It's official!! At 8 months and 4 days old, Addie hit the 10 pound mark! She has gained nearly 4 pounds since coming home; she is getting so big!!! I am so incredibly proud of her. Every ounce is hard earned. We are still struggling with feedings. We have been able to increase her feeding volume to almost 3 ounces every 3 hours. Still much less than it needs to be for her size, but that's a LOT for her small stomach. Unfortunately, in the process of increasing volume, she has started taking less by bottle. I think it's a combination of not getting hungry now, and maybe, just maybe, at the lower volume she was starting to actually get hungry between feedings. She also had gotten a hefty bump in reflux meds at the same time she was drinking more on her own, and I think that helped her be comfortable enough to drink more, and now that she's gotten bigger, she's outgrown her ideal dose, and the reflux is roaring back with a vengeance. She will barely drink anything from a bottle now. ..we have gone from 20 mls down to 10 mls and now I'm doing well to get her to drink 5. To put that in perspective, 30 mls is an ounce, so we have yet to get back to drinking a full ounce since coming home. Beyond the bottle feedings, she still struggles with her gtube feedings. I can only guess it's a combination of reflux coupled with a too-small stomach that causes her so much discomfort at times. Some feedings like the one we just finished go off without a hitch. She actually slept through the whole thing. Then there are others like the one before this when she starts to scream, not just cry. ..scream, when we're not even halfway in to the feeding. Feedings like that take up to an hour and a half to finish. It physically hurts us when she is that upset, and we haven't figured out a fool proof solution. Sometimes it helps to walk her into another cooler room (she is one serious hot-box baby) so she can cool off and watch a different fan. Other times it helps to lay her in her pack and play and just walk away from the feeding for a few minutes until she settles down. Sometimes like tonight, you just walk her from one room to another, patting her, singing, humming, sitting for a moment and then moving on when that only makes her more frantic. Then you just pray for relief for her. ..eventually something clicks, and it comes to her. Reflux is a terrible, terrible thing. ..but I am thankful that it's so much better than it was. At least she is keeping her food down, as unpleasant as it is for her sometimes. At least it's not every feeding that's miserable, and at least reflux (generally) starts to get better around 1 year of age (adjusted, based off of due date).
During that window of time when she was refluxing less, it is like she just woke up and started being a curious little baby. She played with her toys more, she was awake a lot more (when she's refluxing, she lives on a "newborn" schedule where she sleeps after every feeding, exhausted from fighting the reflux), and she made huge strides socially. She "saw" us for the first time! She used to just look through us, looking at some object over our shoulder. Now, she smiles socially, coo's, chatters non stop, and is starting to talk to herself in the mirror. She used to be terrified when she woke up in the middle of the night because she couldn't "see" us or what was going on around her, and now she wakes up happy and ready to play when she needs a 4 am diaper change. Her OT has been so impressed with her. I've been amazed at the difference in her development when you take the worst of the reflux out of the picture. This week she is discovering her feet. I will push them up towards her head and sing a silly song, and she just smiles and chatters. She loves to play Patty Cake, although the "throw it in the pan" is a little overwhelming for her sometimes. It all just makes me so happy for her. My big girl!!!
Our newest concern, beyond feeding, is her neck and her head shape. She has a strong preference for looking to her right. She always preferred that side, but it got noticeably worse after her shunt surgery. For a week she couldn't lay on that side at all, and for a while after that, it was just uncomfortable for her. So, she started to develop a flat spot, and then add into that that she can't hear out of her left ear, so it has been hard to get her to pay attention to her left side. So, now the flat spot is quite flat, and she has developed some shortened / lengthened muscles in her neck (a condition called torticollus). No one explained what a big deal this is, and we're just ignorant new parents. I have since learned that this could affect her spine's alignment, her balance, and her ability to meet developmental milestones if we don't get it corrected. So, Philip and I are having to retrain ourselves. Being righty's ourselves, we tend to carry her on the left and do things like cuddle her, change her, etc. from the same side, which all encourages her right sided torticollus. It's almost like being bumbling brand new parents again, learning how to diaper her from the left and carry her in our right. We now have to constantly be aware of how she is laying when she is awake so we can help her spend as much time as possible on her least favorite side. She IS doing better. She spends more time in mid line (looking straight ahead) and looking the other direction, and her neck is getting looser. I just hope we focused on it in time to help her without having to get a helmet. Yes, she may have to wear a helmet for a few months if we can't help her correct this on her own. The helmet would just help with her head shape, though, and do nothing for her neck. That we have to address on our own and with PT / OT's help. Please pray that she doesn't have to wear a helmet. ..it's a small thing, but a very hot natured child in a helmet in the middle of the summer just doesn't sound like a good time... .
All in all, life is simply good. Our days have a kind of rhythm, as do our weeks, and I enjoy that. There are certainly moments during the day, every day, when I want to bang my head against the wall because I feel like I'm not doing enough to meet all of her needs. ..there is so much to do! We need to work on tummy time, turning her head the right way as much as possible, playing with toys and working on coordination, working on head control, stretching out our neck, bottles. ..all in and around a gtube feeding every 3 hours. We hope to start adding in a tasting of solids in the coming weeks! So, that will be something else to work in, but it's something I hope will ultimately help her reflux and someday kiss the gtube goodbye. In the midst of the moments where I feel totally inadequate, there are brilliant moments when she smiles huge, gummy smiles at me, coo's, says "Mama" (not really, but it could be interpreted as sounding like "mamamamama" if you wanted to hear it. ..so I do!), and makes more developmental strides. Those are the moments I live for and that get me through the rest of the day. She is a truly amazing little person. I hate that she has to work so hard every single day, and there are moments when I wish for just one truly easy day for the 3 of us. ..but that's just not to be for this season in our life, and that is ok. I know I will blink, and she will be 3 before I know it. One of the greatest blessings of having her so early is that she's still small, and she's still a "baby" in so many ways. We are working hard to get her out of the infant stage, but at the same time, it's so special. So many parents wish they could keep their children that small for a longer period of time. ..well, we get just that wish. She's just now as big as some of our friend's newborns! I just tell her that anyone can be born big. ..we just have to want it more than the rest of them do, and we will be stronger for it.
Please continue to keep us in your prayers. Life is still a huge adjustment for me and Philip, and we are all having to work so incredibly hard alongside Addie to help make sure she is getting what she needs day in and day out. We are exhausted more often than not, but that comes with being new parents. Addie still has so much to overcome, but with your support, she has already come so very far. My ultimate prayer for 2012 is no hospital stays and no surgeries. ..that's an ambitious prayer for the parent of a shunted baby who has a higher likelihood than not to have a shunt revision in the first year, but I know my God can make that happen. Thank you all for blessing our lives. I promise more details on her therapy and pictures with the next post.
Much love,
Rachel
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