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Rare Chromosome Disorders/Syndromes? - Page 3

post #41 of 83
Thread Starter 
Raene,

I know how you feel. I wrote a whole long post and it never posted. Computers. I will try again.

My DD is only 9 weeks old now, and we were exactly where you are now. When she was born she went to the NICU for low blood sugar, and kept having apnea spells. Like every 10 minutes. The first night we were there they came into my room every few hours with more bad news. She had MRI, CT scans, lumbar puncture, ultrasounds and every other test they could think of. She had a stoke prenatally and they really did give us worst case scenarios. It was terrifying. We didn't even find out about her chromosome issues until two weeks later. We spend 10 days in NICU and the wires and alarms are so scary. We were lucky in that my MIL stayed with us for 3 weeks to care for our 2.5 year old so DH and I could be at the hospital as much as possible. I was so scared for what her life would be like, and what our lives would be like. Our whole life shifted in those moments. It all seemed so helpless. I just wanted to run away.

Well two months later things are so much better. My DD is smiling and cooing and laughing and right on tract developmentally. We have a great support system around us, and lots of fantastic therapists helping to give my DD the best possible chance. She is a total cutie and we have really come to a place where we embrace whatever is in store for us.

I just want to tell you, it does get so much better. Please be kind with yourself and take it one day at a time.
post #42 of 83
Raene,
It is really time to step up to the plate here. You or your partner need to be at your baby's bedside as much as possible so you can really understand what it happening. Your family is desperately in need of the NICU social worker who can help you navigate this situation.
You must get in there and pin down Cedar's primary nurse ASAP! She will be able to tell you the name of every test, every procedure, every medication, every treatment that has been done. She will know the names of syndromes they are ruling out, ones they are considering as possibilities, ones they may be waiting to get results for.
Get a notebook. Write down EVERYTHING she says to you. Ask for names of the doctors who've seen her and what their specialties are. Ask for meetings with these physicians. They will come bedside or a conference room can be arranged. Make a list of all your questions, all your concerns.
You are really going to need to get your head and heart into this. It may seem reasonable to you that you feel like you need the 1-on-1, 24 hour support of your partner but I assure you, it does NOT appear reasonable to the staff taking care of Baby Cedar. They are seeing you as unattached, unable to cope or communicate, unreasonably dis-interested in the day-to-day aspects of her care and treatment.
It would be wonderful if every member of the family could huddle around her bedside and oooh and aaaah over her but it isn't feasible for the staff and other patients in the NICU. You should really be alternating off and on with your partner so Cedar has someone there as much as is allowed then your older daughter has the benefit of a parent with her, too. It's a rough road but Cedar deserves no less.
If you are having difficulty coping with this experience, the NICU social worker can certainly arrange for you to talk to someone. I would definitely take advantage of this. You don't want this to go on much longer.
post #43 of 83
My 16 month old daughter has a partial duplication of her 13th chromosome (13q22.3) and a small partial deletion on her 2nd.

We didn't really get a diagnosis until she was 7 months old, although I suspected for a long time before that something was not right, and we began the eval/diagnosis process at 6 months.

She has a global developmental delay. She's been able to sit since about 11 months, and just recently started going from a laying down to a sitting position. She thankfully has no health problems, and it as pleasent a baby as anyone could ask for.
post #44 of 83
I'm feeling a bit judged here, honestly.

I will say that I used to live in Austin and thought of being a neonatal nurse in high school, so a neonatal nurse from my church took me to visit the NICU where she worked and it was LOVELY. I loved the experience and it showed how much the nurses cared about those babies.

I could say similar things for the 4 bed NICU at our local hospital. Cedar cried and the nurse would say to us, "Well, she was crying earlier so I rocked her for 30 minutes and then she went to sleep."

This big hospital isn't like this. It's a baby torturing place. Maybe you have mostly had good experiences at the NICU but I doubt most of you would feel good about this place. So please don't judge me. This place is terrible. Of course they aren't going to have time to hold her 30 minutes and rock her with the other sick babies needing help, too. I don't expect that. But they do treat her like some kind of animal.

And in a subconscious way, I know how much this affects her. The doctors stand over her pointing out her flaws, holding up her imperfect hands in disgust, etc. You think that's good for her and that they care? They don't. It's horrible and heart-wrenching.

I made it clear to the geneticist I didn't want to keep my daughter there and that they might think of her as their lab rat but she's my baby. He seemed to understand that more than anyone else and may be our biggest advocate in getting her out of that place. Not sure.

Has anyone ever removed their child from the hospital against medical advise? I want to know if that *ever* brings happiness or if CPS always gets involved. I can't do anything that might harm DD1, but the thought of keeping her in the hospital long term is unbearable (and we can't afford to keep going there b/c it's far away).
post #45 of 83
Quote:
Originally Posted by Raene View Post
I'm feeling a bit judged here, honestly.

I will say that I used to live in Austin and thought of being a neonatal nurse in high school, so a neonatal nurse from my church took me to visit the NICU where she worked and it was LOVELY. I loved the experience and it showed how much the nurses cared about those babies.

I could say similar things for the 4 bed NICU at our local hospital. Cedar cried and the nurse would say to us, "Well, she was crying earlier so I rocked her for 30 minutes and then she went to sleep."

This big hospital isn't like this. It's a baby torturing place. Maybe you have mostly had good experiences at the NICU but I doubt most of you would feel good about this place. So please don't judge me. This place is terrible. Of course they aren't going to have time to hold her 30 minutes and rock her with the other sick babies needing help, too. I don't expect that. But they do treat her like some kind of animal.

And in a subconscious way, I know how much this affects her. The doctors stand over her pointing out her flaws, holding up her imperfect hands in disgust, etc. You think that's good for her and that they care? They don't. It's horrible and heart-wrenching.

I made it clear to the geneticist I didn't want to keep my daughter there and that they might think of her as their lab rat but she's my baby. He seemed to understand that more than anyone else and may be our biggest advocate in getting her out of that place. Not sure.

Has anyone ever removed their child from the hospital against medical advise? I want to know if that *ever* brings happiness or if CPS always gets involved. I can't do anything that might harm DD1, but the thought of keeping her in the hospital long term is unbearable (and we can't afford to keep going there b/c it's far away).
I've worked in hospitals.
When you visit a NICU as a guest it's different then when you're the mother of a baby there.
Everyone here is kindly trying to convince you and explain that baby Cedar needs you at her side your every waking minute, not just when you can touch or hold her.
Your extended family and friends need to be asked to help with your older child and your life needs to be put on hold for baby Cedar, she needs you to be in the hospital with her.

Sit there and sing to her she needs to hear voice, and that will help you see the staff and NICU as a place of hope for your baby, they are not out to hurt her, and she is sounding as if she is thriving very well.

The staff needs you at her crib side.
Go see the social worker
Don't go AMA, or entertain that idea.
Try to work on shifting your thoughts about the hospital and staff.

Yes, staff will call and unleash CPS on you because your behaviour would be considered irrational, irresponsible and possibly unfit if you take her AMA for routine NICU care.
She will likey have a life filled with support and routine care and services from mainstream professionals, don't go AMA!
Unleashing CPS is more aggravation and heartache than you need now.
post #46 of 83
Quote:
Originally Posted by Raene View Post
I'm feeling a bit judged here, honestly.

I will say that I used to live in Austin and thought of being a neonatal nurse in high school, so a neonatal nurse from my church took me to visit the NICU where she worked and it was LOVELY. I loved the experience and it showed how much the nurses cared about those babies.

I could say similar things for the 4 bed NICU at our local hospital. Cedar cried and the nurse would say to us, "Well, she was crying earlier so I rocked her for 30 minutes and then she went to sleep."

This big hospital isn't like this. It's a baby torturing place. Maybe you have mostly had good experiences at the NICU but I doubt most of you would feel good about this place. So please don't judge me. This place is terrible. Of course they aren't going to have time to hold her 30 minutes and rock her with the other sick babies needing help, too. I don't expect that. But they do treat her like some kind of animal.

And in a subconscious way, I know how much this affects her. The doctors stand over her pointing out her flaws, holding up her imperfect hands in disgust, etc. You think that's good for her and that they care? They don't. It's horrible and heart-wrenching.

I made it clear to the geneticist I didn't want to keep my daughter there and that they might think of her as their lab rat but she's my baby. He seemed to understand that more than anyone else and may be our biggest advocate in getting her out of that place. Not sure.

Has anyone ever removed their child from the hospital against medical advise? I want to know if that *ever* brings happiness or if CPS always gets involved. I can't do anything that might harm DD1, but the thought of keeping her in the hospital long term is unbearable (and we can't afford to keep going there b/c it's far away).
You feel judged because somewhere deep inside yourself, you know you are not doing right by this baby. You need to be THERE, with Cedar, but over and over again, you give excuses about why you can't be. It isn't that you can't, it's that you won't. I have yet to see one justifiable reason keeping you away from that baby, YOUR baby, Cedar.
In one post after the other, you say that she is not being treated well, that she is being treated like a lab rat, an animal, and on and on and on. It is insulting and judgemental to us, the special needs parents, who have to submit our children to life saving treatment, that includes IV's, x-rays, blood draws, painful procedures, etc. It is insulting that you have the opportunity to be there but won't and will demean everything the staff is doing, yet you will not ease the trauma you say she is enduring by visiting, by being present while she is subjected to this.
I will speak only for myself, but others may chime in here, I am NEVER too tired, too broke, too emotionally spent to stand at my son's bedside when he is undergoing ANY medical treatment. I am NEVER unavailable to speak with the doctors, nurses, personnel when it comes to my son's care and treatment. I am ALWAYS right there, to hold a hand, rub his back, read a story. I have another child also and a partner. Neither child is ever without a parent. We are able to switch off and on, if the need arises.
Nothing is ever done to my son that I am not fully aware of, that has not been discussed, that has not been explained. I do not treat every suggestion, every decision for him as drivel, coming from the mouth of a "mainstream" physician bent to destroy sparkle in my son's eyes. I am insulted that you come here, to the special needs parenting board, and rant about the treatment your daughter is receiving when you are scarcely even there to listen, to understand, to decide, to consent or refuse.
Certainly, I am a full partner with the health care professionals my son sees because I have made every effort to show that I want to work with them for the best outcome for my son. I have not abandoned the fact that we are a gentle, attached family and have explained to the hospital staff why it is important for us to remain so. Your entire philosophy about parenting doesn't need to go out the window. It just needs to be customized.
I implore you or your partner to step up here. If you won't, the NICU will allow you to name an adult you'll allow to come in your place. This could be your mother, your father, a sister, a brother, etc. You just sign a consent to allow this person in to be with your baby. You do not have to give permission for them to consent to any procedures or treatments but at least someone will be there for Cedar.
post #47 of 83
Raene, I'm worried about you. The things you're saying are the sorts of things I expect to hear from someone with PPD or PTSD. Is there a social worker at the NICU who can help you with your feelings?
Quote:
Originally Posted by Raene View Post
And in a subconscious way, I know how much this affects her. The doctors stand over her pointing out her flaws, holding up her imperfect hands in disgust, etc. You think that's good for her and that they care? They don't. It's horrible and heart-wrenching.
Raene, how are they going to diagnose her if they ignore her symptoms? I find it very hard to believe that any people go into NICU nursing or neonatology because they are disgusted by imperfect babies. The nurses and doctors I met while my baby was in there were all loving, caring people who had a true calling to help these babies. Sometimes they seemed brusque or indifferent, but that always seemed to be when they were trying to keep calm during an especially difficult or painful time for the baby.

Normally, it's the nurses job to take care of the babies' medical needs, and the parent's job to be there stroking and talking to their baby. of course, sometimes they need to do both, like the boy in the isolette next to my baby's. His mother had had to go back to work and could only stay at the hospital on weekends, so the nurses spent more time with him than the other babies on weekdays. The other babies were younger and had mothers on maternity leave who could stay at the hospital most of the time.

Quote:
I made it clear to the geneticist I didn't want to keep my daughter there and that they might think of her as their lab rat but she's my baby. He seemed to understand that more than anyone else and may be our biggest advocate in getting her out of that place. Not sure.

Has anyone ever removed their child from the hospital against medical advise? I want to know if that *ever* brings happiness or if CPS always gets involved. I can't do anything that might harm DD1, but the thought of keeping her in the hospital long term is unbearable (and we can't afford to keep going there b/c it's far away).
I think that attempting to take her from the NICU is the surest way to lose custody. CPS looks very unfavorably on parents refusing medical care for sick babies.
post #48 of 83
You feel judged?

You come into a community of people who have given our all to support our sn children, who, in many cases, owe the very *lives* of our children to the medical community, and portray these professionals as evil torturers, out to harm your child. Your words were hurtful to me as a medical professional, but I tried to put that aside and offer helpful advice, since I am also the parent of a sn child.

I'm sorry if you don't like hearing it, but I simply can't believe there is a nicu filled only with people who want to torture your baby and are filled with disgust when looking at her. Between training as an rn, working in pediatric/neonatal intensive care, and having my son in multiple children's hospitals, I have extensive experience in six different places. There were bad/lazy/indifferent doctors or nurses in some of them, but definitely not *all* of them. As I said before, these people chose a gut-wrenching specialty because they WANT to help children! My understanding (both from your posts here and in other threads) is that you don't trust western medicine. The fact is, that's what your daughter needs! No, in a high-acuity nicu, they can't hold your child all the time. The fact that she *can* cry means she is probably one of the less acute babies there. You can combat that by being there yourself. Or have a family member come do it.

As pp have said, the onus is on *you* to get as much information as humanly possible about the tests and procedures being done.

As for leaving AMA- believe it or not, I've nearly taken my son out of the hospital *once* ama, but they wrote discharge orders for me once all the facts were gathered (I had been hospitalized myself for preterm labor during his 2 week stay and needed to go home- the testing for my son was not at all urgent and there had been a communication mix-up with his doctors). He was *not* being treated at the time, and I certainly would never dream of removing a child who needed treatment or monitoring. Unless the situation has changed dramatically with your daughter, she needs to be in the nicu!

I can say from experience as a nurse that hospital staff will move heaven and earth to keep a child from being taken home ama if they need monitoring/treatment in the hospital. I don't know you or the details of your daughter's condition, just what you've shared here.
post #49 of 83
Quote:
Originally Posted by gsd1amommy View Post
You feel judged because somewhere deep inside yourself, you know you are not doing right by this baby. You need to be THERE, with Cedar, but over and over again, you give excuses about why you can't be. It isn't that you can't, it's that you won't. I have yet to see one justifiable reason keeping you away from that baby, YOUR baby, Cedar.
In one post after the other, you say that she is not being treated well, that she is being treated like a lab rat, an animal, and on and on and on. It is insulting and judgemental to us, the special needs parents, who have to submit our children to life saving treatment, that includes IV's, x-rays, blood draws, painful procedures, etc. It is insulting that you have the opportunity to be there but won't and will demean everything the staff is doing, yet you will not ease the trauma you say she is enduring by visiting, by being present while she is subjected to this.
I will speak only for myself, but others may chime in here, I am NEVER too tired, too broke, too emotionally spent to stand at my son's bedside when he is undergoing ANY medical treatment. I am NEVER unavailable to speak with the doctors, nurses, personnel when it comes to my son's care and treatment. I am ALWAYS right there, to hold a hand, rub his back, read a story. I have another child also and a partner. Neither child is ever without a parent. We are able to switch off and on, if the need arises.
Nothing is ever done to my son that I am not fully aware of, that has not been discussed, that has not been explained. I do not treat every suggestion, every decision for him as drivel, coming from the mouth of a "mainstream" physician bent to destroy sparkle in my son's eyes. I am insulted that you come here, to the special needs parenting board, and rant about the treatment your daughter is receiving when you are scarcely even there to listen, to understand, to decide, to consent or refuse.
Certainly, I am a full partner with the health care professionals my son sees because I have made every effort to show that I want to work with them for the best outcome for my son. I have not abandoned the fact that we are a gentle, attached family and have explained to the hospital staff why it is important for us to remain so. Your entire philosophy about parenting doesn't need to go out the window. It just needs to be customized.
I implore you or your partner to step up here. If you won't, the NICU will allow you to name an adult you'll allow to come in your place. This could be your mother, your father, a sister, a brother, etc. You just sign a consent to allow this person in to be with your baby. You do not have to give permission for them to consent to any procedures or treatments but at least someone will be there for Cedar.
nak

you speak for me as well.

post #50 of 83
Quote:
Originally Posted by Raene View Post
How do you cope with this? I'm an attachment parent and I'm not even allowed to hold my daughter (right now her bili levels are low). She's at a hospital over an hour away and we can't spend all of our time there b/c we have a 5 1/2 yr old to take care of too (who isn't allowed in the hospital).

I don't know how to get through this. The doctor even told us we're not ALLOWED to take her home. Where have our rights gone as parents? I feel so helpless and cry every hour for my poor DD.
I think the first thing you need to do is realize that "attachment parenting" is not just about holding your child. It is about doing what is best for your child, being emotionally attached and finding the strength within yourself to do what is best for them, not what is easiest for you.

You get through this one day at a time, one hour at a time, heck, even one minute at a time during the darkest times. You find a way to make it work...find child care, accept help, call in favors, take what is offered (like the Ronald McDonald room, even if it means you have to climb some stairs a few times...nobody says you have to race up and down the stairs, just take it one step at a time, like everything else...this shouldn't be an issue this far past birth anyway), talk to the hospital patient advocate or social worker and work with them to find solutions to make it possible, even if it isn't convienent. Start making changes in yourself to do what needs to be done instead of looking for excuses to avoid this situation. This is life. It can be messy and heartbreaking, but it is also rich and rewarding if you give yourself the chance to see it for the possibilitites.

You will find that your strength isn't used up when you use it to support and love your child, it just increases.

I understand that post partum hormones are not helping this, but you have to turn this around. There is a small person out there who depends on you.

The doctors and nurses are there to take care of her medical needs, and it sounds like they are doing that. It is up to you to take care of the emotional needs, and you have to be present to do that. You need to start working with them as a team, because nobody goes through the stress of working in the NICU unless they really, deeply care about babies. They want you to be there and actively participating, both physically and emotionally, as part of the team.
post #51 of 83
Quote:
Originally Posted by Raene View Post
I'm feeling a bit judged here, honestly.

I will say that I used to live in Austin and thought of being a neonatal nurse in high school, so a neonatal nurse from my church took me to visit the NICU where she worked and it was LOVELY. I loved the experience and it showed how much the nurses cared about those babies.

I could say similar things for the 4 bed NICU at our local hospital. Cedar cried and the nurse would say to us, "Well, she was crying earlier so I rocked her for 30 minutes and then she went to sleep."

This big hospital isn't like this. It's a baby torturing place. Maybe you have mostly had good experiences at the NICU but I doubt most of you would feel good about this place. So please don't judge me. This place is terrible. Of course they aren't going to have time to hold her 30 minutes and rock her with the other sick babies needing help, too. I don't expect that. But they do treat her like some kind of animal.

And in a subconscious way, I know how much this affects her. The doctors stand over her pointing out her flaws, holding up her imperfect hands in disgust, etc. You think that's good for her and that they care? They don't. It's horrible and heart-wrenching.

I made it clear to the geneticist I didn't want to keep my daughter there and that they might think of her as their lab rat but she's my baby. He seemed to understand that more than anyone else and may be our biggest advocate in getting her out of that place. Not sure.

Has anyone ever removed their child from the hospital against medical advise? I want to know if that *ever* brings happiness or if CPS always gets involved. I can't do anything that might harm DD1, but the thought of keeping her in the hospital long term is unbearable (and we can't afford to keep going there b/c it's far away).
Raene, I can promise you that the NICU staff isn't there to torture your baby. They are running these tests and pointing out imperfections so that they can help her. They want you to be able to take her home. Work with them, write down everything they say, look it up, and go in with a notebook full of questions. I know it is hard and seems unbearable, but this is the time that you can prove to yourself and Cedar what a strong mother you are. You can make it through this and come out the other side a stronger person.

Since the NICU is far away, is there a Ronald McDonald House nearby you might be able to stay in? Is there any NICU family support group that might be able to provide you with gas money? Explain the finacial issue to the NICU staff, and see if there is anyway that they can help out.

I saw her pictures on your blog and she is beautiful! :
post #52 of 83
It is really hard to have a baby in the hospital. It is really hard to watch the Dr's and Nurses do things that hurt your baby. I get that, I really do.

However, they are doing the absolute best they can. They are trying to make YOUR baby as healthy as they possibly can. They are trying to make her healthy enough so YOU can take her home and love on her as much as you want. They are trying to diagnose her now so that YOU know everything you can about her condition, so you're not totally in the dark.

Being an attached parent isn't just holding your baby, it's being there for THEM. Putting your own feelings aside for THEM. Being an attached parent is getting over the fact that you hate hospitals, that you think they're just there to torture your child, and so on. Drop your feelings out of this, pump your milk, and comfort your baby.

I'm sorry if you feel judged. You came into this SN community insulting all of these wonderful parents, myself included, by how you're talking about what we go through daily. IV sticks, "radiation treatments" (which, btw, there's a minuscule amount of radiation your daughter is getting, it is incredibly rude to call them radiation treatments), blood work, and all sorts of testing. All of these parents and our children go through this all the time. And you know what? It's saved our children's lives. Even here on MDC, medical intervention has a place and THIS is one of them. Please do not come on here and say things that can hurt all of us very deeply.
post #53 of 83
Attachment parenting isn't just about holding, touching, cosleeping, nursing at the breast, etc. What a poor imitation of loving parenting it would be if it were ONLY that.

Attachment parenting is about FEELING, communicating your feelings to your tiny daughter who needs an advocate 24/7.

Being an attached parent means putting the needs of your newborn above everything else right now--you, your partner, even your older child.

Your partner can give your older child attention while you stay at the hospital, pump breastmilk only you can provide, and help facilitate Cedar's healing and progress.
post #54 of 83
I hope it's ok to post here. Raene, I've been following your story. I can assure you that the NICU staff really is working to HELP your sweet Cedar. No one enjoys causing infants pain. Really. I've been a NICU nurse for 9 years. I've taken care of many infants with very rare/complicated dx. They've all needed their parents to be present and involved and the most important part of their care team.

It sounds like you are in a dark place right now. Cedar needs you to pull yourself out do what's best for her. It's not the life you'd hoped for her. I know you're grieving that. Please get some help so you can be strong for your baby and make the very best, fully informed decisions. She needs that from you.

I wish you and your family the best. I'm praying for you and your baby girl!
post #55 of 83
Raene, I think that for right now you need to put your disgust for the medical community aside and step and and work with them on your daughter's care. I was in your DDC and know that you loathe intervention and doctors in general but right now Cedar NEEDS these doctors and interventions. These people have saved her life and continue to care for her in your absence. Please show them a little respect. It sounds like your child will likely need some form of medical care for the rest of her life so if you are not ok with that (or willing to provide her with that) then maybe you should think about placing her up for adoption as you have mentioned on your blog.

As a mama who has been there I have to say that I'm worried about you. You don't sound like you are doing well to me. You were so passionate about nursing yet you threw in the towel on pumping in just a few days. You call yourself an "Attachment parent" yet you don't seem to make much effort to go and be with your sick baby. You seem to be more worried about yourself than baby Cedar and that is heartbreaking for us all to see. Maybe your thinking is deeply clouded by PTSD or PPD or a combo of both but you need to get some help. Cedar needs someone to advocate for her, and taking her home AMA right now is NOT advocating for her. She sounds like she is doing so much better so please let the doctors and nurses do their jobs and continue to diagnose her and work on a plan of care so she may live a long and happy life.
post #56 of 83
As much as I hate McDonalds, the Ronald McDonald houses are truly a one of a kind Godsend in situations like this. PLEASE reconsider their offer of a room. They provide both emotional and physical support, meals, and, depending on the location and the hospital location, they provide shuttle services and access to other kinds of help. It is really a clearinghouse for services, plus a lot of knowlegable people who's entire focus is helping people in your situation.

By all accounts you have given, the birth itself went well, with no complications to you, so I would think that you should be able to handle a few stairs if it meant being near your baby. I know that some of the refusal came out of shock and grief, but you have to realize it was a poor decision. You need to turn this around.
post #57 of 83
I am sorry, Raene. I do remember in the beginning when my DD was in the NICU that I wanted to grab her and run away. I felt like the nurses wouldn't let me mother her. They seemed to monitor my every move. I gradually realized that they were doing the best for her -- and for me. *hug*

(Ironically, DD is not my SN child but instead her brother with his "normal" birth.)
post #58 of 83
Raene,

Sometimes when your ideal birth turns out to be the beginning of a not so ideal newborn period it can be very hard to deal with. But there comes a time when you have to put on your big girl panties, grow a pair and do what you have to do.

I had a homebirth that went beautifully, but my son came out sick and just got sicker. He was the baby that wasn't ever going to see a dr unless he was sick, he would nurse till he was 3.5 just like his big sister, eat whole food, etc. Well, he couldn't nurse, can't eat, and has been tube fed almost his whole life. Before he was born I didn't even know that G-tubes existed. It is very much not what I had planned and it was hard for me.

That being said, it was hard for me but I did NOT let that affect my ability to parent him. I have spent many nights sleeping in the crib with him in the hospital, I've never left him alone. We've been through many awful proceedures with me right there next to him. We fight this battle together. He is too little to fight alone. We have made many sacrifices in order to always be with him when he needs us, but I don't regret any of them.
post #59 of 83
Quote:
Originally Posted by MotherWhimsey View Post
We fight this battle together. He is too little to fight alone.
That is exactly it!!!
post #60 of 83
Just nevermind. I feel so angry and sad about this whole situation. I still pray for Cedar all the time. She is a blessing manifest. May she recover quickly, and go home with a family that will love her for the perfect creature she is, and enjoy sharing her beautiful life with her.
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