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March 9, 2006 at 10:49 pm #3471AnonymousInactive
Well we had Hailey’s 9 month well-baby checkup today- Hailey’s gained (19.5 pounds) and also has grown in both length and head circumference. She was screaming so much though that I forgot to ask how long she was. He said he absolutely does not want to do the g-tube unless we really have to, because he said that Hailey is just looking ways to avoid eating, and he thinks that it would only make that easier for her. He did say that he’s seen other children like this, and they have all gotten better around the 18 month to 2 year mark, so we’re going to hang onto that hope.
He is sending us for an EEG to rule out seizures (because Sarah has them) and because Hailey still has quite frequent Sandifer’s. He still minimizes the reflux, and says that many kids have reflux, but very few go on to develop feeding problems as extensive as Hailey (which he attributes to her stressed out personality). We are going to see the new GI in 3 weeks so we’ll talk about that further.
He also said that he had no idea that the psychiatrist was going to suggest what he did, and that he agrees that we shouldn’t go back. He said that he consulted someone else, who suggested that we go to see that guy, but he said that he does not agree that we are doing anything to cause the problem, and that he thinks that we’re doing an amazing job with Hailey given the circumstances. He was very sympathetic.
He also said that he feels strongly about no daycare until 18 months (or maybe longer), but of course that it’s really up to us to decide. He also said no CIO or sleep training that uses extensive crying because he feels that Hailey has very limited coping mechanisms and stresses out too easily. He told us to try to expose her to more people more frequently, but for very very short amounts of time to help her to feel more comfortable.
No other real advice. The really good news though, is that he said that her urine tests came back within normal limits this time for the organic acid screen which means that she does not have any kidney failure, and so we are quite happy about that.
Otherwise, he thought that her development seems on track, just the feeding issues and the obvious social issues, but he said that after seeing her he doesn’t think that she has autism, which he has been concerned about. So that was good news as well.
Also, yesterday, Hailey reached out for my husband for the first time, and really started trying to interact with him. She started crying for him to pick her up, and I could see that it really made him feel good, and it melted my heart a bit as well. Remember this was the guy who told the psychiatrist that playing with Hailey “wasn’t the thrill of his life”, so it was so nice for me to see it. She’s also trying to move around a bit now, like something went off in her head making her realize that she can do it.
Overall, no real improvements in reflux, but I’ll take any good news I can get. Thank you all for your support.
March 10, 2006 at 6:16 am #3482AnonymousInactiveLori
Good work on the weight gain… i know how hard you have worked for it. I am so glad he still says no to the G tube — it seems like that should give you some comfort that he thinks she is doing OK the way she is being fed etc.. so good for you!
On the daycare, as i said in my other post, if you can afford it, then i think maybe it is best if Hailey is with you BUT you get a little bit of time off sometimes, getting someone to babysit or spending a couple of morning in the daycare with her (is that a possibility)? My ped thiniks that Matthew needs me around still because he hates eating but he needs motherly comfort afterwards because he hates it so much… something liek that.
Maybe Hailey IS hypersensitive — i know that Matthew is really really sensitive although he has become much better in the last month or so. He also gets really worked up and is unable to calm down – funnily enough, it has only been since we did some CIO that he is calmer…
March 10, 2006 at 6:37 am #3485AnonymousInactiveGood news Lori – that’s wonderful that Hailey was 19.5 pounds.
Zach was only 17 pounds at his 9 month check up and he eats like a
little piggy now. He’s also walking so I think the he’s burning
up all those calories – if it’s not one thing, it’s another!
Sounds like Hailey is doing great other than the eating. Glad to
hear about the urine test and also the autism. All in all, pretty
promising, right? Since she is starting to go to your husband,
hopefully that will move on to other people as you expose her.
Then…..maybe the eating will pick up too! We’ll keep our fingers
crossed but glad to hear the news!
boysmom2006-3-10 6:37:41March 10, 2006 at 8:29 am #3490AnonymousInactiveGlad to hear Hailey is gaining weight and starting to get more mobile
and starting to interact more with your DH. And glad no G-tube for now
and all. Hope the appointment with the new GI goes well and that Hailey
starts to eat more soon.March 10, 2006 at 10:49 am #3508AnonymousInactiveSounds like Hailey is doing great. I disagree with some of the opinions the doctor gave you about sleeping and daycare but that’s me. I hope her improved progress will help to put you at ease. It was around 9-10 months where I was given a glimmer of hope that things would improve. I continued to worry for many more months, but looking back that age was our turning point. I hope she continues to do well!
March 10, 2006 at 2:02 pm #3526AnonymousInactiveLori,
It sounds like you got quite a bit of good news. I’m so happy to hear that her urine results came back normal and that her weight gain is good. Its great that your doc is not ready for the g-tube. It sounds like he is being conservative in that regards, which can be a good thing. I think the tube should be a last alternative if all else fails and a child isnt gaining or is at risk for malnutrition. It sounds like she is growing really well despite her feeding issues ( i know how hard you have to work at it).
I agree with your Ped about the daycare and the CIO. What he says makes a lot of sense. It seems like he is genuinely concerened about Hailey’s development in all areas, and is sensitive to what you are going through. I wish all docs could be as helpful and understanding.
I bet your dh was beaming from ear to ear when Hailey wanted his attention. I’m sure it made him feel good. Before you know it she’ll be a “daddy’s girl”.
I meant to mention to you in another post, but it slipped my mind about a book I wanted to suggest to you. Its called “Parenting the High Need Child” by Dr. Sears. I bought it years ago after my first son was born. He was very high need and cried alot. He needed held constantly, couldnt handle strange places or people, and didnt adapt to change easily. Its a great book and it helped me learn ways of helping him and myself cope with his demanding needs.
Keep us posted on the feeding therapy and if you get any good tips you would like to share.
March 10, 2006 at 2:34 pm #3537AnonymousInactiveGreat job with the weight gain! I think that she weighs more than Isaac now! I am glad that autism is not a problem with her either!
March 10, 2006 at 2:47 pm #3540AnonymousInactiveGreat news, Lori. Let me tell you something…I was just like Hailey minus the reflux and not eating anything. I didn’t eat much, though, and would cry as a child (like 6-7 years old) if someone tried to make me eat meat. I also remember my dad saying, “It was a big even when I was left alone with you for the first time. We didn’t know how you would react.” I HATED people! I would scream if someone I didn’t know looked at me, let alone tried to touch me. I never let my father or grandparents even hold me until I was around 9 mos. to a year. That being said, I now hold a job, have a great marriage, and a healthy, friendly, outgoing 8-month-old son who has NONE of my social issues. I really think temperament plays a large part in how we act, even that young. And you are a fabulous mother to Hailey. Keep up the good work!
SarahMarch 10, 2006 at 4:34 pm #3550AnonymousInactiveThanks guys. Lisa, I’m going to check out the book. If I get any tips, I’ll certainly share them. In fact, I’ll post tonight about what we’re doing for Hailey, not that anything’s working. How’s Noah?
March 10, 2006 at 8:37 pm #3559AnonymousInactiveSounds like you got some much needed good news!
Maybe if daycare is not an option, you could look into a mother’s morning out program so you can at least get a break or maybe try a gymboree class together??
Hope things continue to look up for Hailey!
March 10, 2006 at 9:00 pm #3562AnonymousInactiveSarah, thanks for sharing. So there’s hope for Hailey afterall!
March 10, 2006 at 11:00 pm #3575AnonymousInactiveLori, thanks for asking. Noah is being his typical self. Although he actually took 4.5 oz wide awake for my dh. He sang silly songs and made faces at Noah while he gave him his bottle. Apparantely it was enough of a distraction that he sucked on his bottle. I wish he would do it that easily for me. I might as well not even bother trying to feed him his bottle if he is awake.
We are heading out on a road trip tomorrow for 7 hours and I’m worried about how I’m going to feed him. I might try to feed him while he’s in his car seat after he falls asleep. I am definitely not looking forward to the being in the car with an antsy baby for 7 hours.
March 18, 2006 at 5:53 pm #4176AnonymousInactiveHi Lori, I just wanted to apologize if I may have said anything offensive in describing the sleep book I reccommended and how I taught my kids to sleep in their own beds. It may have come across the wrong way (arrogant?), and I really didn’t want it to. In getting my children to sleep well, I was very fortunate for many reasons.
My first child had no health issues, and was a born sleeper to begin with (still is).
My second child had silent reflux, but I didn’t really understand what it was all about then, and she didn’t have it as bad as some of the children I read about in this forum – certainly not as bad as your little girl. She fussed and groaned alot in her sleep, and she woke up alot at night, but she was never so uncomfortable that she couldn’t go back to sleep without minimal comforting.
My third child has reflux, but again I am so very fortuante, he is able to sleep in his crib, with his mattress raised. Once we got him on the right medication, he became quite comfortable, so sleep is not a major issue with him.
So, I had it easy. I also had years of nanny experience to draw upon.
Still I made mistakes. My oldest slept with a pacifier until she was 2 1/2!! She was so hooked on her nuk I actually sewed it to her pajamas because she went through a period where she would wake up looking for it 4 – 5 times per night.
My son is an early riser and I haven’t “fixed” that (yet)! I sure hope to one day.
Anyway, I’m sorry if I came across as a “know-it-all.” I sure didn’t mean to. I think with babies with reflux, or any other health problem, sleep training is not going to be a priority until the baby is feeling well.
Is Hailey doing well enough now that you are comfortable trying to get her into her bed for sleep? Where does she sleep now? I hope you are not discouraged. If she is feeling better (or when) you will definitely be able to teach her to sleep in her bed. It just has to be the right time for you, and for her.
By the way, my middle child was a little like Hailey in that she was terrified of anyone except mommy (and later on daddy). When I took her out she’d cry if anyone looked at her! She was very “high needs” and I had to carry her around pretty much every waking hour of her life. Things improved with her when she started crawling because if I put her down she could follow me, but she was still a very clingy, high strung, nervous baby for quite some time. In fact, in almost all of her early baby pictures she has an expression on her face that my dh and I call the “oh, sh*t” look! She was so stressed, right from birth. I couldn’t understand it. She cried in her carseat, was terrified of her swing, hated to go anywhere. If I took her shopping, she’d cry all the way there, the whole time we shopped, all the way home, and the whole time I unpacked and put things away! Boy, she wore me out. Is this the way Hailey is?? Ellie gradually outgrew it and is now what I would consider reserved, but secure, almost always happy, cheerful, and funny. I wonder how much feeling lousy with Reflux may have contributed to her behavior as a baby.
I’m glad Hailey’s check up went well, and I hope her eating and sleeping gets better.
Christine
March 18, 2006 at 7:12 pm #4178AnonymousInactiveChristine,
You certainly did not offend me at all when you made the sleep book recommendation. I’ve been thinking about getting it, but really I’m just interested in his method, not so much the summaries as I’ve read all the originals already.
As for sleep, I had it easy with my first one and now it’s payback time for every judgment I ever cast upon anyone else who told me that their child was a bad sleeper. I used to think that Sarah slept well because I did a good job training her. Now that hailey came along I’ve since learned that Sarah slept well because she could, and not because of anything I did. Hailey is the worst sleeper, and is still in my room- which I never imagined I would do- but we need to do what needs to be done in order to get a few hours sleep. Hopefully one day Hailey will sleep when she’s better and the reflux is under control.
The “high needs” behaviour you describe of your daughter is EXACTLY Hailey to a tee. I have to carry her all the time up until 6 months, and we can barely go anywhere or have anyone over. If someone looks at her it’s all over, and she goes nuts at all of her medical appointments and won’t stop screaming and crying until we leave. She too used to scream in the car seat, hated the swing- basically hated everything. Now she’s still majorly intense and hates everywhere but our house, and everyone but our immediate family. When did you daughter outgrow it, if you don’t mind me asking? Also, are you a SAHM, or were you ever able to put her into childcare? These are big concerns that I have right now. I was supposed to go back to work at the end of May.
Thank you so much for sharing the story about your daughter. I’ve always been worried that she might have some mental health issues because I had a very stressful pregnancy. It helps to know that your daughter outgrew it and is now a happy little girl. Thank you again. Hearing this makes me so happy.
March 18, 2006 at 8:51 pm #4185AnonymousInactiveLori, I’m so glad I didn’t offend you. I was worried that you may have felt that I was being judgmental. I’m glad you didn’t see it that way. Yeah, I know what you mean about payback. I used to think most sleep issues were parenting problems. As a nanny I was able to “cure” so many babies of their sleep problems, so I thought I had it all figured out. Then I had an easy baby like you did, and I thought, wow I do know what I’m doing. Then Ellie came along. Oh my, was I in for it!!
Eliana looked tense from the day she was born. I remember being in the hospital with her and knowing (mother’s intuition) that this was not going to be easy. It actually took me a little longer to bond with her than it did with my first, because she was so tense and she had such a stressed look on her face. My first (Liza) just melted into my arms and looked at me with such peace and contentment. That didn’t happen with Ellie.
My theory about Ellie is that she inherited some tendency towards anxiety. Both my husband and I come from families with lots of anxiety. My mother has a terrible anxiety disorder, as does my mother-in-law. I remember being a very tense, anxious child, and I still struggle with anxiety as does my husband. So, it’s not so surprising that at least some of my children would also have this tendency. Do you have anxiety in your family?
In addition to the tendency towards anxiety, Ellie was sick with silent reflux and sadly back then I really didn’t understand what she was going through. I know now that she was not properly medicated and I’m sure that contributed to her miserable disposition.
And boy was she miserabe! Now I can laugh when I look back at it. My friends stopped calling because they knew Ellie would probably be crying and I wouldn’t be able to talk. People who knew us would avert their gaze when they saw us coming, so as to not upset Ellie!
When did she outgrow it?? Well, it was a gradual thing, but I remember clearly that at about 9 months I could start putting her down and she would play for a few minutes and then crawl over to me when she wanted me. Prior to that at around 8 months I noticed she was sleeping better and eating better, so she was probably outgrowing her reflux at that time. Her mood was better at home, and she was less clingy with me, but her comfort level away from home and with other people took quite a bit of time. It was very gradual but she eventually began to expand the number of people she was comfortable with. By 18 months she was very comfortable with people she knows like family friends, my sisters (who she only sees a few times per year), even her doctor. Now at two, she’s more reserved than some children, but she warms up to new people in a fairly short period of time. Her overall mood and disposition is excellent – she’s just a doll! I’m still amazed at the transformation.
I really think that the love and caring we provide for her ( and I know you are providing for Hailey) is what helped her overcome her anxieties and insecurities. That in combination with the reflux being resloved. She was probably so miserable and mommy just didn’t understand why. It’s like she finally came to understand that the world was a safe place and that mommy and daddy will always take care of her.
Yes, I am a SAHM. And to be honest with you, my older daugher who was outgoing and secure from birth is so used to me being home that she would not stay at a church nursery or anywhere without mommy until she was 3! I think that’s common in children with SAHM’s. Ellie now will let me leave her with her Nana and Poppa, and she asks to go to preschool like Liza. I think if I had to at this point I could leave her.
I’m sure Halie doesn’t have any mental health issues. Halie will improve too, and you will look back and laugh at how she used to be. I know I’ll tell Ellie stories when she’s grown about what she put her mommy through and we’ll all laugh about it, as you will with Halie.
I’m glad that sharing Ellie’s story with you has encouraged you. I sure could have used it when I was experiencing it with her. That’s why these message boards are such a blessing!
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