Frieda’s Journey

Hi, my name is Leah and I appreciate you taking the time to read my brother and his wife’s story about their sweet baby girl Frieda. Wednesday August 30th my sister in law was at work and had her 2nd dizzy spell which was because of high blood pressure so they decided to induce her. This was 10 days before Frieda’a due date. After 24 hours of labor they opted for a c-section. The minute Frieda was born Jake and Amanda saw her for seconds and then was taken by the NICU Doctors and left in a room alone not knowing what was happening with their baby. Over an hour later the Doctor came in and told them that she had Cleft Palate and a “smaller chin” which caused her to not be able to breathe and get the fluid out of her lungs. She was put on a ventilator over night. Days later she got to meet with the ENT Doctor and found out she has Pierre Robin Sequence which means that she has difficulty breathing because of the Cleft Palate and small inverted jaw. They said the best option was for her to get transferred to UW Madison American Family Children’s Hospital by ambulance, and arrived on September 6th to be monitored and seen by pediatric specialists. Wednesday afternoon my brother and sister in law met with the Doctor and found out she will need a Jaw Distraction as soon as possible. Tuesday September 12th she will be having this surgery which will include her having 1 screw behind each ear that will need to be adjusted 2-3 times a day for 2 weeks. She will be on a ventilator for 2-7 days after surgery. After she recovers, she will need to re-learn to use her special bottles for her cleft palate again. She will be in the NICU for about 2 months before she is able to go home. Around the age of 10-12 months she will return to UW Madison American Family Children’s Hospital to have the Cleft Palate repaired.

As you can imagine this has been quite a rollercoaster of emotions for my brother and sister in law. They have been and will be out of work through this whole process with very little income.

Thoughts and Prayers are very well appreciated as they navigate through this tough time.

We thank for any donation or share of this story! Every little bit can help!

-Proud Auntie Leah

*UPDATE from Jake and Amanda 9-12*

Update on Miss Frieda’s surgery today- Surgery was early this morning and everything went great. ENT got a first look at her, they went more in depth than they did in Green Bay with the assessment. They did not find any abnormalities and that gave the plastics team the ”go ahead” to proceed with the jaw distraction. It was about a 4 hour total process. Frieda definitely had the royal treatment today with all the staff by her side, about 10 different nurses/ physicians in her room at the same time. After her surgery she came right back in the room intubated and she is now, until the pain calms down. They are hoping they can pull the breathing tube tomorrow, if everything goes as planned as she has no trouble breathing on her own normally. After an update from her surgeon they will start the turning process tomorrow. This means that about 2-3 times a day for about 2-3 weeks they will turn the distractors outside her mouth to lengthen her bottom jaw. The doctor explained this to us as it is like “braces in the jaw”. The metal plates will be removed in about 6 weeks. She is able to come home in the meantime, but she has to show the nurses and doctors that after the “turning process” she is capable of eating full bottles on her own, and her breathing is back to normal on her own again, especially while she’s laying on her back. The plastic surgeon definitely thinks that this will be 100% beneficial to Frieda. We are so anxious to see the outcome and know our baby will be in great hands along the way. She is a little fighter at 12 days old. I keep telling Jake that we got through the hardest part, and it will only go up from here.

Jake and I also would like to thank everyone who has either reached out to us, prayed for us and our daughter, or helped us out in any sort of way along the start of this journey. We still have a few hurdles to get thru, but today was a huge leap. It truly means the world to us, and I know we can get through this together.

9-14

Progress of her jaw distraction!

9-20

Our precious girl is doing soo well! Below I will paste the update from my brother as of today.

“At this point the only thing keeping her from being discharged is her bottle feeding. As of now she's only averaging taking 20% of each bottle. She needs to average 75% of each bottle to pull the ng tube. But the nurse told us today that we can shoot for the moon and try to get feedings up to a 75% average, but even if we can get to a 50% average they can talk to us about sending her home earlier with the ng tube in place and train us and show us how to use it.”

We are thinking that just time and practice will get her eating more from her special bottles. KEEP PRAYING!

9-29

Message from my brother and sister in law!

THE DAY WE HAVE BEEN WAITING FOR. TODAY WAS THE DAY!!!!! She turned 1 month yesterday and has never seen home yet, until today! This strong little girl has been through so much in 1 month; 2 different NICU’s, a major surgery, an ambulance ride ect. We got the news Wednesday at the hospital when the nurse practitioner and the pediatrician came into Frieda’s room and asked us , “How do you guys feel about taking Frieda home on Friday?!” We both had a rush of tears came down both of our faces. We thought it would have been at least a few more weeks until we would have been approached with that question. Prior to her leaving the NICU we had everyone sign a book for her with a special message, something that can be treasured forever. Frieda has a few more surgeries to go and some appointments back in Madison in the future, but we are just so happy and grateful that she gets to be home with us forever. This has been a very traumatic, roller coaster experience but this makes it all completely worth it in every way. Thank you for everyone who reached out, prayed and supported us in any way. You all are truly amazing and we are so grateful to have so many wonderful people in our lives.

THIS AUNTIE IS SOOOO HAPPY

10-25-23

A message from my brother and sister in law;

Jake Greenwald and I want to send out a huge thank you to everyone that has help us out in any way during this unexpected journey so far.

For everyone that got us a baby shower gift, and attended our shower we thank you so much. She has been so loved the moment we found out I was pregnant.

The love and support we have received in every way since our strong little girl made her appearance to the world is more than we ever expected. The extra support made it possible for Jake to take a lot of unexpected time off, as he did not get any paternity leave or paid vacation, made it possible to keep up with bills at home, gas money for traveling back and forth to Madison, and also to have some money set aside to help with the medical bills.

I started on thank you cards though out this time and have only gotten a small amount done. It has been in the back of my mind for over a month now to try and get them done, but with current life, appointments a few times a week, and the extra care for Frieda and her 8 feedings a day with little to no sleep, I have not even come close to finishing them.

We wanted to send a note out in leu of the personalized thank you cards, and hope you all would understand.

So thank you from the bottom of our hearts to everyone that helped us out in anyway possible. It means more to us than you will ever know.

With Love,

The Greenwald’s