It's been a minute since I have updated everyone with Londyn and a lot has happened. This last week has been so crazy. Actually this past month has been such a roller coaster. I tell myself everyday that I need some serious anxiety medication. This girl is putting us through quite the emotional roller coaster, but we are so grateful that we are on this ride. I often remind myself that I could be on a completely different ride without her... That keeps me grateful and keeps me going. Unfortunately this last week one of our biggest fears came to pass... Londyn got an NG tube (feeding tube in her nose) placed on Tuesday night. It was horrific. I have struggled through surgeries, IV's, blood draws, and many other medical procedures, but none hit me quite as hard as this. The high pitched, painful screams coming from my precious innocent baby left me buckled over the toilet with my body trying to rid the horrific pain I was in for her. My body shook uncontrollably and I sobbed as I listened to what she was going through. My incredible mother-in-law held my hair and rubbed my back as I was folded over the toilet, and my father-in-law held me as tight as he could to stop my body from shaking horribly. It was awful. I was so thankful they were there to offer their support. I could only imagine how betrayed Londyn probably felt as we sat there letting her go through that. Last Sunday night, Londyn decided she was not going to eat anymore. We had no clue why, but her doctors had warned us that if this were to become the case, we would have no choice but to place a feeding tube. We were so bummed, but in the end, it IS what is best for her. She will be able to become stronger and have more energy. It will help her keep up with her grueling therapy schedule. We ask a lot of her each and every day. She already uses so much energy just trying to heal her body, the doctors wondered if she was just flat out exhausted. Which brings me to the next new thing...
We are really ramping up her therapy. Physical therapy is going to be coming three times a week, occupational therapy will come three times a week, and early intervention will either come once a week or every other week. This doesn't include any of her specialists that she sees or her visits to the pediatrician (usually twice a week). She also has to do therapy multiple times a day with me. Needless to say, our life is totally and completely centered around that beautiful angel. We wouldn't have it any other way. She works so hard. I am so proud of her. Even with all that we put her through, she is the happiest baby I have ever known. She never cries unless something is wrong. She will just play all day and keep herself entertained. Her pediatrician actually said to me, "In all of my years of practice, of all of the babies I have ever met, I have never met a happier baby than Londyn." That meant so much to me. She has every reason to be so cranky, but she's not. She is truly an angel.
She is definitely NOT loving the tube. Can you blame her? She has now got it out four times (two times she worked it up with her tongue and then she sneezed and it came right out. The other two times she yanked it out.) Thankfully we have Uncle Bryce. He has rescued us and helped us get it back in. Tonight, I actually placed it all by myself! I had Uncle Bryce right by my side to direct me, but I did it! I was so proud of myself. It is so tough to do. Mostly emotionally, but its also tricky. It is so hard to watch people hold your baby down while she cries, and then watch her throw up because you are sticking a stupid tube down her throat. :,( This mom business is tough. Londyn will likely have a G tube (a surgically placed feeding tube) placed within the next month or so. She will probably have that for about 6 months or until we can get her beefed up some more. Which leads me to the next thing...
Her GI doctor sent her to have an upper GI scan done. For the scan they had her drink barium while they watched with an Xray machine. This was so that they could make sure that all of her anatomy is formed correctly before they place a G tube. They don't want to mask a problem so we need to check all of these things first. We were able to see that her anatomy is fine and everything went down correctly but as we watched for a few minutes, all of the sudden the barium shot back up into her esophagus. Poor thing. That could explain a lot. She has a pretty severe case of reflux which burns her esophagus. No wonder she doesn't want to eat huh? We are going to put her on a few medications to block the acid. They can't prevent her from refluxing but they can at least help it to not burn.
We also got her helmet ordered last week. I am super nervous to see how it goes. The poor girl is going to have a feeding tube AND a helmet! I have a feeling its going to be a rough couple of weeks while she gets use to it... It breaks my heart, but when I think about her having the helmet in comparison to her having a full cranial reconstruction, I feel much better. We can do it. We can do hard things. The doctors say she will probably have the helmet for about 3-6 months. If we can catch her in a growth spurt she may only have to wear it 3 months. It just depends how she grows (in this case, the feeding tube is a definite blessing.)
Londyn's occupational therapist was so impressed with her that she called her pediatrician to tell him how remarkably well she was doing. She is so excited to work with Londyn and help her on this road to healing. I should actually say that ALL of her doctors are incredibly impressed with her. They cannot believe the things she is doing. She is SO smart. The other day we went to see her pediatrician. While we were there he went over to the bed she was on to have a little heart to heart with her. He said, "Londyn, you have been spending a lot of energy on your length and healing your brain and that is great. That makes me really happy, but I need you to start putting some of that energy towards your weight okay? Do we have a deal?" She instantly shakes her head back and forth at him to say "NOPE! NO DEAL!" It was hilarious. We were dying. Such a smart kid! She cracks me up every day.
We are so grateful for all of your love and support. It means so much to us and keeps us going. This is definitely not an easy task. It takes a lot of time and a lot of support. We couldn't do it without our friends and family. We are so grateful to each and every one of you. Please keep praying for Londyn. She needs all the good vibes and energy you can send her way. WE LOVE YOU ALL.
