Surgery #2

So you may have remembered my update on our Rae back in January. Well I'm here to update you again all the business that is Raegan Phair.

So back in January we were needing to get a sleep study done so they could "prove" she still had sleep apnea and tonsils needed to come out. I spent so many afternoons during nap time trying to get a hold of anyone who could get us in for a sleep study before March. FINALLY we got the call that they could get us in, but it was last minute for that evening. We needed to get it done so we did. 10 weeks pregnant, still nursing Hudson, and just plain exhausted, Rae and I headed to the hospital for her sleep study.

Sleep studies are just stressful. She didn't fall asleep till almost 9:30pm and she struggled with being ok with all the stuff on her face and head.

She kept waking up because when she'd roll over she'd get tangled in the wires. Then if anything got unhooked the sleep study techs had to come in, wake her up, and re-hook it. We didn't sleep much. The study ends around 6:30am then we headed home. She went to school like it was a regular day.

Then we waited. And waited. I finally called after 4 weeks for our results and she did indeed have sleep apnea. Something we already knew, but it was done and results were finally in. We scheduled her tonsils and tubes for March 16.

During all of this I had been working with insurance to get her speech/feeding therapy covered for in home therapy. After having doctors send in documentation they approved her in home therapy. This was huge as I knew it would be tough getting her and Hudson out of the house 3 times a week.

We started therapy the week before surgery and decided that she would have speech therapy twice a week and feeding once a week. She loves her therapist and we are so grateful for that!

Surgery day was finally upon us and we were ready to get it done and over with. The waiting room had bene redone since her palate repair with table booths and TVs. It was nice while we waited to go back for pre-op.

The tubes are the easy part, but the tonsils we worried about. Her ENT explained that since her palate has been compromised by the cleft it's very weak and he didn't want to take too much of her adenoids and not leave any muscles to support the palate. Fortunately the surgery went perfect, the palate was supported, and we were ready to start recovery.

Rae struggled coming out of anesthesia. She was wheezing and her oxygen levels wouldn't stay up. They had to do a few breathing treatments and eventually her breathing went back to normal. Sitting in post-op was so hard. She just cried and cried. She was very agitated and nothing soothed her except me singing to her. She did finally eat some popsicle and we got a silly picture from her.

They finally got us into a room and she took a much needed nap.

When she woke up she was back to her old self. She wanted milk and to watch Goldie and Bear on the ipad.

The IV annoyed her and she was so happy to get it out the next day before we went home.

We spent the night in the hospital and went home the next day.

She really did great the whole weekend! We stayed on top of her advil/tylenol rotation and thought we were out of the woods.

Then Monday hit. And so did the stomach bug. She threw up in the afternoon (in the car, bleh!) and we thought maybe it was just the medicine upsetting her stomach, but by that evening, I was starting to feel sick, and at 9pm she started throwing up again with a fever. I called her pediatrician and the nurse line at the hospital. They said as long as she wasn't throwing up blood we just needed to keep her hydrated. So we did. Then around 1030pm, the bug hit me. I threw up all night. Rae slept in the bed with me and would only go to me. So she and I spent the night running back and forth between the bathroom and the bed. Fortunately Kyle's parents took Hudson the next day and we were able to rest. Kyle and Hudson never got it and it was a short lived bug.

After the bug left the house, Rae struggled with pain. She was up every 2-3 hours every night crying. It was like having a newborn all over again, but once day 10 hit, we finally got over the hill. She was doing so much better.

Her speech is improving and so is her eating. She is gaining weight like crazy and eating everything! We've even dropped her feeding therapy as her therapist things her "picky" eating is behavioral and not a texture disorder like we originally thought.

I am hoping that we are done with surgeries for awhile for Rae or any other Sanderson kid. 3 surgeries between Rae and Hudson in 3 years is enough for this mama.

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Cleft Palate Surgery

The day finally came. I could barely sleep the night before, but it was finally here. 9 months in the waiting and it was time.

We woke up and headed out around 6:30am. We had to be at the hospital by 8:30am and the hospital was downtown and we knew we would be hitting traffic. So we left with plenty of time to get there and even stop by Chick-fila. This mama bear needed some chicken minis and a DP, pronto!

We got to the hospital around 8am with plenty of time and headed to admitting to get checked in. Once we were checked in, they sent us to the waiting room to be called back for pre-op along with everyone else who was there for surgery that day.

Ugh. This part was terrible. Raegan hadn't eaten since 11:30pm the night before and she was a bit cranky, but not too bad. We were waiting for about 2 hours when they finally called us back. They weighed her and our doctors came back to talk to us one of time, which was so nice for this anxious mama's heart.

Our ENT came in to discuss the bronchoscopy they would be performing to check her airway before doing the cleft repair. Due to her PRS (Pierre Robin Sequence) diagnosis, they worried that her airway would be difficult for them to intubate and possibly extubate her after surgery. They said she could possibly need to stay intubated if she couldn't handle breathing on her own. Fortunately, her air way was considered "normal". Thank the Lord! He came out and updated us during surgery and it was such a weight lifted.

 She was all smiles for the most part. Always her sweet self with a little tad of cranky, but I would have been too if I hadn't eaten in 12 hours.

They took her back to the OR and she went willing to the nurses. Of course. She loves everyone. Kyle and I lost it. I couldn't keep it together. I couldn't protect her anymore. I wouldn't be there when they put in the IV or when she woke up from surgery. It broke my heart.

Then the wait began. Thankfully the nurses updated us each hour and they actually finished the surgery early. They sent us up to ICU and again we waited until they brought her down.

Surgery went perfectly!

They finally came to get us and as soon as we entered the ICU, I heard her crying. Then I started crying. A nurse was holding her and as soon as Raegan saw me, she reached for me and this momma's heart grew 2 sizes. We were finally reunited.

Can you tell how happy I was?

She was very swollen and in a lot of pain. 

At one point I just couldn't handle it anymore. Watching her cry in pain was too much for me. My sister took her and rocked her and sang to her. I am so thankful for her. Right when I couldn't be strong, she stepped in and took over. I am so lucky to have her as a sister.

I sang "Our God" by Chris Tomlin for hours. The words were encouraging to me and the sound lulled Raegan to sleep each time she got upset.

But once we got her some pain meds she slept most of the afternoon and evening.

The evening and night time were very tough. She wanted to be held constantly, but wasn't sleeping well because she felt terrible.

Kyle and I switched off back and worth holding her and sleeping in the chair. I would say we got maybe a total of 2-3 hours of sleep.

We tried getting her to eat but every time the bottle went into her mouth and she sucked, she pushed it away. Finally around 4am she started eating again. And by 7:30am our sweet love bug was back!

Her energy levels were back up and it was almost like she never had surgery. She even started pulling off all her wires. We couldn't keep her still. She was all over the place!

We were expecting a weekend stay in the hospital and now they were talking about letting us go home!

Her doctor stopped by, checked her out, and said if we wanted to we could go home. He wasn't surprised by Raegan at all. He knows she's a strong one!

So we went home less than 24 hours after surgery. We were shocked, but knew God was the reason why. We are so grateful for all of the prayers and well wishes.

She is definitely a little warrior!

Every day that passes she gets better and better.

Our next obstacle is that her cleft doesn't open back up. Our post op is in 3 weeks. If it doesn't open up in that time, than it never will. There's a 17% chance that it could open back up. Please pray it doesn't.

And to make things even more fun, we are 4 days post-op and she's trying to take her first steps. 

How is she old enough to do this?

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I Will Gladly Serve

Last night while reading Raegan her bedtime story from her The Beginner's Bible we read the story of Jesus healing the blind man.

As Jesus was walking along, he saw a man who had been blind from birth. “Rabbi,” his disciples asked him, “why was this man born blind? Was it because of his own sins or his parents’ sins?”

“It was not because of his sins or his parents’ sins,” Jesus answered. “This happened so the power of God could be seen in him."

My eyes immediately welled up. 

Amazing how God' s word does that to you.

From the beginning I've always said that God's purpose through all of this was so that God's glory could be shown.

We are infertile to bring God glory.

Raegan was born with a cleft palate to bring God glory.

But only if we allow our story to.

Kyle and I could cry and lament about the trials that we've been through and how God has abandoned us in our time of need, which I have felt sometimes, but that's not what God calls us to do.

Trust in the Lord with all your heart; do not depend on your own understanding.

Seek his will in all you do, and he will show you which path to take.

Proverbs 3:5-6

God calls us to trust in Him with ALL our heart! That has been hard for me at times. It was hard when we lost our baby. I was angry and I was frustrated that He would give us what we had been wanting and take it away just as quickly.

I turned away from God after our loss. I admit it. I didn't want anything to do with Him, but during that time God was molding our story so that His faithfulness would be shown.

Cue Raegan.

She is the definition of God's faithfulness and her story shines His light daily!

I get goosebumps thinking about all of the times that I've been approached by friends who are blown away by our/her story. From the beginning of IVF through her cleft palate repair, God has been present.

I am so proud of my daughter's story. 

I am proud of our infertility journey.

Because in the end, God's glory is what matters. 

And if we can take part in His amazing plan, just a little bit, I will gladly serve.

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Cleft Palate Update

Well this is it. We had our HUGE doctor's appointment with Raegan's team last Wednesday.

Our appointment was at 8am in downtown Dallas. Our house is about 45 minutes away, but with morning traffic, it takes double that time. So we left our house at 6:30am which was tough on Raegan because she normally sleeps until 8-8:30am. She fell asleep right as we pulled into the hospital. Great.

The point of this appointment was to allow every part of her team to meet with us. This appointment last hours. HOURS! 

Raegan was a champ, for most of it. She was crawling all over the room and wanting to be into EVERYTHING! It was tough listening to the doctors when she was crawling all over me. But we made it through.

After all our appointments our ENT sent us to Audiology for a hearing test. During our meeting with the ENT she said she had fluid on her ears which is to be expected with a cleft palate baby since their ear canals are smaller and she's had a cold for about a week. 

So off to audiology we went. She checked Raegan's ears again and confirmed fluid on her ears. Then she did a hearing test. She had Raegan sit in my lap in a booth. There was a clear glass looking out where the audiologist sat. There were a set of speakers on either side of us and she would talk to Raegan through those. Raegan responded each time to her voice, but when she started doing just sounds, Raegan stopped turning to look at the speaker. My heart just sank. I had noticed recently that I was having to say Raegan's name multiple times before she would turn to me, but I didn't think anything of it.

After the test she said Raegan showed signs of mild hearing loss. This is to be expected of cleft palate babies which is why they suggest doing tubes in their ears during their repair surgery, which we are doing. She didn't seem too worried since Raegan passed her newborn hearing test and had a cold at the time of the test. She said we would retest 8 weeks after her surgery. I am praying the results come back perfect. I don't want anything else to get in the way of her developing normally.

Her surgery has been scheduled for April 30 and we will be spending at least 1 night in the hospital, maybe more. With Raegan's diagnosis of Pierre Robin, she is at a higher risk of complications after surgery. Her airway is small and since they are closing the cleft, it will make her airway smaller. There will also be swelling after surgery which may cause her to struggle with breathing. So her cranio-facial surgeon (who is doing the cleft repair) wanted us to be prepared for her to be in the ICU and to also possibly stay a few days compared to 1 day like other cleft repair patients.

I will try my best to do a quick post after her surgery to update everyone on her progress. Prayers that the surgery would go perfectly, there would be no complications, and that her recovery is quick.

For years I prayed for this child. For years I begged God to give Kyle and I a baby. And now we have her. No matter the struggles we have had or will continue to have, I wouldn't trade her for anything. God gave us her because He knew we could be strong. But we are only strong because of Him. He has given us the strength to push through when we felt weak. Only through His amazing guidance and grace have we gotten where we are today. I was meant to be this little one's mama bear and I wouldn't have it any other way.

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Friday Happenings

Another week has passed and the weekend is here! Hallelujah! Here's what went down this week.

First off, this blondie is now a brunette. I'm a natural brunette and honestly, it's just easier! So I'm a brunette until further notice.

This little chunk turned 8 months old. Where has time gone?

We met with Raegan's surgical team on Wednesday to discuss her cleft palate repair surgery. I will write a more in depth post later, but her surgery has been scheduled for April 30. This momma's heart is already nervous.

Raegan has also added to her vocabulary! She is now saying momma and Coco. My sister was beyond thrilled!

Raegan and I headed to my parents for the weekend while Kyle is in Miami for a bachelor party. Oh and don't worry. There were at least 3 more bags behind all of these bags. It took forever to pack up! 

This is Raegan's first night away from home and she went down pretty well! My mom took the baby monitor before bed tonight and told me to sleep! I am so stinking excited to sleep as late as I want and not be woken up at all!

Hope everyone has a great weekend!

Linking up with:

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Where We Always Fall

Since we began our infertility journey, we have always fallen into the small percentage. 

Whether it was a good or bad thing.

30% chance Kyle's surgery wouldn't work. 

It didn't.

1-5% of getting pregnant on our own.

We did. 

20% chance of miscarrying.

We lost our 1st baby.

1 out of 2000 babies are born with an isolated cleft palate.

Our baby has a cleft palate.

1 out of 14,000 babies' cleft palates are linked to a syndrome called Pierre Robin.

Our baby has isolated Pierre Robin Syndrome.

1-5% chance of having another child with a cleft palate or Pierre Robin.

Only God knows.

I am scared out of my mind for our future children. We saw a geneticist for Raegan and they did genetic testing to rule out any other syndromes that go along with Pierre Robin and a cleft palate.

Her results came back normal.

They tell me not to worry.

But how can I not. Every time someone gives me the "chances" of something and end the statement with "but don't worry it's a small percentage," I can't help but scoff.

I believed what they said so many times and then we would fall into the "small percentage" yet again.

I try not to focus on all of the small percentages we have and may fall into in the future.

Because one of the best percentages we ever fell into, was the 60-70% chance of IVF success.

In the end, she is worth all of it.

11

Birth Story Part 2

**please be warned, this is a long post! I did my best to give the short story, but it was tough!**

After a long labor we finally had our little girl to hold in our arms! Within 10 hours though, our world was turned upside down. The pediatrician came in to do her assessment of Raegan around 11am and as she was looking her over she said the words,

Did they say anything about Raegan after she was born?

Um, no.

Raegan has a cleft palate.

Come again?

We have been through the ringer to have this baby. We had to do IVF. I went through 28 hours of labor, 8 of which were completely natural on pitocin, and it all still ended in a c-section. Nothing was going according to plan and now you're telling me my baby has a cleft palate?

I cried as I held her, saying over and over "I'm so sorry, I'm so sorry baby." I couldn't protect her anymore. She was no longer inside of me, safe from harm.

The doctor said the birth team must have missed it when she was born because it was far back in her mouth and very small. She showed us with a light and there it was. A tiny little cleft that was literally tearing me up inside. She shared with us that it could be fixed with surgery once she was older.

I honestly don't remember much of what the doctor said after that. I just kept crying and holding her close. Little did I know this was just the beginning.

The pediatrician left and we shared with our family Raegan's diagnosis and knew it was just a small bump in the road. We had been through much worse before. We continued our day of loving on our baby. She got her first bath, Kyle changed his first diaper, and we put her in her first outfit.

But that evening around 5pm, Raegan had trouble breathing. When babies who are born caesarean, they sometimes have mucus in their stomach that was expressed since they didn't go through the birth canal. They had told us about this, but when my baby started gasping for air and started turning blue, I lost it. I still had my epidural in and couldn't move. My mom scooped her up and Kyle took the bulb syringe and started suctioning the mucus out of her air way. They cleared her airway and she began breathing normal again. We called the nurse and she came in and took Raegan to the nursery to be looked over.

After about 30 minutes, I called the nursery and asked them to bring her back to me. The nurse came in, but she didn't have Raegan. She shared with us that they found out she has jaundice and she would need to stay in the nursery overnight to be under the light. They would bring her to me every 3 hours to feed, but she would have to stay there for now.

Alright, cleft palate, and now jaundice. We have to be done right?

They brought her to be every 3 hours and we tried to nurse, but she wasn't catching on. Part of having jaundice is needing adequate nutrition to help your liver flush out the jaundice, but baby girl wasn't eating. So they had to put a feeding tube in. And protocol is if a baby needs more than 2 feedings through a feeding tube, they have to be admitted to the NICU.

So the next time I saw my baby that's where she was. I stood and cried by her crib side as she sat under the lights with a food tube in her nose.

Since Raegan had a cleft palate we found out she couldn't eat from a regular bottle or the breast because the hole in the back of her mouth wasn't covered when she swallowed. She needed to learn to eat from a special bottle that had a long nipple so that when she sucked from it, she would push it up with her tongue and the nipple would cover the cleft palate. But it was going to take time for her to learn.

She started taking small amounts and then she would need the rest of the formula given to her through her feeding tube. She would expend so much energy on eating that she was burning more calories than she was taking in. I was pumping every 3 hours and getting as much as I could, but my milk didn't come in until the day I left the hospital. So we had to supplement with formula until it did.

We continued working with her.

But Wednesday rolled around (my discharge day) and she wasn't where she needed to be, so we had to go home without her.

I walked out of the hospital without my baby. As we left another family was leaving with their baby. I lost it. I cried as we walked to the car knowing that we would be living at the hospital until we could take her home.

We had been home an hour and we got a call from the doctor. They were transferring our baby to a hospital that could adequately take care of her, Medical City of Dallas. This hospital they were sending her to was the best of the best and could help her more than the hospital we were at.

She had her first ambulance ride at a few days old. I rode in the front and arrived at the hospital. We got her settled and continued working with her. We met the doctor who would be doing her surgeries eventually to fix her cleft palate and met with the NICU doctor. He was very optimistic and expected her to only be in the NICU for a week or less. Being at the NICU at Medical City of Dallas was a big change. At Baylor Frisco, where she was born, we had our own private room in the NICU, but now, we had to share a room with another baby. It was very cramped. I wanted my baby out ASAP.

She was admitted to Medical City Dallas on Wednesday and we continued working with her on eating from her special bottle. 

She continued to get better and better and by Saturday she was eating her whole bottle without the need of the feeding tub, and the doctor told us, if she continued this for 48 hours we could take her home! As you can tell, Kyle and I were so excited at her progress!

Well girlfriend, stepped up and continued taking her bottles like a champ and we got to take our sweet girl home on Monday, August 3.

yes, they had to wheel me out in a wheel chair even though I hadn't been in the hospital for almost a week. Protocol apaparently.

She is continuing to eat like a champ and saw her pediatrician the next day. She had gained 3 ounces in 1 day! The doctor is pleased with her progress and we go back in 1 week to have our 2 week appointment.

We are enjoying having her home as we get used to being a family of 3. 

Raegan's first meal at home. Allie being a protective big sister.

oh those cheeks!

We see her craniofacial doctor (the doctor that will do her surgery to fix her cleft) today. Praying everything goes well and I will post an update once we know more.

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