What a week!

It has been great at times and then rough at times.  Well, it all started last week.  On both Monday and Wednesday, I was able to share my testimony at my church with a group of wonderful moms.  It was such an emotional time for me but a great time of honoring and praising God for all He has done in Selah's life so far.  Then, on Thursday morning, when I got Selah out of her crib in the morning, I noticed a huge swelling on the side of her head where her shunt is.  I couldn't even see or palpate her shunt, so I made a call to the Neurosurgery office, and they said to bring her to All Children's ER.  One of the neurosurgeons met us in the ER, and they did a CAT scan and a shunt series (x-rays of all her tubing).  They were preparing us for possible shunt surgery, but the great news was that the tests showed no signs of blockage or malfunction, and Selah's ventricles also had decrease in size since her last MRI just before Thanksgiving.  The frustrating news was that the doctor wasn't sure why Selah had that pocket of fluid around her shunt.  He said that they have seen it happen before but are not sure why.  They sent us home to carefully watch her and were told the fluid should resorb within 3-5 days.  Well, the fluid did resorb with 2 days, but on Saturday night, Selah spiked a fever of 103, so back to the ER we went, and again, we were thinking shunt surgery.  The doctors immediately did a urinalysis because Selah is prone to getting UTI's, and they found that sure enough she has a UTI.  Well, now it is Thursday, again.  Selah is still running a  fever, off and on.  We saw the Urologist yesterday, and he switched her antibiotics.  He also did an ultrasound of her kidneys and bladder and said that they looked great.  No over-retained urine in the bladder and no reflux in the kidneys!!  However,  I think Selah is so tired of taking the antibiotics and tylenol that she in now gagging on the meds (she normally is so good at taking medicine).  We were told that if her fever is not resolved within 48 hours, then she will have to go back in and possibly re-evaluate her shunt.  We are definitely praying and trusting God for healing of Selah, but I am definitely getting to the point of frustration and just want my baby back to her healthy self!  She continues to smile and laugh through it all, though!  I have definitely been tested this past week.  Am I really putting my trust and hope in our sovereign God and resting in His peace?  It is one thing to say that you are trusting in God, and it's another thing when your faith and trust are tested, again!  Though this week has been difficult, God is still faithful and continues to prove Himself real in my life.  Well, prayerfully this second antibiotic will hit this UTI and her fever will be gone, and I am praying that the diagnosis is correct and there isn't an infection somewhere else, like her shunt! 

Selah's beautiful blue eyes.

Selah blowing raspberries.

                                                                             All Smiles!

                                                                             Selah laughing

Sage at Sea World

                                                     Boat ride in the Keys at Thanksgiving.

                                      Playing at the beach, while daddy kite-surfed in the keys.

                                                                 Feeding the Tarpon.

                                                           Selah's first time swimming.

                                      

Well, Merry Christmas.  Fortunately, I am all done Christmas shopping, but I still have quite a few presents to wrap.  Prayerfully, our weekend will be uneventful, and we will be able to celebrate the birth of our Lord and Savior, Jesus Christ at home and not in the ER of All Children's Hospital!  

Neurosurgery appointment update

Yesterday, Carey, Selah and I headed to All Children's Hospital for Selah's MRI and checkup with Dr. Carey, Selah's neurosurgeon. The appointments went well and Selah cooperated well for the MRI. Fortunately, she doesn't have to be sedated because they do a rapid MRI, which takes about 5 minutes. Dr. Carey reviewed with us Selah's scan from yesterday and compared it to her scan from birth. Dr. Carey was very pleased with how much her brain has expanded over the last three months. She still has a good amount of fluid in her ventricles that needs to be slowly drained. Her brain also has a good amount of growing/expanding still to do. Dr Carey said that her shunt is working well and all of her scars from her surgeries looked really good. Dr. Carey was also pleased with Selah meeting all of her developmental milestones for 3 months. Selah's head circumference is 45 cm, and her body is finally starting to catch up with her head size. Selah's head is unsymmetrical, and Dr. Carey discussed the option of a helmet to help even out her head. We are going to try and help even it out with positioning for now and we re-evaluate for a helmet in three months at her next appointment. Dr. Carey said that there is no possible way to determine if Selah will have any cognitive delays or disabilities mentally. She has seen children with severe hydrocephalus with no cognitive delay or learning disabilities, and she has seen children with mild cases who end up in special Ed. Therefore, it is totally inGod's hands. Just another step of faith, trusting our sovereign God that He will work out His special purpose in Selah's life. Today, we are rejoicing in this day that He has given us and praising Him for all the miracles He has worked in Selah's life so far.
But as for me, I will watch expectantly for the Lord, I will wait for the God of my salvation. My God will hear me. (Micah 7:7)
Our next appointment is with the Urologist on Dec. 15th.

Nana, my Dad, Sage and myself. I will definitely miss my Nana. I wish she could have met Selah, her youngest of 24 great-grandchildren!

My Nana holding Sage!

Picture of my Nana, who is now in heaven. This was during pumpkin show, 2009.

Nana and Big Papa come to visit!

Off we go to get some treats!

Ready to go trick or treating

Our little pumpkin

Mommy with our cute kitty cat

Trunk or Treat 2011-our kitty cat

3 Months Old!

Tonight I write a bitter-sweet blog. Last evening, my Nana went to be with the Lord at 94 years old. She was such a beautiful and godly women and will definitely be missed. However, it is reassuring knowing that she is in the presence of the Lord, and one day we will see her again. On another note, our sweet Selah Grace is three months old today. We saw the orthopedic doctor two weeks ago, and Selah finally got her cast off. She had an ultrasound of her hip and x-rays of her foot, and the doctor said that they both looked really good. He was surprised at how well her hip has healed, due to the fact that he thought she might not have the nerve innervation to the muscles that hold her hip in the socket. We are now praying that the hip dysplasia does not relapse and that she would have the muscle control to keep her hip in the socket. She is still in a harness while sleeping for her hip, and she now has Mitchell shoes with a Ponseti bar that she wears to keep her foot in the correct position.
Selah's next appointment is with her neurosurgeon, the day before thanksgiving. She will have rapid MRI done before the appointment. We are praying for complete healing of her brain and perfect function of her shunt! I will add pictures tomorrow!

Selah's 2 month appointment

I forgot to post about Selah's two month appointment and her orthopaedic appointment.  On October 6th, we went back to the orthopaedic doctor.  He said that her foot and hip felt good but that he wanted her in the cast for two more weeks.  We are currently finishing up our 7th week in the cast and harness.  We will be heading back to All Children's on October 20th for another ultrasound of her hip and more x-rays of her foot to see how the healing is progressing.  Prayerfully, we will come home without a cast on!  Then, on October 7th, we saw the pediatrician for her 2 month check-up.  She weighed 14lbs., 12 1/2 oz. (with her cast on-not sure how much her cast weighs) and was 23" long.  Her head has stayed the same circumference since her shunt at 44 cm.  She has met all of her 2 month developmental milestones except holding her head up while on her tummy, but we didn't expect her to since her head circumference is the same as Sage's when she was 6 months old.  Within the last two weeks she has started really smiling a lot and has started "baby talking".  It is so fun to watch as she tries to make different sounds with her tongue.  I keep trying to get it on video, but everytime I turn the camera on, she stops and just stares at the camera.  She is also following objects with her eyes very well and loves to "talk to" and look at the animals hanging from her bouncy seat.  This week we also saw the Occupational therapist for the first time.  She will be coming to our house once a week for an hour to work on fine and gross motor skills.  This week, she went over paperwork and talked to us, and by the end of that, Selah had fallen asleep.  So, we will begin more actual therapy with her next week.  For now, we are enjoying our life each day with our sweet baby girl.  She is full of smiles, coo's and snuggles and brings such joy to our family!  She is a constant reminder of God's love, mercy and healing power!
   

Fall Festival

This past weekend, we went to a "fall festival" in Oldsmar.  They had pony rides, hay rides, pumpkin patch, hay maze, face painting, petting zoo, etc.  Here are some pictures of our fun day.

                                            Sage riding the tractor-pulled train ride.
                                        

                                                       Selah sleeping in her stroller.
                                             

                                        Sage and daddy feeding the animals at the petting zoo.

                                                 Sage and daddy holding a snake. (I'm just glad

                                                             that it wasn't me!)

               

                                         Sage enjoying her lollipop at the pumpkin patch. 

                                         She picked out a pumpkin for herself and one for Selah. 

                                           Our beautiful girls!  Of course, I had to dress them alike!

                                                                    The Bonham Family!

                                                           Me and my girls!

                                                      Daddy and his girls!

       

                                           This was the hayride at the end of the day.  At this
                                            point, Selah was ready to eat...thus the tears.

                                                      Our beautiful blue-eyed girls!
                                               

Selah is 2 months old!

Here are some pictures I took of Selah.  She turned two months old on October 3rd.  We are headed back to the orthopaedic doctor tomorrow to recheck her left foot and hip.  She has been in a cast and the harness still the last two weeks.  Prayerfully, we will be done with the cast tomorrow.  Then, on Friday we will visit Selah's pediatrician for her two month checkup, where she will also get the first of her vaccines.  Selah is doing wonderfully.  Her shunt continues to work well, praise the Lord!  She is growing into a little "chunky monkey" and is adorable. (I am anxious to see how much she weighs at her appointment Friday!)  She continues to smile and enjoys looking around at her environment.  She loves to snuggle and would prefer to sleep cuddled in your arms than anywhere else...she may be just a little spoiled in that aspect.  She also loves bathtime!  She averages about 5-6 hours of sleep straight at night but has made it 8 hours twice!  We love our little Selah Grace!  I just can't believe she is already 2 months old!

I have been re-reading through my prayer journal and came across a few scripture verses that I wanted to share.  I wrote these down the morning after Selah was born, before they took her for her first surgery to close her spine. 

We Praise God!  For you, Selah Grace, are fearfully and wonderfully made!  God, Your workmanship is marvelous, how well I know that! (Psalm 139:14)

You go before me and follow me.  You place your hand of blessing on my head (Psalm 139:5)

But as for me, I will sing about Your power.  Each morning I will sing with joy about Your unfailing love.  For You have been my refuge, a place of safety when I am in distress.  O my strength, to You I sing praises; for You, O God are my refuge, the God who shows me unfailing love. (Psalm 59:16-17)

"My first time seeing Selah"

I came across this photo a few days ago and hadn't seen it before.  Carey took this picture in the OR, when they were taking Selah out of the room to go to the NICU.  It captures the first time I got to see Selah.  When Selah was born, I did not get to see her because she was immediately taken by the neonatologist and his staff to cover her spine and evaluate her.  She cried as soon as she came out, and my doctor, who delivered Selah, looked down at me and said, "She's going to be OK."  I began crying tears of joy.  It seemed like quite a while before the neonatologist rolled Selah's isolet by me so that I could get a quick glimpse of her before they took her to the NICU.  It was not until 7PM that night, that I was able to go up to the NICU and see her again.    To me, this picture best exemplifies the statement by Max Lucado in his book, Fearless, where he said, "Keep giving your child to God, and in the right time and the right way, God will give your child back to you."

Audiology update

We took Selah for her follow-up appointment with the audiologist today, after she failed the hearing test in the hospital.  We were there from 8AM-10:30AM, and she slept through the testing just fine.  The audiologist did several tests on both ears, and PRAISE THE LORD, she passed her hearing test in both ears!!!  The best part, though, was when we came home, Sage greated us at the door.  She, of course, was so excited to see her baby sister as always, and went over to her carseat.  Sage was talking to Selah and giving her hugs and kisses, and in response, Selah smiled at Sage!  This was the first smile I have seen from Selah, and it brought tears to my eyes.  Selah then smiled about 3 more times after that.  It's amazing the milestones that most parents may take for granted, are such great miracles from the Lord and such a constant reminder that God is able to do exceeding abundantly beyond all that we ask or think and that He is the Great Physician.  It seems like when I am becoming worried or fearful of the future with Selah or wondering why God allowed Selah to be born with spina bifida, He shows me another miracle in Selah's life, as to say to me, "Amy, for I know the plans I have for Selah.  Plans to prosper her and not to harm her.  Plans to give her a hope and a future."
(Jeremiah 29:11)

Urology Update

Today we took Selah to see the Urologist for a follow-up appointment.  He did an ultrasound of her kidneys and bladder and said that "They couldn't get any better than this!"  The kidneys showed no signs of reflux and the bladder looked good too.  He said that at this time, there is no need to be cathing Selah because she is voiding well on her own.  We are so thankful to God for this great news.  It is amazing to think that 6 weeks ago the doctors thought that she couldn't void at all on her own and that we had to cath her 4 times/day, and now today the doctor said that things couldn't be any better and that we don't have to cath her anymore.  We praise God for the healing of her bladder and kidneys. We continue to pray that her kidneys and bladder would continue to work as they should without any reflux or infections, and that she would be able to have bladder control as she gets older.  Thank you all for your prayers for her bladder and kidneys!  God answers prayers, and He is able to do exceeding abundantly beyond all that we ask or think!  He is the Great Physician!  All praise to Him!

Family picture at the park.

Sage and her cousin Ella at the park.

6 weeks old!

Selah is 6 weeks old today!  We are continuing our routine of about 2 doctor visits/week.  I am so thankful that All Children's Hospital is only 30 minutes away and not farther!  Selah is still wearing her harness for her hip and was recasted to correct her club foot on the left leg.  The ultrasound of the hip showed that the harness seems to be working!  The orthopedic doctor was also impressed at how her foot looked when he recasted it and said that possibly  this new cast may be the last one she will need!  We also saw the pediatrician for her 1 month well-visit.  She weighed 11lbs 7oz (with her cast on) and was 22" long.  She will go back at 2 months to start getting her vaccines.  We will also see the urologist tomorrow for a follow-up appointment, and monday she will have her hearing retested with the audiologist.  Otherwise, all is going well and nothing really to report, which is a good thing!  GLORY TO GOD!

Over the weekend, we took advantage of the nice weather and went out for a short boat ride, which was the first time as a family of four.  Sage is taking after her daddy and enjoys fishing, and she caught her first fish, while we were out.  She really liked playing with the shrimp, though, before they were used for bait.  I have also started running again in an attempt to get back in shape, so we also went on our first family run to the park over the weekend.    We also took Selah to the beach for the first time to watch daddy kite-board during all the windy weather from the hurricanes.  Selah is quite a trooper and just sleeps through all of our little adventures.
Pictures soon to follow!

Selah's new "threads"

Sage and Selah

1 month old

Tomorrow, Selah will officially be 1 month old.  It is amazing to think back over the last 5 months and see how far we have come and how God has truly blessed us.  These past two weeks, we have made many visits to different doctors.  First we saw the neurosurgeon who did both of Selah's surgeries.  She said that everything was healing nicely and that the shunt was working well...PRAISE THE LORD!  She did put Selah on Keflex for 10 days as a precaution against the shunt becoming infected.  Selah will go back in 2 months for a rapid MRI and to see the neurosurgeon again, where they will check the growth and development of her brain.  The next day we visited the urologist.  When we left the hospital, Selah was having trouble voiding on her own, so we had been cathing her every 6 hours to make sure her bladder was being emptied.  We had been keeping track of how much urine we got each time, and we saw a huge improvement, where sometimes we wouldn't get any urine.  The urologist said that nerve function to the bladder can improve after healing from the surgeries.  He decided that she only needed to be cathed once a day before bedtime just to make sure her bladder was empty...PRAISE THE LORD!  We also have had Selah's weight checked twice.  She already weighs 10 lbs and is in the 75% for her weight and height...PRAISE THE LORD!  She is nursing wonderfully and is already sleeping for 5 hours at night...PRAISE THE LORD!  This week we saw a pediatric developmentalist and had an evaluation by an occupational therapist.  Selah will be starting OT soon to help her meet all of her developmental milestones like holding her head up, rolling over, sitting, crawling, etc.  Finally, yesterday, we saw the orthopedic doctor.  He thought that possibly her left femur was bowed, but after a quick x-ray, he said that it is, "straight as an arrow"...PRAISE THE LORD!  He also determined that her left hip is displaced and put her in a Wheaton-Pavlik harness that holds her legs in a "frog-like" position to reposition that left hip in the socket.  She has to be in the harness 24/7, except for bathing and changing her clothes, until they determine the hip is in the socket and stable or that the harness is not going to work.  Then, he casted her entire left leg.  He is doing serial castings on her left leg, where we return every week for 4-6 weeks to get a new cast put on in order to correct her club foot.  After the treatment, he did say he may have to surgically cut her Achilles tendon in order to get her foot in the best position for walking.  He did say, however, that Selah has great movement in her hips and knees, and she should be able to walk on her own with leg braces to stabilize her feet...PRAISE THE LORD!

Many of you are asking for specific prayer requests for Selah.  I have already listed the praise reports, so here are the specific prayer requests:
1. We are praying that her shunt would continue to function well and that there would be no infection in the shunt.
2.  We are praying that her brain would develop and grow and that when her MRI is done in 2 months, the doctors would be amazed at how much her brain has developed since removing the fluid.
3.  We are praying that she would pass her hearing test on September 19th and that when we get her vision examined, there would be no problems found with her eyes.
4.  We are praying for continued healing of her bladder and that her renal ultrasound on September 15th would have positive results.  We also pray for no infections as well.
5.  We are praying that Selah would be able to meet all of her developmental milestones and that she would continue eating and growing well.
6.  We are praying that the Pavlick harness would be able to correct her dislocated left hip and that the casting of her left foot would also correct her clubfoot, and we pray that Selah would be able to walk without assistance, as she gets older. 
 7.  Our final and most important prayer request is that Selah would come to a saving knowledge of the Lord at a young age and that she would fulfill His purpose for her life.

We thank you again for your continued prayer and support!  Selah is an absolute miracle and blessing in our life. 

But as for me, I will watch expectantly for the Lord; I will wait for the God of my salvation.  My God will hear me.  (Micah 7:7)

Now to Him who is able to do exceeding abundantly beyond all that we ask or think, according to the power that works within us, to Him be the glory in the church and in Christ Jesus to all generations forever and ever, Amen.  (Ephesians 3:20-21)
    

Cute Doings and Sayings by the "Big Sister"

Sage is now known as "tinkerbell".  She has watched the tinkerbell movie several times now and will not answer to Sage, only tinkerbell...unless I ask tinkerbell to do something she doesn't want to do, then she is back to being Sage.
Sage is beginning to adjust to having her new baby sister at home.  She loves to give her LOTS of  kisses and hugs and put blankets on her, while she is sleeping.  Anytime she sees Selah sleeping in her bassinet or swing, she goes over and says a prayer and tells her a bedtime story, no matter what time of day it is.  Sage has also taken up using a pacifier when Selah has one, which is funny to see, especially since Sage never took one as a baby.
Sage is doing very well at swimming in the pool by herself.  We have spent all summer in the pool, which was a huge blessing for a pregnant woman in the middle of a Florida summer.  Sage also started riding her tricycle by herself this week.  With a push here and there, she is able to peddle it herself.
Finally, Sage has gotten used to and is ok with me (Amy) holding Selah, but does not like it when daddy holds Selah. She becomes very jealous and cries for her daddy to hold her.

The following pictures are:
1. The day we came home from the hospital with Selah.
2,3.  Selah at two weeks old.
4.  Selah sleeping in her bouncy seat during dinner.
5.  Sage making her "funny face"

August 22, 2011

Well, sorry it has been a while since we have posted on the blog.  I'm sure anyone with kids would understand why.  I can't believe that it has been over a week since we brought little Selah home from the hospital.  She has been doing great.  She is eating, sleeping and pooping very well!  She has even been giving me a four hour stretch at night to get some sleep!  We saw the pediatrician last week, but this week we have appointments with the neurosurgeon and urologist for follow-ups.  We are praying for great reports!
We often think about the other babies still in the NICU and praise God for the blessing of Selah only having to spend 10 days in the NICU.  It was such a blessing also to be able to stay at the Ronald McDonald house in the hospital, especially because I was nursing Selah.  I will never forget walking through the hospital from the RMH to the NICU late at night, often in my PJ's, to nurse Selah.  I'm sure the guys mopping and waxing the floors at night are used to it because there were many parents either coming or going from the hospital at all hours of the night.
This journey has truly taught me to take one day at a time.  It can become very overwhelming thinking about the future, but I have learned that God's mercies are new every morning.  He gives me just enough strength, grace and mercy to get through today and not another minute.
I have also been enjoying two devotional books lately, Jesus Calling by Sarah Young and Good Morning, Lord... by Sheila Walsh.  I just wanted to share a couple of thoughts that God has layed on my heart. 

-Difficulties are not necessarily obstacles for God's children, but His appointed way.  You are walking along the path that God has chosen for you.
-But in all these things, we overwhelmingly conquer through Him who loved us. (Rom. 8:37)
-Accept each day just as it comes to you.  Do not waste your time and energy wishing for a different   set of circumstances.  Instead, trust Me (Christ) enough to yield to My (Christ's) design and purpose.
-"Do not fear, for I have redeemed you; I have called you by name; you are mine!" (Isaiah 43:1)
-And He said to me, "My grace is sufficient for you, for power is perfected in weakness." (II Cor. 12:9)
-He will not allow your foot to be moved; He who keeps you will not slumber. (Psalm 121:3)

Selah was released from the hospital today. Doing great. More updates to follow.

Selah goes home!