Things are going great. We were moved to the floor yesterday. He left the nicu without any fluids going into him. He still has his picc line but that is coming out tonight. He is nursing on demand and doing great. They check his sugars right before he eats. He was on a little insulin in the nicu which is normal after surgery. If he has two consecutive sugars over 250 they start him on a little insulin. He hasn't had any over that. We just are waiting to see how things go. He will eat for 5 days then do a fast. We are looking at the fast finishing on Sunday then seeing what he will need from the fast results. It is so nice and comforting to know he is in such good hands. The Drs and nurses are so knowledgeable with hyperinsulinism or "H.I." as they call it. He has been so happy since he got up here. It is almost like he knows the end is in sight. We hope this week goes by fast and that things continue to go well.
Liam had gone 11 days without eating milk. He has been on a yellow fluid, which is referred to as his Gatorade. It has all his vitamins and nutrients. He has another one that is white, and that one is his fat. Before they could give him breast milk, his digestive system had to be working fully. He was able to get 10 cc's of breast milk with a bottle two days ago. They did that every 3 hours for about 24 hours. He tolerated it well. Who wouldn't after not eating for that long. They moved him up to 1 ounce by bottle and did that for 24 hours. He did well, so they moved him to 2 ounces about three hours ago. I was talking to the nurse about possibly nursing him. She talked to the ones calling the shots, and they said I could. They just don't want him to get too much. They will weigh him before and after just to see what he got. Their whole thing is to just make sure he is tolerating what he is getting and they don't want to do too much. He has been excited to eat for a week now. He would root around every time I held him. There were a couple times I almost had to stop holding him cause he was wanting to eat. I am excited to feed him. That is what will get us home. He has to be eating just from me so they can see what his sugars are going to do. Things are going well. He is a happy boy. He is starting to smile a lot and make noises every once in awhile. Danny and I are hopeful that we can see the light at the end of the tunnel. We are so anxious to see the girls and get home. We are so blessed with ALL we have. Good family, neighbors, friends, and a great ward. We count our blessings every day and know our Father in Heaven is mindful of us and continues to bless us. We have even been blessed by the wonderful people of the Philadelphia 1st ward. Where would we be without the gospel? I am sooo thankful for my testimony and know that is what gets me by.
This is Kara. I have been terrible at keeping up with posting pictures. I guess I have an excuse since I have eight children to bathe and feed every day now. I'm pretty sure these pictures are in reverse order. Mamie finally made it Philadephia, so now Liam has both grandmas to dote on him. He's doing great. I know Danny and Rachel have finally been able to get out and see the sights in Philly.
One of the pictures is of a quilt in the waiting room of the NICU. The other picture is of an Amish bakery. They said they went there to get some food and when the owner found out why they were in Philadelphia, he told them the order was on him. They were so touched by his and everyone else's goodwill. They also said it was the most delicious food they've ever partaken of.
Thanks again for everyone out there praying on his behalf. We appreciate you.
Breathing tube has been removed. It may need to go back in if he doesn't stop holding his breath. Liam is highly uncomfortable.
Aren't kisses supposed to heal all boo boos?
Liam is in bed 28 of the Children's Hospital of Philadelphia's NICU.
Sometimes the unexpected happens in this life. Whether it's by someone's fault or no one's fault, we all encounter difficult and seemingly unfair trials. But we can all be strengthened by them especially if we rely on our Heavenly Father. Here's another amazing example of a man who lost everything, but found strength to rise above it.
We are sitting here in the nicu the day after surgery. Yesterday was a long day. His surgery was scheduled for 12:30. They came at 12:25 to pick him up. We walked down to the pre-op area and waited. They came about an hour later to take him back. His tiny little body looked even tinier on the big bed. He is a big boy but he is still a little baby. We headed to the waiting room. We had a nurse come in every so often to give is an update. Every time the door opened we would look at the door to see if it was her. She didn't have any detailed information, just told us each time that everything was going okay. The surgery didn't start until 2:48. We eagerly awaited the end. The preliminary tests from Friday showed that it was focal which was just a small area producing too much. The dr and surgeon both thought it looked focal. A radiologist had looked at the pet scan and thought it looked difuse which is spead out. We knew there was a chance it could go either way, but we got our hopes up when we were told by the dr that he still thought it was focal. He had also told us that when the scan shows focal it comes back focal. That nurse pulled us into a different room and said dr adzick was just finishing up and he would be in to talk to us. This was about 5:00. He came in about 15 minutes later. I was nervous, had butterflies, and was very anxious. He came in and sat down and told us it went well but that it was difuse and he had to remove 90% of the pancreas. Talk about taking the wind out of our sails. He said he was disppponted as he could tell that we were as well. They had taken biopsies of each part of the pancreas and saw that they were filled with the cells producing too much insulin. We were surprised, disappointed, and relieved all at once. With difuse disease there are three outcomes. One, he will be totally fine. Two he will be treated with medication for I don't know how long. Three he will become type 1 diabetic sometime down the road. We won't know exactly what it will all turn out to be for a bit. As the dr said as part of his parting words "it is what it is" which is so true. We now at least know and can continue on. We headed to the nicu waiting room until it was time to see him. We were able to finally go back after what seemed like an eternity since we has seen him. We walked up to his crib and that is when I lost it. I had just witnessed the saddest thing in my life. My tiny little boy laying there with a breathing tube down his throat, a tube in his nose, a tube coming directly out of his tummy, and the steri strip on top of his incision. I burried my head and sobbed for a few moments. He lay there completely helpless. His mouth was wide open and you could tell that he was crying but no noise was coming out because of the ventilator down his throat. He was in a lot of pain. My heart was broken. I am glad my dear husband was by my side to strengthen me as he has every step of the way. We just sat by his side and held his little hand. He would just grab on and not let go. It's amazing to know that he knows us and was clinging to us for comfort. A couple hours went by and they were able to pull out the ventilator and switch over to oxygen. With all the medication in him it makes it harder to breathe so it is all pre-cautionary. He has all sorts of tubes and fluids going into him. He had an epidural in him which was helping the pain. They took that out this morning because the dressing was coming off so they didn't want to risk infection. His oxygen came off as well. He moans and makes sad little raspy cries while just laying there. It is sad. He is on morphine so hopefully that will help him. He also has no food either. He is on the sugar water but it will be nice for him to get fed through his picc line. We are so so so blessed to be here. All the drs and everyone caring for him are so great. They know what they are doing which is so comforting. Danny and I have felt and known from the start that all will be well. We are so blessed to have the Holy Ghost to comfort us. Yesterday I went in to pump while we were waiting to see him in the nicu. I started praying and felt so comforted. I know that Heavenly Father is aware of us and what we are going through. This has been the hardest thing we have ever experienced. There are those frustrating days where I just want it to be over but I am always blessed to know that all will be well. We are hoping for a quick week. I am not able to nurse him while he is in here until his body has shown that it's ready. I am hopeful it will be sooner than later. And again we are so thankful for the prayers and fasting. We will be here for 3 more weeks at the most. We are hopeful that it will be quick and short. We are thankful for our family who is helping out with the girls.
It's Kara again. This is the exact email that I just received from Children's Hospital of Philadelphia:
Dr. Adzick - King of Surgeons, The Guru, Top Notch, #1, etc.
Liam is looking really relaxed in this picture. Dr. Adzick came in to see Liam for the first time today. By all accounts he's very shy, quiet, and handsome (my mom has a slight crush, I think). It's hard to believe that in less than 24 hours, we will know a pretty definitive prognosis for this little man. Reports from Philly include Danny, Rachel, Liam and Grandma Reilly just chillin' at the hospital. They really haven't done much sightseeing unless they were able to get out on Saturday for a bit. Rachel has set world records for producing pumped milk and has quite the stockpile built up. She could singlehandedly feed all the babies at CHOP. Way to go, Rachel, we're so proud of you! They all seem to be in good spirits and anxious to get the show on the road.
They visited the NICU today where Liam will reside for about a week after surgery. It's a very state-of-the-art facility with two babies watched at all times by one nurse that monitors everything right there with a computer. She told them in no uncertain terms that visits should be short and sweet (that means Danny & Rachel, too). Only two people will be permitted in at a time, and the nurse, who called herself the "enforcer", will make sure they don't stay too long. Rachel will be unable to nurse him for a week, so they mainly want Liam relaxed and not stressed.
I received a recording of Liam snoring, but couldn't figure out how to put that on this blog. So if you want to hear it, please go to my blog here. It's absolutely darling.
As always, thanks for the prayers. They have been heard. I think that perhaps Niamh, Ryan & Bergin need a few special prayers sent their way. Poor little things are experiencing a shock to their systems as they have been uprooted from their normal routine. Overall, they're doing great, though.
All right, that's it for now. The surgery will be sometime tomorrow afternoon Philadelphia time. We should have a report by tomorrow night.
EDITING NOTE: My dad took offense that I mentioned my mom had a small crush on the doctor. He pointed out that she has a crush on all doctors. And Danny mentioned that he probably has a bigger crush on the doctor than my mom.
This is Kara, again. I've been getting quite a few pictures, so I thought I had better post them. I should leave the updating to Rachel, but Liam's PET scan at the Children's Hospital of Philadelphia was yesterday, and the preliminary reports give us hope that he has focal lesions in the head and neck of the pancreas. They will know more on Monday when the expert sits down with them. While we don't know for sure if that's the case, it's promising.
From these pictures, I gather that the I.V.'s are out of his feet and he's down to one picc line. That's wonderful.
He sees these faces everyday in his crib.
I personally love the posters at the hospital.
I wanted to add another quick inspirational video on hope, faith and prayers.
We are here at Children's Hospital of Philadelphia sitting in the room. Yesterday was a big day for Liam. He had to get a new picc line put in. His picc line from primary's was not central which means it wasn't all the way in where it was supposed to be. They put a picc line in that has two ports. One port through one vein and one through another. One has the sugar water flowing through it and the other has his medication. They don't like to put two fluids through one port. They kept his other line in just in case they needed it for an iv. They had placed iv's in each feet as well. So he had some sort of wire coming out of each extremity. They took one iv out of one foot and will probably take the original picc out tomorrow after his big scan. They have put these things around his new picc line and the iv in his foot called no no's. The first night we were here an Asian lady came in to place a new iv in his foot. After she finished she told us to put on a no no. We really couldn't understand her and we asked her what she was saying and in her cute little Asian voice she said "no no like no no touch". It was cute. We still didn't understand what she was talking about. So he has these braces on one arm and one leg. They also have these cute little soft gowns for the babies to wear. The hospital had to make sure they were treating him for hyperinsulinism so they had to take him off his fluids and medication so his sugars would drop and they could get some blood to be certain it was low. They then gave him a shot of the medication to make sure his sugar came up. It came up quick. To do the picc line and find out it was hyperinsulinism he had to be fasting. He ate at 5 am and one ounce at 11 am then not again until 6pm. He was excited to eat. I am pretty sure he knows his mama. He is such a sweet little boy. Tomorrow is the big test. He will be put out completely. The scan will be about 2 hours from start to finish. We hope to get results tomorrow night. If not they won't be read until mon. They said they are usually back by that night. We are anxious to find out. He has had a quiet day today just eating and sleeping. I will update about his scan as soon as I hear any results. I am glad he is a baby and doesn't know any different with all that is being done to him. We consider it a true blessing to be here. We know that Heavenly Father has truly been aware of us. The nurses and staff know exactly what they are dealing with. They have worked with babies like this on a weekly basis. We have faith that all will be well with him.
Hello, everyone, this is Kara, Danny's sister, again. I will be the one posting the pictures they send me via their phones. I also wanted to include a personal note from my parents and our family. We are all so grateful for the faith and prayers offered on behalf of Liam, Danny & Rachel. We know there are many of you out there that have knelt down to ask Heavenly Father for blessings to be bestowed on this beautiful little family. Thank you from the bottom of our hearts, and may God bless you, too.
I feel prompted to share a beautiful message about hope and love. Many of you may have already seen it, but we can all be reminded that although there are obstacles in this life, Heavenly Father is still mindful of each of us specifically, and He will love us through them.
We all made it here to Philadelphia. Danny came straight to the hosital with Liam. I checked in to the hotel then rode the subway to the hospital. Liam was excited to eat. We got him all settled and the nurses got him all hooked up then we stayed with him for a little bit. We headed back to look for some food. We got back to the hotel and asked how much it was to park and the guy told us $42 a night. We didn't believe him but he was telling the truth. Danny's mom was getting in at 11:30 pm and she was going to pick up the rental car. Luckily she had called Dennis who had told her how much it was for parking. She cancelled the rental car. Today we got passes that we can use for the train, subway, and busses. I can't believe how much parking is. I feel bad for people who have to pay that much. We met liam's team of dr's who will over him. His dr and the others are very nice. They answered questions and made sure we knew what the plan was. My good friend made a darling picture of the girls to put in liam's crib. When the nurse saw the picture of the girls she said she had already seen them. Since I had mentioned children's hospital of Philadelphia (chop) it automatically sends the pr people of chop an alert that they are mentioned on someone's blog, if it is not private. It was funny. So hello to the pr person who may be looking at this. I think they do it for tracking purposes. They have to redo his picc line tomorrow. We are kind of just playing the waiting game until his big test and surgery next wed. His test will be on fri. The test will be fri at 1:00. It could take a couple hours. We may find out the results fri night and sat morn for sure. We are thankful to be here where everyone has worked with a baby with his condition. Everyone here has been very nice and helpful. Thanks for the love, support, and prayers. We are grateful to everyone. A special thanks to our good friend who got us our hotel at the marriott residence inn. We appreciate his kindness.
I am sitting here at primary childrens hospital typing on the iPod so this will be a short quick update because it is hard to type on this little thing. We are still going to philadelphia but we won't leave until monday morning. The children's hospital of Philadelphia (chop) is sending their plane. Danny is going to ride with Liam and I am taking a commercial flight. We are excited to get there and see what is going on. They have a test they do on the pancreas which will show the cells and if they are spread throughout or centralized. He will have to have surgery to take out part (if centralized) or the majority (if spread). This test will determine his outcome. 95% of centralized cells that are removed result in a cure which is what we are praying for because it is the best case scenario. If the cells are spread throughout they have to remove the majority of his pancreas which would most likely cause type 1 diabetes later on down the road. So we are anxious to get there and have the scan done. This hospital and one dr there is the only place in the nation that does this operation. This dr is on vacation until aug 16 and he will not let any other dr operate on a baby. That is good to know that he will be in the best hands. We don't know when the surgery will be. We have been told that the post op is 4-7 days. In the meantime he is still enjoying all the sugar water being pumped in. He is doing so good. His sugar levels are great. We are getting taken care of. This is a great place. We have loved our dr. We ran into elder rasband of the seventy the other night. He has a grandson in here. He was very interested in Liam and wanted to know how to spell his name so they could pray for him and we could pray for their grandson. It was a very spiritual conversation. We have been and continue to be blessed. We have had so many people do so many things for us. We are truly truly blessed and we thank all our family and friends for all they have done and will do in the next few weeks. Our heavenly father is so aware of us and our family at this time. We love him dearly. I will try to update more regularly. Liam is a little sweetheart and we are so blessed to have him. And I guess it isn't as short as I thought it would be. This thing is easier to type on than I thought.
Baby Liam and his cousin Piper on July 27th at Danny and Rachel's home.
Rachel's blog has been hijacked again. This time by Rachel's sister, Jill.
We wanted to give everyone an update on Baby Liam.
He was sent to Primary Children's hospital last Wednesday after he was sent home and still had low blood sugars. After some more testing at Primary's, they have found that there are more tests that need to be run to determine just what is going on. These tests can only be done at three different hospitals in the United States. Primary Children's has worked with doctors at the Children's Hospital of Philadelphia so that is where Liam, Danny and Rachel will be going.
Liam has a Picc line which is giving him fluids and medication to regulate his sugars. Due to this, he will be medically transferred.
The tests that will be run will determine what is going on inside the pancreas. There are cells inside the pancreas producing excess insulin. The test will see if the cells are localized to one spot or if they are spread throughout the pancreas. Either way will result in surgery whether it is to remove the centralized cells or to remove most of the pancreas.
Rachel and Danny's spirits are high and they are very confident in their doctors. The girls are being taken care of by both sets of parents and are doing great. Your prayers and love are very appreciated.