This is the story of my daughters beginning to life and why she is a feisty fighter!

Two month after my husband and I got married we got the unexpected news we were pregnant and expecting a baby girl. My pregnancy was a breeze no complications until one day I felt abnormal pain. Thinking it was heartburn I went to work. Later in the day I called the doctor and they said to come in. Turned out my blood pressure was high and they sent me to the emergency room.

Once we got to Labor and delivery we ended up waiting in the waiting room for a while and the pain increased. Once they took me back they checked my blood pressure and rushed me to icu.  I was put on medication to prevent me from having a seizer. The next 3 days was medication, changing hospitals due to conflict with insurance and preparing for birth (I was diagnosed with severe preeclampsia). I was at risk for stroke, seizers, and liver damage. I was only 26 week along. November 23rd they started to soften my cervix so we could have a natural birth because she was in position because the medication wasn’t helping me anymore and I was at risk of liver failure. After hours of waiting in labor and delivery we welcomed Lydia Grace into the world via emergency C-section at 10:10pm.  She was born weighing 1 lb 9oz and was breathing on her own. She even cried!

After delivery I was put on heavy medication so I didn't have a seizure and could not see my beautiful daughter until she was 24 hours old but she was doing well breathing on her own.

Now we were thrown into the NICU world. We quickly learned the routine of scrubbing up, all the beeping noises and what each beep meant, the lingo, and that we had a long road ahead of us. Lydia did great in the beginning that is what they called the honeymoon phase.  Breathing with a little help! Unfortunately she had bleeding on the

brain. She had a stage 1 on the left and stage 2 on the right. It was something they kept an eye on. A couple weeks after being released from the hospital I was back in the ER because my blood pressure was not coming down but after medication adjustment I was released.

One day when we were on our way home after visit Lydia my phone rang and it was the NICU saying we needed to rush back to the hospital she wasn’t doing well. Once we reached the hospital I received another phone call saying she was doing better but I went to the NICU to see what was going on. I found out we lost her for a couple minutes and she was resuscitated. Her lung collapsed due to pneumonia. A chest tube was placed because she had fluid and air pockets around her lungs. She also had a pneumothorax/hole in her lung. She was diagnosed

critical ill! She was placed on an osculating ventilator and oxygen help her breathing. She also had a PICC line iv which got an infection. They had to take it out and put in a broviac or central line, which is an iv that went in her upper chest into a main heart artery.

We spent Christmas and New years in the NICU!

She eventually got better and after 29 day I could finally hold my daughter! She was taken off the ventilator 12/31/14. She is now diagnosed with chronic lung disease.

Lydia would show her feisty side. She would pull out her feeding tubes. She wore her first outfit 30 days after birth. She would have something they called bradys where she would forget to breath. Sometimes she would start

breathing on her own but sometimes she needed to be stimulated. She did fairly well with gaining weight and tolerating her feedings. I returned to work in January, so I would go to work in the morning and straight after work would travel to the hospital to visit the munchkin for a short period of time before I would have to go pick up my husband at work. This schedule consumed my life for her entire NICU stay. I only missed 2 days visiting her during her NICU stay.

On 1/12/15 she was working hard to breath and they decided to place her back on the ventilator. She had fluid around her lungs. They started her on medication for acid reflux hoping it would help the swelling in her throat. She was taken off the ventilator a little over 24 hours later. Shortly after having the ventilator taken out she began wheezing. Doctors thought it was just swelling in the airway and the reflux medication and breathing treatments should help.

Almost 2 months after birth is the first time I heard her cry during an eye exam. Lydia was bounced around on different types of oxygen support. She was on MPV which gave her breaths of air, CPAP which gave her some pressure in the lungs but she has to breath, Nose cannula (high and low flow) which she has to do all the work to breath. On 1/23/15 she drank out of her first bottle. She drank 4ml! Her wheezing (stridor) continued and a Ears Nose and Throat(ENT) Doctor came to do a bedside scope to see what was causing the wheezing. ENT said her vocal cords were swollen and she needed time to heal. Her wheezing didn’t improve so by the end of January they started her on a steroid and if nothing improved Lydia was going to be transferred to Childrens Hospital. On 2/2/15 I ended up in the emergency room because my C-section incision opened at work.

February 4th, 2015 she took her first ambulance ride to Childrens Hospital a couple blocks away. When we arrived at Childrens the EMT decided to weigh her medical file and not shocking it weighed more than she did. She was finally in an open crib and holding her own body temperature.

The ENT doctors at Childrens did

a “full” scope which involved anesthesia. They also gave her heavy duty acid reflux medicine. During her scope ENT dilated her airway with a tiny balloon and stated there was minor swelling but diagnosed her with subglottic stenosis. She required steroids and breathing treatments and extra breathing support after her scope. When we were at the last hospital they were continually checking her eyes for ROP (Retinopathy of prematurity) which is where extra blood vessels grow in the eye and can cause a detached retina if it progressive to stage 3 or 4. When we got to Childrens she was diagnosed with stage 1 zone 3 ROP which is something they checked on weekly. During the first couple weeks Lydia did well. They tweaked her feedings and she gained weight. She also battled acid reflux, spitting up, and constipations. At the end of February they scoped her again and unfortunately the dilation that ENT did during the previous scope retracted. Her airway was still very small and swollen, so ENT did another dilation and planned to rescope in 2-3 weeks. On the same day we got good news that her brain bleeds resolved and were gone!

At 98 days old Lydia reached her original due date and she weighs in at 6lbs 10oz. At 100 days old she had a EKG which showed she had a PDA Patent ductus arteriosus and a small hole in her heart.

Between scopes they worked on weaning her oxygen support and working on increasing feeding volume with her. She came off oxygen for a couple of days but then began working hard to breath. 3/12/15 Lydia finally was well enough to move out of the intensive care unit and into the step down unit. Her breathing and wheezing seemed to improve. On 3/19/15 Lydia got scope number 3. Sadly her dilation retracted again, so ENT is going

to dilate again and make a small slit in her airway to hopefully widen her airway. Unfortunately she needed to be ventilated for a couple of days to heal. After her little surgery on her airway she was back in intensive care. Her blood pressure raised and heart rate skyrocketed. Her blood sugar levels were high, her breaths per minute increased, she had a fever, and was just not herself. They did a full workup to see if she had an infection. After treating her with antibiotics, suctioning her very frequently, giving her fluids and letting her rest she began to improve. She had a upper respiratory infection/sepsis. So her 4th scope got delayed because she was sick. After being sick for a week Lydia was finally taken off the ventilator and not on any oxygen support. At that point the doctors wanted to focus on feeding with Lydia until her next scope on 4/13/15. She unfortunately is still wheezing and working a little to breath, but we moved back to the step down unit.

In the beginning of April talks about Lydia getting a g-tube/feeding tube started. She was not progressing with bottle feeding and just seemed uncoordinated, so we decided for her to get the g-tube the same day of her next scope. The gtube would allow her to come home and we could work with her on bottle feeding on our own time in our own way. The g-tube is a tube

surgically place in her stomach and allows us to feed her by pump or gravity. A couple of days before her scope ENT mentioned that she may need reconstructive surgery for her airway so we need to be prepared, which we ended up scheduling for April 13th along with her scope and gtube procedure. April 13th came and went they had to reschedule her scope/gtube surgery because the OR had more critical cases. Two days later she had her gtube place and had a nissen procedure which is where they take a part of the stomach and wrap it around the stomach sphincter to help with acid reflux. They cancelled her reconstructive surgery because she had swelling/irritation in the area where they would take the cartilage graft from.

ENT said at her first scope she had stage 1 subglottic stenosis with 40% obstruction of her airway. At her 2nd scope she stayed about the same and at the 3rd scope she digressed to stage 2 subglottic stenosis with 50% obstruction of her airway. With her 3rd scope and the slit they made in her airway they saw improvement. So during her 4th scope they were able to dilate her twice and get her to 26% obstruction of her airway which is the best she had ever been. Hopes were high that she would not need reconstructive surgery.

A couple days after surgery she was off oxygen and healing great. Each day they worked on her feedings with the gtube. She quickly got to the rate/dose she needed to be on at home. We were educated and trained on gtube care. ENT was planning on scoping her again and decided she was progressing nicely and we could be discharge. After 150 days in two different NICUs we could finally bring our little girl home. Born at 1lb 9oz she was just over 10lbs when she was discharged.

She overcame

a lot during her NICU stay. Digestion and feeding issues, low blood counts, collapsed lung, pneumonia, IV/Picc lines, chest tubes, blood transfusions, oxygen support, weight lose, acid reflux, swollen vocal cords, sepsis, subglottic stenosis, 2 surgeries, 4 trips to the OR, and more. Every day after work I travel 30 mins to the hospital to visit my feisty fighter. She is truly a miracle the doctors told us 50% of babies born at 26 week gestation don't make it. GOD has big plans for this little girl and I can't wait to find out.

Lydia has done great since she was discharged. She is working on rolling over and getting better head control and we started to get a routine. Until we got the reminder that brought us back to reality. She was not herself and we took her to the ER where we learned her o2 levels were extremely low due to a cold and secretions. Having a small airway any secretions or blockages are not good. So Lydia spent 3 days in Childrens Hospital weaning off o2 and getting over the rino virus/ common cold. A week or so after her hospital stay we went to see ENT and they wanted to scope her. A couple of days later we went in for the scope which ended up getting rescheduled because she was still recovering from her cold. Finally a week later she was healthy and ready for the scope. We came to Childrens for her 5th scope and ENT said her airway is not improving and we needed to do the reconstructive surgery. Lydia stayed the couple of days between her scope and surgery because she required oxygen support.

This reconstructive surgery was more invasive then the scopes ENT has done. They needed to put a PICC line in because it is hard to get an iv in her. So she had to go to the OR to get the PICC line in the day before surgery. Before the surgery they scoped her for the 6th time. The surgery took a total of 2 ½ hours. They took cartilage from near her voice box and opened her airway to place the cartilage to widen her airway. She had an opening with a drain on her

neck/throat. She was placed on the ventilator for 5-7 days to allow the cartilage graft to heal and stent her airway to a wider size. During this time she was on paralytic to prevent her from moving and she was also on a sedation medication to keep her calm. 6/22/15 she will have her 7th

scope to see how the reconstructive surgery went and how she is healing.