Adelynn’s Story

Site created on April 26, 2020

“Before I formed you in the womb I knew you, before you were born, I dedicated you.” (Jer. 1:5)


https://www.gofundme.com/f/addysmith

Here's Addy's Story:

After nearly 7 years of trying to conceive a child and going through multiple rounds of IUIs, we were told our chances of conceiving naturally was close to 0% and our only option would be to try IVF. That was proven wrong, and all our prayers were answered, when in June of 2019, we conceived naturally. This little miracle baby would be due on March 6, just a week shy of our 8th wedding anniversary. On July 23, it was so exciting to hear the heartbeat and see the first ultrasound image. What had seemed like a dream was now real! On September 8 we found out that this new little blessing would be a girl.

Two weeks later, while enjoying a last pre-baby vacation in Maui, we received the results of a preliminary screening and were told that our baby could have possible neural tube defects. Prayers went forth for our sweet little baby and more in-depth testing was done. The doctors did extensive 3-D imaging and our prayers were answered when we learned that she was perfectly formed! However, at this time, the doctor noticed that she seemed small for the gestational age. By mid-October it was determined that she was extremely small, only in the 3rd percentile. This news was devastating and the doctors gave our precious miracle very little chance of surviving to birth. Of course, we refused to believe that because we knew, “That with God all things are possible.” (Matt 19:26) At this point, we were only 18 weeks pregnant and our doctors said we needed to make it to at least 26 weeks for our little baby to have a shot.

The pregnancy was now considered “high risk” and it was necessary to go to the doctor every two weeks to monitor the baby's growth. She never seemed to grow beyond the 3rd percentile. On November 19th, at 25 + 4 weeks gestation, Aliesha was admitted to Sharp Mary Birch Hospital so the baby could be monitored continually. After two weeks in the hospital it was determined that the best thing would be to deliver the baby via C-section even though she was not nearly big enough. Adelynn Nichole Smith was born at 5:50 p.m. on December 10, 2019 weighing 600 grams (1 pound 5 oz.) and measuring 11 inches. She was small, but perfect in every way!

“For this child we have prayed and the Lord has granted us the desires of our hearts.” (1 Samuel 1:27)

Everyone knew that little Adelynn was in for the fight of her life. But she wasn't in this battle alone; she had hundreds of faith-filled people praying for her constantly. And each time the battle got tough, the prayers went up in greater numbers. Everyone believed that Baby Addy was a miracle gift from God, and trusted that He was holding her in the palm of His hand. Little by little, Addy grew, developed and became stronger. By the time she was a month old, she hit the two pound mark! As she progressed, she was moved from an oscillating ventilator to a conventional ventilator and then to a CPAP. At that point, after waiting 7 long weeks, we were able to hold Addy for the first time!

At 8 weeks old and weighing close to 3 pounds, Addy was making very good progress, so we were unprepared, when on February 4 she began having difficulty breathing and the doctor put her back on the ventilator. Even with the help of the ventilator she had a significant decrease in her blood oxygen saturation and heart rate, resulting in the need for several minutes of chest compressions. The doctors discovered that she had an infection in her throat, so they put her on antibiotics and she bounced back. Within a week they moved her back to the CPAP.

By her due date, March 6, Addy was 4 1/2 pounds and was moved from the CPAP, to breathing on her own with the help of a nasal cannula to deliver extra oxygen. She was doing so well, and was beginning to act like a typical newborn—awake more often, opening her eyes and beginning to cry, and we were finally able to put some clothes on her. Just a week later she began struggling to breathe and was moved back to the CPAP, and on March 18th she was put back on the ventilator. The following afternoon her right lung collapsed and she began the biggest fight of her little 3 month life.

At 7 a.m. on Friday, March 20th Addy's numbers started dropping and within seconds her oxygen levels plummeted and her heart rate coded twice. Doctors worked on her for 45 minutes and then asked us, “Do you want to hold her one last time?”  Without hesitation, our answer was, "Keep going. Don’t give up on her.” At 3 a.m. Saturday Addy once again started going down. Frantic praying began again and she was stabilized more quickly this time. Around noon she was given a blood transfusion and began a steroid treatment. The improvement was rapid.

On Monday the 23rd, we left the hospital for the first time in days to get some food and air. We sat in our car crying and begging God to show mercy and to give us a sign that our sweet Addy would pull through. We went back to her room and began talking to her. As soon as Addy heard us say her name, her eyes popped open for the first time since Wednesday!

"In my distress I called to the LORD; I cried to my God for help. From his temple he heard my voice; my cry came before him, into his ears." (Psalm 18:6)

Addy continued to make very slow but steady progress and everyone was beginning to feel hopeful again. However, on Easter, April 12  she had another serious episode which started another series of setbacks. Addy became inconsolable... nothing would settle her and each day that passed became harder and harder for everyone to watch her in that condition. 

On April 22 the doctors called a team meeting with us and all of Addy's primary nurses. Our primary care doctor told us that he had done all he could for her. We were at a crossroad. Addy was always too unstable to transfer to another hospital, but we needed to make a change in order to give her a fair shot. Addy was no longer a micro preemie, and she had just “outgrown” her current hospital situation and needed to be moved to a place that was more prepared for a baby of her size and development. We asked God to move a mountain to make this happen, and He immediately answered.  Less than 48 hours later, on Friday, April 24 Addy was taken by ambulance down the street to Rady Children's Hospital (with two motorcycle cops escorting her!)

Newest Update

September 25, 2023

Journal entry by Team Addy —

Hello Team Addy!!

WOW it's been quite a long time since our last update... We are extremely sorry for this!! A lot has been going on in the last 8 months, but we will catch you up on some of the highlights :)

First of all...Addy has been doing absolutely AMAZING!! She has grown so much this year its crazy! All her features are changing and she's turned into such a little toddler :) She has continued to stay healthy even when Chris, Aiden, or myself come down with something which is such a blessing. We have been taking her to PT/OT twice a week and she is improving and getting stronger each week. Her therapists are so pleased with how well she has progressed. She’s so close to sitting unassisted and learning that her hands can be used for balancing, she’s interacting with toys much more, bringing toys to her mouth with both hands and doing so much better with grasping. She's been tolerating sensory food tastings in OT and making good movements with her mouth and tongue, which is so encouraging.

Since the last update, we have been making huge improvements coming down on her ventilator settings… for those familiar with ventilator settings, when we came home she was on a PIP 36, PEEP 8, Pressure Support 22, Respiratory Rate 20... she is now at a PIP 24, PEEP 8, PS 10, RR 10. The next step will be sprinting off the vent!! This means that we will turn the vent completely off, and let her breathe on her own... we will start small... let her go 2-5 minutes twice a day, and then work our way up to hopefully getting her off the ventilator completely during the day and have her hooked up to the vent at night. This is so crazy to think she's actually ready for this! So exciting!!

She had blood work done a few months ago and her labs looked amazing! Best they have ever been! We have been taking away meds that she doesn't need anymore which is so great. She’s completely off valium which is huge! We are currently weaning her Clonidine patches. So far she has been tolerating it great. We can see her becoming more alert, more active, more alive every single day :)

Addy and her little brother Aiden are the absolute cutest little duo. Aiden absolutely adores his big sister. The 4 of us went to the Zoo together for the first time on Aiden's 2nd birthday and it was such a special day for Chris and I. Being in a public place with both are kids was so surreal. All Aiden wanted to do was help push Addy and show her all the waterfalls throughout the zoo lol (Aiden is obsessed with waterfalls). Now that Addy is so more stable, we are very excited to do more family outings like that. Addy LOVES car rides and being outside... its the cutest. She is such a happy girl and has the best personality… Can't believe she's going to be 4 in December!! God is so good.

I will add a few more photos from the last 8 months to the photo gallery since I can only post 5 below...

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