Brown and Pink Polka Dots : 6 days

I feel like there is a lot to write here... I am going to try to make this as clear as possible

Lydia was born at 8lb even. When we left the hospital when she was born she was 7lb 6oz. Five days after she was born she was 7lb 7oz... a week later she was 7lb 8oz... and a week later she was back to 7lb 7oz. By 2 weeks old a baby should be back to or over their birth weight... not half a pound under at 3 weeks old. Her doctor told us when she was 2 weeks old that if she did not gain weight in the next week she was sending us to GI. She also put her on a feeding plan where I would nurse Lydia, then I would pump and give Lydia a one ounce bottle of breast milk an hour later and then the next hour nurse again (is she was suppose to breast or bottle feed every hour!) I felt like all I did was work on feeding Lydia! However this was not working. She was refusing to wake up to eat, screaming in pain, choking, and vomiting (no I am not talking about spit up). It was a LONG 9 days of this schedule... but in the end she did not gain weight!

On 7/6 my mom and I took the girls to the ped for Lydia's weight check as Jillian had an appointment at Children's in the afternoon that we were headed to after. Once we got her weight and figured out that she was down an ounce her ped told us that she was diagnosing Lydia with failure to thrive and she wanted us to take Lydia to the Children's ER. I explained that we had an important appointment for Jillian in a couple of hours and they said that they thought it would be ok for me to take Jillian to her appointment first and then take Lydia to the ER. I went out the the car and nursed Lydia quick and then as we were getting ready to leave the ped called and said that she had called up to Children's and they did not want us to wait until after Jillian's appointment... they wanted Lydia in the ER asap so we drove straight there. We got to the ER and they were expecting us and quickly moved us into a room (rant... ER is not for a minor sore throat... and don't try to convince nurses that your child's pain is a 10 out of 10 when they are bounce off the ER walls... ok rant over!). Once we got into the room a fellow came in and asked a ton of questions. We decided the best option was for mom to take Jillian up to her appointment and text me during the appointment so I knew what was going on. It killed me to miss Jillian's appointment (I'll write about that at the end) but I needed to be there for Lydia. A nurse came in and started an IV on Lydia and cathed her for some pee. A little while later someone from lab came in and took some blood (her little vanes did not play nice). The doctor came in and asked if the feeding schedule I told the fellow was correct and I told him yes. He said that is the craziest feeding schedule he had heard of and if she had not gained weight doing that then she needed to be in the hospital so we could figure out what was going on. A little while later a fellow from the floor came down to ask all of the admitting questions. They then brought us to the 12th floor. We got settled into the room and then Brent met us. Jillian's friend Caroline was up staying at the Ronald McDonald house for an appointment so they came over to see us for a little bit. Dan brought us Cheesecake Factory for dinner. While in the ER they had us hold off feeding her for close to 5 hours and she did not care at all that she was not eating. Once we got up to the floor they decided she could eat again so I nursed her but they decided that since the crazy schedule was not working that we could just go to feeding her every 3 hours however they wanted us to weight her before and after each feed to see how much she was taking in.

7/7: In the morning they weight her and it showed she was 7lb 7oz and they tried convincing me she was up an ounce, however they weighed her right after she ate an ounce and the day before they weighed her after she had not eaten for 5hr. They had genetics come to the room to talk to me. Genetics looked her over and said that they think whatever is going on with Lydia is linked to Jillian (and my) health stuff. They said that since have already done so much testing on Jillian that they did not see the point in running the same tests again on Lydia just to get the same results. They decided to run some blood work just incase but told us they did not expect to see anything on the bloodwork. They did tell us that they wanted to re-run Jillian's exome sequencing so that we could have that for Jillian's visit in August (yes we finally got into the clinic for "this") I was happy that he is taking care of running the exome sequencing again but annoyed that it was not already done because I had asked our genetics counselor about this a couple of months ago and she did not do it. The geneticist said that right now our focus needed to be on getting Lydia the needed nutrition and that they would help us with the big picture later but for right now we needed to figure out the urgent need. During rounds the doctors talked and said that Lydia had gained an ounce so maybe she could go home the next day. I was MAD. They had not gotten an accurate weight and had done nothing to help her. They decided to have lactation come to see me because they wanted to know the calorie count of my breast milk to accurately figure out how many calories she was getting in a day. The lactation consultant came in and had me pump milk and she took it down and tested it. Breast milk and formula are normally 20cal however mine is 25.5cal! My breast milk is denser in calories then average which was helping her because she was not getting enough in during the day. Lactation agreed that what was going on has nothing to do with my breast milk. A little while later the dietitian came in. She had been a dietitian that we had seen before in the GI clinic who is now working on the hospital side. She knows our story well and knows me as a mom. She came in and asked how it was going and I laid out my frustrations about how they weighted her and them talking about sending her home when I knew we would just go back home and she would continue to get worse. We had a really good conversation and she promised me she would help. I felt a huge sigh of relief wash over me as we talked and I knew she would help fight for the right thing for my little girl. She calculated it out and figured that with the rufusal to eat at time, the small amount her stomach could handle (if she ate anymore then an ounce at a time the vomiting and choking got really really bad) and the vomiting that she was on taking in HALF of her needed calories. HALF! She agreed that we would see what the weight was the next day and go from there, however the conversation about a feeding tube was started. She also told me that she would contact Jillian's GI doctor and let her know what is going on. I highly respect Jillian's GI doctor and her opinion in things matters a lot to me so I was really happy when she said she would contact her for me. I was also blessed that day with company from Caroline's mom Stacy... there is just something about having another mom who has walked this journey there to support you. In between appointments they had going on that day they would come up to the room so I could vent and Jilli got to play with Caroline (and her sisters)

7/8: I knew by how the day had gone that we were most likely placing a feeding tube that day so I asked Brent to work from the hospital so we could make choices together. They weighed Lydia and she was down an ounce from the day before. I knew looking at the scale what that meant. The head doctor came in and we talked for a little bit and agreed that we had already tried crazy feeding schedule at home that there was no point in trying it again... that we needed to get food in her and have it stay in. We decided the best choice was to put an NG tube (tube that goes in the nose and ends in the stomach) in. Placing the NG tube was the first time she cried big tears! The feeding plan was for me to nurse her (weighing her before and after) and then figure out how much she took and subtract that from 2ounces and give her the remaining amount in the tube every 3 hours. For the first one we tried using a syringe and gravity to feed her however she got unconformable at the end. The next time we decided to use a pump and run it in over a half hour however she was screaming in pain so the nurse stopped in half way through. While it was stopped the GI doctor on call (NOT Jillian's GI doctor) came in with a fellow. My stomach dropped as he walked in the door. See we have a history with him and Jillian and if we never had any interactions with him ever again I would be happy (if you search this blog you can find out about the time he gave Jillian pneumonia!) He came in the room and was a jerk. He had the gull to ask me if I even tried anything at home to help her before rushing her to the hospital! I was so grateful when he walked out of the room (I had been begging for a GI consult since we were admitted and then was so mad when he walked in and I regretted asking for the consult). The nurse came in and restarted the pump but trying to run it over an hour (so really slow) however Lydia's reaction was the same and the nurse turned it off and called the doctors and told them how it was going. It was decided we would not give her the next feed to try to give her stomach a break. The night was lllloooonnnnggg! I would nurse, then we would put breast milk in the feeding pump and run it for an hour but unlike Jilli I could not let it run while I slept because Lydia was in pain and choking. Then by the time she would finish the feed and we would both get to sleep we would need to start the cycle over again in less then an hour. I got such little sleep.

7/9: The head doctor came in and I expressed my worries. Lydia was in a lot of pain and no one was getting any sleep with this schedule. Lydia did gain a really small amount of weight but we decided that an NJ tube (goes in her nose and ends in her intestines) was needed because she could not continue with that level of pain. They said she was scheduled to go to IR at 10 however they did not come until after 11 to get us. Brent and I went down and the people in IR just looked at us and asked why they knew us and as soon as we said Jillian's name they knew exactly who we were. They had one kiddo in IR already so it was a little bit of a wait. They then took Lydia back. They said for NJ tube placements that they don't have parents come in so Brent and I headed to the crappy waiting room (there really is nothing wrong with the waiting room, I have just cried a time or two in it while waiting for my kids in IR knowing my kid is experiencing pain and I can't help them). They came and got us when she was done and she snuggled right up to me. We then went back to the room and started her pump. She did so much better and was no longer screaming! That night we also successfully got her to pee in a bag. We had been trying since she was admitted to get her to pee in a bag for a test and 7 pee bags later (and taring up her poor little bottom) we had a nurse who was able to get it.

7/10: She gained weight again! Most of the day was just spent hanging out. In the morning Brent's family came up and in the afternoon my parents brought Jilli up and we all just hung out. They had me nurse Lydia a few times during the day just for comfort and oral skills.

7/11: She gained weight again! They had told us if she had two days of good weight gain that we could go home and we had reached that goal! However before we could go home we had multiple things we needed to do. They sent speech in to observe her oral skills and they said that her muscle tone in her cheeks is really low so they decided that I would comfort nurse her a couple of times a day and feed her a small amount (1/2 oz) bottle a couple of times a day to work on her oral skill. Anything she takes by mouth is considered extra calories just for oral skill. They suggested a different bottle type and showed me how to help her low toned cheeks. The dietitian came in and we worked out a home feeding plan and VNA came and brought her feeding tube supplies (they got us the same pump as Jilli has). During the day I was noticing how many times Lydia almost pulled out her tube. This is not a tube that can be placed at home, it must be placed in IR so if it comes out at home we would need to drive to Children's. I asked if they could place a bridle on her tube. Jillian had one when she got her NJ tube so I knew how much they can help (it is a small plastic piece with a string that anchors the tube in the nose) The doctor had to figure out who could help us with this since currently they are not placing many bridles right now (the doctor said bridles seem to be one of those things were for a period of time they give them to all kids with tubes in their nose and then for a while next to no one gets it and then it swings back... partially depending on who knows how to put them in). A nurse from the NICU came and was able to place the bridle in! Someone from the lab came to get more blood. The doctors also decided that they want Lydia evaluated for therapies and we are going to go right to using New Berlin Therapies instead of Birth-3. They also decided to sign Lydia up for a nurse to come out to the house once a week to do weight checks. They were able to get Lydia added to Jillian's appointment for "this." They then took us down for an x-ray to make sure before we left that the tube was in the right place and then we were discharged. We came home to dinner in the oven! Jaime and Jason were over and made us dinner and let us vent about how everything had gone.

7/12: The nurse came in the morning for the weight check. She said we were the easiest first NJ tube appointment she has ever had because normally they teach you all about the tube and the pump and we already know all of that. In the afternoon I braved taking both girls to Target and Walgreens by myself. We got quite a few looks but I just held my head high and did what I needed to do. Yes there are tubes running out of both of my kids, but we still need to run errands just like everyone else!

7/13: Today mom helped me take the girls to Lydia's doctors appointment where she has gained weight again! We then got the joy of going to the DMV because my birthday is Monday and that means my drivers licenses is going to expire on Monday! Thankfully the DMV was rather quick. We then went to Kohls and Walmart and came home to have Tacos for dinner. Today she is struggling with pooping. Monday night we started to give her formula just in the two bottles a day she is getting (I am pumping for the milk that goes in her pump) but if she is going to puke stuff from the bottles sometimes I would rather formula be puked then breast milk I am working hard at pumping. I am wondering if the formula is making it hard for her to poop so we are going to try a different kind tomorrow.

We now have a GI follow up on Monday morning for both of the girls, the nurse is coming over next week, and Lydia's one month check up on Wednesday. These two are going to keep me busy with doctors appointments!

Jillian's doctor appointment last Wednesday was with the neuromuscular doctor. He drew 6 viles of blood and is sending Jillian for testing next month (it is not a fun test and Jilli has to be awake for it... like this test is not fun enough that they schedule people to come help us with Jillian because she will be that uncomfortable). They have a couple of ideas on a few things but we will know more after we follow up with them next month after the testing.

A HUGE thank you to everyone who prayed for us and sent us kind wishes last week. Thank you to Dan for bringing us food multiple times in the hospital and for Jaime and Jason for making us dinner Monday night. Thank you to Annette for coming over and taking care of Jillian's med supply delivery. A MASSIVE thank you to my parents for all of their help last week with Jillian and spending time at the hospital with us and bringing us food in the hospital. We are so grateful!