What a day

Today was the saddest day I have had since Ashley was born. It was my first (half) day back at work. I have been dreading this day for quite some time and lately every time I would think about going back I would start crying. So, all morning long I cried, I cried at the doctor's office, I cried during lunch, I cried after leaving Judy's and I cried at work. Eventually I got busy enough at work to get my mind on something else and the 3 hours went quickly- that's right I was only gone for 3 hours! It felt like 3 days!  :)
We went to Dr. Newlin this morning for Ashley's 2 month check up. It went well, daddy wasn't able to come with us, so we were on our own. When we first got to the room the nurse asked how long Ashley had been congested and I told her she wasn't congested, she always breaths like that. But, she offered to test her oxygen levels, so I said sure. She tested first on her left toe and got 76, then she said "hmmm, that can't be right!" Not what I want to hear, so she tried the right toe and got 80. She said "well, that's better, but still not quite good." A few (long) minutes later the head nurse came in and tested her on her hand and got 100. Thank you! I don't know why I got worried, those tests are not that accurate when they do them on their feet anyway. Dr. Newlin said she looked good. He was glad to see she gained weight, but really would like to see a little bigger of a gain, so he wants to see her back in a couple of weeks to do a weight check. He said as long as she continues to grow at a good rate and is eating well he is fine with waiting the 3 months that Dr. Regehr suggested. He said he will keep a little closer eye on her than he would with most newborns and we will see how things go. Ashley had an incredible fussy day yesterday and I mentioned that to him, so he suggested that we could try a different medicine than the Zantac that she is currently doing and see if she does any better with that one. The Zantac has made a huge difference for her, but she still has a bit of trouble on some days, so a different one is worth the try. Ashley got her 2 month vaccinations while we were there, it was a liquid drink, and three shots. She did well, only cried while she was getting the injection and calmed down quicker than I thought, we nursed afterwards so that helped too. Next, we headed back home to get the infant Tylenol just in case she needed it after the shots. Then on to Judy's. Judy is the mother of a Trinity graduate. Her daughter graduated in 2009 with John. Her and her husband adopted a little girl who is now 2 and half and her older kids are all out of or in college. God orchestrated our child care set up completely (more on that story later). I felt bad that I had scheduled her shots for the first day for Judy to watch her, but that's how it worked out. I gave Judy some supplies and tips/tricks for Ashley and headed on to work. I just keep thinking I'm going to miss out on everything she does, but I have to remind myself she is only 2 months old. Right now, she doesn't do much of anything :)
Everyone was happy to see me back at work so that was very encouraging and there was plenty to do. Judy texted me about 2:00 and said Ashley drank an ounce from her bottle, had a poopy diaper and fell asleep. Yeah, good job Ashley! Nate stopped by work about 3:15 to check on me since every other time he talked to me that day I was crying the whole time. Before I knew it, the day was over and it was time to go. When I got back to Judy's, Ashley was sitting in her bouncy seat looking out the window! She did good, Judy said she slept for about 2 hours and then ate 3 and a half ounces from her bottle! She said she gobbled the whole thing up, and had milk all over her face, and didn't even stop to burp! I was so relieved because I wasn't sure how she would do, but I guess she decided since mom wasn't around and hadn't been for awhile, she would go ahead and eat without me. :)
We stopped off at Nana's and saw Nana, Traci, and cowboy Garret. We had to pick up supplies for a surprise for Ashley that I am working on.
When we got home, Nate had cooked dinner! That was the best part of my day! Coming home after work and a stressful/long day and having my awesome husband in the kitchen cooking dinner for me. He is a blessing!

2 months old

Today you are 2 months old. What a precious gift you are to daddy and I. We are amazed by you each day and our love for you grows every day. At the doctor today you weighed 10lbs 10oz. We forgot to get your length measurement, so mommy and daddy did it at home and estimate you are at about 22.5 inches. That's 2 inches in 2 weeks, we're prob. off a little. You gained 8.5 oz in 2 weeks. You are smiling more and more each day and every smile is so rewarding. You are starting to be more vocal and "talk" to us more. You like to be sitting upright against our shoulder and look out the windows.  We recently had our first snowfall of the winter and although you probably couldn't see it falling, we still looked out the window to watch, it was beautiful. You are amazed by window blinds and light fixtures and you've started to notice the ceiling fan, especially when it is moving. Your neck is getting stronger and stronger which helps you look around and find new items to look at.You are sleeping for 4-5 hours at a time during the night. Mommy loves to wake up and feed you during the night, only one time is a blessing compared to the 4-5 times we were getting up before. We have tried to give you a couple of bottles, and so far you haven't been too interested, but not turned away. Each time you have had about an ounce or two. Today though, you drank 3 and half ounces at one time! Good job! You like bath time and rarely cry during a bath, although I think you are still trying to figure exactly what we are doing! Your eyes are still blue right now, the consensus is that they are going to stay blue, but they could still surprise us, and they could even change the shade of blue, we will wait and see. We love you Ashley Grace.

2 month photo shoot

Claira and Ashley

Doctor Update

We saw Dr. Regehr yesterday and the report was good. The results from her Upper G.I. showed that she does have severe reflux, that combined with the severe laryngomalacia explains why Ashley had been so upset and in so much pain. She has been much happier with the reflux medicine she's been taking so the doctor was encouraged by that. The G.I. test also showed there was no narrowing and no blockage so there was no immediate need for surgery. The report from the apnea monitor she has been on apparently showed two alarms for low heart rate, one was the first day we used it and the other was yesterday morning. I was surprised because I do not recall the machine alarming for anything but loose leads. However, this morning it alarmed again for low heart rate. We're going to make sure that the machine is working correctly and hope that this is not an issue for her. The doctor still talked about surgery, he said most children will grow out of the laryngomalacia between one and half to three years! So, at this point he wants to give her time to grow and will see her back in 3 months. A couple of concerning things he did add is that the reflux could still be an issue even after her voice box is developed and that we should continue doing the apnea monitor because a child with laryngomalacia is at a higher risk for SIDS. I have already worried about this and now I have even more reason to worry! Thankfully we do have the monitor though. We are thankful for these doctors and pray that Ashley will continue to improve each day.

Babysitting

We left Ashley with a babysitter for our date night. We actually had left her once before with Awma and Papa when we went to visit Mimi in the hospital and another time with Papa Bear and Gigi when we went to visit Tate in the hospital. But, we decided to go on a real date and go to dinner and a movie. So, last Saturday we left Ashley with Awma and Papa Rog and we went to Jason's Deli and to the movie True Grit. We were nervous because she had been so fussy for the previous week, so we hoped that she would be the perfect angel that we knew she could be, and she was. Awma said she was very happy and she was all snuggled in her blanket with her paci in Awma's lap when we got back. We hear that Uncle John got to change a diaper (the rule was, you want to hold her, you've got to change  her) and she also got to play dress up.

Princessa Ashley- this is her new dress Awma bought in Mexico. She just has to grow into it  :)

That was easy

We had the Upper G.I. test today. Ashley did great! She really is a good baby. We had a rough night last night. She took a bottle from dad, and drank about 2 ounces. But, the aftermath was not as exciting. She could have just not been feeling well (because she spit up multiple times throughout the morning and threw up the day before). I think it could have been the bottle though, she possibly swallowed more air than usual and that really upset her. It was back to where we were last week, the uncontrollable, nothing we do can help crying. Nate got her to sleep shortly after her bottle and then he left for bible study. Her nap lasted about 10 minutes and then she was up crying for the next two hours! The poor thing. She finally went to sleep around 10 and slept until 2:30. I had been really nervous for this G.I. test. She was allowed to eat for 4 hours before. Our appt was at 8:15. So, I kept telling her to eat all she wanted at 2:30 because she couldn't eat again for awhile. She started to stir around 6:15 and I got nervous, but she never fully woke up. She would cry out every once in awhile, but never fully woke up and was ready to eat. I went in at 7:45 and had to wake her up! While we were waiting at the doctor's office she was fussy and ready to eat, but she found her hand and that calmed her down. They would only let one of us be in the room during the test, so daddy let me go in with her. :)  During the test she did really good, the barium looked gross, almost like glue, very chalky. But, she gobbled it down and didn't seem to mind. They laid her in all sorts of positions getting a good look at her and then it was over. Prob. less than 10 minutes for the actual test. We nursed after and she is a happy little one. We have an appointment with Dr. Regehr again on Monday afternoon where we will go over the results of the test.

Cousin Carver

Ashley's cousin, Carver Levi Tinius was born Thursday, 1-6-11. He weighed 8 lbs 14 oz and was 20 inches long. He is a big boy! He almost passed Ashley in length that she currently is. She still outweighs him, but he has chubby little cheeks so he looks bigger to me. He has a full head of hair...long, dark and a little wavy. Labor was only about 3 hours for Annie and everything went great. Congratulations Chase and Annie!

Ashley 6 1/2 weeks, Carver 6 hours!

Great Sleeper

Ashley slept for almost 7 hours straight Tuesday night! She had been pretty fussy during the evening, but fell asleep in her car seat around 9:30, once we got home, I just knew she would be up any minute to eat so we left her in her seat. By 11:00 we were ready for bed, but she was still sleeping. Neither one of us wanted to risk waking her up to move her to her crib. So, we put her car seat in her room and left her in there. I woke up at 2:00 positive that she would be up any minute. I waited about 15 minutes then decided to pump. She never stirred. I woke up again around 3:30 and waited for a bit. (Now believe me, I was checking on her, but she is so noisy it's easy to tell she is still breathing!  :) Finally about 4:15 she woke up ready to eat!! Then she woke up again about 7:30! Good Job Ashley! She did pretty good the next night too, she did sleep in her crib that night, hooked up to the apena monitor. She fell asleep around 10:30 and woke up to eat again around 4:30. However, her monitor did go off around 3:15, Nate and I jumped up and ran into her room. She was awake, but I think it was the alarm that woke her up. Thankfully it was a loose connection that made it alarm and not anything with her. I never could find the loose connection, so we unplugged it for the rest of the night. Last night, she was up about every 3 and half to 4 hours to eat. And thankfully her alarm never sounded. It's reassuring to know that even if she is breathing weird and occasionally gasping, she does not actually stop breathing.

Fussy, fussy, fussy

Ashley's demeanor has changed over the last week or 2. She has been much more fussy in the evenings and recently in the mornings too. She has been known to cry for 2-3 hours straight. This change has not been very welcomed into our routine. :)    My preference is to hold her and soothe her, you know make things right. Dad wants to hold her for a minute and then put her down and leave the room to let her cry it out. While I don't enjoy holding her while she screams uncontrollably, I've been a lot stronger than I thought I would be. I can certainly outlast daddy in the comforting/holding/soothing.  We have determined that she is swallowing quite a bit of air when she is eating and that is leading to quite a bit of discomfort and pain for her. So, eventually, even if it takes 20 minutes a burp does come out and things are better for a bit. The good news is that she does really well during the night. She must be relaxed enough that she doesn't get as much air, I don't know. But, she doesn't get fussy during the night, she eats, burps, and goes back to sleep. Let's hope that stays the same.   :)

Misdiagnosis

A quick update on Ashley's billirubin first...We went and had blood drawn the Friday before Christmas and we got there 5 minutes before they closed. So, she took the sample and we were on our way. They called Monday and said they didn't get enough blood from that sample! All that pain and torture for nothing!  So, they needed her to come back in and do another one. Luckily, daddy took her this time. The results came back at 13.4, which was no change! But, the doctor said he wasn't going to test her anymore since it wasn't increasing. I noticed closer to Christmas that her eyes were starting to look better and now they look really good, so we finished that battle to start another...
With all of the extra fussiness and changes in Ashley's breathing and changes in eating habits, we decided a second opinion was needed. Really this is a third opinion. We felt like a pediatrician would serve us better since their specialties are children and that's who they see all day. So, we made an appointment with Dr. Newlin at the Wichita Clinic. I've heard good things about him and was encouraged that he would be a good fit. And I would say he is a good fit! We liked him a lot. He spent a lot of time with us and listened to our concerns and answered our many questions. He thought that it did sound like Tracheomalacia. He did want us to go ahead and get another opinion and make sure that someone else didn't think that something should or should not be done to improve her symptoms. He also wants to do an upper G.I. (where she will drink barium and then we will see how it flows through her body).He scheduled us to see Dr. Regehr at the Wichita clinic. We went in to see him today. We also like him, he spent a good amount of time with us and spent some time looking at Ashley as well. He put a lighted tube in her nose with a camera to get a good look at what is going on and he has determined it is laryngomalacia. This is when the supraglottic larynx (the part above the vocal cords) is tightly curled, with a short band holding the cartilage shield in the front (the epiglottis) tightly to the mobile cartilage in the back of the larynx (the arytenoids). These bands are known as the aryepiglottic folds; they create the movements that opens and closes the vocal cords for phonation. The shortened aryepiglottic folds cause the epiglottis to be furled on itself. This is the well known "omega shaped" epiglottis in laryngomalacia. (or in words I understood...her voice box (which is immature for her age) is collapsing as she is breathing and this obstructs the airway).
Laryngomalacia results in partial airway obstruction, most commonly causing a characteristic high-pitched squeaking noise on inhalation He has not totally ruled out tracheomalacia, but he believes the problem is with her larynx and he also feels it is severe case.
Opinion #1- congestion.
Opinion #2- tracheomalacia
Opinion #3- tracheomalacia
Opinion #4- laryngomalacia...confusing, I know!
We discussed some of her eating problems and so he prescribed some acid reflux medicine to hopefully help her out. It is common to have the reflux issues with laryngolamacia. I also mentioned the wheezing, and then gasping for air that she does while sleeping..it really scares me when she does it because it appears that she is not breathing/getting air. So, we are now set up with an apnea monitor to put on her at night to see how she is breathing during sleep. we are encouraged by these doctors and their knowledge and their interest in getting the right answers and treatment plan. Dr. Regehr says that majority of patients outgrow the condition by age 2, but he also said that if surgery was needed, it would be specialized and would be at Children's Mercy in Kansas City.  We are scheduled for the upper G.I. test next Wednesday and will go back to see Dr. Regehr at the end of next week to discuss the results and our plan of action.

On a lighter note...
Ashley is 6 weeks old and yesterday at Dr. Newlin's office she measured 20.5 inches long and 10lbs 1oz. She is growing and getting bigger, even some of her newborn outfits are too small now! I captured this cute picture the other day when she was smiling...at daddy of course.

First Bottle

We attempted a bottle without much success. But, we haven't really tried very hard. Daddy fed her a bottle about 30 minutes after a feeding, just to introduce it and let her see what it was. We didn't really expect her to drink any/much of it. We tried again one evening, but she had been crying for about an hour and so she was really to upset to get interested and didn't take a substantial amount. We will keep trying and see if we can get her going on these to give mom a break and to get ready for babysitter. And a date night for mom and dad!

Aunt Abby came to visit too after our bottle attempt. She got a gold star for putting Ashley to sleep!  We miss you Ab!