Day 14: Discharge Day

Well, we have been in Chicago for 2 weeks now, and are entering our 3rd week.....and we got discharged today! I can't believe we are actually out of the hospital. Macy is purely amazing!

We had one of the worst nights last night, and I am actually shocked that they let us go today. Macy had the worst pains last night, and could not sleep at all. She was in pain until about 2 a.m. when she finally started sleeping. Then at the hospital, your morning starts at 6 a.m. whether you like it or not.

During the morning, the decision was made to take Macy off of the Heparin, so that was the last tube tying us to an IV pole. We also took a field trip to CT scan, and had one of those done. Macy does so good at following the directions, and staying still.

Most of our afternoon was spent waiting. It started to become ridiculous. There comes a time when you are at the hospital and you don't need to be there anymore.  That was us today! Unfortunately our surgeon was in surgery at a different hospital. I had to turn into a barracuda, and start stalking the nurses and peds surgery staff in order to get discharged today. Macy, emotionally and mentally needed to leave so bad!

We go back tomorrow for more labs, and return Friday for a triple appointment (more labs, ultrasound, and physician visit).  They continue to be shocked with Macy. Today our doctor's nurse practiconer came to see Macy for the first time. She said that Macy was doing better than 90% of the people that have surgery like this. We are so proud!

We still have a lot of healing to do outside the walls of the hospital. Macy is still struggling with her balance, and I notice a lot of stiffness in her body when she moves, particularly her feet. She also lost weight, and it is very easy to see in her face, wrists, and, legs. Macy has always been skinny, but she is SKINNY now.  I don't want to push her belly, so we are taking it slow, and I have faith the weight will come back on and then some!

Please continue to pray for Macy's full recovery!

Day 13: Post Op #2

I finally started to see "Macy" today. She smiled, she laughed, and she talked my ear off. It was so great! I think that a lot of the medications are finally starting to get out of her system.

First thing this morning her nurse unhooked her from her monitors. It gave us a lot of freedom. Our team of docs came in, and said they wanted to give the Coumadin levels 1 more night before turning off the Heparin, so we are stuck with the Heparin for another day, so that meant rolling around that stinking IV pole. Hey...I will not complain about that, I am just happy to have single IV pole versus the double we had earlier this week. Also, we made it through the night with no oxygen, so we are good to go there.

Tomorrow we will go for a CT scan to check liver blood flow. We don't know what time yet. We should also get to discontinue the Heparin, and we were fortunate not to start up the TPN again. With all that said, if all goes well tomorrow, we should be able to get out of this joint!

Macy is continuing to gain back strength. She walked from our room, to the elevators, down to the 12 floor, and then to the Family Life Center.  She held onto and pushed her IV pole, but it was a long way. She is now able to walk unassisted for short distances, but I stay close because her balance is not there yet.

Her pain is coming and going. Most of her pain seems to be related to her stomach and bowels versus her incision. I think things are still trying to wake up and normalize. She is eating better today, and I know it will continue to get better when we finally get out of here.

My in-laws left today, and my mom arrived. She sent Jeremy and I out to get a long overdue dinner together, so we did. We went to the Cheesecake Factory. When our food arrived, we ordered to-go food for mom and the girls. After some conversation, I explained that the food was for our family at the children's hospital. When he brought the to-go food to our table, he had put in  untensils, as well as a piece of cheesecake on the house. It was so sweet! Being the emotional people we have been lately, our eyes filled with tears. There is still so much goodness and compassion in this world, and tonight was a great example of that!

I will update "when" we get discharged tomorrow... not "if"! Prayers for a great day are appreciated!

Day 12: Post Op #2

I am sitting here next to Macy's bed, and McKenna is napping at my feet. I have both of my girls together with me, and it feels so good! I am having an emotional weekend. There are times I want to cry due to pure happiness and joy for all of the things Macy is fighting so hard to accomplish, and there are times when things seem so hard to handle, and I want to lose it as well. I just want to get out of here.....mainly for Macy's sake.  She is so done with being poked and prodded, and staring at hospital walls.

Each day is better, and others looking in, like doctors, nurses, respiratory therapist, and physical therapists keep commenting about the amazing progress she has made just in a days time. It helps to remind me how far this little girl keeps going in such a short time.  It's just hard when you watch and see the pain and struggle Macy is going throughout to accomplish all the goals she keeps setting for herself.  She is the most determined young lady ever, and is out to prove to everyone how much she truly has inside that tiny little body.

On Thursday she sat up for the first time, she could not hold herself up. She was so dizzy. On Friday she sat in a chair. She did not sit long, and was in so much pain. On Saturday, she sat in a chair, and put her feet on the ground for the first time taking assisted steps. Today she walked to the end of the hallway pushing her own IV pole. It was slow, and she needed the pole support the whole time, but she did it!

We also took her down to the 12th floor family center to see the therapy dogs. She wanted to go down again this afternoon, so we did. She loved getting out of the room. We even propped her up in the window in our room so that she could see the Chicago view.  She loved it!

We had to back off on her respiratory therapy a little today. She was getting a percussive type therapy through a medineb, and it was causing too much coughing and mucus. It actually made her vomit her lunch, which is the last thing we want to do. She is eating food with more substance, and it sounds like tomorrow might be her last day with TPN. It also might be her last day with the IV blood thinner, since they are changing us slowly to oral meds. If that is the case she will not need any more IVs. She also did so good today breathing wise, that they removed the oxygen to see how she would handle it, and we have been off since noon.  We are praying she continues to tolerate it.

It looks like our CT scan will most likely be tomorrow. We are praying with all we have that we are IV free tomorrow, that we have our CT scan imaging done, and that Macy continues to eat more and more. I see a discharge to the Ronald McDonald house in our near future! Please pray for that!

I also need to give a huge thanks to Mamaw and Papaw VanVleet for coming this weekend and lifting all of our spirits! We all needed it! It has been a healing weekend in so many ways, and they have helped out so much with McKenna, allowing Macy time to take breaks and rest. Thanks again!

Day 11: Post Op #2

We had a very eventful day today. It was eventful in many good ways. We were very sad to see Grandma Kelli go home, because she has been with either McKenna or me and Macy for the last 12 days. She has been so amazingly helpful! We are so blessed to have her!

McKenna and I started our day with a walk in the city to the mall. This was the longest and farthest I had been away from the hospital since we got here, and only the 5th time to leave the doors.  We enjoyed shopping at Claire's before heading back to the hospital.

Then our day got even more exciting when Mamaw and Papaw came for the weekend! The girls were beyond excited, and it was so nice to take our minds off of hospital things to enjoy family.

Macy is continuing to make process, but I had no idea when we started this journey just how difficult her recovery would be. Due to being paralyzed for 5 days, 2 surgeries, lots of pain and sedation drugs, and laying in bed following surgery, she had a very overwhelming weakness in her body.  Macy is now able to roll from side to side in bed. She was able to sit for a short period of time unassisted in bed, and today she put her feet on the ground and walked for the first time...completely assisted though. It hurt her so bad, and broke my heart. To think that 12 days ago this little girl was running, walking, and jumping, and now can't even walk on her own is so devastating.

She is determined though! After going for our second "walk" today, she told me she did not want me to help her, and tried to let go. I held on with one hand, and she was working very hard to support herself. I got her in her bed, and then walked out of the room and lost it.  I just can't imagine going through what she is going through...as a 10 year old. She amazes me with the fight and determination she has. She could very well say "I can't do this" or "this is too hard", but not once has a word like that come it of her mouth. She runs along the lines of , "watch me!"

She is down to 1 liter of oxygen, and we might be able to get rid of some of her meds tomorrow, mainly her heparin (blood thinner). They switched her over to an oral med called Coumadin. They wait to remove the heparin until you level of Coumadin is correct. They usually check after 3 days, and want the level to be 1.8. Well after 2 days I'd Coumadin, she was at 1.5, so here's hoping to get to 1.8 tomorrow! We also get a break from our TPN (IV nutrition) for 4 hours tomorrow. So we may be able to venture off the floor for a while and take a wheel chair ride downstairs to the family life center. On Sundays they have therapy dogs!

When our family left tonight to go back to the RMH, Macy started crying. She said she wanted to home. I think all of this emotion led her to tighten up, therefore causing incision pain that lasted for about 20 minutes. It was awful. We had to push her pain button twice for meds. I am praying that is all it was and not her stomach. I think we are in a good place food wise after spending most of the day eating broths and jello.
She is sleeping soundly now, let's pray for a quiet restful night!

Day 10: Post Op #2

Today was full of ups and downs. We are having a very difficult time with pain. We still have a lot of pain at her incision, but today has been a lot of pain associated with trying to eat. This morning we tried liquids, and had some minor pain. For lunch and dinner we were allowed to let her try what sounded good. She had major pain following bites of food. She rated it at a 10 on the pain scale , and was brought to tears.  Tears from pain are not common from Macy, so we know it's bad.

First of all, I think we got too aggressive with her desire to eat food.  Also, I feel very strongly that it's  gas pains.  I think her stomach and bowels are just waking up, and are full of gas. It's awful to see her in so much pain though. I worry about weight, but she is still on TPN, however I feel she is skinnier already.

Now on the the ups for today......they weaned her overnight from 12 liters on high flow oxygen, to 3 liters of regular oxygen. Her chest X-ray looked pretty good, and her left lung appears to be open again finally. They moved us to the floor at about 5 pm tonight!  The ICU doctors and nurses were so sad to see Macy go.  They loved her! In other good news, our family of 4 was finally back together after 11 days! Seeing McKenna totally boosted Macy's spirits.

So please pray for her stomach to start accepting food, and stop hurting poor Macy. Also please pray for her physical strength.  She sat in a chair for about 1 hour today, and attempted to stand during physical therapy, but she can hardly stand, and cannot walk. Please pray for this! We are moving in the right direction, but it's a long recovery road!

Day 9: Post Op #2

9 days already?  Haha, who am I kidding, it feels like it's been 109. So I have left the hospital only 3 times since we got here. Each time I went outside and walked around the block. The first time was Sunday,  and then my other walks were yesterday and today. It's a big deal for me to leave, so I am very proud of myself.  I am also taking showers, and I am sure the nurses and doctors greatly appreciate that, and it makes me feel a little normal. Macy got some good sleep last night, and she is already asleep for tonight.

We had a good day today. One doctor looked at me yesterday when I started crying during rounds and said, "she'll be a different kid tomorrow".  She is! During rounds this morning, they made the decision to give her a try back on the high flow nasal cannula. If she did well, great. If she struggled then we would just look at it as a break, and then slowly give and increase breaks.  So at 11:30 a.m. today we took her off the bipap, and switched to the high flow nasal cannula. She has done great on it all day. We are praying this continues! She is still struggling with pain some, but she is learning to press her pain button that administers medication as needed. They have reduced the meds a lot, haven added in some Tylenol to help as well.

She has had a lot of anxiety today, that I think stems from her fear of the pain. Movment has been a big cause of the pain and anxiety. Our physical therapist came by today, did exercises with her, and even helped her sit up on the side of the bed. Macy needed support since her body is so weak from the 5 days of paralytic, and then 4 more of almost no movement in bed.

They have now removed her arterial line, and her ng tube (from nose to stomach). However she was ahead of the game around midnight last night, and pulled it out herself, lol. They of course placed it back in only to have Dr. Superina tell them to take it out tonight.  She also had 1 IV go bad yesterday, so it was removed as well. So we are down to 2 IVs, a central line, and oxygen.

So my big question tonight was, what do we need to do inn order to get out of the ICU? She need to get her central line out, which can't go until we stop our TPN. She can't stop TPN until she is eating, and she can't eat until her bowels wake up and she poops. Which they said is one of the hardest things to accomplish after big surgeries like Macy's. Well folks, she pooped! Bring on the food!

We also have to wean the high flow oxygen to an regular nasal cannula. You can get on a regular one when you are down to 3 liters. Macy is on 10 liters right now. So I have no way to tell when our move will happen, but I pray it's soon.

Also, starting tomorrow we will transition Macy from her IV anticoagulation medication Heparin, to an oral one. This is a med that can be very tricky to get the right dose,many might change often. Unfortunately it requires a lot of lab work. At first it will be daily, and then once we think we have the right dose, we still have to check it weekly.....for 6 months. It totally sucks for Macy!!!!

I know I say this often, but she is amazing! All of the doctors and nurses know it as well, and are so impressed with her. Dr. Superina came in tonight, looked at her and said "you're pretty amazing aren't you?!?!" Yes she is!

Oh and just to make the day even more special, Grandma Kelli went out shopping today, and bought Macy a whole bag of cute hair bows. I did her hair up in a cute bun, and out one of the bows in it. Those little things are helping her feel a little normal.

Also, we are so excited to have a family here with us for our Abernethy support group. I am not happy, that we are all here in the ICU, but our kids are getting a cure we didn't know was possible,and we are here to support each other. There cute little guy had his 1st surgery yesterday, so I know how difficult the road ahead is, please pray for them.  A doctor got tickled when she saw us together since Abernethy Malformation is so rare, and here two families stood together chatting, with our kiddos only rooms apart.  Then Doctor peeked her head in and said, "look, it's an Abernethy convention!" It was too funny!

Anyway, please pray for a great night for Macy, full of rest and healing! Tomorrow she will finally be reunited with her sister, and our family will be together again after 10 long, hard days apart!

Day 8: Post Op #2

It's so hard to say how things are truly going when you are in the ICU, and you live by the moment. You live by the numbers on the lab test, the numbers on the screen, and the current state your child is in. One moment your child seems "okay" and the next moment there is a medical team standing around your child's bed trying to make quick decisions, and your adrenaline is flowing so bad you are literally shaking. That was our yesterday, multiple times, and that is why I did not update until the middle of the night.

Sticking Macy on bipap has been hard for her, but I think it was a great choice. We are in a much better place today thanks to the bipap , medication changes, and her respiratory therapy she is getting. I honestly can't say if they will want to change her off of bipap or not tomorrow. I hope they do, but I know they want to be sure in order to avoid a setback.

Poor Macy keeps asking for water and apple juice. She had been very depressed about today, and I don't blame her. She always gets like this during hospital stays, it's just awful! We called in Child Life to help. She came by to check on her, and tried to just spend some time getting to know her, which was quite the task. First of all, Macy has a gigantic mask covering most of her face, and we can't just take it off because it is helping her breathing. Also, Macy seems to be somewhat confused. She is answering questions weird, as well as saying some weird things. They think it is all of the pain meds she has been on and is still on. We are trying to wean her though, and transition her into non-narcotic pain meds.

Also, today was McKennna's last day of kindergarten, so we now have a 1st grader and a 5th grader in our house! She has enjoyed the last two evenings with her daddy. They went on a date last night, and he took her for a celebration ice cream treat tonight.  They will come up on Friday night to spend the weekend with Macy and I. I can't wait to see my baby again!

Please pray for a good night, respiratory improvement, and a great day tomorrow!

Day 7: Post Op #2

Let me start with the positives, I am thinking positively right now! Macy is extubated, and her labs look good. Another positive is that Dr. Superina came to see me today, and was so excited to show me the images from her venogram in the OR yesterday after surgery. Macy's blood flow to her liver is remarkable! He showed me befores and afters, I felt like crying. It is truly a miracle!

With all that said, we had an extremely rough day. Macy fought the breathing tube all morning, trying to physically pull it out multiple times. She was gagging, and even vomited around the tube. It was awful. After extubation she wasn't holding her oxygen levels well, and we noticed she had a ton of thick mucus that she couldn't cough up. Due to her wound on her abdomen, she is in too much pain to cough, even when we try to coach her through it. So they tried a machine that provided percussion breaths, a cough assist machine, and even cpap. We were just trying to see what might make her breath an little easier. Everything agitated her so bad, so they finally settled on a high flow nasal cannula, with a lot of oxygen.

We were on that all afternoon and evening with numbers all over the place, multiple desats, and she appeared to be struggling worse to breath around midnight after the nurse and I changed her bedding, she desaturated pretty low. We had to call the doctors in, and it was decided to place her on bipap. It is a huge mask that straps around your head and provides constant in and out flow for her. For once today, she is finally comfortable from a number standpoint, however I know she hates it.

I truly believe that with being intubated for 6 days, paralyzed for 5, and with a history of respiratory struggles, that she just needed a transition from the vent, and this bipap will do that for her.

Prayers are appreciated for positive respiratory changes in the next few days.

In Awe...

I am in total awe of this little girl. Never in my life could I have imagined to know someone with so much fight in her, yet to have it be my own daughter.

So this current state Macy is in is a tricky one. She has no more paralytic, but still gets Versed and Fentanyl for pain. They are using it to help keep her comfortable as well because she still has the vent in.  The vent goes in her mouth, and down her throat to help her breath. It has an umbilical clip around it at her mouth area and is taped to her face.

I can't even begin to imagine how uncomfortable she is. She is currently coming and going out of wake and sleep.  Around the tube she is creating a lot of mucus and spit that she is pointing at for us to suck out.  She cannot talk around the tube however she keeps trying.  To sit and tolerate a tube down her throat like this is amazing, especially for a child, and a child with a very bad gag reflex!

She is answering our questions about her needs with yes and no head nods.  Her belly is hurting her the most right now, so any movement makes her cringe.  I can only imagine how it feels since has that huge Mercedes incision.  Amongst the ventilator and the incision, she still has 3 IVs, her central line, and her art line. The catheter is still gone since she is producing enough urine in her own, which we cannot get her out of bed to do, so that is a whole other story. Her  mezenteric line (belly line into portal vein) is gone as well.  But good grief, to wake up with all this stuff in you and handle it so well is unbelievable!

Today we are praying to wean her vent setting and get her extubated. We are also praying to get her blood thinning back to the therapeutic level it was at before surgery. We need lots of pray for pain control for Macy as well! Also please pray for Jeremy as he is leaving today to go home. He needs to work, but more importantly we want him to be with McKenna on her last few days of school.  Pray for his emotions as he walks out the door, and for safe travels! We are hitting that road to recovery with pure determination and drive!

Day 6: Surgery #2

As many of you know, our second surgery is finished. Macy was a rockstar! We experienced a first today. Out of all of the surgeries we have had, we have never been inpatient and had them take her to the OR from her ICU room. Today they did. It was odd for me and Jeremy to watch them wheel her away for a major surgery and the stay in the room. It was a long wait in an empty room where her bed once stood.

So they removed the staples that were holding her skin on her incision, and did some imaging. They were beyond amazed when they noticed that the shunt (wrong pathway) had almost closed on its own. So they completely occluded it with a band, and her pressures barely changed. This is exactly what they wanted. She had blood flowing through her actual portal vein, and had great blood flow in the liver. They were beyond excited.  So they completely cut and removed the shunt. It is gone! Her blood is now flowing where it should be.

Again, this is a big adjustment for her body. In order to keep her cozy and watch her closely we are back in the ICU, and she still is breathing with a ventilator and on multiple pain meds. They will most likely start weaning her vent down tomorrow, and we can get that stinking tube out of her throat.

They still have to monitor many different things with her such as specific blood numbers, as well as her belly fluid. We are so proud of our girl, and I have never in my life seen someone with so much courage, strength, and determination!  Keep the prayers coming, we still have a very long road to recovery.

Day 5: Post Op

I can't  even begin to describe how amazing our daughter is! We have had quite the day.

When the doctors did rounds this morning, they discussed turning off her paralytic medication. Since she is having surgery tomorrow, turning it off can now, can help her recovery after surgery tomorrow. They also discussed removing her catheter, and letting her go without to reduce the chance of infection.

So, after getting the okay from Dr. Superina and his team, they gave the okay for both of these changes. First the catheter came out. Then, they turned off her paralytic, explaining that it would most likely take hours for the drug to wear off. Well, in true Macy fashion, it only took minutes. First she started twitching in her hands and feet, and then she started moving her arms.  Then she started to become a little agitated, and started to fight the breathing tube. So our nurse calmly talked to her like she has been doing for days (even though she hasn't been awake) and said "Macy, why don't you take a nap?" Shocking us a all, Macy shook her head NO. We all looked at each other in shock, and then asked her another question and she answered again with a head shake.

So for the last few hours, Macy has been communicating with us through head shakes, and arms movements. Finding out her needs has taken me and Jeremy a lot of questions and a lot of guessing. She is truly amazing! She has tried to talk around the breathing tube, tried to smile, and has even cried. It's hard to help her, but we are trying our best.

The attending doctor with us today came by to tell us goodbye, and Macy tried to wave goodbye to him. This sweet girl can barely open her eyes, is on pain medication/sedation, is breathing by a ventilator, has very weak arms and legs, yet is fighting through it all.  Nurses and doctors have been coming by to see her because they are all amazed by her as well.

I explained that she has her second surgery tomorrow, and that when it is over she can tell us all the things she wants to tell us.  She is so strong!

So we are keeping her on all of her pain meds, they are helping her to stay comfortable. Her hemoglobin is a little low so they are going to give her some blood. Surgery is tomorrow at 10:30 a.m. Please continue for no pain and lots of comfort through the night, as well as a successful surgery tomorrow, and fast healing!

Day 4: Post Op

Sorry this post is so late, we had a very busy day today....well as busy as you can be in the ICU. Our morning started with the nurse noticing some bloody drainage from her wound.  It was draining pretty heavily so they notified surgery.

Surgery came in, changed the dressing, and told us he believes it is because her blood got a little too thin coupled with the fact that it could just be draining as well.  He ordered an ultrasound as well as a venogram to take a look at what was happening inside.

Ultrasound came bedside, and it took about 1 hour.  Then around noon they had to transport Macy to Interventional Radiology for the venogram. Transporting a patient who has over 10 meds hanging, as well as monitors and a vent is quite a task. They have to turn the vent off and bag her the whole trip. Yikes...makes me nervous. She did great though, and was back to the room within about 45 minutes.

The surgeon came soon after to visit, and entered with, "we have good news"! Her tests showed that she has very little blood flowing through the shunt (wrong way), and that blood flow and pressures look great. We are on the books for surgery #2 on Monday. The anesthesiologist already came by to introduce himself. We don't know what time yet though.

The have informed us that Macy might still be on the vent when she returns from surgery, but the goal will be to ween her and start waking her up. Only her body knows how long that will take, so I can't make any predictions. They also said waking up and getting her comfortable will be difficult. So Jeremy and I need to rest up so we can focus on Macy.

Our day was made extra special by all the Flat Macy posts that everyone did! We have over 50 pictures, and Jeremy is working on compiling them so we can share them all in one place, and have it ready to show Macy when she wakes up! The love for our sweet girl and our family touched my heart so deeply today, and brought me to tears multiple times.

In other news...our sweet McKenna lost another front tooth, and looks absolutely adorable! My mom has been doing an amazing job taking care of her, and I am so happy she is there to give her all the love like I wish I could right now! Thank you Mom!

Great news, good day........come on Monday!

Day 3: Post Op

Macy did pretty good overnight with no desats (dips in her oxygen). I was up a lot through the night due to people coming and going. She has had a low grade fever, so they ran some cultures. The culture from her vent tube came back positive for bacteria. She is already on antibiotics so they will just tweak those to fight this specific type of bacteria.

The surgeons came in this morning and said we are getting her coags (blood clotting factor) close to what we want.  They want her blood to be a specific thinness. Her labs earlier this morning were 55, and then dropped to 35.  They want her in between 60-80.  We increased her sedation a little bit due to higher heart rate and high blood pressure. They also ordered an echo, and her heart looks good.  Her catheter leaked a little today, but we think the issue is fixed. Overall she looks pretty good right now.

One of our surgeons changed her dressing since it was completely saturated. She is not stitched closed, but her top skin is stapled temporarily. It looked good, and it is great to see a nice clean dressing. He said it still looks like we will go back in Monday, but we have no idea when since they will just take her from our room. We can't be more proud of our tough little Macy.  She continues to amaze us!

The main man, Dr. Superina came in tonight. He said she looks great, and will most likely do a veno gram tomorrow. They wil be checking for blood flow as well as clotting. After surgery Monday, we will start waking her up. I feel like crying just thinking about her waking up and seeing those sweet eyes again!

Jeremy and I are here alone now, my dad went home.We appreciated him being here to help during pre-op and surgery day. He is such a supportive man. It had been so long since a big surgery we just didn't now how we would do.  We are doing great though. Jeremy has been awesome. He has been getting us food, bringing me changes of clothes, and even brought the nurses donuts this morning. They loved it! He did some laundry last night when he got back to the RMH. I finally got to take a shower last night. It was amazing!!!!

McKenna has been having a great time with Grandma Kelli! My mom has volunteers at the school each day this week, and has been doing great things with McKenna. We have been using Face Time to see her and talk to her daily. She broke my heart last night when she asked to see Macy.  I showed her the view from our window, and a quick view of the room.  She could not see Macy, just her feet. They will be so happy to see each other again!

Day 2: Post Op

I forgot what it was like to sleep in the ICU. It's awful! I think I might of slept a total of 3 hours. I just can't stop jumping up each time someone enters the room. I tried to sleep today, but it didn't happen.

The doctors and nurses have been working all day to get some of her levels adjusted appropriately. They have changed her vent settings as well as increased her pain and paralytic meds.

At 3 a.m she had an episode where she dipped her oxygen levels. They had to detach the vent and bag her until she came back up. She did it again this afternoon, but dipped down much lower. It is scary to see those numbers dip and watch your child being bagged. They had to call for backup.

After that they ordered a chest X-ray. The film shows an area in her upper left lobe of her lungs that is either filled with fluid or a collapse. They made some changes to her vent, and respiratory therapy came down to give Macy a treatment from a machine called IPV. It gives percussion to her lungs through the vent. She responded well to it! They are also starting her on TPN tonight which is nutrition through one of her lines.

I miss McKenna so much! We've been face timing, but I miss her hugs and kisses like you can't even imagine. Actually, I miss both of my girls. Macy is physically here with Jeremy and me, but not really.  I know this is only temporary, but it is so hard. I see life going on outside the windows of the hospital, I hear staff talking about their kids, I see pictures of friends simply living life, and it makes me sad. I want that so bad right now. The worst part is that we have many more days of this.  It will all be okay, and we will be back to our awesome family outings and family movie nights before we know it! Trying to keep positive!

Overall kind of a rough day, but looking up.  Please pray for a resolve in her left lung, as well as continued positive changes!

Day 1: Surgery

Surgery day is always a hard one. Thankfully Macy was in great spirits! We got to pthe surgery waiting area, checked in, and were in a room by 6:30 a.m. We were visited by the nurse, 2 people on the anesthesiologist team, and then our surgeon.  Macy finally looked at us and said, "let's get this over with!"

Sporting her giant hospital gown, paper shorts, and gigantic footies, they rolled her away playing Fruit Ninja on the anesthesiologist's phone. They have rolled her away 21 times before, but it never gets easier.

They told us surgery would take 4-6 hours, so we had to wait in a surgery waiting room. I am not a patient waiter. I pace back and forth, try to do something to occupy my mind but only make it about 2 minutes, and I check the monitors 1,000 times even though I know it will tell me that she is still in surgery.

After 2 hours with no update, I finally asked for one. I had given the surgery team my cell phone number and was surprised when they called my cell to update me. They told me she was stable. All of her lines were in and they did a few angiograms. They were working on the partial fix. About 2 hours later they called to say that she was done. She did great, and the surgeon would be out to talk with us.

About 30 minutes later, Dr. Superina rounded the corner. He said she did great, and showed us some imaging. Non-occluded (closed) her portal pressures were 14. When he occluded fully, they jumped to 50! Whoa! So he played around with what he wanted to do, and left it partially occluded with her pressures at 30. He purposefully gave her portal hypertension (too much pressure) so that he could force blood through her tiny, weak portal vein and all the other smaller veins to and in the liver.   Originally we talked about 2 days in ICU before going back in to fix her completely, but he informed us he was thinking it looked more like 5. Not exactly what we wanted to hear since she has to be completely sedated the whole time to avoid any movement.

It took well over an hour before we could see her. Jeremy and I both started crying the minute we saw her. It's just so hard to look at her in that condition. She has a ventilator hooked up that is breathing for her. She has an IV in one arm, an arterial line in the other arm, a central line in her neck, a catheter for urinating, and a line checking her portal pressures running through her stomach.  She is receiving over 10 medications through her various lines. Her incision is not closed, but covered. It is in the typical transplant shape (peace sign). She's going to hate it, but I am sure she will wear this scar proudly just like the others.

She tried to wake up 6 times this first evening, despite all the medications and the paralytic. Such a Macy move! They had to up her doses. They worked to get her vent set up perfectly so that her blood gases looked good, and needed to find the right dose of heparin ( blood thinner). So now it's just a wait and see what she does phase. Keep the prayers coming!

Macy's Miracle Story: Part 5 Life Goes On

So I will not pretend that I handled seeing Macy with a trach in her neck very well.  I didn't handle it well at all.  As a matter of fact, the first day I went to go see her I just sat next to her crib and cried the entire time.  The nurses just left me alone with her.  We were told that we could not hold her for 5 days until her ENT could do her first trach change.  Macy did not have a vent, but she had a humidity machine with a mask over her trach, and had to continually be suctioned. 

One week after her trach surgery, they took her back in to repair her hernia.  She did great!  Jeremy and I kept pushing for Macy to go home.  They said there were a lot of things that needed to be accomplished before we could do that.  The two main things were that Jeremy and I had to receive training on her trach care, and we had to spend the night with her to prove that we could care for her.  So we once again pushed to have it all done within a weeks time.  The trach care training was completely overwhelming.  I left that day and didn't honestly know if I could handle it.  The NICU nurse was setting up plans for us to be home such as home trach equipment, appointments with our pediatrician, follow-ups with our Riley specialists, First Steps therapies, and nursing care.  Nursing care?  We don't need that, at least that is what Jeremy and I thought.  So, against their wishes, Jeremy and I refused nursing care.  We stayed the night, took care of Macy in shifts, and after 39 days in the NICU we walked out the doors with our baby girl! 

 

To this day I have no idea how we did it!  All I do know what that is was the hardest time of our lives.  Macy had to be suctioned very frequently, even through the night.  Her humidity machine didn't last all night, and had to be refilled halfway through the night.  She was hooked up to a machine to monitor her breathing rate and oxygen levels that we carried around with us like a purse.  On top of it, we were both working full-time from the time she was 5 months old and on.  We cleaned around the trach each morning and evening doing gauze changes, we cleaned out her suction machine daily, and we did a complete trach change every Sunday evening.  Her trach straps had to be changed out often because she often vomited on them, and they would become saturated. 

Her feedings were like little marathons for her little body, she was not growing much, and she coughed, gagged, and vomited often.  Poor sweet girl......my heart broke for her!

In the first 2 years of life Macy faced 15 surgeries.  She had many bronchoscopies, hearth caths, 2 heart surgeries, and a trachea repair.  She continued to amaze the doctors after each surgery.  She recovered quickly, and went home sooner than anticipated.  She continued to drink orally, despite having a trach.  Most trach patients end up with a G-tube. 

 

 

Even though she ate orally, she didn't eat well.  She had a very small appetite.  Along with a physical therapist, occupational therapist, and speech therapist from First Steps, Macy was also seeing a nutritionist.  The nutritionist had great ideas to help get Macy to eat, but she did not grow well.  At 1 year old, she weighed 11 pounds, at 2 years old she was only 17 pounds, and at 10 years old she is still only 44 pounds.  It's crazy to think about!

Despite all of these challenges, this little fighter met all of her milestones close to when she should've.  She was walking by 15 months.  She was only about 12 pounds, and walking all over the place.  She got her trachea repaired at 1 year, 3 months, and had the trach removed permanently at 18 months.  She started talking right away!  It was AMAZING to hear that scratchy little voice that we only dreamed of hearing! 

 

 

Over the years we have battled sicknesses, breathing issues, growth challenges, and many more.  To date, she has faced a total of 21 surgeries.  Next week we face numbers 22 and 23.  It never gets easier for any of us.  All I know is that she is amazing!  She is a true fighter unlike anyone I have ever known!  One thing we have all learned is to not sweat the small stuff.  You can't....there are so many big challenges in life to conquer!  We are very proud of our little miracle. 

 

 

"AND THOUGH SHE BE BUT LITTLE, SHE IS FIERCE!"

Macy's Miracle Story: Part 4 The Unexpected

Macy was finally up to 4 lbs.  We were so excited when we came in to the NICU to see her sleeping in a big girl bed and out of the isolette.  I met with the NICU doctor to discuss what we were waiting for in order to be discharged.  She said we were waiting on Macy to grow some more (they wanted her to be closer to 5 lbs.).      One day while a nurse was giving Macy her bath she noticed an area in her groin that she brought to the attention of a doctor.  The doctor checked her out and said it definitely was a inguinal hernia.  It was bilateral, which means on both sides.  An inguinal hernia is when a small piece of bowel pushes through the wall of the abdomen.  The fix for it was surgery.      So before we could head home she needed surgery.  She also needed to slow down on the amounts of times she de-sated (oxygen drop) in a day.  Those were understandable, but we just really wanted to get her home.  We were sick of the hospital, sick of doctors, and sick of tests. We just wanted to take our daughter home and start our lives as a family.

The surgeons finally met with us to schedule surgery for her hernia.  I was very nervous because Macy was only about 4 lbs. 4 oz.  She just seemed too little to be having surgery.  The surgeons assured us that Macy would be fine, and that is was necessary for this surgery to take place.    This was it!  Once we got this hernia fixed, we were in the clear.  I was finally seeing a light at the end of the tunnel.  Jeremy and I talked about it every night before we fell asleep.  He had notified his bosses that he would be taking vacation soon to spend Macy’s first week at home.  Little did I know, those were not the plans God had in store for us.

On surgery day, we met with the surgeon and anesthesiologist.  They told us that this was a simple surgery that wouldn’t last too long.  They said they would take good care of her.  Soon after, the nurses came in and got Macy.  We kissed and hugged her.  It was a horrible feeling having someone take your child from you for surgery.  This was our first, but definitely not last surgery.
 
Jeremy, my mother-in-law, and I went to the Day Surgery waiting area.  We were going to wait for the nurse to come around with updates before we went to get some lunch.  Before she could come around for an update, the phone rang.  The receptionist told us that they wanted to speak with one of us, so I got on the phone.  The surgeon said, “We had a hard time getting a breathing tube in.  After numerous attempts, we got the smallest-made tube in.  We need your permission to have an ENT (ear-nose-throat doctor) send a scope down to see what is going on.”   I of course agreed.
 
I had a funny feeling.  It was the same feeling I’d had in my stomach all morning long.  It was this nervous, “something just isn’t right” feeling.  15 minutes had gone by so we started thinking that things must have been fine.  That is when I saw them.  Two men in white coats were walking toward the waiting area caring pamphlets and papers.  I kept thinking please don't let them be here for us!  That feeling in my stomach got heavier when I realized that one of them was Macy’s surgeon. 
 
This can’t be happening.  This is not happening.  They are not coming for us.  Those were the thoughts running through my head, but I was wrong.  They were coming for us.  They sat down and simply told us the truth.  They sent a scope down to see why it had been so difficult to get the breathing tubes down.  That is when they saw that Macy had a narrowed trachea (airway).  The ENT, Dr. Miyamoto, stated that he thought about performing corrective surgery to make it larger today, but all the doctors in the room were against it.  He said she was just too tiny, and had a heart that wasn’t repaired.
 
The next moment is one that I would like to say was a blur, but it wasn’t.  I can remember every second of it.  I can remember the feelings I was feeling all over my body.  Dr. Miyamoto said, “We feel at this time that they best thing for Macy would be to perform a tracheotomy and put a trach in.”  “No, no, no.”  I was not going to have that for my daughter.  This was not happening.  They pulled out the pictures they had taken, they pulled out information and diagrams.  They must have thought this stuff would help, but it just made matters worse. 
 
I started sobbing.  I told them that there must be another way.  We were not letting her have a trach.  I had experience with trachs.  They were horrible.  When I was in second grade, I became a buddy to a classmate who had one.  I remembered all the things that came along with it, oxygen, suction machines, no speaking, etc.  No!
 
I cried and sobbed telling them that they needed to fix her NOW.....they had to do something else.  They kept insisting that this was the only way.  I can be very demanding and stubborn.  In that moment I was both.  Honestly, I don't even believe that I could think straight.  They said she was stable at the moment, but they wanted us to sign the papers so they could put the trach in.  I refused.  I crossed my arms like a child and said they must do something else.   I can only imagine what they thought of me.  I look back now, and I feel so bad for my behavior.  I just didn't want this for my child.   
 
With tears in his eyes, knowing it was against my wishes, Jeremy signed those papers.  I don't know what he was feeling, I don't know what my mother-in-law was thinking, but my whole world, my life, my dream  for Macy felt like it was gone.  I could feel my heart breaking; I felt as if my body was shutting down.  As those doctors walked away, I felt as if I wanted to chase them down, hit them, and hurt them.  They had torn apart our lives.   I didn’t look at Jeremy.  I didn’t look at Lisa.  I was in my own world.  It was not a world I wanted to be a part of.

 

Apparently Macy was a hot topic around the hospital for a while following this.  Thankfully not due to my behavior, but because her being alive and surviving this was a miracle.  The doctors informed us after the surgery that God was watching over her for these first 26 days of life.  To this day they have no idea how she was able to breathe.  Her airway was the size of a pinhole! She breathed through a pinhole for 26 days.....she had no vent, little oxygen, and even drank from a bottle.  They informed us, with honesty, that if Macy had gone home as planned originally that even a small cold could've caused her airway to swell and close completely. She would not have survived.   God gave her that hernia, and he brought Dr. Miyamoto into our lives at the right time!  She is a miracle!



 

 

Macy's Miracle Story: Part 3 Life at Riley

I heard the phrase back then, and I've seen it with my own two eyes......"New Riley parents have that deer in the headlights look". Jeremy and I had it, and I have since seen many parents with that same look. It's the "what in the world is happening to us look", the "this isn't what we had planned look". Trust me, I had a plan. I had a birth plan, I had a plan for her first outfit, I had a plan for our first night at home. THIS was not part of our plan.

My OB came to discharge me from the hospital on the Monday morning following Macy's birth. His words were, "I am going to tell you to go home, but I know where you are going." Darn right! I headed to the hospital to see my baby! I could barely walk. I know part of the reason was due to my C-section, but some might have been from the fact that I had been in a bed for about 20 days.
Jeremy found a wheelchair and wheeled me to see Macy. She was in a module with 8 other babies. I can't even begin to describe the feeling I had looking at those 8 isolettes lined up with tiny babies in them. One of those babies was ours. We cried as we stood next to that isolette and watched her tiny little body inside. I couldn't believe this was our baby. The cardiologist met with us, and said the most important words I could've ever heard. Words I needed at that very moment. She looked me in the eyes and said, "this is not your fault." I got to touch her that night, although I longed to hold her again.  She was so tiny, and so adorable!
 
I held my baby for the second time the next day.  The nurses wrapped her all up in her blankets and placed her in my eyes. I cried tears of joy. She was so beautiful! She was a fighter!  She was amazing!
 

 

We spent the first few weeks waiting on results from genetic testing, more testing on her heart, and more answers about her overall health. In the meantime, we spent every waking minute at the hospital. I woke up each morning, and my mom drove me to the hospital. It was 35-40 minutes away. She sat with me next to her bed. I read her chart 1,000 times. I stared at her monitor, living my life for each number and beep. We left around lunch time each day so I could eat and rest. Jeremy left work each and every day at lunch. He sat next to her bed, talked to her, and gave up his lunch each day so he could see his baby girl. My mom drove me back each afternoon, dropped me off, and I once again sat with my baby. I watched babies come and go. I watched babies pass away. I watched parents give their baby their last bath, and say goodbye forever. I watched babies in their isolettes for weeks on end with not one visitor. But our sweet girl continued to flourish! 

 
Jeremy returned straight from work each evening. We sat with Macy for a few hours. We got home late each nice to a dinner that my mom had prepared for us. Jeremy's parents sat with her after that until bedtime each day. I called the NICU each night before I went to bed. They updated us on Macy. I hung up the phone each and every night crying. I cried myself to sleep each night. This poor sweet girl, this fighter, this amazing baby sent from heaven....she amazed me!

Macy was on oxygen, but no vent. She never needed a vent! She was slowly eating through an NG tube (through her nose), and at times trying a bottle.  She was doing pretty good overall. She continued to amaze everyone with her determination! She was tiny but mighty!

 

This was our life at Riley. Our schedule continued like this for about 3 weeks. They came to us and said... you're sweet girl is doing great!  She is ready for a step down unit. They wanted to transfer her to the hospital down the street.  We would be going to the IU Hospital Special Care Nursery.  We were one step closer to going home. Little did we know, home was not so near.

Check back for Part 4: The Unexpected

Macy's Miracle Story: Part 2 Tetralogy of Fallot Diagnosis

My husband quickly spread the news to family who had rushed to the hospital. He made all the phone calls to spread the good news. He also headed to the NICU and took her first pictures. All of our family got to make short visits to our little angel also.

I, on the other hand, was not doing so well. Before the c-section, they gave me magnesium to control my blood pressure. I could barely open my eyes and I was constantly vomiting. I seriously felt like I was going to die. I don’t know what death feels like, but it had to feel similar to what I was feeling. Jeremy said the nurses were extremely worried about me, and that they my oxygen level kept dropping.

On January 29th (1 day old), the doctors informed Jeremy that they heard a murmur when listening to Macy’s heart. They asked if he wanted to them do an echocardiogram to take a closer look. An echo is similar to an ultrasound, except it is on the heart. Jeremy didn’t take a minute to agree. He wanted to make sure she was ok. I remember him coming to my room to tell me that they heard a murmur, but were pretty positive that it was simply that.

Sunday afternoon was a day I will never forget. A nurse practitioner entered my hospital room carrying a pamphlet and some papers. I knew at that point that this could not be good. She was sad to inform us that our little miracle had a heart defect called Tetralogy of Fallot. Tetralogy consists of four heart defects. She had a gap between the two bottom chambers, and a narrowed pulmonary artery (the artery that pumps blood to the lungs). Due to these two defects, it caused her heart to be more muscular due to it working so hard, and caused one ventricle to work harder than the other. I was in shock. What was happening? This doesn’t happen to people like me. This happens on TV or in magazines, not to me! All of my cousins, friends, and coworkers have had children and they were fine.

At this point I didn’t know whether Macy would make it or not. They didn’t even inform us about that. They just said they were going to take her to the nearby children’s hospital to run more tests. They asked if I wanted to say goodbye. Goodbye? Was it forever? I cried and cried. I honestly can’t even tell you all the emotions I was feeling. It seriously was a blur. They knew I wasn’t in a state to walk to the NICU to see Macy, but they wanted to let me see her before they took her. They decided to wheel my hospital bed into the NICU. I vomited the entire way, but I was determined to see my little girl.

When I got to the NICU, I remember seeing her tiny little body lying in the bed. I started crying instantly. Jeremy and I had created this beautiful little baby, and she was gorgeous! I touched her and talked to her and completely broke down. When they let me hold her I didn’t want to let go. I knew the moment I did, they would take her from me. I cried and sobbed as I continued to hold her. The nurses from the children’s hospital arrived and were ready to take her. Did I really have to let her go? I didn’t want these strangers taking my baby. Finally, I gave her back to one of the nurses. I cried and reached for her as they took her away. I couldn’t look at Jeremy. I just didn’t know what I would say to him. Why was this happening to us? They wheeled me back to my room and I continued to cry. I was so worried about her.

Jeremy made the decision to leave me and head to the hospital where Macy was going. We were lucky to have his parents living so close. His mother stayed with me. His father, along with a priest from our church, traveled with Jeremy. I don’t remember much after that, my body was tired and I slept most of the evening. I remember Jeremy coming back around 11:30 p.m. He told me that things were going to be ok. He held me and we cried. We cried out of fear.  We cried due to a sense of loss.  Most of all, we cried for our sweet, innocent baby who had to face this world already fighting.

Check back for Part 3: Life at Riley

Macy's Miracle Story: Part 1 Pregnancy and Birth

I have been following many other blogs for some time now. A mom recently posted her daughter's "story". It got me thinking....I haven't sat down and told Macy's story for a very long time. Over the years, people have come and gone. There were many people present in our lives when Macy was born, but life happens. People move, jobs change, couples marry and divorce, etc. There are also many people who have come into our lives since Macy was born and may not know her AMAZING "story".

Part 1:

Despite morning sickness until 16 weeks, my pregnancy was going fine. At 28 weeks my OB felt that the baby was measuring small and ordered another ultrasound. I had my ultrasound at 29 weeks. The tech said things looked great, and that our baby was just short. Little did we know they also noted a 2 vessel cord (which was not brought to our attention until weeks later).

At 31 weeks I started to swell. At first it was just my ankles, and then I noticed my hands were very swollen. I mentioned it to a friend at work, and she suggested I go home and rest. I headed home and rested for a few hours with my feet up. After Jeremy got home we decided to head out to dinner, but I became concerned when my swelling didn't go down and I started to feel a little funny. We stopped off at my sister-in-laws medical office to have her check my blood pressure. It was extremely elevated. She checked it again, and said "go to the hospital".

The hospital checked me out, said I had preeclampsia, and put me on bed rest at home. I missed my 1st baby shower with my side of the family, which was supposed to be the next day. I was devastated.  I also missed my second baby shower with Jeremy's family.  My sweet hubby went in my place, and even dressed up for the occasion, pillow in his shirt and all.

 

 

 

Bed rest at home did no good despite me following the rules. I started to get worse. My OB then sent me to the hospital for inpatient bed rest. It was awful. I had to lay on my left side, and was only allowed to get up to go to the restroom and shower once a day. They monitored the baby hourly. Jeremy came over before work to visit me, worked a full day, cooked dinner at home, brought dinner to me at the hospital, and then spent the evening with me until about 10:30 p.m..  He did this for 15 days straight.  He was AMAZING! I knew at that moment that I had chosen the right man to marry and be the father of our children!

  One Friday evening, at 34 weeks, I started to notice blurry vision. I mentioned it to my nurses. The next morning I woke up with black spots in my vision. Neurology and Ophthalmology were both called in to evaluate me. It was determined that I had a mini-stroke due to my preeclampsia, and that the baby needed to be born immediately. I had a friend from work visiting, and Jeremy was out getting us lunch. They hauled my bed to a new room to prepare me for an emergency C-section. I had never been so scared in my life. Jeremy was extremely worried when he got back and my room was empty.

 Fortunately he was by my side when our tiny 3lb, 11 oz. miracle was born at 3:40 p.m. on January 28, 2006. She came into the world screaming! She was a fighter already!

 

 

Check back for Macy's Miracle Story: Part 2 Tetralogy of Fallot Diagnosis