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Journal entry by Michelle Mely

After 172 days in the NICU, Paige is finally coming home. This journey has been the most challenging thing we have ever gone through. We have had late night and early morning phone calls saying we needed to come in quick. We have been through 5 surgeries, infections, numerous blood transfusions, being in isolation, complications from procedures, and the loss of our sweet daughter Amelia. We have had 172 days of leaving the hospital and not bringing her home. We have had days that all we could do was just sit next to them. We have laughed and have many many many tears. There have been days that we had to drag ourselves out to take a break or leave for the night neither one of us wanting to leave. The staff has been nothing but amazing helping us through this journey. The NICU is never a place we wanted to be but we have met some truly incredible people along the way. We are very excited to start this new chapter in our lives and a little nervous. This little girl is the toughest most bravest person we have ever met. We are so proud of her. She has come along way since her 1lb 4.5oz days. 

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Journal entry by Michelle Mely

This week Paige has made some huge strides. She is now on low flow oxygen at an amount that she could go home on. Everyday her lungs keep improving. 

On Thursday the occupational therapist worked with her on her first bottle feeding. She took 51ml out of 75ml her first time ever taking a bottle!!!!! 

On Friday I got to breastfeed her for the first time. She did such a good job. She latched right away a took 6ml from me at her 12:00 feeding and 18ml at her 6:00 feeding. 

On Saturday the retina specialist came in the morning and said said they her eyes are improving and this is not a surgical case. Yay!!!! They are continuing with the drops and steroids for the time being. We also got to give her her first bottle. She took about half of her feeding. After talking to the team they thought her was ready for “infant driven feedings”.  So when she wakes up and is hungry they will feed instead of scheduled feeding every 3 hours. With this change they thought she was ready to also be moved to a different nursery and last night they moved her to a private room on a different floor. This is such a huge step closer to confine home. We thought this day would never come. 
Today while at the hospital we talked to the team about the changes and with how she is doing what was the timeline looking like to transition into coming home. They said it could be as soon as NEXT WEEK!!!! 😍😁😮🤭 We we’re in shock. She still has some things that she needs to work on and we have some training classes that we need to do as well. This week we will be very busy getting the house ready and I will be spending a lot more time at the hospital to learn and get more familiar and comfortable with caring for our little miracle baby. We couldn’t be more excited for the coming days. We are in the home stretch!!!! 

Thank you to all of you for following our story and your loving support along the way. I guess the journey is only just beginning the real journey starts when she comes home!! 

Journal entry by Michelle Mely

Update on Paige’s eyes. 

At her eye exam yesterday the doctor said her eyes were unchanged from last week. No better and no worse. They are now doing IV steroids for a few days and then will move to oral steroids along with the drops every 2 hours. The retina specialist is going to look at her on Saturday morning and we will go from there. 

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Journal entry by Michelle Mely

This week has been busy for our little miracle. 

Last week on Tuesday she had an eye exam to check in her after her laser treatment the week prior. She had a lot of fluid behind her retina which was very concerning. They said to up the steroid drops to every hour and they will recheck her today. It the drops don’t work they will have to do injections around the eye and if it still persists and doesn’t look any better she will need surgery on the back of her eye. We are keeping our fingers crossed that the drops will take care of the problem and she won’t need another intervention. 

They have consolidated her feeding down to 30 minutes which is a normal feeding time. She seems to be tolerating it well with minimal spit up. 

She is now off CPAP!!! YAY!!!!! And now on high flow oxygen. She is currently at 5 liters and they will have to ween her down to below 2 liters to move to low flow. She is tolerating the change well. 

Journal entry by Michelle Mely

Paige’s eye surgery went well. The results are not immediate so she will need to be watched closely for the coming weeks. They were able to extubate her and resume feedings later that afternoon. She was able to get back to where she was prior to her surgery within a day. They also started to consolidate her feedings today. So instead of a continuous drip they are taking what she would get over the course of 3 hours and giving it to her  in a 2 hour time span. They will slowly ween that to be a normal feeding time (30 minutes). They have also been able to ween her cpap. She is getting close to getting off cpap and going on high flow oxygen. Once this happens we can start working of her oral feedings. 

Journal entry by Michelle Mely

I am sad to inform everyone that unfortunately Paige needs yet another surgery. This time for her eyes. Last week we were told that her right eye had worsened and they wanted to look at her again this week. We were hopeful that it could have corrected itself with the fact that she had just had surgery the week before. She had a repeat exam yesterday which showed that is was more worse than the week before and she was calling the retina specialist to come and look at her within the next 24-48 hours and that she would need some sort of treatment done in the next few days. Today we found out that they are recommending that Paige has the laser treatment done to stop her vessels from growing any further at the risk of retina detachment. She will have to be completely sadated during this which means she will need to be reintubated. The team is hopeful that they will be able to take it out soon after she wakes back up. With where she is at with her vision now she will definitely have some tunnel vision and most likely be nearsided. She will most likely need glasses at a young age. The surgery is scheduled for tomorrow morning. 

Journal entry by Michelle Mely

Paige has been doing well post surgery. There was some redness that they were watching which had now receded. Today they extubated her and she is back on cpap on settings close to where she was prior to surgery. They are even staring feeds tonight. It will be small amounts slowly 1ml every hour. Everyone has been pleased with how she is doing.

Journal entry by Michelle Mely

Yesterday was the big day. Paige had her reconnection surgery and G-tube placed. It was a very long surgery over 7 hours. They said all and all it went well. She had a lot of scar tissue which was to be expected. Working at loosening up her scar tissue was what took the most time. They ended up finding a cyst on her right ovary which they drained and on the same side her Fallopian tube had adhered on to her intestines. We are not sure how well her reproductive system will work due to the surgeries, injury and infection that have occurred. She will also be at risk for having a bowel obstruction for the rest of she life. Next step is letting her rest and recover. She will be on a ventilator for hopefully a week of less. They will be watching her closely for infections and managing her pain. Overall she is doing ok.

Journal entry by Michelle Mely

It has been a busy week for our little girl.

Monday she had some labs drawn and they found that her liver enzymes were elevated. We mentioned that the last time this happened she ended up having a UTI. They ended up doing more tests and on Tuesday night at about midnight we got a call saying that she did have a UTI and they were starting antibiotics.

Tuesday she had a upper GI study done to look for any abnormalities, look for signs of reflux, and to have better knowledge going in to surgery for the placement of her G-tube. There were no abnormalities and no signs of reflux. She also had an eye exam done. And her eyes are staying stable. They still think that she might need laser surgery for her ROP(Retinopathy prematurity).

Wednesday she had a stress test done to see if she can produce they right amount of hormones to help under stress. This was to see if she will need additional support during and after surgery. This came back normal so she won’t need any additional meds for this.

And lastly her surgery is scheduled for Tuesday morning to reconnect her intestines and place her G-tube.
Michelle’s Story
This is the start of the story for Amelia and Paige Mely.

I went to my regularly scheduled ultrasound on Tuesday June 19, 2018. The ultrasound was to recheck a few things that they could not see from 20 week anatomy scan done on May 24, 2018. During the recheck ultrasound they noticed that baby A’s feet were now down low and was making it hard to see my cervix. Because of them not being able to see my cervix they decided that a vaginal ultrasound was necessary for them to see. During that part of the exam they saw that my cervix had started to open and the fluid sac was starting to protrude out. At this time the doctor came in and talked to me about getting admitted to the hospital and wanting to monitor me for signs of labor. They said with what they were seeing that I was at high risk for preterm labor and could likely deliver the twins soon. I called Adam right away and he was able to be there within an hour. I was showing no signs of labor but during the ultrasound they could tell that I was already dilated to about 2cm. Since I was only 23 weeks and 6 days they told me that the Maple Grove Hospital doesn’t take babies under 26weeks and that I was going to need to be transferred to another hospital. We chose to come to the University of Minnesota Fairview where I was transported via ambulance. When I got there they hooked me up to fetal monitors and and had me started on an IV. At one point I felt what might have been having a contraction and a very full bladder. When I went and used the restroom I noticed some discharge and bloody mucus as well. This was all a concern for me to go into preterm labor. They had the doctor come in and perform another ultrasound to see if things had progressed. She did notice that I had dilated more and she could also see feet and a leg of baby A down in the sac that was protruding out of my cervix. We tried very hard to get through the night and into morning so I could get the second shot of steroids for lung development. But against all of our efforts I started to show more signs of going into labor. The doctors recommended that we needed to do a c-section as soon as possible to protect the health of the babies. They started the process of prepping me and getting everything ready for me to have the surgery. Once they brought me back they said that they would try once for a spinal block if they couldn’t get it they would knock me out and Adam would not be able to be there during the surgery. Thankfully, they were able to successfully administer the spinal block and Adam was able to join me and witness our 2 beautiful miracle babies being born. Baby B was born first at 12:48am on June 20 weighing 1lb 8oz. Her name is Amelia Jane Mely. Baby A was born next at 12:49am weighing 1lb 4.5oz. Her name is Paige Ann Mely. After they were born they each had their own team of doctors working on them. I was able to hear Amelia cry for a second and I heard that Paige was kicking and moving pretty good. While I was getting stitched back up they did bring Amelia around and Adam and I were able to see her for a minute before they went off to the NICU. I did not get to see Paige after she was born. Once I was done with the surgery and out of the post opt they did bring Adam and I to see the girls where we got to see Amelia again a little closer and meet Paige for the first time. We were both able to touch Paige for a little bit. As of now I am in recovery and the girls will be in the NICU most likely till their due date which is October 10th. That may change. We will do our best to keep everyone updated. Please pray for everyone at this time.

Here is the link for the Go Fund me page that was set up for our family: