Thank you for sharing these beautiful updates, @Sapphire. It really gives a smile! There are certainly other milestones ahead to reach, but it seems that you are all finally seeing the fruit of your efforts, patience and love. The foundations that you’ve been creating with Kiera during this incredibly challenging and frightening start in life is going to be such a pillar of strength to her throughout her entire life. Well done, you wonderful momma. 
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Thanks. It is challenging working full time and being a stay at home mom at the same time (I work from home and have discussed it all with my manager) but it’s so exciting to see her do new things like grab toys and try to sit up. Would be nice though if I wasn’t also having to take care of my older brother, heh.
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Being a mom nowadays really is another word for just being a superhero in my opinion. I’m so glad that you’ve got the possibility to work from home, that must be a huge relief.
Regarding your brother, that is completely understandable. Given the recent updates you have shared about him, it also sounds that “taking care of” him involves some huge responsibilities as well and a need for some more inner work/healing on his end.
When you say having to take care of him, do you think that is true, or would it be more an expectation that you put on yourself? I know it’s a tough question and I hope that doesn’t sound judgmental because that is definitely not what I’m trying to convey here. I wonder to which extent your commitment to him could be balanced differently so he could also take more ownership of potential obstacles in his life right now, and to which extent it could be possible for you both to develop together a different support system for him, so he would be relying a little less on you specifically.
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I know I have no obligation to take care of my brother really… it’s moreso one of those things where we only had each other during the hardest times of our lives, at least when we lived near each other. I think I might finally have to just let him either sink or float at this point. I really wanted to avoid all the family drama after Kiera was born, and especially now with her diagnosis. My brother has been talking about resorting to illegal activities to get by now and it really solidifies how much I don’t want Kiera around him or his dealings. My husband has been humoring him so I don’t have to and I told him (my husband) this morning this whole situation is irritating me, not only because of what happened on Tuesday, but because my brother has continuously needed something or another SINCE then and so I have barely seen my husband in the past week and Kiera hasn’t really seen him at all. If it was just work keeping him away, that’s different but it’s not. It’s my brother who just won’t get his shit together and I’m not ok with that. My husband and I are dealing with enough as it is. Not to mention I’ve not had any kind of reprieve on parent duty (not to sound selfish or anything). I love Kiera but I always saw myself being just fine without kids of life turned out that way and now I’m doing almost everything with no help because my brother refuses to take care of himself. -_-
Sorry for the rant. I really do want to just cut ties with him to be honest, and just let him figure stuff out because I don’t have the energy to do it for him and I miss my husband (tomorrow is our 9 year anniversary which is why I forbade him from helping my brother tomorrow) and I need a break from all this.
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My husband just called me with some good news; Kiera had her physical and speech therapy appointments today.
As some reference to what happened - yesterday I was going to try to bottle feed Kiera since both my husband and I were home and I didn’t expect what happened. I literally just showed Kiera the bottle and she started gagging really bad. The bottle was nowhere near her.
Anyway, so my husband shared this with her speech therapist and she said we should start working with Kiera to use a spoon and start feeding her pureed food which we have been wanting to do for a while now, so hopefully she will start to gain weight now and we won’t have to worry as much about formula or her weight gain.
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Hi Sapphire
I am glad you got some good news. I hope Kiera will gain weight now and eat more. I really hope this will work for you and for Kiera 
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Thanks Ashwell, I hope you’re well.
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Well… we’re not allowed to give Kiera purees snd even though she did manage to gain weight it wasn’t enough. Now they are making us literally force feed her and she has to gain 8 times as much weight in 3 weeks. This is going to be terrible.
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I am so sorry Saphire. Force feeding someone is not a pleasant experience. My parents have shared with me their experience feeding my brother who has diabetes since the age of 4. It’s gonna be hard and Kiera is not gonna like it but it’s for her good even though she doesn’t understand it right now. You are a great mother Saphire. So very caring about your child. You want what’s best for them and you love them so much. I really hope it’s going to be less terrible then it looks like now and that these troubles are gonna end soon. Sending lots of love
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Thanks.
Yea. This is pretty much the main thing that keeps me going through with this stuff even though I don’t want to. I know she needs to gain weight but it just kills me to see her upset and throwing up all the time.
I know parenthood is going to be full of hard decisions and having to do things for her that I don’t want to do and I hope that I get better at it over time.
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For the past 2 days Kiera has not slept, has been throwing up constantly with a fever and this morning her g-tube was bleeding. We took a trip to her GI doctor and they said to to take her to urgent care if we can’t get her in to see her doctor today. I really wish the doctors weren’t pushing her so hard to gain weight as Noonan Syndrome makes it hard to gain weight anyways. She has gained weight but she’s completely miserable and now she won’t hold anything down. I hope it was worth it, doctor.
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My goodness, @Sapphire, this must be such a roller-coaster of emotions for you and your family. I hope with all my heart that your little one is going to feel better soon and that you get to see a doctor as soon as possible. It feels like there isn’t any perfect solution there and always a negative cost for every little win along the way. That’s not fair.
Please keep us updated. You are a good parent.
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Thanks Micro.
We are currently giving her a mix of formula and pedialite and so far she has kept it down. She’s also taking a nap in my arms, getting real sleep for the first time in days. Her fever just came back. We ha e an appointment to see the doctor this afternoon.
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Nobody knows what is wrong.
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It has been a week and things are going well for Kiera. In the past week she has thrown up only 1 time, in the middle of the night. We have upped her feeds to at least 100ml over just over and hour and she doesn’t even gag anymore. She’s becoming a side sleeper as well. It’s so adorable. She’s making amazing strides.
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Such big progress there! This is wonderful to read. Thank you for sharing, friend.
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Kiera is doing really well. She still has been able to keep food down regularly and we’ve got her taking 99ml per hour by pump each time we feed her. This is up from 75 with the ultimate goal currently set at 260 per hour.
We had her GI appointment yesterday and we got her a smaller button for feeding since she is doing a lot more tummy time. She still hates it but she holds her head up pretty well and has started pushing herself up.
She is 1 foot 11.4 inches which is actually lower than 1st percentile. She weighs 12 lbs 8.5 Oz which is in the 2nd percentile. Her pediatrician is not happy with her progress but her dietician and gastroenterologist is, so once again her doctors can’t agree.
We are trying to stop taking her to the hospital she’s been going to since she was born and where I went when I got sepsis. Nobody communicates or knows what’s going on and they have to do tests/take samples multiple times because they do the wrong tests or lose the samples. This happened to me 7 times when I got sepsis and once yesterday when they drew blood to check Kiera for Leukemia as suggested by her geneticist. They drew the blood in the wrong tube so, after Kiera went half the day without eating and we drove almost an hour home, they called us and asked if we could come back because they messed up. I told them no. We can’t waste the gas and we had other stuff to do, namely feed Kiera. We’ll just have to get her tested next time she has an appointment.
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Kiera likes cantaloupe. Yep. The first food shes allowed in her mouth. She also likes berry teething biscuits. I thought this would never happen.
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Exciting isn’t it? Lots of firsts to come for sure. Do you have a baby book for her?
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My husband does.
I was just really worried since she still won’t take a bottle. I guess she just felt like skipping that part. Now any time I offer her food she opens her mouth. Such a relief.
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