I am glad to hear that 
. How are you holding up?
Seeing her in pain at the hospital was a lot for me. My husband and I had to tag team in and out until they got her the pain medication. Ended up crying there in her room. 
I know this is for the best but seeing her in that much pain kills me.
We, my husband and I, are at home now. We both needed to decompress.
2 Likes
It is understanable that you feel like that. Doing the best thing doesnt mean doing the most pleasant sometimes. No good parent likes to see their child suffer. Take all the time you need and try to get some rest. It must be exhausting going through all of this. I hope this whole episode will end soon so you can be happily at home with Kiera 
1 Like
Well, after a hard and tired day yesterday Kiera seems to be doing a lot better today. Her incisions are looking good, she isnāt crying, sheās alert and hungry which is all good. They have her on a slow, continuous feed of Pedialite and will start her on formula again tomorrow. They are also hoping to have at least 1 of her IVs removed by then and will remove the last one after her antibiotics regimen is complete.
4 Likes
i appreciate these updates. I hope they give you some comfort too!
So glad that she is doing so well! Hope her mom and dad and managing as well, and eating properly and resting.
2 Likes
Yes, we are taking care of ourselves.
Yesterday especially was hard. My husband handles stress pretty well but even he needed time away. We both ended up sleeping for a few hours after Kieras surgery and weāre trying to consciously take it easy, day by day, until she comes home.
3 Likes
Kiera was pretty fussy today when we went to visit her, but all in all, it was a day of good news.
My husband bottle fed her today and she drank about 40 ml of formula was is really good for her (she has been drinking between 10 or 15 from the bottle for the nursing staff). Her surgery site is healing up great. The doctor said she might come home Wednesday.
4 Likes
So yesterday was the first time Kiera drank a full 75 ml during a bottle feed, when I fed her. She started falling asleep halfway through and so I had my husband talk to her since he talks pretty loud. He managed to keep her awake long enough for her to finish her bottle. This is a huge accomplishment for her. Hopefully she can keep up this progress and we wonāt need the feeding tube very long. Doctors are still planning to send her home either Wednesday or Thursday so it seems pretty set in stone now.
3 Likes
Gosh dangit, Kiera is such a strong bean! It is so wonderful and inspiring to hear these updates, how much the love and care between you all makes you grow stronger than the hardships youāve been facing. So so so glad for you. Being at home all together is going to be such a wonderful celebration of all the steps taken. 
2 Likes
I agree. Although my anxiety has started coming back. The usual, Will I be a good mom, as well as, Itās going to be hard to work and take care of here if she requires a lot of attention during the day with feedings, which is a possibility and then trying to do housework on top of that. But I talked to my husband about it yesterday and he told me not to worry about the house and he will take care of things before or after work. So that will help.
3 Likes
I would gently call you out if you were not anxious about it (in a friendly way), because that would actually be worrying. It shows how much you are willing to do good, and you will. Of course itās not going to be a perfect journey, and you are not going to be a perfect parent. You will have times of doubts, fears, you will certainly make mistakes sometimes. But you are going to be a wonderful mom. Because you are willing to do well and honor this title, but also because you understand what true, unconditional love is. Thanks to your heart, your story, your resilience. This is all that you are, and it will be conveyed through your experience of being a mother too.
Kiera is such in good hands with you both. Iām grateful for that and for you.
2 Likes
Currently in the car on the way home with Kiera.
7 Likes
cheers quietly to not wake the sleeping baby
So happy for you!!
3 Likes
Oh goodness. Tears of joy. So happy for you @Sapphire! What a relief.
Wishing you all the best for this yet other chapter of an incredible journey. You are a good momma.
2 Likes
It appears we may have found what is going on with Kiera. She has a rare genetic anomaly that would explain all of her issues. We are going to speak with a genetics specialist sometime in the next month to get more details. It seems she may continue to have physical issues as she grows but her intelligence should be unaffected.
5 Likes
Wow, this is quite a big information. How do you feel about it, friend?
Iām glad to hear that you can have an appointment with the geneticist next month. It can take such a long time to see one and go through that process of being potentially diagnosed for something. From there, you should have answers quickly.
1 Like
Iām feeling all sorts of things.
This particular mutation leads to a few syndromes and judging from her symptoms itās pretty obvious the one that she may have (I am of course not foolish enough to diagnose her but it really is obvious). It seems that the outlook for people with the condition is generally optimistic if itās spotted early and lifestyle and medical intervention is timely. So Iām happy about that.
At the same time I worry because I know this can potentially make her life more difficult and I donāt want that to be a reason that she lacks self esteem or thinks life is just too hard, ya know?
On top of that is the sleep deprivation and the headaches (literally and figuratively) that go along with it. My husband and I are both stressed. We make sure to take time out of the day when she is sleeping to just be together for a while in peace and quiet before everything gets chaotic again.
4 Likes
Everything you describe makes completely sense. Thank you so much for sharing once again. Your trust is honored and respected.
Thereās indeed a good side of it - finding answers, receiving further guidance and knowing that it can be identified very early. Thereās so many genetic mutations that lead to conditions that arenāt diagnosed or too late in life. Although it is absolutely understandable to feel worried about her future and starting to ask yourself so many questions about it. Make sure to take it easy, okay? Step by step. The waiting can sometimes feel unbearable, but you will get there, all together.
Iāve been through that process (for myself and my sister) and there is something very special and uncomfortable that goes with the specificity of genetic testing. If you ever need to share your doubts, fears and thoughts through that process, you are of course more than welcome do to it.
Good for you as well to make sure that you both have times for peace and rest. Itās so important. There is a part that is out of your control, but you can still try to take care of yourself, share love and keep some clarity.
Iām rooting for you all.
1 Like
Kiera was finally clear for chest to chest time. She turned 3 months old over the weekend. Itās been a long time coming.
5 Likes
We had an evaluation for Kiera today to see if she qualifies for in home therapy and she does. Also, she did an awesome job at her session. She is low average to average on her physical development milestones which is awesome considering the physical stuff that Noonans can do. Literally the only thing she is behind on is her eating which she scored the lowest of the low on. But mostly good news. Weāre going to get her some toys today now that we have an idea what she likes.
6 Likes