lunch (pretzels, chocolate milk, yummy cafeteria food!) outside in the sunshine.
Appointment #2 was with the dietician. Basically, Kara's growth is right on track. For the "average" baby this would be par for the course. For us, who are still determining her caloric intake, this is huge. We are currently stewards of exactly how much food goes in her body, and we want to do our job well. We also got some questions answered about calorie intake and gram/day weight gain for the future as well as when we start solids. We are being encourage to do spoon feeding (mostly milk) on the earlier side. I am thinking ("Hmm... where will I find time for THAT?")
Appointment #3 was with the general surgeon. He is truly an amazing doctor. He spent over an hour with us, looking at Kara, asking about her development, helping us understand her chest wall abnormalities, and G tube. He also gave us the ECHO results - her pulmonary hypertension is completely resolved, PTL! and her heart and the septum is looking better (b/c the heart was on the wrong side all of gestation, the septum in her chest wall is... shall I say... off-kilter. Probably looking at surgery in adolescence, but we'll worry about that later!) We also understand more about the G tube procedure, and are understanding that it is a pretty big deal. It would be another surgery and a 2 night hospital stay. So, now that we have at least another month on NG, let's be praying Kara starts eating lots and lots (she's eating about 150 out of her 770 mL by mouth).
Please also be praying for us. We are tired. When we look at our life and the support we have, and the children God has blessed us with, all looks good. But the daily logging, calculating, pumping, feeding, is taking its toll. We do want to "remain under" but we also want to be wise and try to have realistic limits for what we can expect of ourselves. Emotionally it has been very hard to try to "not worry" (translate: not care so much) about what Kara is eating orally. To those of you who have checked in on us, thank you. It is so helpful to stop and answer "how are you doing?" Without answering that question, I do not stop and reflect - I do not pause to discern whether or not I am thinking biblically about our situation.
Just for fun - here is what Kara did before church on Sunday. I love how the Lord pushes us toward a decision when Jeremy & I are asking each other "should we change her tube? Or at least her replicare?" Easy enough decision after Kara did this =)
This is Kara bringing something to her mouth to chew on - hooray for these little milestones!!
Super secret option E today was learning that while a G tube sounds great for our situation, they do not manufacture them small enough for Kara. We'll re-evalute in a month. Ay, Karamba! Well, I have been wrestling with the idea of perseverance (from James) and its meaning in Greek of "remaining under". We are being asked to "remain under" the NG tube. Everything in my sinful, postmodern body wants to wriggle out of where God has me. I am thankful for His Word and the reminder to "remain under".
So now that you know super secret option E for today, I'll chronicle the day. We had an 11 a.m. ECHOcardiogram to check on Kara's pulmonary hypertension. I had a nice chat with the sonographer who is 36 weeks pregnant with her first. Kara just cooed and chatted (she's making Guh sounds and raspberries now) and was just a doll. Actually, I don't think she cried all day. Then Kara and I ate lunch (pretzels, chocolate milk, yummy cafeteria food!) outside in the sunshine.
Appointment #2 was with the dietician. Basically, Kara's growth is right on track. For the "average" baby this would be par for the course. For us, who are still determining her caloric intake, this is huge. We are currently stewards of exactly how much food goes in her body, and we want to do our job well. We also got some questions answered about calorie intake and gram/day weight gain for the future as well as when we start solids. We are being encourage to do spoon feeding (mostly milk) on the earlier side. I am thinking ("Hmm... where will I find time for THAT?")
Appointment #3 was with the general surgeon. He is truly an amazing doctor. He spent over an hour with us, looking at Kara, asking about her development, helping us understand her chest wall abnormalities, and G tube. He also gave us the ECHO results - her pulmonary hypertension is completely resolved, PTL! and her heart and the septum is looking better (b/c the heart was on the wrong side all of gestation, the septum in her chest wall is... shall I say... off-kilter. Probably looking at surgery in adolescence, but we'll worry about that later!) We also understand more about the G tube procedure, and are understanding that it is a pretty big deal. It would be another surgery and a 2 night hospital stay. So, now that we have at least another month on NG, let's be praying Kara starts eating lots and lots (she's eating about 150 out of her 770 mL by mouth).
Please also be praying for us. We are tired. When we look at our life and the support we have, and the children God has blessed us with, all looks good. But the daily logging, calculating, pumping, feeding, is taking its toll. We do want to "remain under" but we also want to be wise and try to have realistic limits for what we can expect of ourselves. Emotionally it has been very hard to try to "not worry" (translate: not care so much) about what Kara is eating orally. To those of you who have checked in on us, thank you. It is so helpful to stop and answer "how are you doing?" Without answering that question, I do not stop and reflect - I do not pause to discern whether or not I am thinking biblically about our situation.
Just for fun - here is what Kara did before church on Sunday. I love how the Lord pushes us toward a decision when Jeremy & I are asking each other "should we change her tube? Or at least her replicare?" Easy enough decision after Kara did this =)
This is Kara bringing something to her mouth to chew on - hooray for these little milestones!!
Friday, May 20, 2011
Update
Hello!
I was reminded by a few friends today that yes, people are reading our blog and yes, updating (and not leaving you hanging) with results would be a good thing. Please do keep letting us know. Sometimes it feels like our posts just go out into cyberspace...
We had Kara's video fluoroscopy on Wednesday. She did not aspirate at all during the feed, but had some very delayed swallows. The video was an x-ray video of Kara's profile during her swallowing. VERY cool! The liquid would just hang out, just above her airway before she would swallow it down. Helpful to have the NG tube to see just where the liquid was supposed to be going. So, in short, she is having trouble, but she is protecting herself. Our little girl knows her limits and stops when she needs to.
We then met with OT/PT and had a blood draw. If we are ever at Children's for less than 3 hours, it will be a record! Bonus: on the way home I had a peanut butter shake and a burger. YUM!
Next on the Kara list is to go see the surgeon and dietician on Tue the 26th. I am really hoping we will get a green light to move to a G tube (straight into the stomach). We have already been on NG for 2.5 months, and it looks like it will be quite a few months more. Kara is only able to eat approx. 30% of her total volume by mouth.
Next on MY list is a conference at church this weekend with Kent Hughes on Disciplines of the Christian Life (of course! =) I am SO excited to get lots of spiritual food. Kara will come with me, and our other two will be at a friend from church's house. I am SO thankful for this opportunity and am praying I will have wisdom with how to apply what we learn in this stage of life.
My Mom is back, and the kids were so excited that they asked to spend the night last night, and she kept all 3 so I could hit the big Snoqualmie Ridge garage sale this morning. It was quite a successful venture and gave me some great sun and time with a friend, Joy. Thank you Mom! Speaking of, I better go pick the kids up...
I was reminded by a few friends today that yes, people are reading our blog and yes, updating (and not leaving you hanging) with results would be a good thing. Please do keep letting us know. Sometimes it feels like our posts just go out into cyberspace...
We had Kara's video fluoroscopy on Wednesday. She did not aspirate at all during the feed, but had some very delayed swallows. The video was an x-ray video of Kara's profile during her swallowing. VERY cool! The liquid would just hang out, just above her airway before she would swallow it down. Helpful to have the NG tube to see just where the liquid was supposed to be going. So, in short, she is having trouble, but she is protecting herself. Our little girl knows her limits and stops when she needs to.
We then met with OT/PT and had a blood draw. If we are ever at Children's for less than 3 hours, it will be a record! Bonus: on the way home I had a peanut butter shake and a burger. YUM!
Next on the Kara list is to go see the surgeon and dietician on Tue the 26th. I am really hoping we will get a green light to move to a G tube (straight into the stomach). We have already been on NG for 2.5 months, and it looks like it will be quite a few months more. Kara is only able to eat approx. 30% of her total volume by mouth.
Next on MY list is a conference at church this weekend with Kent Hughes on Disciplines of the Christian Life (of course! =) I am SO excited to get lots of spiritual food. Kara will come with me, and our other two will be at a friend from church's house. I am SO thankful for this opportunity and am praying I will have wisdom with how to apply what we learn in this stage of life.
My Mom is back, and the kids were so excited that they asked to spend the night last night, and she kept all 3 so I could hit the big Snoqualmie Ridge garage sale this morning. It was quite a successful venture and gave me some great sun and time with a friend, Joy. Thank you Mom! Speaking of, I better go pick the kids up...
Monday, May 16, 2011
Ups and Downs
*Grandma Dot (Jeremy's Mom) has been here this week. *phew* sigh of relief! She has been playing with the kids, cooking, and letting me get a good nap today!
*We've had a couple nicer days. What a blessing! Friday I got to run out to the outlet mall to pick up a birthday present and walk around OUTSIDE IN THE SUNSHINE. For this Colorado turned So Cal girl, that was a huge bonus.
*These pics are of the kids in the backyard on one of those days.
*Jeremy had to put in a few extra hours at work Saturday so we went to the indoor play place at Bellevue Square Mall. Connor said (at least 6 times, possibly more) "Mommy, it's fun to play here!" They had a great time climbing and running and playing.
*I am realizing that we are still under a high level of stress. I realize it when I have a lower "tolerance level" for quirks and oddities of every day life. Or when I break down crying at Children's hospital...
Thursday I packed up Kara and Connor for my dentist appointment followed directly by a trip to Children's (after swinging by home to get Kara's enteral pump I had forgotten for her milk through feeding tube - oops!!). Upon arrival at Children's, I was informed that our video fluoroscopy (swallowing study) had been rescheduled. It was changed to May 25 (2 weeks later). After being on the phone for 10 min. I was given a "consolation prize" of a feeding therapist watching me feed Kara and a reschedule for May 18. I was also given a certificate for the cafeteria (at least they have chocolate milk and pretzels... =) The hardest thing about this was how wound tight we had been about Kara's possible aspiration. We think she does aspirate at least occasionally, but God is giving grace for the additional waiting we are needing to do.
Earlier that day, our North Bend feeding therapist observed that Kara has reflux (not projectile vomiting or anything, but her body language communicates quite a bit of pain). This might be contributing to her eating lower volumes, so she suggested a few ways to help. Kara's reflux was confirmed at Children's that afternoon and we called in to get a prescription. The prescription she was given is the same one that she was one when we had her dangerously high potassium levels while inpatient at Children's. So now I am requesting a blood test to make sure it does not recur (if it gets to the level it was, it could do electrical damage to her heart).
Add this to the ultrasound results (some abnormalities) and Drs. asking me "who's coordinating care?" and "what's the feeding plan?" - questions to which I have to answer "me." and "I don't know.", 6 phone calls with providers, a few bills with insurance discrepancies, and you can see why the title of this post is ups and downs. It's been a difficult week (er, 6 months). God's grace continues to be sufficient, but please keep praying! We are feeling the weight of all these decisions and concern for doing what's best for our baby.
We would also request prayer that the Drs. will allow Kara to change from NG (naso grastral) to a G (gastral) tube. This tube goes through the skin directly to the stomach. She has not been progressing (and has done some regressing) on her oral feeds, so a feeding tube of some type is looking like a long-term reality. G tube is better for long term, but the Doctors need reason to believe it will be long term. There are several reasons we would like a G tube, but one of them is that our baby girl likes to suck her hands. We would like to let her (without danger of pulling a tube out).
Connor and Katie are learning to take good care of their babies too:
*We've had a couple nicer days. What a blessing! Friday I got to run out to the outlet mall to pick up a birthday present and walk around OUTSIDE IN THE SUNSHINE. For this Colorado turned So Cal girl, that was a huge bonus.
*These pics are of the kids in the backyard on one of those days.
*Jeremy had to put in a few extra hours at work Saturday so we went to the indoor play place at Bellevue Square Mall. Connor said (at least 6 times, possibly more) "Mommy, it's fun to play here!" They had a great time climbing and running and playing.
*I am realizing that we are still under a high level of stress. I realize it when I have a lower "tolerance level" for quirks and oddities of every day life. Or when I break down crying at Children's hospital...
Thursday I packed up Kara and Connor for my dentist appointment followed directly by a trip to Children's (after swinging by home to get Kara's enteral pump I had forgotten for her milk through feeding tube - oops!!). Upon arrival at Children's, I was informed that our video fluoroscopy (swallowing study) had been rescheduled. It was changed to May 25 (2 weeks later). After being on the phone for 10 min. I was given a "consolation prize" of a feeding therapist watching me feed Kara and a reschedule for May 18. I was also given a certificate for the cafeteria (at least they have chocolate milk and pretzels... =) The hardest thing about this was how wound tight we had been about Kara's possible aspiration. We think she does aspirate at least occasionally, but God is giving grace for the additional waiting we are needing to do.
Earlier that day, our North Bend feeding therapist observed that Kara has reflux (not projectile vomiting or anything, but her body language communicates quite a bit of pain). This might be contributing to her eating lower volumes, so she suggested a few ways to help. Kara's reflux was confirmed at Children's that afternoon and we called in to get a prescription. The prescription she was given is the same one that she was one when we had her dangerously high potassium levels while inpatient at Children's. So now I am requesting a blood test to make sure it does not recur (if it gets to the level it was, it could do electrical damage to her heart).
Add this to the ultrasound results (some abnormalities) and Drs. asking me "who's coordinating care?" and "what's the feeding plan?" - questions to which I have to answer "me." and "I don't know.", 6 phone calls with providers, a few bills with insurance discrepancies, and you can see why the title of this post is ups and downs. It's been a difficult week (er, 6 months). God's grace continues to be sufficient, but please keep praying! We are feeling the weight of all these decisions and concern for doing what's best for our baby.
We would also request prayer that the Drs. will allow Kara to change from NG (naso grastral) to a G (gastral) tube. This tube goes through the skin directly to the stomach. She has not been progressing (and has done some regressing) on her oral feeds, so a feeding tube of some type is looking like a long-term reality. G tube is better for long term, but the Doctors need reason to believe it will be long term. There are several reasons we would like a G tube, but one of them is that our baby girl likes to suck her hands. We would like to let her (without danger of pulling a tube out).
Connor and Katie are learning to take good care of their babies too:
Tuesday, May 10, 2011
Amazing!
I do not know why I am still amazed by God... yes, I do! I cannot understand or fathom Him, so when He gives me a glimpse of who He is, I am amazed. I know He is all powerful and controls all things yet I do not always "see" it so obviously. This morning when I was (well, still am) quite fatigued, weary, hurting at 7:30 a.m.... I felt I could not even muster the strength to pray (which I knew I needed to do). So, after Katie asked for a nap (probably just wanted "blankie time" but if she asks for a nap, I gladly let her stay in her crib for about an hour... usually she really does nap, but today I believe she won't), then Connor asked for a nap (not normal! He must really be behind on sleep), and of course I put Kara to sleep (she still sleeps a lot). I called a dear friend to ask her to pray for me. I usually cannot "catch" this dear friend because she is also a Mom who (rightly so) has many Mommy priorities that rank higher than answering the telephone. But I figured God knew if she was available. She was and was currently praying for me after just finishing the blog update I had just posted. WOW. As you can imagine, I was in tears at God's showing me how much He cares for me and tangibly reminding me of His absolute sovereignty over all things. (I mentally always know that, but I don't always practically know that... anyone relate?)
I just wanted to share my reminder at how BIG and GREAT God is. Yet He chooses to care about my "little" emotions. *sigh* I am truly "leaning on the everlasting arms" - what a gift.
I just wanted to share my reminder at how BIG and GREAT God is. Yet He chooses to care about my "little" emotions. *sigh* I am truly "leaning on the everlasting arms" - what a gift.
Quickie
God has been gracious in allowing Kara's swallowing study to be this Thursday. We are very thankful. Since last Friday, we feel we have seen several evidences of Kara "aspirating" - this morning a pretty good one. Aspiration means getting fluid in lungs. So, it kind of sounds like a positive word, but it's definitely not. My heart literally hurts and is heavy when I see that. I just want to "help my baby." But she is in more capable hands than mine. Thank you, Father!
Please continue to lift us up. We are pretty weary (part of it possibly due to Kara's pulling out her NG tube... with gloved hands... at 2 a.m. the past 2 nights ??). Trying to be appropriately concerned but not anxious. Thank you for joining us in taking our burdens to the Lord.
Please continue to lift us up. We are pretty weary (part of it possibly due to Kara's pulling out her NG tube... with gloved hands... at 2 a.m. the past 2 nights ??). Trying to be appropriately concerned but not anxious. Thank you for joining us in taking our burdens to the Lord.
Saturday, May 7, 2011
Saturday, May 6
It's been a while since an update. Let's start with some Kara pictures. These are from me trying to get a picture of her smile. As you probably know, capturing a baby's smile is difficult. But we tried!
This has been a full week. (aren't they all?) Monday all 3 kids went with me to Kara's 2 month appointment. The doctor felt that her liver was enlarged, or at least more "hard" (not squishy) than normal, so we scheduled an ultrasound for Kara at Children's. At this point in our journey, it's just "one more thing", we were going to Children's twice this week anyway... we are expecting everything to come back normal, but we'll know for sure next week. In the meanwhile, though, Kara has been a little extra fussy so Jeremy and I wonder "are her innards squished because of her large liver?" Thoughts that never would have entered our mind. So we continue to ask God to help us to think on what is TRUE and not worry or be anxious about things that are maybe (but to be wise with our child's health, of course).
Thursday we had the ultrasound at 4:30 (Jeremy was able to be there also) and then went straight to the Children's expansion fundraiser. The timing was awesome (thanks, God!) We enjoyed some mingling, and we were given 10 minutes to share Kara's story. We were honored to have the opportunity, we were 1 of only 4 speakers at the event. We were given much grace and did not "um" or "uh", and I did not turn bright red. So thankful! We did bring Kara, and she was great. She was tired and is almost growing out of the "sleeping on Mommy" phase, but she did well and many people thanked us for sharing and doted on Kara. Children like her are why they are such generous supporters of Children's. We were privileged to meet the head of the NICU, the CEO of Children's, and got to catch up with the head of General Surgery (in charge of Kara's continued care). He gave us a little info about the pulmonary department, and spoke especially highly of the pulmonary dietician.
Friday we met with the pulmonologist (lung Doc) about Kara. He had a good knowledge of her history. He recommended with get another ECHO within the month to make sure her pulmonary hypertension has resolved, and we are getting a fluoriscopic swallowing study in the next few weeks (I hope I said that correctly). It's basically an x-ray imaging to tell how she is swallowing. With her condition, it is possible that she's aspirating (getting fluid in her lungs due to uncoordinated swallowing). The last thing we want is to in any way make it more difficult on her lungs. The pulmonologist assured us that "yes" her lung development was compromised in utero. Her lungs are definitely smaller and possibly less "functional" (for lack of better words) than "normal". However, from here on out, they should develop normally so our goal is good growth. Jeremy and I have goals that we are balancing. Previously our highest goal was getting her off the NG tube. Now it is to not "push" her too much and to promote good growth (meaning possibly not waking her up to bottle feed during the day?? We don't know what this will look like, but it's causing us to re-evaluate what we do). The good news is that we are going to relax a lot more about how much she's taking by mouth and be thankful that she can get the calories she needs to grow well by mouth or through her tube.
We then met with the dietician who is awesome. She said Kara's growth has been great and she's on exactly the right amount of "calories per kilo". Which is a relief. We have been monitoring her growth at home and adjusting her "volume" and "fortification" (extra formula added) and apparently have done a good job... phew! If we would have followed their advice to a "T" she would have gained way too much weight. We will continue to have access to the dietician's expertise until Kara is off the tube and in charge of her own caloric intake.
We have, by God's grace, just taken one step at a time in this journey. We felt like "a few months after surgery" we would be done. However, it is more probable that Kara's lungs will affect her ability to do normal things until age 6 or beyond, and so we adjust our expectations and are thankful for God's grace in giving us the information we need, when we need it.
This has been a full week. (aren't they all?) Monday all 3 kids went with me to Kara's 2 month appointment. The doctor felt that her liver was enlarged, or at least more "hard" (not squishy) than normal, so we scheduled an ultrasound for Kara at Children's. At this point in our journey, it's just "one more thing", we were going to Children's twice this week anyway... we are expecting everything to come back normal, but we'll know for sure next week. In the meanwhile, though, Kara has been a little extra fussy so Jeremy and I wonder "are her innards squished because of her large liver?" Thoughts that never would have entered our mind. So we continue to ask God to help us to think on what is TRUE and not worry or be anxious about things that are maybe (but to be wise with our child's health, of course).
Thursday we had the ultrasound at 4:30 (Jeremy was able to be there also) and then went straight to the Children's expansion fundraiser. The timing was awesome (thanks, God!) We enjoyed some mingling, and we were given 10 minutes to share Kara's story. We were honored to have the opportunity, we were 1 of only 4 speakers at the event. We were given much grace and did not "um" or "uh", and I did not turn bright red. So thankful! We did bring Kara, and she was great. She was tired and is almost growing out of the "sleeping on Mommy" phase, but she did well and many people thanked us for sharing and doted on Kara. Children like her are why they are such generous supporters of Children's. We were privileged to meet the head of the NICU, the CEO of Children's, and got to catch up with the head of General Surgery (in charge of Kara's continued care). He gave us a little info about the pulmonary department, and spoke especially highly of the pulmonary dietician.
Friday we met with the pulmonologist (lung Doc) about Kara. He had a good knowledge of her history. He recommended with get another ECHO within the month to make sure her pulmonary hypertension has resolved, and we are getting a fluoriscopic swallowing study in the next few weeks (I hope I said that correctly). It's basically an x-ray imaging to tell how she is swallowing. With her condition, it is possible that she's aspirating (getting fluid in her lungs due to uncoordinated swallowing). The last thing we want is to in any way make it more difficult on her lungs. The pulmonologist assured us that "yes" her lung development was compromised in utero. Her lungs are definitely smaller and possibly less "functional" (for lack of better words) than "normal". However, from here on out, they should develop normally so our goal is good growth. Jeremy and I have goals that we are balancing. Previously our highest goal was getting her off the NG tube. Now it is to not "push" her too much and to promote good growth (meaning possibly not waking her up to bottle feed during the day?? We don't know what this will look like, but it's causing us to re-evaluate what we do). The good news is that we are going to relax a lot more about how much she's taking by mouth and be thankful that she can get the calories she needs to grow well by mouth or through her tube.
We then met with the dietician who is awesome. She said Kara's growth has been great and she's on exactly the right amount of "calories per kilo". Which is a relief. We have been monitoring her growth at home and adjusting her "volume" and "fortification" (extra formula added) and apparently have done a good job... phew! If we would have followed their advice to a "T" she would have gained way too much weight. We will continue to have access to the dietician's expertise until Kara is off the tube and in charge of her own caloric intake.
We have, by God's grace, just taken one step at a time in this journey. We felt like "a few months after surgery" we would be done. However, it is more probable that Kara's lungs will affect her ability to do normal things until age 6 or beyond, and so we adjust our expectations and are thankful for God's grace in giving us the information we need, when we need it.
Monday, May 2, 2011
Kara, 2 months
Kara is exactly 2 months old today. Wow! I took all 3 kids to her 2 month check-up. First time out, and I thought we did great (yes, I am biased). No one went hungry, no potty accidents, and no major meltdowns... phew!
On the way there, Connor admonished me, "Mommy, you need to focus on the road!" I was focusing on the road, but I guess a good reminder is always in order =)
Kara is growing just great, and she is eating better these days. We have discovered she does better if we literally stick the bottle in her mouth (as if saying "o.k. it's time to eat, whether you think so or not" ;) I guess she need a firm hand (???) Her all time record is 70 mL. We consider 30 mL to be "not good". Her total feeding amount is 100 mL. So... we're getting there, bit by bit. I'm praying for the tube to be out at 4 months. We'll see what God has in mind.
She continues to smile, has several types of cooing sounds, and is a joy to be around.
So, I would like to share one more Connor quote from after his nap. He got up and went potty, and had the disheveled hair but content (no longer tired) look, and I commented that "you are cute... and stuff" He responded "I'm not so cute... but lots of handsome!"
On the way there, Connor admonished me, "Mommy, you need to focus on the road!" I was focusing on the road, but I guess a good reminder is always in order =)
Kara is growing just great, and she is eating better these days. We have discovered she does better if we literally stick the bottle in her mouth (as if saying "o.k. it's time to eat, whether you think so or not" ;) I guess she need a firm hand (???) Her all time record is 70 mL. We consider 30 mL to be "not good". Her total feeding amount is 100 mL. So... we're getting there, bit by bit. I'm praying for the tube to be out at 4 months. We'll see what God has in mind.
She continues to smile, has several types of cooing sounds, and is a joy to be around.
So, I would like to share one more Connor quote from after his nap. He got up and went potty, and had the disheveled hair but content (no longer tired) look, and I commented that "you are cute... and stuff" He responded "I'm not so cute... but lots of handsome!"
Subscribe to:
Posts (Atom)