Happy Tuesday, friends!
Last Thursday I shared part 1 of Emily’s birth story. If you missed it, find it here.
Today, I want to finish her story for you all. I have typed and erased and typed and erased on this post more than any post I have ever written. So grateful we all know this has a happy ending!
The second day Emily was in the NICU was probably the worst day. Her lungs kept filling up with air pockets and they were afraid her lungs were going to collapse. The doctors wanted to send her to a level 4 NICU, but Emily Grace was too unstable. They honestly prepared us for the unimaginable and told us they were unsure if Emily Grace would make it through the day/night.
I will never forget hitting my knees right there in that Ronald McDonald house and just crying out to God to please help my baby. Chris and I were at a loss and felt so helpless. We knew God was the only one that could bring her through this!
By the healing powers of God, Emily made it through that night. They told us that morning that her latest x-ray of her lungs actually showed the air pockets in her lungs decreasing also….Praise God!
To help with everything they decided to put her on what’s called an oscillator ventilator. This is a special type of ventilator that shook her little body as it was breathing for her. (Emily was still requiring 100% oxygen and not breathing on her own). I will always remember how tiny she looked in that big ole’ machine.
Slowly, but surely Emily Grace started to make improvements…
Chris and I were overwhelmed with the outpouring of love and messages for Emily that we decided to make a CarePage for Emily Grace to keep everyone updated on. It was easier to make a journal entry on this website so everyone knew at the same time what was going on. (Remember, this was before Facebook or IG really was a thing).
Below, I am sharing everything from Emily’s CarePage account. It is so special to me! Recently, Carepages shut down and I thought I had lost the journal entries forever! Thankfully, through a series of events I was able to find an old email and they sent me a whole PDF file of all our journal entries and comments.
I started it on May 30, the 4th day of her being in the NICU. For privacy of others, I deleted the comments made by friends/family and won’t share those on the blog. Emily Grace was a very loved little girl and had many people around the world praying for her!
Her 3 weeks in the NICU was DEFINITELY a roller coaster ride! From seizures, to liver not working, to biliary atresia, Emily Grace is a fighter.
I am so thankful for God’s healing power on her life. Today, she is almost 11 years old and is full of life and energy. Everyone that meets her can’t help but smile from her spunky personality and love of life.
I know God has BIG plans for her life!
May 30, 2008, 6:30 PM
Emily Grace is doing better and gaining strength. The doctor will be doing a blood
transfusion this afternoon to help Emily since she has lost so much blood.
May 30, 2008, 9:41 PM
Emily is receiving the blood transfusion very well. The doctors have also done an ultrasound of the brain to make sure everything is ok. We should be getting some reports back later today or this evening. So far today has been pretty calm and Emily has remained very stable, which is what the doctors are wanting.
May 31, 2008, 12:00 PM
Emily Grace had an ok night. Her numbers are still going up and down, so the doctors had to increase her oxygen levels and increase her medicine. The doctor will be in this morning and we should have a better update. They already have a few test scheduled for today.
May 31, 2008, 7:44 PM
We got a good report from our doctor today. Emily is still stable and doing good. They are working on lowering her oxygen levels and lowering her medicine intake. She is looking better and better and it looks like she is starting to make some better improvements.
June 1, 2008, 2:43 AM
We have hit another bump in the road with Emily, but we are still trusting God will bring her through. She is showing signs to the doctor that she is starting to have seizures. They did an EEG on her brain to determine if there was brain activity showing these seizures or not. We will not know any results until Monday afternoon, due to the fact that a neurologist has to read the test. They went ahead and put her on medicine for the seizures however. A good note is that she did come off of the oscillator ventilator and is back on the regular ventilator. This means that she is doing more breathing on her own. Another thing this evening is that they gave her a spinal to check for meningitis. We should hear some results in the morning if there was any major warnings, but if not it will then take 3 to 4 days to grow the bacteria to tell if she has it. Please keep her in your prayers! Pray that the EEG comes back with no signs of seizures and also pray for Chris and I. We need more strength every day as we go through this hard time.
June 1, 2008, 10:56 PM
Emily has had a pretty good day today. She is looking good today and is moving around a little. They introduced Emily to a little formula today to get her used to it and the also put in a pick-line. The results from the spinal tap looked good and they did not see anything questionable. We are still waiting to hear from the specialist from St. Louis to find out if she is having seizures or not. We should find something out late tomorrow afternoon.
June 2, 2008, 5:08 PM
I just got done talking with our new doctor. She said that Emily is doing well today. The pulmonary hyper tension is subsiding and she seems to be better from that. Her lungs are still pretty bad and they are hopeful that she will start to make improvements over the next couple of days. Her chest xray was a lot better today. They are also concerned about her adrenal gland and want to make sure that it is working correctly, so they are going to do some test today on it. They are going to be checking her heart tomorrow or Wednesday to make sure that it is gaining strength. We are supposed to find out the results of the seizure test either late this afternoon or in the morning.
June 2, 2008, 10:56 PM
Emily has had a good day today. She has been stable and had no setbacks. We did not get any results back today and they said we should hear something in the morning. We are expecting results from the brain scan and also an ultrasound of her adrenal gland.
I (Chris) finally got to hold Emily. While the nurses were changing her sheets they let me hold her for about 20 minutes.
June 3, 2008, 3:38 PM
Good morning! This is Jennifer. I have kind of been out of the loop for a little while because Elizabeth has been really sick. I went to Dexter to be with her for a couple of days. Please pray for her. She has tonsillitis and has been running a high, high fever. I took her to Dr. Fernando yesterday and we received four different types of antibiotics to help her. Chris and I just went in and seen Emily this morning. She looks like a completely different little girl. She was kicking and squirming around. I also got to give her a pacifier. She is going to be like big sister, Elizabeth, and love that pacifier. 🙂 The doctor arrived while we were in there. She looked Emily over really well and said that she looked good. There are a couple of things planned for today. They are going to take her completely off the ventilator and c-pat. (I think I am saying that right.) She is going to only receive oxygen through the tubes under her nose. Also, they are going to take the lines out of her umbilical cord completely because she is at a risk for infection right now. Her feedings are going good with her formula but after these lines are removed they have to watch and see how she tolerates it. They are also going to work on reducing her hydrocodone and some other medicines. We should know about her EEG and adrenal gland ultrasound this afternoon sometime. I will post an update as soon as we learn more. Also, I will be putting some pictures up of us getting to hold her.
June 3, 2008, 10:04 PM
Emily’s EEG came back normal. NO SEIZURES! Also, her adrenal gland was not damaged at all so they are going to start working on decreasing this medicine to help her body start producing her own. Praise God for all he is doing for us! Continue to pray for our family though please. For Emily’s speedy recovery.
June 4, 2008, 3:37 AM
Chris and I just wanted to take this time to thank each and everyone of you for all of your prayers and kind words. God is truly an amazing God. We have kind of been in a “whirlwind” this past week. However, looking back at everything now, God has brought Emily through so much. I do not think we would be where we are today without all of your prayers and fasting. Chris and I both believe Emily Grace is going to be just fine. She is our little miracle baby. Please continue to remember us in your prayers that every day we will continue to get good news from the doctors and that we will be home with our little one very, very soon. 🙂
June 4, 2008, 7:26 PM
Today has been another great day with our beautiful little girl, Emily. They are going to take her out of her chamber and put her into a normal crib. She is still on the oxygen under her nose, but they tell us she is ready to handle her own temperature and be able to be in that crib. Also today they did another ultrasound on her heart to make sure it is still gaining strength and pumping correctly. They are also going to do an ultrasound of her liver to make sure it is functioning correctly. They were a little worried about her levels so they just wanted to make sure her liver was working normal. We will know the results from those tomorrow
sometime. Another thing we found out today is that Emily loves her formula! They have had to increase the amount they were giving her today because she was not getting satisfied. She is going to be a little pig.
June 5, 2008, 4:49 PM
Emily has been doing good this morning. The ultrasounds both came back normal and everything looked good to the doctors. Today, they are going to continue and work on her oxygen levels and keep feeding her more. They are going to move her feeding tube to her nose so that we can try and get her used to a pacifier. All of the doctors and nurses are so amazed at how well she is doing. We know that the prayers that everyone has been saying has truly made a huge difference and there is no way that we could thank everyone enough.
June 6, 2008, 2:50 AM
Chris and I just got done tucking Emily in for the night. I am amazed still at how God is working through her. We uploaded some new pictures of her and you will notice that she has no more oxygen! The doctors are amazed at how well she is keeping her own oxygen and saturation levels up. Also, they moved her feeding tube out of her mouth and put it into her nose. She was able to drink 27 out of 40 cc’s of her formula from a bottle this afternoon. However, at 9:00 she only drank 7 cc’s for me. She was tired, so they just gave her the rest of it through her feeding tube. Please continue to pray that she will be a fast learner with the bottle and drink all of her bottle at one feeding. I (Jennifer) went to Dexter again this afternoon to be with Elizabeth. She is doing better, but still not 100%. I am anxious to get back on our normal routine with her and for her to see her little sister. I will update again in the morning after talking with the doctor. Check out our new pics of our precious little girl. 🙂
June 6, 2008, 7:41 PM
Today has been a good day. Emily is so precious and spoiled rotten already. I have held her practically all day long. She is loving her bottles. She has been drinking all of her formula from bottles since last night and all day today. I thank God for this because they told us it would be a struggle and so far Emily has done wonderful! The doctors are a little concerned about her liver levels still. One level continues to be pretty high. They are going to check it again in the morning and see if it has increased any. Please pray specifically that it has not increased and in fact dropped and went down to normal. They haven’t really told us what would happen if it continues to increase, but we are not going to accept it and we are just
going to trust that it will be fine in the morning. Today is Chris’ birthday so Elizabeth is coming to see us tonight and we are going to go out to eat with her. I am glad. Again, thank you for all of the prayers and nice messages. It is very encouraging to read that you all are praying for us and thinking of us constantly.
June 7, 2008, 6:52 PM
Emily Grace is still doing well. The doctor told us today that her liver level was exactly the same as it was yesterday. She was glad that it had not increased. She said hopefully it will stay the same and then start to decrease. They are going to check it again on Monday morning. Emily gets her last dosages of all of her antibiotics at 4:00 in the morning. Then they are going to take her pick-line out of her foot. The doctor said now we just need to focus on her feedings. She is still doing pretty well with the bottles, but sometimes won’t eat the whole bottle by herself. She has to go a whole day without using her feeding tube at all, so that is what we are striving for. Hopefully soon we will be home with her.
June 8, 2008, 11:18 PM
I am very thankful that I am actually running out of things to write about. 🙂 Emily is doing very well. The only thing the doctor said she was writing on her charts now was her level of cuteness. Then she said it keeps getting higher and higher every day. That made Chris and me laugh. Emily has drank all of her feedings from her bottles all day today and so they are hopefully going to take her feeding tube out in the morning. If they do this, we are on our way to coming home. The doctor talked like this morning it might be Tuesday or Wednesday. That is what we are praying for so bad. Chris and I are both so weary and tired and just want
to be home. Also in the morning they are going to check Emily’s liver level again. We are praying it has decreased or stayed the same again.
Like I said earlier, there is not really a lot to talk about anymore. Praise God. Elizabeth is much, much better and now that we have been staying at home at night she is loving being home with us and sleeping in her own big girl bed.
Tomorrow I (Jennifer) have to attend a bunch of CPR classes for Emily before we can even think about going home, so I might not get to update the page until later evening. Again, thank you everyone for praying for our little girl.
June 9, 2008, 11:34 PM
Emily had a great day today. She has no feeding tube today and has done wonderfully! She drank all of her bottles for me today. The doctor said her liver count was a little high again, so they are going to recheck it in the morning. If it is still high, they are going to do another ultrasound. However, the doctor says this should not cause us to have to stay in the hospital for longer. We are praying that we get out tomorrow evening. Please everyone pray that everything goes according to plan and we can bring our baby girl home. They also tried to do a MRI on Emily today and she didn’t cooperate very well. So they are going to sedate her and do another one in the morning. All of these things that the doctor told us about today
are things that our pediatrician, Dr. Fernando, can take care of and keep an eye on, especially her liver counts. I know the end is near. I am so ready for Elizabeth to see her little sister. Please keep watching this page and I will let you know if we get to come home or not and I will post pictures of Elizabeth and Emily as soon as I can.
June 10, 2008, 11:01 PM
Today we received some bad news about Emily. Her liver counts were once again really high this morning, so they did another abdominal ultrasound. Through that ultrasound they found that her gall bladder is abnormal which is causing all of the problems with her liver. Because of this they are putting her on a type of medicine and she is going to have this special scan done on her gall bladder on Friday. The medicine they are putting her on is because it will help her gall bladder and also she has to be on it for three days to do this scan. We were very upset at this news because we honestly thought we would probably get to go home today because she had been doing so well. However, I am not going to get discouraged and I am thankful they found the reason her liver was showing these bad levels. Hopefully this scan will let the doctors know how to treat her gall bladder and what needs to be done from there. Chris and I are both getting very tired though through all of this. Please continue to pray that this scan will show nothing abnormal again and that this medicine is going to fix her gall bladder and make it start producing the bile it needs to produce.
June 11, 2008, 8:50 PM
I did not learn hardly anything new today with Emily. The doctor did go into a little more detail about the gall bladder thing. This HIDA scan on Friday will let us know how to treat Emily. If it is biliary atresia, or where there is no bile ducts connecting her gall bladder to liver, then surgery would be immediate at Children’s Hospital in St. Louis. Or the scan will show that everything is formed correctly and normal. We are praying hard that this is the case. If everything looks good we would have to follow up with a specialist and probably get Emily on a different diet to get these bilirubin levels down. Please pray together with Chris and I that NO SURGERY is needed and that everything in little Emily is formed perfect and wholy. I know God has brought her this far for a reason. The hard part now is to just wait until Friday and get the scan done. We do not have a specific time on Friday when it will be done, but we should know results right away. Thanks again for your prayers and kind words. It means a lot to know you all are still behind us and especially little Emily.
June 12, 2008, 9:28 PM
Today Chris and I learned that Emily’s HIDA Scan will be done at 10:00 in the morning. I am asking everyone to please take one minute or how ever long you are allowed to tomorrow at this time and say a prayer for Emily. Pray that they can read this scan well and the dye shows up perfectly so they can see all they need to see. We are praying that everything is formed correctly and that Emily is going to start correcting these bilirubin levels. We should know the results in the afternoon. I also took a lot of pictures of Emily today that I will try to upload later at home tonight.
June 13, 2008, 7:08 PM
The dye did not work for the HIDA scan this morning. So Emily is having another scan done at 4:00 this afternoon. However, the staff here at St. Francis has reached their capacity of dealing with this issue since they are only a level three NICU. Since the gall bladder did not show up during this scan, the doctor here is probably thinking that it is this atresia. So it looks like no matter what we are going to be going to St. Louis Children’s Hospital for Emily to have a liver biopsy. The good thing is though that we might get to bring Emily home tomorrow if the specialist up at Children’s says it is okay. Then we would just have an appointment for Emily to go up to Children’s sometime next week. Of course this is not the news that Chris and I wanted to hear. However, I am thankful that although this has nothing to do with Emily’s pulmonary hypertension that she had, that the doctors did find this now instead of later on. We know God will take care of Emily and that she is going to be just fine. Tonight we probably won’t find out anything new, but hopefully in the morning we will have everything set up for Children’s hospital and until that time we get to bring Emily home.
Please still remember Emily in your prayers and also our families.
June 15, 2008, 3:12 PM
We got to bring Emily home from St. Francis yesterday. We are so thankful because we can have some sense of normalcy. We have to take Emily up to Children’s Hospital on Wednesday the 18th to meet with a liver specialist. From there we will learn more information and come up with a plan of what to do for Emily.
She is such a sweet baby. Big sister Elizabeth loves her. She likes to poke on her eyes and steal her pacifier, but other than that she has been wonderful helping me with Emily. Emily slept great last night also. Only got up twice to eat.
Check out the new pictures I posted of her finally at her home.
Please continue to remember us in your prayers and I will post Wednesday what the specialist tells us.
June 19, 2008, 3:40 PM
Chris and I are once again amazed at how good God is. We went and met with Dr. Shepherd up at Children’s Hospital yesterday. After closely looking at Emily and reading her 400 page medical records from St. Francis, he honestly feels that this is NOT biliary atresia. Dr.Shepherd feels that because of how sick Emily was and all the different medicines she was on, is why her liver had this bilirubin problem. He says with time it will correct itself.
We had to get blood work done today and the plan of action is that every week for a month I will take Emily to our pediatrician at Poplar Bluff, Dr. Fernando. He will do blood work there and get in touch with Dr. Shepherd and they will both keep a close watch on her bilirubin levels.
Chris and I are so thankful of this news. We are going to just trust that each week Emily’s bilirubin level will decrease. Thank you all so much for your prayers and concerns. I will probably not update this page anymore because we are not dealing with St. Francis anymore. If anyone wants to email me to see how she is doing feel free to.
I want to leave everyone with a word I saw on a t-shirt at the hospital. It is the word PUSH and it simply means PRAY UNTIL SOMETHING HAPPENS. God is so good and there truly is power in prayer. Every time Chris and I look at Emily we know she is a miracle and we are reminded of how awesome God is.