Day 34

Liam was worked up all day today! His feedings were increasing nicely until he started throwing up. He only had two episodes but it is a very hard sight to see. They discontinued his feedings for now to see if he would calm down. They ordered an X-ray and he had an excessive amount of gas in his stomach. Poor thing had a belly ache. He had multiple stools today which helped but he was uncomfortable all day. He is usually a calm soul but today he was very agitated. I hate seeing him this way. They gave him sedation meds to calm him and let him sleep. His chest tube drainage is still significant output. With his feeds it seems that it has increased and changed substance. Which is want we don't want. Tomorrow is a big day. He is having his 2-d echo, an ultrasound that is rechecking the pulmonary vein and its gradient. After this test the physicians and his heart surgeon will make a decision if Liam is to return to the operating room. His nurse practitioner said this morning. Liam has done rather well to this point, now he is stuck. Cannot wean on vent and still has chest tube drainage. Both correlating to his lungs. We will find put tomorrow what the plans will be. Please pray that it all goes well.

Day 33

Quiet day for Liam... The only change made today was they discontinued his sprinting. He is not where we want him to be on his vent. My heart breaks everyday when I see the tube. My heart breaks knowing I cannot help him. Dear God, please take care of my child. Give him the strength to work hard on getting off the ventilator. Carry him through this. We all know he is a fighter and we will get through this but it's time to excel my little man. The nurse said it best today- heart patients take two steps forward then one step back. New day/new challenge. We were lucky to have so many visitors this weekend. Grandma and Grandpa Mirone came back this weekend, Aunt Dana, Uncle Jeff and Bryson came too. Aunt Jamie and Uncle Nate couldn't stay away either. Everyone needs their Liam fix. Gotta love our little miracle. Bath time tonight was so fun. He is a total joy. God Bless you Liam. We love you so much. Lets do this. GAME ON......

Day 32

32 days and counting. Time has gone so fast but so slow. As the days go on. I become more and more homesick. I am praying for the day when we get to go home. We have met some amazing people along the way in which we will truly miss when we leave but I miss everyone back home!! I cannot wait to show my man off to the world!!! Still sprinting, has had some good ones and not so good ones. We want more good ones. But Liam has to do it! He started feeds today. After -12 days of no food just nutrients and fats they started him back. It's not breast milk but it is a formula that is used on patients that have chylous drainage from their chest tubes! It has low fat.. They are hoping two things. One it mAkes him stronger so he can get off the vent and two his chest tube drainage does not increase with feeds!! Lets avoid surgery little Liam!! Physical therapy stopped by today. I love seeing Liam do his little exercises. He is so precious and his facial expressions are to die for!! Valium was weaned down today. So he is doing fantastic with his withdrawals. So proud! One of our fav nurses was on tonight and she let me help give him a bath. It was so Memorable! They usually do it in the middle of the night when we are not there but tonight she said let's do it. It's a sponge bath but its still soap and water!! :). Chris unfortunately stopped away from his room and missed it but she is on again tomorrow night and as long as he has a good day she will let Chris give him one!! New memories to cherish!!

Day 31

It's always a good day when you have to think about what to write. My baby is so gorgeous! No question there!!!!!!!! Only changes made today were weaning and sprinting for my man!! They will continue to do so until that ventilator is out! He did a one hour sprint today and he did good. Then he did a two hour sprint and didn't do as good as what they wanted but they said no worries... 2 hours so soon for such a little guy was probably to much to start. They will work with what Liam wants to do!! I do not have the option to dress him in super cute clothes but I can supply super cute blankets! Every night he gets a bath and the nurse dresses up his bed today we walked in to the cutest! He looked like a boxer all wrapped in a Michigan blanket bought by Uncle Nate and Aunt Jamie. My dad said he looked like the Italian Stallion. (If you don't know who that is shame on you) :) Liam has all of them in the PCTU smitten by his charm!!

Day 30

Today was a nice quiet day for peanut! The only changes made today were his vent settings! They will adjust as tolerated. They base his decrease on his bloodwork which they do every 2-4 hours. they check his CO2, PO2 and his ph levels! If all is good they slowly change the settings. Hopefully this wean will be successful and he can get off it. The plan for Liam as of know is to wait till Friday for the decision if they want to do a thoracic duct ligation they will take him to the operating room and make incisions on the sides and clamp areas that are causing his drainage from his chest tubes! The chest tubes are still significantly draining and his left lung is still pretty junky. Plus the poor little guy has not had food in over 10 days! It's just a waiting game at this point for us to see what the plans will be in the future weeks! We had to say goodbye today to Grandma and Grandpa Mirone.. They made the decision to drive up in the middle of the night yesterday to be here before Liam went in for his heart cath! I don't know what I would do without my parents! I am so grateful for them and their support! Chris and I are so blessed to have the families that we have! It's always hard to see them go and I know it's hard for them to go' we just got to rip it off like a bandaid! If we don't no one will ever leave! It's so hard to say goodbye!

Day 29

Most of you know that today was a long day for Liam! Heart cath at 7:00 and we did not see him again till 12:00. Thank you Jesus.... It was successful! They did a balloon angioplasty in his pulmonary vein ! His gradiant went from a 12 to a 3-4. An amazing doctor that is world renouned for her skills completed his angioplasty! Now keep in mind a pulmonary vein in a baby is so tiny measuring with his stenosis a millimeter in size! She was able to get a catheter inside the vein and balloon it! These physicians at U and M are amazing! I am so grateful for all of them! Since this procedure was a success their goal is to repeat an echo in a week to check the gradiant again. The angioplasty can last days, weeks or indefinite. It is something that will need to monitor since they can become stenotic again! If this is the case his surgeon will have to take him for another surgery! But we are only taking one day at a time! Today ended 100 times better then the way it started. Since his return from cath lab his vitals have been better. He continues to be weaned on vent! All because more blood supply is able to move easier to the lungs! He truly is our superhero!!!! Before he was sent away this morning his nurse let me sort of hold him by my hands. It meant everything to me since he is 29 days old and I have never held him in my arms! Of course I cried all over his blankets but my mom always says that tears are like prayers, so Liam left with a soaking wet blanket full of prayers. :) God is good!!! Thank you to all! Xoxo

4 weeks

Our superhero is 4 weeks old today!!! Time has flown by! We never thought we would still be here in Ann Arbor but our little boy is not ready to leave just yet! Today was a crazy,busy day! His echo did show a higher gradient from his previous echo! Not what we wanted to hear! His surgeon said it his high enough now where some intervention is needed! So he was sent for a cardiac MRI today for more extensive tests! There is a discreet area showing some stenosis. So tomorrow morning he will be sent down to have another heart cath and while they are there they will do a balloon angioplasty! Where they will expand a balloon into the pulmonary vein to see if it changes anything. She did say that we will know immediately if it works! The bad thing is we don't know how long it will last! Days, months, forever.. Will need to be followed. If it does not work she will have to go back in his chest and try to repair it! If it has to be the alternative she wants to hold out to do so since his lungs are in very poor condition. His left is worse then the right but she said if he was to have another surgery she could make them both worse!! He needs to get the fluid off his lungs!! Another hard day, another day full of tears and heart ache! Tomorrow will be another long and hard day for us!! This journey is so hard, my little boy is stronger then I could have ever imagined but he needs to catch a break! Way more complications then what was anticipated. We need a prayer chain!! Xoxo

Day 27

Today was another good day overall for Liam.. Last night they continued to sprint him on his breathing exercises but unfortunately he did very poorly! His lungs still have some more healing to do! Chest X-ray today was stable, still showing fluid around the lungs! They are going to stop sprinting for a few days to give him a chance to catch up!! All the nurses day he is just not ready, he will tell us when he is ready. They all do!! But overall he had a good weekend! We had so much fun with Aunt Jamie and Uncle Nate! Having family here with us makes it a little easier to get through our days!!!! I am asking for loads of prayers for Liam !! Tomorrow is a big day for us! He has his echo scheduled in the morning, this will decide if he needs to go in for more surgery and/or another heart cath!! My heart breaks when I think about it. This sweet little angel has worked so hard to get where he is. today. But all of this is beyond our control. It's up to our Lord Savior! Please hear our prayers!!!!

Day 26

Today was a good day! His vent settings were at great pressure for him to sprint on the machine! Sprinting is when they set it on a setting were Liam has to breath on his own! If he does not take his own breath for a prolonged period of time the machine will push one for him. He is doing all the work! This is to exercise his lungs to help with extubation... His chest xray still looking pretty stable. Today they also discontinued his morphine! He was happy all day. No major hissy fits. He enjoyed his swaddle and slept off and on all day. Only got mad when they changed his diaper or suctioned him!! They also removed his left chest tube! they did not want ti remove it just yet but it was falling out and their concern with that is air might back up in the lungs! Lets hope they do not need to put a new one in! Chris and I had a discussion today about all of Liam's scars! he will have multiples.. We want to teach him early on never ever be embarassed by them! He should always be proud of what he has overcome and they will be his reminder!!!! Aunt Jamie and Uncle Nate came to visit for the weekend. We are all super excited to have them here!! Xoxo

Day 25

Today was a day of rest for Liam! They did wean on his vent and weaned on his morphine. But for the most part nothing changed. He did very good today. Had a few tantrums but for the most day he was happy! Daddy had a special moment with Liam, he got to clean out his mouth with a sponge! Liam loves the wet sponge, it helps to calm him down but it is actually used to prevent thrush. Thrush is a white substance that grows in the mouth usually seen after medication use. He also got his first swaddle! He loved. You can see a smile in the picture.

Day 24

Liam had a good day! He has been on three sedation meds at a pretty high dose since he was born. Today one of them was discontinued! I was told awhile back that he would be on a withdrawal protocol and on methadone and Valium for weeks even after we get home but I would have to say its harder then I thought it would be to experience him get off those meds! The tremor like symptoms break your hearts in a million pieces. Part of his movements are regular baby actions but intensified as the sedation wears off! But seeing him more alert and interactive is such a great feeling!! We actually think we got a few smiles today! He just melts your heart! I got to experience some of his little hissy fits today as well! He is trying to prepare me for when we get home and what I should expect with a baby! He is progressing so well that they moved us to a private room all the way down the hall! Everybody in the PCTU says its a good thing the farther away you get from the bay where he spent 20 plus days of his life! I do have to admit that I miss the hustle and bustle of the bay area. And all the girls... It's so quiet in our room! But our favorite nurses still continue to stop by to say hi to our little Liam. He is truly loved by all!!!!!! I still have the anxious feeling in the pit of my stomach for Monday's echo but I can only live in the now... Chris reminds me of that everyday. Please Lord give us the strength!! Please hold Liam's hand when I can't and hold Liam's heart to mend it! This I ask of you!!

23 days old

We rounded out our day pretty good..Liam had a great day.. His Heparin drip got started so hope all goes well with this. All vitals have been fantastic. He enjoyed his blood that was given to him yesterday, that always makes him excel in his stats.. He had his foley catheter removed today which I am sure he thoroughly enjoyed! Nephrology very pleased with his progress! No major problems. We love days like today! Their plan for the night is to make some weans on the vent. They want to push him on trying to breath over his vent! They want to get him to exercise settings! So let's hope he proves to all of us he is ready!! I believe in him... He surprises us everyday! Liam is starting to build his own team with nurses.. That pretty much means nurses sign up to work with him! They told us its a huge compliment to him and his family when that happens! They all love him. But who wouldn't! My mom, Danalynn and Bryson came to visit for a few days! Today was one to remember, Liam finally got to meet his big cousin Bryson... Bryson just kept saying baby!! That moment meant so much to see them together I love them both more than anything and i cannot wait for the days when we get to see them play with each other!!

Day 22

I am sorry to all of my followers that I did not post this last night! Yesterday was one of those days were shear emotional and physical exhaustion set in and I did not have enough energy to blog my feelings. Yesterday as a hole Liam had a great day! Weight is significantly down. Kidney functions look great! Weaned on more sedation.. Weaned on ventilator. Off Bp meds. Weaned on amiodarone. He was awake most of the day. He has become so alert and interactive. That pleases the physicians. They do not mind him being awake as long as he seems comfortable. Chris and I thought it was going to be a great day. Until we got his echo report! They decided to order one to check his heart pressures since his heart cath the day before showed weakness within the heart! The 2-d echo measured the pressure of his pulmonary vein to be elevated! For those you who have been following Liam's story you know that the pulmonary vein is what was obstructed and what needed to be surgically fixed immediately after birth for survival. Then they went in for his second open heart for increased pressures within the vein and found a blood clot had formed around his heart line! So hearing pressure has increased within the vein is disconcerning! Chris and I both felt broken after hearing this! The cardiac fellow said it was not there last week and it could be from the healing process or scarring around the site that was fixed! Unfortunately we got this report late in the day so Liam's heart surgeon was no longer in! Not knowing what was to be expected as we got here today but the fellow said that they will repeat his echo on friday and see what the pressures look like! He does not seem to be having any issues with the pressure increase, all of his vitals are perfect especially after he received some blood yesterday because his hemoglobin and hematocrit was low! Oh my Lord please let my little Liam get through this.... I am jumping to day 23 already with an update by Dr. Hirsch, she gave us hopeful news! One the weakness in the heart is most likely caused from his collapsed lung! It's all working very hard to bring blood back to the heart! Their goal is to continue working on his lung with vibrations to help rebuild it! Second in regards to the pulmonary vein she is not planning to just jump right back in his chest! Since all pressures have been fine except for the time with the blood clot she feels like he could have another one! She doesn't think it's structural from the initial surgery! So they are going to start him on heparin which is a blood thinner in hopes his pressures release! Plus she said the pressure of 5 is not life-threatening and wants to see how things go over the weekend! When they went in for his second surgery it was 8... So at this point all his hopeful!! She still believes that he is progressing and is not concerned! Please pray for Liam in hopes all is well and no need for additional surgeries. My little man cannot endure anymore!! I received a message from a friend with a bible verse that I enjoyed! Exodus 14:14; The Lord will fight for you; you need only be still!! Thank you for sharing this!! Xoxoxo

21 days

My man is three weeks old! Time really has gone fast for us! Liam no longer looks like a newborn, he is so stinkin cute!!! I cannot wait for all of you to meet him! His pictures to not do him justice.. Starting last night a fatty substance started to appear inside his chest tube drain! They called it chylous! They said it most likely happened during a surgical procedure! I asked if it was common and they all said yes! Most of the cardiac babies have experienced this! The one set back is to discontinue his breast milk for 7-10 days depending on if the substance slows down with this medicine they started him on today! It's a med that is supposed to dry excess fluid! Hoping and praying it slows it down, if not procedures might need to take place to help it and he might need to be on a special formula for 6 months! Prayer chains are needed please!!!! So today they sent him to the cath lab to have a heart cath completed and while they were there they placed a more stable med line in his right leg since the other one was 21 days old and they are not supposed to stay in that long! This is Thea line that all of his medicines go thru.. His heart cath came back good! The one side of his heart is weak where the blue blood circulates back but his heart surgeon said that can be treated with meds and it's not something that surprises them with his heart defect! But everything else measured good! Thank you god!!! She also said that Liam has found all the annoying things! Fixable but annoying! That is always good to hear! So with all of this.....last Night they tried sprinting on Liam. He did not do very good. His left lung ended up collapsing! So back up on the vent! Please lord let my little boy be able to get off his ventilator. My biggest fear is that tube and not being able to remove it!! So now they need to slowly wean him down again and do some treatments to improve that lung! Still weaning off his sedation meds, he is doing pretty good with it! Methadone and valium both introduced now to help with his withdrawls! So that is a positive! No arrythmias for the past three days so they are going to wean on his amiodarone to see how he does and make a decision on what anti-rhythmic he should be on long term! He has been thru more in 21 days then some people experience in a lifetime!! But he really is our superhero and our miracle! Please continue prayers! A message was sent to me and I think about it often! The poem FOOTPRINTS I try to remember during the hard times that god carries you through it all and we are never alone!!

20 days old

Liam had his dialysis drain removed today. Which is a huge step. The nephrologist was pleased with his progress! Kidney functions look great and his weight was significantly down from yesterday and his urine output has been good! So they removed it today! Yay!!!!!! Another chest X-ray was done and he had increased fluid around the left lung today so they added a chest tube on the left side! So he has one on the left from today and one on the right from Friday! At least there will be matching scars! So we removed one hole and added another. The reason for doing the chest tubes is to help him breath better! I have to remember what Chris always tells me and that is they only do it to make him better! Since the Chest tubes they have weaned significantly on his vent! The physician was confident that he might be able to start sprinting again tomorrow! Which is awesome, working towards getting the breathing tube out!! He hates the breathing tube! And all you moms out there are going to think I am crazy for saying this but I cannot wait to hear him cry! I only heard him cry that first moment of his life and that sound still rings in my ears! That moment during his delivery was one of the best moments for Chris and I. To hear our little boy cry soon again will be beyond words!! They are Still weaning him off the pain meds and since he has been on them for so long withdrawals will start to set in so they have started him on oral methadone! Which we will be on a withdrawal protocol even when we go home! He no longer looks like a newborn. He has grown and his features have changed so much! Still looks just like Chris! Chris loves the fact that he does!! We had a pretty good weekend! Liam had a lot of company this weekend. People love him so much they cannot get enough of him! They all made the long haul to see us!! It means everything to us when our families are here! Grandma and Grandpa Sugar were here all weekend with our precious baby Parker, Aunt Kathy and uncle Paul, my cousin Anthony on Saturday and my Mom and Aunt Peggy and my gorgeous cousin Kennedy came up for the day today! Thank you to all of you for spending your weekend with us! We love u!! Liam is one special little boy! He continues to amaze me on what he can endure! I thank god everyday for him!! I pray that only good things come our way from here on out!! P.S. this shout out is for my Aunt Peg! Sorry if this got posted to late! I know you wait for this everynight before bed! Now you can sleep! :)

Day 19

Woke up this morning to my Parker all cuddled up next to me! I missed him so much! It's been 24 days since we left home! A very long time to be away from our boy! I cannot wait to go home and have all of my boys together! Those are the days I dream of! My other little boy had a good day. He had an episode this morning with some SVT's but the upped his amiodarone and it brought it back to normal sinus! He was down some weight amd he continues to produce a large output from his dialysis They set his vent settings down today too! It will still be a few days before they restart his sprinting exercises! His last few episodes really set him back on the breathing tube. A few days ago they were discussing removing it now it will take more time! They all say the same thing, once his fluid is way down he will excel on his ventilator! They did start to wean his sedation today too!! He is awake a lot more. He is wide eye and interested on what is going on around him! He does get himself so upset when they move him or suction him! It breaks my heart with some of his reactions. He makes painful faces or throws up and his face gets so red! There is nothing I can do to help him and I hate it! He was pretty alert today and he did it so fast that me and the nurse both jumped on him... But he had that breathing tube in his hands ready to pull and he is pretty strong with his grip do we both got freaked out. That was a bad thing!! I have said it before but the nurses love him! They think he is so adorable and they call him baby sugar! They love his name too! Which it is pretty sweet!!! :) I hate saying good night to him! It's one of the hardest things we have to do! Leaving him for the night breaks my heart and my thoughts are always consumed with him and how he is doing! I love being there next to him so when he is awake and upset I can comfort him! I can't do that when I am away. It makes me sad that a nurse has to do it!! They are amazing people and genuinely nice to him but it's not his momma or his daddy! You better bet that once we get home. I am not leaving him for a long time! Xoxo

18 days old

The hardest part of my day is rounding that corner to the PCTU to Liam's bed! We never know what the day has in store for us! We usually miss rounds with the physicians buy the nurses fill us in for the plan of the day! Last night Liam had a few rough hours! He stopped urinating and his secretions increased, his volumes on the vent a went down. A chest X-ray and an ultrasound did show his lungs having increased fluid from the day before making it harder for him to breath! So today my little guy had a chest tube placed in his right lung to help drain the fluid! They heavily sedate him for the procedure since they have to go thru muscle and the rib cage! He has so much edema that the physicians in the unit usually perform this procedure but they decided to get a surgeon involved instead! He did so great of course, he always does but I had a hard time with it! My heart is broken for him! He continues to have setbacks and additional scars continue to add up! Lets just say he slept away the whole day from all the meds! Since his urination diminished thru the night he gained weight! Only a few ounces but to him it's huge! His swelling was so much more then noticeable today. He just can't lose weight! Nephrology decided to increase his dialysis to help the fluid output! Hopefully this works! Today was not one of our best days but I got to come home to the best greeting! My first baby boy Parker came to visit! Grandma and grandpa Sugar came to visit this weekend and they brought my man to stay with us!

17 days old

My little boy is getting skinnier everyday. Which is out goal... The more fluid that comes off the lower the vent settings and closer to removing the breathing tube! His personality shines more and more everyday! They are slowly reducing his sedatives and pain meds so he becomes more interactive! He is the sweetest thing and all of the nurses love him but he has his attitude too! Sometimes he gets so upset when people mess with him he gags an throws up! Chris and I have a hard time watching it! Some of the things we see or experience are not easy to see! But who can blame him with everything he is going through! Thank god he will not remember any of it! Finally getting a good amount of feeds in. Today was kind of fun for Chris and I! We got to feed him, not the way you would think since he has a feeding tube! But we were able to hold the milk above his him in a vial while it drained thru his tube giving him a full belly! the little things we get to do mean so much! Someone dear to me reminded me that this is a marathon not a sprint! I need to remind myself of that and enjoy the good times! He is already 17 days old and it's gone so fast!

16 days old

Liam was a good boy today! His heart continues to go in and out of rhythm but the physicians have been satisfied with his progress today! They have weaned him down significantly on his vent! Back on his feeding! He is still slowly losing his water weight with the dialysis drain! The physicians goal is to continue with the weight loss and working towards getting him off the vent! Liam has a full blown personality! Today his nurse was suctioning his breathing tube today ( which he hates) and he shot her the dirtiest look he could muster! We all got a very big laugh from it! I cannot wait to see him off of all these tubes so I can experience everything about him! From his facial features to his expressions! His iv in his leg was leaking last night and this morning. The problem with this is that is where all of his meds are pushed! So they had to remove the old one and put a new one in! The only thing about changing it out they decided to put one in his arm too! So now he has a cast on his arm with an iv! Poor baby... He has only one appendage left without a needle in it! His left arm is free for us to hold and kiss, he loves to have his hands by his face when he sleeps! In all of my ultrasound pictures his hands were in the same position up by his face. It is so sweet! He still does it now. But of course the right one with the cast is to heavy to lift and he is annoyed! Liam had a musical therapist stop by today and play lullabys with a guitar! It was so soothing and relaxing. I think i enjoyed it more then he did. My favorite part was when he played amazing grace! My cousin Katie entered my thoughts and I knew she was here watching over us! A calmness washed over me!! Overall i would say its a better day! Thank you all for your continued prayers! The power of prayer does work!

15 days old

Liam decided he wanted to start the day off with a bang! I received a phone call at 6:30 this morning from a PCTU nurse that Liam was having SVT's. This is an arrhythmia where his heart was beating very fast! They said it got up to 300.... All of his vitals plummeted! They had to cardiovert him twice! Which is an electrical impulse to get it back in rhythm. They had to do it again at 8:00! When we got there at 9:00. I walked around that corner and my heart just broke! He was hooked up to machines, EKG's there was a box labeled ARREST BOX! Try seeing that next to your babies bed! They did not have to use it thank god but they had to go back up on his ventilator and they held his feedings all day! I felt like we took two steps back but the physicians swear he still is making progress just on Liam's terms! They started him back on amiodarone and dr. Fifer his cardiologist said he will most likely need to stay on an anti rhythmic drug orally once we leave! She was glad all this happened while he was still in the ICU so they could catch it quick because action immediately needs to take place! All day his heart continued to go in and out of rhythm.. Not significantly high like this morning but high enough that he needed to be paced with a machine to get back to normal sinus! ( this is like just overriding his heart). We have done this before! He would jump into normal rhythm for sometime then jump back out! Today was a long day! Chris and I did not leave his bedside all day! We didn't want to miss anything! He looked handsome as ever today but still has a lot of fluid on board! His belly still looks big to me but they all say he is slowly getting skinnier! It's all on Liam's terms!! When he is ready! when we left his heart had been in rhythm for over three hours and they were going to start to adjust the vent! The plan for tonight is to just continue to monitor and if needed could be paced as needed! My poor angel! I pray he has a good night and tomorrow can start a new day for us!

2 weeks old

Can you believe he is two weeks old already! The time here in Michigan has gone so fast! Liam was very peaceful all day today! His blue hue is starting to show as the fluid comes off! Dr Hirsch already informed us that patients like Liam will have a blue tint to their skin! As the second and third surgery are complete he will become pinker. Today I asked her if she was concerned with his coloring and she said no. All of his vitals have been good no need to be concerned about the pulmonary band ( which is what I was concerned about) she laughed today and said just stay away from navy blue clothes for him! Chris and I love her! Liam is so very lucky to have a doctor like her! She saved him! Iall of his doctors and nurses and the people around him in the PCTU are amazing. We thank god for them everyday! We wouldn't be here if it wasn't for them! They are the best! Tonight they decided to change out his breathing tube for a new one! His leak became so bad it started giving off inaccurate results! So before it could be removed permanently he needed a new one so his numbers matched. Of course my man did amazing with no problems! He is stronger then I am... I think sometimes I need a breathing tube! I forget to breath! He is so beautiful! I cannot wait for all of you to meet him! He is our angel!!

A moment to last a lifetime

Last night after my latest blog. Chris and I got to experience one of the most amazing moments with Liam! The respiratory therapist knew I was having a bad day. She told us to grab a camera! She said she cannot do this with everyone but Liam has been doing so good on his practice breathing that she felt confident! She disconnected his breathing tube, lifted him up so Chris and I could give him an official kiss without a big tube in the way! It was the best moment of my life!! I don't think Liam enjoyed as much as his parents did since we woke him from his sleep. But Chris and I were beyond words!

13 days old.

Liam had a good day today. No changes from the last few! Weekends here at the hospital are pretty quiet and laid back. They usually do not change much unless the patient needs it! Nephrology stops by once a day to check on his dialysis. They seem to be pleased. He is looking pretty handsome these days! Chris and I look back at old pictures from last week and we cannot believe how much he has changed! Aunt Amanda and Grammy Jen came to visit this weekend! Grandma and grandpa Mirone were here too! It's always fun when Liam gets visitors! It's always hard when they leave! Sometimes I think my little boy is stronger then me! Today was an Angie breakdown anxiety kind of day! Its been a few days since I have had a good let it all out cry! Well today was my day! It all started when Liam was super agitated earlier today and he would look at me with those big beautiful eyes and I swear they were speaking to me! There is nothing I could do! The vent tube seems to irritate him more and more everyday! I just want to pick him up so bad! Ok enough poor Angie this is for him and how amazing he is and how special he will be!!! Everyday is a new day for Chris and I! I wish I was tough like Chris he never breaks... Liam is a fighter and prayers do work! Proverbs 3. 5-6. Trust in the lord with all your heart and lean not on your own understanding. In all your ways submit to him and he will make your path straight!

12 days old

Liam practiced breathing today! For one hour they changed his pressure settings on his vent so he could take breaths on his own! Of course I stood there holding my own breath while I watched his chest go up and down. But he did so good! They were very pleased. He needs to do it three times a day to help prepare his lungs for removal of the breathing tube! Of course they will not remove it until his edema is gone but he is on his way! His features continue to change everyday as he shrinks back down to his normal size! He is so handsome! Today was a great day! He is on a complex feeding schedule! Right now he is on 8 cc an hour of milk. If he tolerates it they will continue to increase it every two hours! Hopefully start to wean off some meds soon! But their main concern is still getting the weight off. He weighed 6.6lbs when he was born with all the fluid he weighs 8.9lbs Everyday is a new day! Today was a success!!! I love days like today!! I pray that they only continue to stay that way!!!

Liam's first home game!!!

Liam's first official home game! The Sugar's supporting the home team!! Go Blue!! Uncle Nate would be so proud!!

11 days old

Liam had his chest tube removed today! It had dried out and no longer needed it! That was a huge step! His catheter was removed but they decided to put it back in. A few hours went by without him urinating and with them wanted all his fluid off they decided to put it back in! I think it was a good idea so they could keep better track of his output! His peritoneal drain is working! More fluid is draining out then what is being put in. That's called success!He is looking skinnier everyday. Weight is not significantly down but I think he looks better! His vent settings are at a good number! The physicians said they might let him do some practice breathing this weekend to see how he does! I have to tell all of you that he looks identical to Christopher. It saddens me to say it but yes he is all his daddy!! Chris loves it.. We have a baby picture of Chris and it looks just like Liam! The running joke is while he was full of edema and weight he looked like me but as the fluid comes off an he gets skinny he is Chris! I love seeing them together and the way Chris looks at him makes me so happy! My family feels complete with our new addition. I cannot wait to get him home to start our lives together and for him and Parker to become best friends!!

10 days old

So today my man is 10 days old! It is easier for me to keep track by his age then the days of the journey. My brain is fried enough so trying to count out the days makes it a little difficult! Liam is not getting his weight off quick enough. His output of urine as slowed down and the peritoneal drain. So today the team got nephrology involved. Kidneys are working so hard to produce output that they decided to do some dialysis out of his drain!! Of course when I heard this I freaked. Thinking he is in renal failure nut the physician explained it as since he already has the drain in they might as well see if they can flush some fluid out to give his kidneys a break! It makes sense since we need our kidneys to survive let's not fry them out already!! My man is such a fighter, but sometimes I think he fights against us while we try to make him better! It took awhile to get everything right with the dialysis. Once in they flush 50 cc in, wait 40 minutes and hope when they flush out more will come out then what the put in. So Liam first two try gave us 9 cc out 3rd try negative 9. So when I left him tonight he was the same! I hope it works for him. His swelling is so bad and it has created so much pain. Every two hours they need to move him. When they do my heart aches, you usually see his back looks bruised because of the swelling behind so bad. The nurse did say some kids have a harder time getting fluid off. Going thru three heart procedures in 10 days. I am not surprised but can't go forward unless some comes off. No change in vent pressures because of it!! Today was a big milestone in the fact that he finally was able to get his feeding tube and begin milk. He is probably starving, another tube in his nose to add to his collection! Chris and I got involved with parent group today called medical play! You make a stuffed animal got represent what your child has gone thru so they can understand when they get older! We had so much fun. We named him Logan the Lion.......I know my buckeye fans will be disappointed but Logan is Wolverine in the X-- men and Liam is a Michigan fan and a superhero so it fit! We also made hope beads, each bead represents an event he has gone thru... Such as, surgery, intubation, iv, special people. Etc!! The activities they do for parents and their families are pretty awesome. They try to get us involved with something to help us cope! Chris has his special moments with Liam. He loves to hold his hand and watch over him. It is so sweet! Chris is already an amazing dad and we already knew an amazing husband! It's there daddy and son time That I let them share since we all know I am all over him 24/7 smelling him, kissing him, talking to him! I just can't get enough of him! He made a progress today not enough but we are still heading there. Leaving him at night is exhausting for both of us.. Tonight especially, he was so agitated and so uncomfortable that he showed it on his face! He crinkles up his nose and tries to cry. Which nothing comes out because of the tube but it breaks your heart! His heart continues to jump in and out of rhythm. I pray it stops doing that over the next day so no internal pacemaker is suggested. Keep him on the amiodarone to help with that! The days are long but they go fast!!