2 Weeks 5 Days (and some photos)

Lillian Rose was born on September 17, 2009 (6lbs 2.8oz, 20.5 inches) fourteen hours after I was admitted to the hospital due to a drop in her heart rate at our 41 week NST.

A brief breakdown of the labor:

Sept 16 - NST at doctors office showed a decrease in the baby's heart rate and I was sent immediately to the hospital for further monitoring.

2 hours later they broke my water and started pitocin. Baby didn't respond well to pitocin, so they stopped the pitocin and let me dilate naturally to 9 cm after lots of walking, moving, swaying, screaming, and seriously painful contractions. I received an epidural around 7cm at approximently 3:30am. I dilated to 9cm and then the doctor determined it was time to re-start pitocin to get the baby out ASAP, or send me for an emergency c-section.

Lillian was positioned in my birth canal sideways with her cord wrapped around her neck. My cervix didn't center well and it was difficult to push her completely out, so she was delivered with forceps (which caused me to hurt like non other when I was recovering...).

Lillian's pediatrician was thankfully present during the entire 45 minutes that I pushed during delivery. She immediately took her to observe and placed her on oxygen. She determined that Lillian looked "Low tone" and after letting me hold her and talk to her, they took her off to the special care nursery. I had no idea what a roller coaster ride we were in for at this point.

A breakdown of Lillian's first 13 days in the hospital:

- Born Thursday September 17, 2009 at 8:32am
- IV placed in her belly button and given oxygen
- Friday I got to change her diaper for the first time in the special care nursery
- She was given a CT scan (which came back clear) and they placed an IV in her head. She was also taken off oxygen and able to take in room air.
- Saturday Lillian took her first helicopter ride to Riley Hospital in Indianapolis and placed on a feeding tube. I was absolutely devastated when they took her.
- When we arrived at the NICU for the first time, we found her laying in her warmer sucking on a pacifier (for the first time). Her nurse was Kristen and we absolutely loved that nurse!
- Sunday was the first day my milk came in. Lillian remained monitored in the NICU and we learned how to care for her during her feedings and check ups.
- Monday was her first bath and I was allowed to breast feed her for the first time. She also got her MRI that night, which came back clear.
- Tuesday was the first day we put a full outfit on her. It was pink with polka dots and absolutely adorable!
- Wednesday was the first time we heard her cry since the delivery. We were bathing her on the scale after weighing her, and she flailed her arms and let out a wail. We were happy to hear her sweet cry! This was also the first time I had ever seen her yawn.
- Thursday was the first attempt at bottle feeding. This did not go well. We met the Developmental Pediatrician and she determined we would not be feeding Lillian by mouth until she passes her swallow study in November.
- Friday Lillian was given hand splints for her wrists. We were trained on her Apnea monitor, trained in CPR, learned how to place her feeding tube, and I was able to breastfeed with a nipple shield (to monitor how much she was able to get).
- Saturday Lillian passed her car seat and hearing tests. Phil placed her tube for the first time - it was also the first time we had ever seen her cry with real tears... heartbreaking.
- Sunday I had to place Lillian's feeding tube again, never fun. Luckily we had our favorite nurse back for the weekend, Kristen.
- Monday Lillian found her fingers. She likes to suck on her hand when she's hungry now.
- Tuesday Lillian had a Sleep Study, which did not go well, but luckily they are letting us take her home anyway since she will be on the monitor.
- Wednesday we FINALLY took her home.

I know that's a lot of random information, but it's nice to keep track of the time we spent in the NICU. So far all of her genetic tests, urine screens, brain scans, and other blood work have come back clear, but her general diagnosis is Hypotonia or "Floppy Baby". We may never know what's caused her condition or if it's going to be a life long struggle for her to move and coordinate her muscles, but what we do know is every day she seems to get stronger and stronger.

We have high hopes for Lillian and intend to have her involved in Physical Therapy and Occupational Therapy as well as Speech Therapy to help with her condition. She continues to be fed through a tube at home, but we are praying for her to pass her Swallow Study in early November so we can start to feed her either by bottle or breast.

For anyone that's actually gotten through this post - I give you a gold star :)

Thanks to everyone that has kept us and Lillian in your thoughts and prayers. We ask for continued prayers for Lillian that she can recover from this condition and be able to meet the milestones of her peers with continued physical therapy and lots of love and patience from her biggest fans (us).


  1. Sare you've been through so much and handled it with dignity and grace. Your little girl is adorable and has a wonderful role model to teach her strength.

  2. It was really nice to get the breakdown of everything. I had missed some updates I think. You and Phil are already great parents to Lillian. I am keeping you guys in my prayers constantly. <3

  3. Congratulations on the arrival of Lillian. I have been concerned about you so thanks for updating your blog. She is absolutely adorable!

  4. I have been following your journey for awhile. You have been in my thoughts and prayers and will continue to be! You are such a strong woman! Lillian is absolutely beautiful!

  5. Lillian is gorgeous! I was so sorry to hear about the entire situation, but it sounds like you're dealing with it beautifully. As a physical therapist, I know that she has unlimited potential! Just remember that. :)

  6. Sare,

    You have been so strong through these last two weeks. I can't even imagine how hard this must be for you and your husband. I know that I don't know you in real life, however, I am close by, and if there is anything at all that I can do for you and your family, please let me know. Lillian is beautiful, and when she gets older, she will know and appreciate how much you and your husband love her and have done for her.

    Amanda (musictchr25 on GP)

  7. She is beautiful & I will keep your family in my thoughts & prayers!!

  8. I've been praying for ya'll since I heard the news. Congratulations on a beautiful little girl!

  9. She is beautiful! I'll keep you guys in my prayers, and I'm so glad that you got to bring home your beautiful baby! :)

  10. Congrats on your beautiful LO! Best wishes for your baby girl's next round of tests...I will pray that all goes exactly how you want them to!

  11. She is so beautiful. She is on lucky little girl to have a mother as strong as you. I'll be keeping your family in my thoughts :)

  12. She is beautiful! I am glad to hear she is getting stronger with each day. I will pray for a full recovery. ~MrsGarciatobe

  13. She is just beautiful sare! I'm so sorry yall have had to go through all this... I can't even imagine. Sending my prayers to your family & Lillian! I hope she won't need that feeding tube for much longer!!!

  14. She is just so precious. I hope that she keeps progressing well and getting stronger every day. Praying for a full and speedy recovery!

  15. Sare, I just have to say how amazingly you handled this whole situation. I am glad to hear she is getting stronger every day, and I hope the swallow study goes well so she can start to take milk either directly from you or from the bottle. You guys are all still in my prayers!

  16. Just wanted to say congratulations!
    I know how you feel we're dealing with some diffuculties with our new little girl too, born the day after yours.
    It sounds like your girl is a fighter, so great that she's able to be home with you! We'll be prayer for you guys!
    (I found you on the bump btw)



Related Posts Plugin for WordPress, Blogger...