|At Brookwood Hospital - 2 days old|
|With Big Sister!|
While we were at the hospital, Lucy wasn't holding her temperature well. We didn't worry. She was having reflux episodes of amniotic fluid, just like Ella had, that scared us to death. We just called the nursery and had them watch her so we could get some sleep. We didn't worry. She was getting a little jaundiced as we were discharged, but we didn't worry, we had been through jaundice before. There was no trial that could test our faith. He had prepared us. Two Pediatricians came by to check her out. Both of them commented that they could feel collarbones, and that she looked totally normal. We know....but thank you. We rejoiced! I look back on those prior months of worry during my pregnancy almost fondly now. We had no idea what was ahead, but we trusted in the ONE preparing the way. If I had known what lay ahead in that 1st month maybe I would have behaved differently. Thank you Lord, for all of the ways you reveal yourself and your perfect timing! You only give us what we need and You protect us from what we don't.
|First day home - with MeeMaw|
|This is the work of "Big Sister" - We are going to have to keep a close eye her :)|
On Lucy's 4th day, we took her to the Dr. for her 1st checkup. She had lost down to 5lbs 11oz. Her bilirubin level when we left the hospital was 10.5. It was up to 14.5 on this day. Our Pediatrician suggested that we supplement with formula for the next 24 hours to flush out the bilirubin. She also noted that she couldn't see anything abnormal just by examination and that Lucy looked perfectly healthy. The next day we returned for a Bili recheck. It was 14.7, basically the same, so they didn't feel like it would go much higher. They didn't put her in photo therapy and they didn't offer to recheck her levels in a couple of days. At the time, I was only concerned about her skeleton. I trusted the Dr. A decision I regret. We called the after-hours nurse when she was 10 days old, because she didn't seem to be getting any better. She was sleeping all the time and her skin was still very yellow. They told us that it could take up to a month for breast-fed babies to get rid of jaundice and to just wait and bring her in for her 2 week check-up.
|At Lucy's 4 day check-up|
|Lucy's 4 day check-up|
|You can see how yellow she was - Oct. 22, 2011|
It didn't register with us then that when Lucy was awake she cried most of the time, because she wasn't awake very much. (Even as I write this the Lord is revealing Himself to me!! Thank you Lord for Jaundice!! I know that sounds crazy but it will make sense in a minute.) This started a chain of events that may have ultimately saved Lucy's life.
|What a good big sister!! Drying Lucy during her 1st bath!|
|Ella Grace is so excited to be a Big Sister!|
With everything going on we had forgotten to get Ella Grace a Halloween costume, so Jason searched everywhere 4 days before Halloween and finally decided on a Strawberry Shortcake costume. Thankfully, she loved it! That day, Lucy rolled over, from belly to back. (10 days old, the same age Ella Grace rolled over. She didn't do it again for quite awhile though.)
|Halloween Party at Daycare - Oct. 28th|
|Daddy and Lucy|
Week 2 - OK....she was having reflux...not after she ate, right before she ate. Sounds mixed up right? She was getting dehydrated, for several reasons:
1.) because she was sleeping so much from the jaundice,
2.) my milk supply was suffering because of infrequent feedings, and
3.) her stomach acid was building up when it was empty.
(We didn't know any of this at the time.)
When you think of newborn reflux you think of projectile vomiting right? That's how it happened with Ella Grace. With Lucy, it was only stomach acid so it was clear and thick and didn't come out of her mouth. The 1st time it happened was when we were getting ready for bed on Thursday, October 27th. Her eyes welled up with tears, she would shake and arch her back. She couldn't get a breath. She was choking. You would have thought by looking at her that she was having a seizure. The Lord made sure we were right there when it happened. I screamed at her to breathe, flipped her over and suctioned her out! It was terrifying. Then afterwards, she was lifeless and completely "zoned out" for a while. I would either hold her while she slept or prop her up in the boppy pillow in the bed between Jason and I.
She was fine the next day so I thought that the episode had been a one time occurance. Around 5pm that afternoon however, she had another episode. Jason arrived home from work. Lucy started continually having episodes. So often that she could hardly catch her breath in between. She would arch her back and turn dark purple and you could tell she couldn't breathe, then once I got her suctioned, her eyes would roll back in her head and she would be "vacant". I would snap my fingers or clap in front of her face and she wouldn't even flinch. Jason took Ella Grace over to our neighbor's house and she offered to keep Ella for the night. While he was gone, I called the after-hours answering service for our pediatricians office. Whenever you do that, you leave a message and a nurse calls you back. It was taking an eternity! Finally, a nurse called. She thought that it was possible that Lucy was having seizures. She told me to hang up and call 911 and let the paramedics check her out. The next few hours went by like a whirlwind.
The ambulance arrived quickly. Jason was frantically packing bags for us, for Lucy, and for Ella. The Paramedics came in and started checking Lucy. They decided that we need to go to the hospital. We tried to put Lucy in her car seat but she couldn't tolerate the position without having an "episode". We would have to be transported by ambulance So, they put me on a stretcher and I held Lucy.
When we arrived at Children's hospital, we were quickly escorted to a room. They kept trying to reproduce the choking episode so they could see it first hand. But by then I had fed her. They did an EKG, drew blood, and put in an IV. They had to stick her multiple times and finally left two lines in her, in case one failed. They ordered a chest x-ray to check for pneumonia.
|EKG in the ER - Oct. 28, 2011|
|Multiple IV's Oct. 29, 2011|
The ER Dr. came by to speak with us about the x-rays and lab results. She said that Lucy didn't have pneumonia but her ribs "looked funny." Also, according to her labs, she was dehydrated and her bilirubin was now 18.2. She was diagnosed with Breast-milk jaundice, this type of jaundice shows up during the second week of life, and peaks around the tenth day or later. It affects a very small percentage of infants (between 2% and 3%) It is caused by factors in the breast milk that block certain proteins in the liver that break down bilirubin. She was also diagnosed with dehydration, and reflux with possible Sandifer's Syndrome. They admitted us to rehydrate her basically.
Symptoms of Sandifer's SyndromeWhile the symptoms of Sandifer's can be scary for parents to watch, the condition is generally not serious, and will often disappear once the reflux is effectively treated. Symptoms are sometimes mistaken for infantile seizures. Symptoms often occur immediately following a feeding. They include:
- Arching of the back
- Sudden rotation of the head and neck to one side, sometimes with the legs rotated to the opposite side
- Gurgling noises
- Possible abnormal eye movements
- Possible vomiting
I've watched ALL of the videos on YouTube of Sandifer's and NOTHING posted there comes close to what we went through!
We were moved to the special care unit, which is a large room with lots of patients in it, seperated by privacy curtains. They close visiting hours at shift change and KICK YOU OUT for several hours. It was horrible. They gave her fluids and supplemented my breast milk with thickened formula. They had me pump my breast milk so they would know how much she was getting. I would run downstairs to the lactation room, pump, run back upstairs, feed her, sit with her for a few minutes, then start the process all over. There is no where for parents to sleep or bathe for that matter. Lucy ate every 3 hours. I wasn't eating or drinking or sleeping enough. So it should come as no surprise when I tell you, my milk dried up. I was so angry! It seemed like we were there forever, but it was only 2 days. I cant imagine being a parent of a child that is on that unit for any length of time! Finally, we were moved to our own room.
|FINALLY! In our own room! Oct. 31, 2011|
|Feeling much better!! Oct. 31, 2011|
On Monday, Halloween, a team of Dr.'s came to our room and wanted to get a skeletal survey done of Lucy. That's when they x-ray every bone in your body. This request was based on the evidence of a skeletal dysplasia during my pregnancy and the "funny looking ribs" when we were admitted. Usually, it consists of around 20 x-rays, if they don't screw up and have to repeat some. She had already had 4 x-rays when we were admitted so I negotiated the radiologist down to around 13. The films were reviewed by our "team" and they came to talk to us. She had the flaring of her long bones that we knew about, but she also had widened and "cupped" ribs, that we didn't know about. It appeared as though each bone in her body had an unusual shape. The Dr.'s didn't know the significance of this but didn't feel that it was a metabolic problem. They suggested that we follow up with genetics for diagnosis of a skeletal dysplasia and since Lucy was adequately rehydrated and her bilirubin had come down to 10.5, they discharged us. She weighed 6lb 1oz.
We saw our pediatrician the next day and she put her on Zantac for her reflux.
|Back at home..."Hi Nonnie!" Nov. 1, 2011|
|Slye girls reading a book Nov.1, 2011|
|Nov. 2 - Lucy's 1st sickness, a stomach virus, 16days old|
|Nov. 6 2011, feeling much better!|
|Nov. 11, 2011 - showing mommy how she could be a good big sister.|
|Nov. 11, 2011 - Propped up sleeping on the boppy pillow during mom's garage sale.|
|Nov. 12, 2011 - Visiting Poppy, Cici, and cousins, Emma and Cooper.|
|Nov. 13, 2011|
OK, that situation was really bad, but if it hadn't been we wouldn't have been admitted to the hospital and never would have had any x-rays taken. (More to come in month 2!)
|Nov. 15, 2011|
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|Nov. 17th 2011 - 1 month old|