|
 |
|
MORGAN GRACE - THE SWEET AND THE SOUR.
kristina - preemie mom & former ICU RN |
|
| Category: Home | Sun | Mon | Tue | Wed | Thu | Fri | Sat | | | | 1 | | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 | 11 | 12 | 13 | 14 | 15 | 16 | 17 | 18 | 19 | 20 | 21 | 22 | 23 | 24 | 25 | 26 | 27 | 28 | 29 | 30 |
|
|
|
|
MT SAINT MORGAN!
|
|
Jun 16, 2010 10:16pm (EST)
Like I keep saying, I have been working with lots of parents of kids with feeding issues. One thing they all have in common is that the daily, never ending grind of feeding issues is extremely draining & frustrating for them. In some ways, the fact that you never ever get a day off from feeding issues, makes them harder to face than some other issues. I was thinking today about how things were for us before I put Morgan on the Blended Diet, and posted the following on my facebook support group - "Loving A Miracle - Special Parents Supporting Each Other" I thought you all might find it amusing too;
I was thinking about how humor is a good way to help take the edge off stress & remembered this:
When we were dealing w/Morgan's projectile vomiting 3-6 times everyday, we called her Mt Saint Morgan, because she was like Mt Saint Helen, the volcano. Here is the song I wrote about it: (sung to the tune of the Sponge Bob Squarepants Theme)
Oh, she's home from the hospital
She lives with me.
Mt Saint Morgan!
Lovely, & funny & cute is she
Mt Saint Morgan!
But when you feed her she starts to spew
Mt Saint Morgan!
& if you're not careful
She'll throw up on you
Mt Saint Morgan!
If a frustrating task is something you wish
Mt Saint Morgan!
Then drop on the floor & clean up the mess!
Mt Saint Morgan!
Mt Saint Morgan!
Mt Saint Morgan!
Well, at least it always made me laugh.
Anybody else have funny stories to share? I can always use a good laugh.
|
|
|
Posted by kristina - preemie mom & former ICU RN | Comments: (3) | Permalink
|
|
|
AWOL
|
|
Jun 11, 2010 05:49pm (EST)
Yikes! I have been gone for way too long. I have gotten so busy with my blended diet work, I have just not had time to be on here. Sorry. Consider this my blanket apology. I will try to do better!
The Sweet:
My work helping people get their G tube fed kids off formula and onto the blended diet is very time consuming, but worth every minute. So far, almost every single one has had big improvements!
Morgan is doing well. No ear infections since she got her tubes put in. Yea! I think that is over finally.
Morgan finished up her first preschool class, and all in all I have to say feeding-wise it went better than I feared. The teacher & her assistant worked really hard to get her fed. We will miss them.
The Sour:
It sounds like we will have a new teacher & assistant next year. They are moving Morgan's class, which is a special self contained class for kids with communication disorders, to another school in the district. They did not offer the current teacher the position. Mostly from what I see, it was due to a personality conflict with the principal & not anything to do with her competence as a teacher. I didn't have much contact with the principal, but when I did, I got the distinct feeling that in general she is somewhat less than likable. I have emailed everyone I can think of to speak up for the teacher, but it looks like they have their minds set. I am not looking forward to adjusting to another teacher & waiting for her to get up to speed with feeding Morgan & learning her quirks. *sigh*
I had a really scary thing happen to me last week. I suddenly had a big "C" shaped blurry place in the right side of my field of vision. With my clotting issues, I am at a high risk for stroke, so it really scared me. For a few minutes there, I thought I was actually having a stroke, & I was alone with the kids. I called my mother who works closer to my house than my husband, & told her to come take me to the ER. (Yes, I know I should have called 911, not my mother.) While I was waiting for her to get to me, I called my eye doctor. He immediately reassured me that what was happening was classic for a visual aura that precedes a migraine headache. He was even able to stop me in the middle of my description & describe to me what I was seeing. The "C" shape got bigger and then moved more toward the center of my field of vision. There were squiggly lines & lights inside the "C" shape. So then I thought, since there is really not much for the ER to do about a migraine that I would just stay home. My family quickly over ruled me, & off to the ER I went. They worked me up for a stroke & heart attack just to be safe (darn clotting issues), then told me it was in fact, a migraine with visual aura & sent me home. They gave me an IV dose of toradol. I felt like crap for about three days. For the first two days I had periods of time when I could not see well, which is very annoying, but far less scary now that I know it is not a stroke! I was feeling okay about the whole thing, glad to have it not be a stroke, then someone had to burst my bubble & tell me new onset of migraine with visual aura increases the likelihood of having a ischemic (clot related) stoke in the near future. Just GREAT! I could have lived without knowing that little jewel of information. You know?
Thanks for taking time to read this. I have missed you all, & can't wait to get caught up with everyone soon. You can always find me on facebook under Kristina Smith Blizzard.
|
|
|
|
Posted by kristina - preemie mom & former ICU RN | Comments: (3) | Permalink
|
|
|
TOTALLY WORTH MY TIME.
|
|
Mar 29, 2010 07:55pm (EST)
The Sweet:
As I have said before, I have been working with other mothers, helping them to get their G tube fed kids off of formula and onto real food, which is blended up like a smoothie. It has been time consuming, but soooo worth it. I talked with one of the mothers earlier tonight, and she is thrilled with the changes in her son. He is no longer using a feeding pump. He is no longer on any nighttime feeds, which used to cause him to wake up gagging for hours each night. His gagging is down by 75%. He is meeting his calorie and nutrition goals. She said she has had her first full nights sleep since her son was born. How great is that?
It is so important to me to be able to use what I have learned to help others, for something good to come from what Morgan has suffered. I started trying to help other people make the switch to real food, because I saw what a dramatic difference it made in our lives, how much it helped Morgan. I know there are so many other kids out there suffering for the lack of this little bit of knowledge, and it makes me so very happy to be able to help some of them. That phone call made my night!
The Sour:
Oh, I am in too good of a mood to even think of a single negative thing to say. 
Good night all!
|
|
|
|
Posted by kristina - preemie mom & former ICU RN | Comments: (3) | Permalink
|
|
|
NO MORE EAR INFECTION & GASTRITIS AGAIN.
|
|
Mar 26, 2010 11:34am (EST)
The Sweet:
Morgan FINALLY appears to be over her marathon ear infection!!! Thank Goodness. Hopefully, that is the end of that.
She did have tubes placed in her ears on March 8th. The doctors did better easing her out of the sedation, and while she cried for a while after she woke up, it was not the total freak out that she usually has had in the past.
Morgan has also gained the weight back that she lost while sick with that ear infection, and her little belly is slightly round again.
Just one of Morgan's little quirks it that she usually throws up when she is let down to play in open spaces, like our back yard. She will be happily playing then cough, gag, throw up, and immediately go right back to playing like it never happened. The neurologist thinks that her brain injury may have caused a distortion in the connections between her ears and eyes, between her balance and her vision. I think he means she sort of gets "sea sick" when she is out running around outside. It is strange that it only happens in really open spaces, it never happens when she runs around inside the house. Now that it has warmed up some, she is able to go out on the playground at preschool, which she LOVES. I am surprised, and happy to tell you, that she does fine at the playground at school, and has never thrown up there. I think that is because their playground is small, enclosed with a fence, and has large trees that make a pretty good canopy above. Visually it is not as wide open as our back yard.
My facebook support group for special needs parents, "Loving A Miracle", is a bit over one month old and has 42 members.
I have been working a lot on my blended diet tutorial booklet. It is about 16 pages right now, and not quite finished, but I have given the rough draft to several people and have been getting good reviews so far. I have a few more things I want to include and am eager to have it finished. I will make it available to anyone interested. This is a labor of love, and not something I am looking to make any money on. I have been helping people get started on the blended diet for a while now, and I kept finding myself repeating the same basic information over and over again. I wanted an easier way to give people the basic information, so I could spend my time answering their specific questions, instead of repeating myself. I am excited about being able to help get the information out there to more people who really need it.
The Sour:
While Morgan has gained the weight she lost back, she is still not eating well at school, which means I am spending more time feeding her at night than I would like, and I am sending my reflux prone child to bed stuffed like turkey every school night.
I had to call a sub-arch meeting to get feeding goals included on Morgan's IEP (Individualized Education Plan). The principal said in order to make the accommodations needed to help her eat at school, it needed to be on paper. This way no one can give the teacher grief for doing what needs to be done to feed her.
They finally listened to me, and found her a small quiet room to eat in, away from the other kids, and the very enticing toys. The first day they used it, she ate twice what she has been eating at school. However, it apparently takes an act of Congress to get a key made for the room, and it is sometimes locked. They are working on getting a key made. If that is not done soon, I will become a squeaky wheel until it is taken care of. 
Morgan still has gastritis. The GI team feels pretty sure that it is from all the antibiotics she took for her ear infection, and not something I am putting in her blends. Just to be sure, I have gone back to using some of the first recipes I wrote for her blends when she first started the blended diet. They are written to be as "hypoallergenic" as I could make them. Once she is over the gastritis, I can start adding new foods back in again, one at a time, slowly, to see if any of them are a problem for her. It is so sad to see her suffer with that again. I pray she gets over it soon.
I am sorry I have been a bit MIA lately. I have been really busy, and it has been hard to find time to sit still at the computer long enough to do all the things I want. I promise to try to catch up asap. 
|
|
|
|
Posted by kristina - preemie mom & former ICU RN | Comments: (2) | Permalink
|
|
|
"WALK" & TIME FOR TUBES
|
|
Mar 08, 2010 06:33am (EST)
The Sweet:
Morgan's preschool teacher said that Morgan is make some progress in class. She is cooperating better, and is starting to participate in activities a bit more. It is a step in the right direction in any case, baby steps are okay with me.
There is a little boy in her class that absolutely hates when they turn the light off for nap time. He repeatedly goes to the light switch and turns it back on. The teacher has finally taped the light switch to slow him down. Morgan has seen him flip the switch lots of times. Yesterday, she started flipping all the light switches in the house on. She has never touched them in the past. I had to laugh because now, no one can say she hasn't learned ANYTHING at school.
We are hearing tiny bits of appropriate speech from her, just here and there. A few days ago, she took the teacher's hand lead her to the classroom door and said, "Walk!" Of course, the teacher took her for a walk immediately. We always bend over backwards to reinforce the idea that if you use your words, you can get things you want. It is a simple, yet very important concept. Once she figures that out, she will be motivated to appropriately use her words by everything she wants.
My facebook support group, "Loving A Miracle", is growing, there are 36 members now.
My blended diet tutorial is coming along, but not quite finished. I am pleased with how it is turning out.
The Sour:
Morgan has seen the ENT twice. The first time he said that her ears didn't look bad enough to be causing her screaming.  He said she had some negative pressure in her ears, and the eardrums were pink, but not red, that maybe her eardrums are always pink. (normal is kind of clear, or translucent) I obviously can't see her eardrums, but I know my child, waking up screaming in pain, has always meant it was her ears.
Unfortunately, she does have gastritis again right now, so he has something else to blame it on. While gastritis is painful, I know what my daughter's symptoms of gastritis are, and they have never included waking up, screaming inconsolably, in obvious pain. With her gastritis, she is very hard to feed, gags and vomits randomly throughout the day, and wakes up after about one hour of sleep, cries, gags and throws up, then she goes back to sleep for the rest of the night. She never stays up all night like she has been doing, with her gastritis, not even when she had it so bad she was throwing up blood!! My experiences tell me it is her ears, but he had me doubting myself. So the ENT said he wanted to just watch and see if her ears got worse, before deciding to put tubes in her ears.
Now, I am not eager to place tubes in her ears, but I have had enough watching her scream in pain, and sitting up with her half the night, every night. Besides, I expect her to get lots of respiratory infections over the next few months and years, the odds of her getting more ear infections is pretty high in my opinion.
We went back to see him one week later and he said her ears were still, pink and now she has fluid in her left ear. Still he wanted to wait and check her again in ONE MONTH.  Really? He wanted me to let her go on like this for a MONTH. A few days (and very long nights) later, I called him back and said, you tell me what to do, she is miserable, and no one is getting any sleep. She ended up with another round of Zithromax and is scheduled for surgery to place tube in her ears this morning.
Please, God, let this help Morgan. The poor child deserves a break, and sleep, sleep would be nice. I seem to remember sleep, but is has been so long ago....YAWN...
Morgan has only had two ear infections in her life, but both of them required many, many rounds of antibiotics to clear up. The ENT said it may be because of Morgan's "dysmorphic features". Dysmorphic features, that medical speak for when something is not shaped normally. Morgan's head is slightly larger on the right than the left. That is probably due to the fact that her brain is larger on the right than the left, thanks to the loss of more brain tissue on the left than the right from her stroke. It is not really all that noticeable, unless you know to look for it. He says it is enough that it may have tweaked the tube that runs from her inner ears to her throat. If they can't drain well, it can cause these hard to treat ear infections. Hearing the words, "dysmorphic features" stung a bit. It isn't like I didn't know she had them, I just didn't like hearing it. 
I am not really worried about the surgery. It is the waking up from sedation I am worried about. Both of my kids always wake up absolutely psychotic, arms and legs flying, screaming. It lasts for a good while. It is hard to watch, but even harder to hold on to them so they don't hurt themselves! Anybody else have this problem? I am thinking about asking the doctor to give her something to relax her so she will wake up calmer, but I am not at all sure they will do that. Wish me luck.
I better go, time to get her dressed for the hospital. I am going to let her wear a clean set of PJs, so she will be comfortable.
|
|
|
|
Posted by kristina - preemie mom & former ICU RN | Comments: (3) | Permalink
|
|
|
LOVING A MIRACLE & CALLING IN AN ENT
|
|
Feb 24, 2010 05:12am (EST)
The Sweet:
As some of you know, I have been befriending preemie and special needs mothers on facebook, for a while now. I think there are about 27 of them at this point. I started making it a point to introduce them to each other, and lately the suggestion was made to me, that I should start my own facebook group for them. Well, I did that last night. It is called, "Loving A Miracle - Special Parents Supporting Each Other". I think it is so very important to for preemie, and special needs parents, to give, and receive support from each other. It feels really good to help facilitate that. I know how lonely and isolated I felt, when I didn't know any one with similar issues. I wanted to reach out to others who, I can only assume, feel much the same way I did. If you are on facebook, you are officially invited to join us, if you'd like.
Here is the link, if it doesn't work just copy, and paste it to your browser.
http://www.facebook.com/group.php?gid=325329864348&ref=mf
The Sour:
Morgan woke up from her nap SCREAMING in pain, AGAIN. Yesterday was day 4, of her 6th antibiotic, for this ear infection. The Pediatrician said since this is her first ear infection in a long time, and only her second one ever, that I should wait a bit longer to call in an ENT. Sorry, but I am done watching my child suffer like this. I am calling an ENT first thing this morning, and hoping I can get her in to see them quickly. Wish us luck. One way or the other, this has got to end.
Hope all is well with you.
|
|
|
|
Posted by kristina - preemie mom & former ICU RN | Comments: (4) | Permalink
|
|
|
IT'S BENIGN! & GASTRITIS?
|
|
Feb 23, 2010 11:26am (EST)
The sweet:
I got the results of my biopsy to rule out thyroid cancer. It was benign. Thank you God! I will have to have the biopsy done again in about a year. If it still comes back benign then, I will have to have the biopsy done every other year from then on out. My husband said, he doesn't want to wait a whole year to recheck it. He thinks 6 months is a better idea. Easy for him to say, it isn't his throat they would be jabbing with a needle. A year sounds fine to me.
Like I said before, this thyroid issue is not going to go away. It will be a life long concern, but for now, I am relieved to be able to keep my embattled thyroid for a while longer.
I weighed Morgan at home this morning, and she weighed 31.5 pounds. Yea! We are headed in the right direction.
The sour:
Morgan is currently on her 6th antibiotic for her ear infection. I am starting to wonder if it will ever end. I asked if I should just go on, and have her see an ENT, but was told not yet. This is the first ear infection she has had in a very long time. It has just lasted seemingly forever. She also has a new cold, mostly just sniffles so far, no cough.
She threw up once on Saturday night, it is the first time she has thrown up in a long time. She threw up again yesterday, once during the day, just seemingly out of the blue, then she woke up last night about an hour after going to sleep, crying in pain, and then threw up. I gave her Maalox and she calmed down quickly. That is the pattern we would see, when she had gastritis in the past, when she was on formula. I am not positive it is gastritis yet, but my level of suspicion is high. I am very bummed out, because I was hoping she would never get gastritis again, since she is off formula. To be fair, being on antibiotics for so long may be the cause. I also have increased the oil in her blends, from 3 teaspoons a day, to 4.5 teaspoons a day, in an attempt to help her gain back the weight she has lost, maybe the extra oil is the problem.
It is hard to express how upsetting it is to be dealing with these feeding issues again. I hate being the calorie police again, counting every calorie she eats, and being back to worrying about gastritis again. It is no fun, spending every day constantly thinking about how much she has eaten, and skipping outings because she doesn't eat well anywhere but home. I really had hoped we were past all that.
The whole cancer scare really stressed me out. I am having trouble shaking the nerves. Apparently, I don't diet well when I am stressed either. I gained a pound. Oops!
For today, I am going to just try to relax, a bit. (And not eat myself into a new pants size!)
Thanks for all the prayers and support, You all are the best.
If you comment on my blog, and I don't routinely comment on yours, leave me the name of your blog, maybe I just haven't been able to find it. I always intend to return the favor.
|
|
|
|
Posted by kristina - preemie mom & former ICU RN | Comments: (7) | Permalink
|
|
|
"HERE" & HOLY MOTHER, THAT HURT!!
|
|
Feb 21, 2010 06:39am (EST)
The sweet:
Morgan is up to 31 pounds, so still down one pound from January 8th, but headed in the right direction. She has been fine with the changes I made to her blends, to add in more calories, which is helping.
Her teacher & the teacher's assistant are being very helpful. They are trying very hard to help Morgan met her feeding goals at school. They still aren't quite making the goal, but getting a lot closer to it. I am having to play catch up feeding-wise, every night after school, not fun, but I am getting it done.
Last night, Morgan picked up her bottle, handed it to my husband and said, "Here." Yea, for a little bit of appropriate speech!
My blended diet tutorial is coming along. I am not done yet, but I am getting there. I am looking forward to having Morgan's former speech therapist critique it for me.
My little group of preemie moms that I know on facebook, has grown to about 25 total. A few of them are mothers of special needs kids, but since most former micro preemies have special needs anyway, they definitely fit right in. It is great how supportive they are of each other. It has been suggested to me that I start my own facebook group for them. I love the idea. I am now considering names for the group. I want to include the special needs moms too, so I don't want to name it "Preemie" something. I was thinking of something like, "Special Mommy Matters", but was told I should not have the title be gender specific, because there are a lot of primary caregivers who are Dads these days. My husband came up with "Amazing Gains". Someone else said "Morgan's Grace", which I think might be a bit too shameless. I am asking for your suggestions. I want it to be something about the challenges, the triumphs, and the miracle of our kids. You can leave suggestions on the comments here, or email them to me at kristinablizzard@yahoo.com. I would appreciate your input.
The sour:
The principal at Morgan's school walked by Morgan's classroom, and twice in one day, heard "Signing Time" being played. She told the teacher that she can't have it on more than once a day. The teacher explained to her that we use it to help Morgan eat. She watches it while she eats. Without it, she is up and running around the room, instead of eating. The principal informed her she could not make those kinds of accommodations, since they are not listed in Morgan's IEP. (Feeding goals were not addressed in the IEP, a HUGE oversight on every one's part. ) This happened last week, before I had told the teacher how much weight Morgan has lost. So, when we got back to school, after our snow break, on Wednesday, the teacher told me, I needed to talk directly to the principal, and explain what was going on, so she would understand, and not try to interfere anymore.
The principal was very nice to me on the phone. She told me who I needed to contact to set up an sub-arch meeting, to make the needed changes to Morgan's IEP. After I got off the phone with her, she spoke to Morgan's teacher, and said, "I don't know what the big deal is. Why don't they just put in a feeding tube? It would be so much easier." The teacher told me that on Wednesday, as I was picking Morgan up from school, right after having had my biopsy to rule out thyroid cancer. I was a bit stressed out that day, and am so VERY GLAD the principal did not say that to me. I don't know what my response may have been, but it could have been ugly, considering my frame of mind that day. Her nerve, and apparent complete ignorance, just boggles my mind.
Speaking of my biopsy, WOW. It hurt A LOT more than I expected. Online, it said that they would numb the site with Novocaine, prior to the biopsy, so I thought the numbing injections would probably be the worst part. NOT! My doctor doesn't use Novocaine. She uses some cold spray instead, to numb the area, which by the way, DOES NOT WORK AT ALL!!!
The nodule she was trying to biopsy is under the muscle in the front of my neck. She said that is why it hurt so much, because she had to go through the muscle to get to it. She would find the nodule with the ultrasound, then place the biopsy needle in the nodule, using the ultrasound to guide her. She would then put down the ultrasound piece, twist and jab the needle up and down in that spot, about 15 times. This was repeated with about nine needles. She kept saying that she wasn't sure she was getting the spot she was after. She told me not to tense up. Yeah right, much easier to do the first time, before I knew how bad it was going to hurt. She told me not to swallow. Okay, let me tell you, when someone tells you not to swallow, you suddenly need to swallow more than you ever have before. I didn't swallow, but boy, did I want to.
They told me to expect the results around Monday, which is tomorrow. The assistant told me to call her on Friday, she said she would call and check on the results, to see if they were in yet, and at least let me know if they would be ready on Monday. I called, and left her a message at 11 am. She never returned my call. She has always been so quick to return calls, this has me worried. From experience, I know that bad news gets delivered by the doctor, good news from the assistants. The fact that she did not call me back at all, makes me worry that the doctor was just not available to call me yesterday, that maybe the doctor was off yesterday. So in a nut shell, WAITING SUCKS.
The biopsy site is really bruised, sore and a bit swollen. I take a full aspirin a day, because of my clotting issues, and I am sure that made the bruising worse. I skipped one aspirin, but since the bruising is not nearly as problematic as say, a heart attack or stroke, I will gladly put up with the bruise. It looks like a big hickey, which I find very funny.
Wish me luck, say a prayer, cross your fingers....and thanks for reading my long winded post.
|
|
|
|
Posted by kristina - preemie mom & former ICU RN | Comments: (6) | Permalink
|
|
|
"HERE." & WAITING
|
|
Feb 21, 2010 05:17am (EST)
|
|
|
|
Posted by kristina - preemie mom & former ICU RN | Comments: (0) | Permalink
|
|
|
"I GO HOME" & FAMILIAR TERRITORY...
|
|
Feb 13, 2010 08:23pm (EST)
The sweet:
Morgan is back in school, after having missed some days due to her ear infection and resulting diaper dilemma. She is currently on her 5th antibiotic and we have hopes that this will finally clear it all up.
When I picked her up from school Friday, I said (and signed in sign language) to Morgan, "Hello. How are you? Are you ready to go home?" She smiled really big, ran to me, and said, "I go home! I go home!" Every little scrap of appropriate speech is soooo good to hear. It doesn't happen very often, but when it does, I get so happy.
She also picked up an ink pen in class, and said "pen." She is so funny, in that her skills are what I have heard called "splintered, or spiky". I mean that she can do things that other kids her age aren't usually doing, like the fact that she happens to know how to spell the word pen, and can read, and sign in sign language, way over 150 words, (I quit counting after 150.) and yet she can't point to things she wants, which is an 8 month old skill. I can only hope, and pray for the day that she figures out a way to rewire around her brain damage, and be able to really communicate. I believe that day will come, and hope it is soon.
The sour:
The last time Morgan was weighed by her First Steps dietitian was Jan 9th. Morgan, wearing nothing but a dry diaper, weighed 32 pounds. Friday when I took her to the doctor before school, she was weighed in her long sleeve shirt, blue jeans, socks and tennis shoes. She weighed only 30 pounds. I was shocked and alarmed. Accounting for the additional weight of the clothes, she has lost about 3 pounds in a little over a month.  Understand, that is 10% of her body weight, in just over a month.
That is NOT okay.
I knew she would need time to adjust to school, and eating there was going to be a challenge for her. I expected her to lose some weight at first. I just didn't dream it would be that much. At the beginning, I told myself not to obsess about it, and trust Morgan, that if given ample opportunities to eat, she would take what she needs. This has been the case at home, ever since she has been on the blended diet, and off all formula. Since the diet change, she has consistently had her best ever weight gains.
I took her on into school that morning, and told the teacher Morgan has lost a lot of weight, and we are going to have to do better getting her to eat at school. I thought she heard and understood me.
When I picked her up that afternoon, both the teacher and her assistant were very excited about how well Morgan ate that day. They were just beaming, and told me how happy they were that Morgan ate "5 whole crackers today." One of them said, "Yeah, she ate them like she was really hungry too." I was pleased. Morgan eats crackers at home all the time, but she hasn't been doing that at school, probably because of all the distractions etc. I walked away from them feeling relieved that Morgan ate well, only to get to the car, open the pack we use to transport her bottles of blended diet, and find that not one of her 3 bottles had been touched! No wonder she ate the crackers like she was hungry, she should have been starving! I can only assume they offered them to her, and she refused.
I think the thing about what happened that disturbs me the most, is the fact that they seem to have totally missed the big picture here. Ask yourself if a typical child ate only 5 crackers for the whole school day, would you be thinking to yourself that the child ate well? If they had said to me, "Gosh, she didn't take any of her bottles, but she did at least eat 5 crackers.", that would have been a much more reasonable accounting of her day.
The thing is, Morgan can not eat like a typical child. She needs to have her bottle. She needs to be in a reclining position to take it. She is slow at eating. She gets fatigued, and needs to take a break, and then come back to finish. She needs to have a calm, quite place to eat. She does not eat well away from home.
I know Morgan has been sick, and that contributed to this weight loss. I think her teacher is a very sweet lady, who is doing the best she knows how. I don't know EXACTLY what they are doing with her for feeding times. I have made it clear what she needs, and was told it should not be a problem. We have a parent teacher conference on Monday. When I leave there, we will all have a better understanding of what exactly is happening, and what we need to do to improve it.
See, they have her for 6 hours a day, 5 days a week. With any feeding routine she has, they need to be on board, or we can't make it work. She needs to finish 6 bottles a day. I feed her one bottle in the morning, before school. If they have her for 1/2 of day, she needs to be eating 1/2 of her food while with them. She has only been taking, at most, about one full bottle at school. There is no way she can finish 4 whole bottles between 5 - 9 pm.
I find myself in unwanted, but familiar territory. Once again, there is not enough hours in the day to feed her. It is like being back on formula again, minus the projectile vomiting. I am reduced to weighing her at home, and tracking her every calorie again. I so didn't want to be back here again.
I have reworked her recipes, so that I have bumped up the calories from 1200 to 1400 a day, while keeping the volume about the same. I am hoping that will help. She can not lose another 3 pounds, we will be right back to hearing "she needs a G tube", and I will be pulling my hair out.
Maybe they are doing something they don't know won't work. Maybe it will be something easy to fix, like they forgot what I told them, and think she can take her bottles sitting up. If you try that, she will take a small amount and then quit because it is too hard for her. Maybe they just aren't giving her enough time to eat. Whatever it is, hopefully Monday will clear it up.
Cancer scare update:
I have my biopsy scheduled for the Wednesday the 17th of this month. I will be glad to get it done and over with, but I am starting to wonder how much it is going to hurt.
Morgan taking a nap in a strange, but funny position
|
|
|
|
Posted by kristina - preemie mom & former ICU RN | Comments: (3) | Permalink
|
|
 Archives
|
|
 |
 |
 |
|
|
