Margaret "Maggie" Cloe Lee
Born September 4, 2013 at 4:13pm
1 lb 3 oz and 10 1/2 inches long
(Maggie was first to be transported to NICU so we were unable to get a picture of her right after she was born like we did with the other two. Here she is with her "goggles" on to protect her eyes from UV light used to help her with jaundice)
Oh Ms. Maggie... I have dubbed Katy Perry's song "Roar" your theme song as little girl, you have shown everyone what you are made of and are truly not afraid to let people hear you "roar". From the moment you were born, you have been a fighter! You continue to awe me each and every day with the amazing amount of fight in you. Whether it be your rockin' stats despite illness, beating the odds, overcoming crazy sickness, or just showing us and the nurses how feisty you are- you never cease to amaze me and I love you so much for that.
You are a beautiful girl... perfectly round little face with curly reddish hair, and big blue eyes- you are stunning. Your features are so very different from your brother and sister- you are truly you're own person although I know you gain your strength from those little angels looking down over you. I know it may be scary to be in this big bad world without your partners in crime, but know they are ALWAYS with you, baby girl...
Maggie was Baby B in-utero although she was the first born of the trio, dubbing her Baby A from there on out. She was the baby along my side and was always the "feisty" one as I called it. In pregnancy you're told not to lay on your back and if you can tolerate being on your left side, it is the best to help with blood flow and digestion. Well, Ms Thang was the baby on my left side, and she let me hear about it if I ever laid on that side... ha! I should have known what a window I had to see her true personality- I tell you, this girl is a fighter.
All 3 of the babies had significant brain bleeds due to being premature and going through the c-section surgery and 30-minute transport so soon after delivery to the NICU. Jack sustained the most severe brain bleed which he sadly did not survive, but Maggie also suffered significant bleeding. She has a grade 4 brain bleed on the left side of her brain and a grade 3 on her right side (grade 4 being the most severe). Because of this, she was very delicate from birth and we knew could possibly develop developmental impairments because of it. I remember the doctor sitting down to talk about this with us, it was a little tough to hear of the ailments and restrictions she may see in her life: cerebral palsy, blindness, speech impairments, etc... were we ok with these as possibilities?
Pete and I knew that disabilities was a risk of carrying multiples as premature labor leads to a higher risk of disabilities so we had talked about it... we seemed to agree that if God allowed us to be parents of these little ones, we would do whatever we needed to do to give them the best life possible. If that meant adjusting to their needs we were all for it ... so we answered the doctor with of course- just continue to be open with us please about what Maggie's journey looks like so we can prepare as much as possible...
Her brain bleed continues to be the issue for Ms. Maggie, but she also had a bowel issue early on called a spontaneous bowel perforation. Spontaneously her bowel perforated in a spot allowing fluid and air to escape from inside the intestines into the abdominal cavity. The day we found out about this, was another gut wrenching moment.... the attending doctor came down to our room at the hospital and said her abdomen was growing and filling with fluid. They weren't real sure the cause, but believed it would probably be best to let her go, as it would not be something she could come back from, especially with the significance of her brain bleed. Pete and I were devastated as we followed him up to the NICU to see our little girl and learn a little more about what happened. Her stats looked so good: heart rate & blood pressure steady and lungs doing well considering how little she was... was there anything we could do?
Well, we learned that they could put a drain in to see if the fluid and/or air could drain from the area, relieve the pressure in her belly, and then they also would test to see if it was a bacterial infection (like what had taken her sister Nora). They had to call around to see if there was a surgeon in the area willing to do a procedure on such a small, young baby.... Pete and I just sat in that NICU praying someone would be willing to help save her life- we just weren't able to give up quite yet.
I have to pause and say THANK YOU to Pete and the amazing team at Willow Creek for allowing us to push and get a little help for Maggie. I was a mess that morning, trying to stomach losing another baby, but Pete held it together, asked the right questions, and really had conversations with the medical team that helped save our little girl's life that day.... I am forever grateful to him for that. Thank you for being the very best Daddy... these babies are so incredibly lucky.
The unbelievable team at Willow Creek just made phone call after phone call to find a surgeon willing to operate and they found one- we were in shock and amazement. I almost jumped into the surgeon's arms when he came in that day. After successfully placing the drain, he spoke briefly to Pete and I and was on his way... like a true guardian angel looking over our sick little girl that day :).
Through the next week, baby girl stabilized and her drain was working to relieve that pressure- PRAISE GOD! We had a few more scares in those couple weeks, but she ALWAYS bounced back. She ended up having a second drain put in, but we learned that although the drains were working, she really needed surgery to repair the bowel perforation. This was not something they could do there, we needed to go to a hospital with a pediatric surgical team. The doctors again went to work talking to pediatric hospitals with transport teams close by (in Arkansas and Missouri) to see if they would take Ms. Maggie. After seeing and hearing her story, St. Louis Children's Hospital agreed to send a transport team by plane to get her.... another true miracle.
On September 20th, baby girl took her first flight... one that would truly save her life and bring her to a place where she would be with those speciality doctors that could give her the best chance of survival.
Now, I need to pause again and thank the truly AMAZING doctors, nurses, respiratory therapists, and all at Willow Creek and Northwest Medical Center who helped, fought for, and were our babies' advocate those first couple weeks. You all are unbelievable at what you do. Thank you for believing in our children and stopping at nothing to give them the best life possible. You are the most respectful, loving, courageous, and kind group of medical professionals Pete and I have ever met. We consider you angels on earth and you will forever have a special place in our hearts... thank you for fighting to get Maggie where she needed to be. So bittersweet was that day we walked out that door of the NICU. We left with lumps in our throats and our hearts a little heavy- we love you and will be back soon:).
So, here we are now at St. Louis Children's Hospital. This is Ms. Maggie's room:
Two Notes
1) yes there are A LOT of machines for such a little baby- lol. They keep her kickin' so we're cool with it :).
2) The blanket over her issolette is to keep light out... she is no longer jaundice so she doesn't have the UV lights on her and the natural light is stressful on her brand new little peepers;)
Speaking of peepers... here are her beautiful baby blues ;). Ever since she has had her eyes open she has been looking all over. The babies were born so early that their eyes actually weren't open yet... hers opened a couple weeks ago and she has been taking in this world ever since- hehe!
The past couple weeks have been amazing... and she has undergone her first surgery, a PDA ligation, to close up a valve coming from her heart that will only make her stronger and healthier before the procedure on her bowel in a few weeks. She is growing bigger, stronger, and healthier each day. This place is incredible and all seem willing to help "fix" our baby girl- we are so grateful!
Maggie... thank you for being you. You are so different from my other children and I love you so much for that- you will forever keep me guessing and I know always strong. You have defied so many odds... you are kicking butt and taken names for sure! I will tell you each and everyday how very proud I am of you. You are an incredible little lady. I know you have an amazing amount of strength within you, but I also know you're pretty "tight" with two amazing little angels who help give you the power you need to overcome so much. Jack & Nora: continue to watch over your sister. I know she will miss you both forever yet feel forever bonded and close to you- you guys are the Lee Three forever and ever. Maggie: keep your roar... it's your best quality. Love, Mommy