Surgery #2

1 Peter 1 :6 In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. 7These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed.

Surgery scheduled for 9:00 am. On December 19th at 7:45 in the morning, we waited for Noah to be admitted. Reimplantation of the right ureter was necessary to correct the severe reflux ( urine going back into the kidney). The surgery would last 3-4 hours. At 15 months of age, my baby boy is one brave little warrior and has a couple scars to prove it.

 

 

 It was hard not to let the nerves get the best of us, but through all of it we knew God was with us. It got worse when surgery was rescheduled for a later time. Noah didn't seem to mind.

 

 

 At 12:00,  Noah finally gets a sedative to help with separation anxiety. As they pulled him away, I couldn't hold back the tears. My baby was taken in to be sliced open and I couldn't hold him through it. Buddy (his tubie friend) was there all along.

 

 

We found some comfort in the lobby where other nervous parents waited. We heard other parents' stories and the tough situations they were in. I came across a woman. I recognized the fear in her face. That fear and sadness that no mother is ever ready to face. Her struggles were tough. Her 5 week old baby girl had already had open heart surgery in her short life. This time around she was getting a g-tube placed in her tummy since she wasn't able to eat. I offered some words of encouragement, like the ones that were offered to me when I needed them most. I managed to get a smile out of her as her eyes seemed glazed over with heaviness.

Then Santa came to spread some joy. I was the first to jump and request a picture. Tension was broken and in the hours that followed there was no more silence. We swapped stories and the experiences  that seem so odd to an "ordinary family" were so easily exchanged with  complete strangers who we could totally relate to.

Surgery ended!

Doctor stated there was a 90 % percent chance the reflux would no longer be an issue .YAY! those are great odds.

A JP tube would remain attached to him to observe the blood output and a chatheter from his penis to check on the amount of blood coming out for the next couple of days.Tubes were everywhere!

A catheter would be left inside his bladder to help against edema and other threats of damage to his kidney. Noah will have to return a second time to have the cathether removed. As of now, we will focus on a day at a time to get him back to his normal routine.

 

 

 

                    

And an awesome clown paid us a visit. Noah slept through it, but we were glad to have such a joyful visitor.

We love you Driscoll Clowns!

The first day and night were very rough. Noah was in pain and cried every time I put him down.

 

 

 

He finally stopped crying.

                                                          

                                            And we went for a ride.                                              

                                                            

Noah felt better and this time we were out in time to spend Christmas at home.

 

 

 

 

 

 

 

As promised, we delivered the soda can tabs to the Ronald Mcdonald House Charities. Thanks for all of you who helped out.

 

 

I continue asking for prayers for Noah.

Joyful moments

Psalm 66: 1 Shout for joy to God, all the earth!

Joyful moments...

 

Last year, around this time, my son was being admitted to the hospital at the young age of 4 months. Little did we know that we'd spend both Christmas and New Year's in the hospital.

 

We didn't celebrate Christmas last year ,and the gifts remained unwrapped until mid-january and then the second trip to hospital came. Joy was hard to find back then and in all reality the pit of despair we seemed to be falling into consumed us and sucked the tiniest bit of positive emotion out of us.

 

This year, even though a second surgery(reimplantation of the ureter) is scheduled on 12/19/12, we've realized how joyful life can be if you care to appreciate its beauty. Like when my boys hug and kiss each other goodnight after bouncing on the bed, I call that joy. My husband reminding me that he loves me on a daily basis, brings me joy.  Being able to have both my parents alive and kicking and enjoying their home visits, brings joy to my heart. And, the lady who rings the bell in her super red lipstick as she collects coins for the salvation army. Her super white teeth glow right at me as she smiles. Smiling back isnt difficult, she spreads some joy. Then there are those beautiful people who intentionally give out of their hearts desire to make someone happy.

 

This South TX College Biology Club was kind enough to greet us at the Dr.'s office with a gift.


We've tried to make the most out of the holidays and hoping that we are out of the hospital before Christmas. We really want to be home. Anxiety will try to creep in soon, this I know. At the moment, I find peace in my heavenly father, who has lifted us up from the worst time of ours lives and brought us to this time of year again. My father who has come to our rescue time and time again.

 

 

Having fun at the festival of lights.

We continue asking for prayers for Noah.

Gobble Gobble

 

Psalms 69:30 I will praise God’s name in song and glorify him with thanksgiving.

I praise your name for all you do, all you've done, and all you will do for us. I am learning to trust in you even though ,at times, it is tough. Give me the wisdom, understanding and faith to keep my eyes on you. Surround me with your presence and guide my every step. Father," your presence is all I need, its all I want, and all I seek and without it, without it there's no meaning". I joyfully serenade you with this song.

 

We spent Thanksgiving with my awesome sister, Gladys, and her family up in San Antonio. We had a blast!

 

                                                                         

A year ago, my sister had double mastectomy. She is a cancer survivor. Thank you Lord. You've kept her alive and safe. You've kept my sister as happy , upbeat,  and beautiful as she's always been. Her loving girls bring joy to her home.

 

My mom went with us. Thank you father that my mommy is strong. Please keep giving her the strength and courage to deal with everything that life throws at her. I ask that you surround her with your love and peace.

 

Our kids did well on the 5 hour ride over there, except when Noah was throwing his tantrums. He seemed to enjoy the ride when he had something to beat me with. My Tiny Terror is becoming a meany weany. Thank you father. Last year our Noah seemed so frail and weak. He gets stronger and more energized as the year comes to an end.

 

 

 

 

 

 

One of my favorite moments, besides stuffing my face with all the green beans and stuffing of  course, was the quiet walk my husband and I took after dinner. We walked hand in hand and reminisced over our last 8 years as husband and wife. We spoke of our good moments, our bad moments and our worse moments. We've grown so much as individuals, husband and wife, and parents. Thank you Lord, you've given me the perfect mate. You heard my prayers when I asked for a Christian friend and gave me a Christian husband that I love dearly. I can't imagine my life without Jonathan. Thank you Lord.

 

 

Faith and I doing are part to help out the Ronald Mcdonald House


*Tomorrow we have a Dr. appointment with the urologist. Prayers for Noah please.

Bye Bye October

Isaiah 41:10

Fear not [there is nothing to fear], for I am with you; do not look around you in terror and be dismayed, for I am your God. I will strengthen and harden you to difficulties, yes, I will help you; yes, I will hold you up and retain you with My [victorious] right hand of rightness and justice.

 

 

 

The chill in the air is a little hard to take in. Last year, November was the month where many of our troubles began. It was in November when we realized there was an issue with Noah's eating. His weight became a concern and the weekly visits to the Dr. were an order.  

 

Earlier this week, his nephrologist called. Noah will need surgery to correct his reflux which is still severe. His bladder is smaller than it should be and the fact that the urine keeps going back into the kidney as opposed into the bladder is not helping the bladder any. The deflux will be done in order to help the bladder expand and later in his life this won't create more problems.

The problem...a deflux isn't always successful :/

We were so close to make it through November without the added stress of a surgery. Maybe next year, holidays will be nice and quiet. We aren't sure when this will be done. As I type this, I anxiously await for the call to confirm appointment. I hate my child going through all of this. I hate my family under so much stress. I hate my husband feeling so helpless. I hate myself being mentally weak.

 

And then, there is that bump on Marcos' neck. A couple of weeks ago we noticed a bump on his neck. We didn't hesitate to take him to the Dr. Dr. didn't seem too concerned. Last week, we went in for a follow up. Surgeon's opinion is necessary now.

 

I don't like the chill in the air anymore. Bye bye October.

 

 

 

 I love my baby brother Noah.

 I found a little pumpkin mommy.

Hello Mr. Ronald

Isaiah 54: 17  no weapon forged against you will prevail, and you will refute every tongue that accuses you.This is the heritage of the servants of the Lord,and this is their vindication from me,”declares the Lord.

We're home safe! Thank you Jesus. It's been a crazy couple of days. I ended up in the hospital on Monday due to an IUD going missing. YIKES!

 

Thankfully, my awesome gyno. is super cautious and made sure to keep me for overnight observation to make sure it wasn't floating around inside me.

 

And, it got me thinking. Life is such a gift! As I sat there with the stinking intravenous needle attached to my wrist sadly looking out the window, I thought of how much time I've wasted not treating it like a gift. I often complain, worry, and argue about the dumbest things in life. It doesn't take much before your life can be completely turned upside down as we've learned this last year. I wonder if my heavenly father is proud of me? Am I doing my very best with this precious gift , my life, or simply going through the motions trying to stay out of harm's way.

So, xray showed nothing was floating inside my tummy. YIPPIE, and off to Corpus Christi we go for Noah's urodynamic study.

We were lucky to have had the help of  Ronald Mcdonald House Charities. We spent the night and met other families going through hard times as well. I enjoy meeting other families we can relate to ,but at the same time it pains me to hear their stories. I've learned so much from other parent's experiences like the lady that's lived in the Ronald Mcdonald house for a year due to her child needing chemo-therapy. She will have to move to Corpus since his treatment will end in 2015. I don't understand where her strength comes from and can't ever imagine living that life. There were different people there. Most of them had a glazed over look on their faces. We know that look and understand it well.

 

Urodynamic study went ok, but it could have been better. I was a little bummed to learn that my child's reflux is still an issue. His bladder continues contracting and not developing correctly and the reflux only makes it worse. His bladder will have to be in good condition if he ever gets a transplant(<-which we are praying against and not accepting as God's will for our Noah!)

 

Like every time they poke my baby, I was a nervous wreck! I hate the waiting and hate it more when I can hear him yelling and can't do anything about it. Forty five minutes later ,it ended. Yay, it's over!

We enjoyed the last couple of hours at Mr. Mcdonalds House :) and were lucky to have left within a day of getting there.

 

                                                                 

The boys playing with Sophia, the mascot.

 

 

These generous people were kind enough to house us for the night and then give us free tickets to TX State Aquarium. I love them!                  




                                                

Cross references:

1. Isaiah 54:1 : S Ge 30:1
2. Isaiah 54:1 : S Ge 21:6; S Ps 98:4
3. Isaiah 54:1 : Isa 66:7
4. Isaiah 54:1 : Isa 49:20
5. Isaiah 54:1 : S Isa 49:19
6. Isaiah 54:1 : S 1Sa 2:5; Gal 4:27*
7. Isaiah 54:2 : S Ge 26:22; Isa 26:15; 49:19-20
8. Isaiah 54:2 : Ex 35:18; 39:40
9. Isaiah 54:3 : S Ge 13:14; S Isa 48:19
10. Isaiah 54:3 : S Job 12:23; S Isa 14:2; 60:4-11
11. Isaiah 54:3 : S Isa 49:19
12. Isaiah 54:4 : Jer 30:10; Joel 2:21
13. Isaiah 54:4 : S Isa 28:16; S 29:22
14. Isaiah 54:4 : S Ge 30:23; S Ps 119:39; S Isa 41:11
15. Isaiah 54:4 : S Ps 25:7; S Jer 2:2; S 22:21
16. Isaiah 54:4 : S Isa 51:7
17. Isaiah 54:4 : S Isa 47:8
18. Isaiah 54:5 : S Ps 95:6; S 149:2; S Isa 51:13
19. Isaiah 54:5 : S SS 3:11; Jer 3:14; 31:32; Hos 2:7, 16
20. Isaiah 54:5 : S Isa 1:4; 49:7; 55:5; 60:9
21. Isaiah 54:5 : S Isa 48:17
22. Isaiah 54:5 : S Isa 6:3; S 12:4
23. Isaiah 54:6 : Isa 49:14-21
24. Isaiah 54:6 : ver 6-7; Isa 1:4; 50:1-2; 60:15; 62:4, 12; Jer 44:2; Hos 1:10
25. Isaiah 54:6 : S Ex 20:14; Mal 2:15
26. Isaiah 54:7 : S Job 14:13; Isa 26:20
27. Isaiah 54:7 : S Ps 71:11; S Isa 27:8
28. Isaiah 54:7 : S Ps 51:1
29. Isaiah 54:7 : S Isa 49:18
30. Isaiah 54:8 : Isa 9:12; 26:20; 60:10
31. Isaiah 54:8 : S Isa 1:15
32. Isaiah 54:8 : ver 10; S Ps 25:6; 92:2; Isa 55:3; 63:7
33. Isaiah 54:8 : S Ps 102:13; S Isa 14:1; Hos 2:19
34. Isaiah 54:8 : S Isa 48:17
35. Isaiah 54:9 : S Ge 8:21
36. Isaiah 54:9 : S Isa 14:24; S 49:18
37. Isaiah 54:9 : Ps 13:1; 103:9; Isa 12:1; 57:16; Jer 3:5, 12; Eze 39:29; Mic 7:18
38. Isaiah 54:9 : S Dt 28:20
39. Isaiah 54:10 : S Ps 46:2; Rev 6:14
40. Isaiah 54:10 : S Ps 6:4
41. Isaiah 54:10 : S Isa 51:6; Heb 12:27
42. Isaiah 54:10 : S Ge 9:16; Ex 34:10; Ps 89:34; S Isa 42:6
43. Isaiah 54:10 : S Nu 25:12
44. Isaiah 54:10 : ver 8; S Isa 14:1; 55:7
45. Isaiah 54:11 : S Isa 14:32
46. Isaiah 54:11 : Isa 28:2; 29:6
47. Isaiah 54:11 : S Isa 51:19
48. Isaiah 54:11 : 1Ch 29:2; Rev 21:18
49. Isaiah 54:11 : S Isa 28:16; Rev 21:19-20
50. Isaiah 54:11 : S Ex 24:10; S Job 28:6
51. Isaiah 54:12 : Rev 21:21
52. Isaiah 54:13 : S Isa 28:9; Mic 4:2; Jn 6:45*; Heb 8:11
53. Isaiah 54:13 : S Lev 26:6; S Isa 48:18
54. Isaiah 54:14 : S Isa 26:2
55. Isaiah 54:14 : Jer 30:20
56. Isaiah 54:14 : S 2Sa 7:10; S Isa 9:4
57. Isaiah 54:14 : Zep 3:15; Zec 9:8
58. Isaiah 54:14 : S Isa 17:14
59. Isaiah 54:15 : Isa 41:11-16
60. Isaiah 54:16 : S Isa 44:12
61. Isaiah 54:16 : S Isa 10:5
62. Isaiah 54:16 : S Isa 13:5
63. Isaiah 54:17 : S Isa 29:8
64. Isaiah 54:17 : S Isa 41:11
65. Isaiah 54:17 : Isa 56:6-8; 63:17; 65:8, 9, 13-15; 66:14
66. Isaiah 54:17 : S Ps 17:2; Zec 1:20-21

 

Chilling with the turtles

 

Where's the dolphin, Noah ?

                                  
Pretty Fish

@ Ronald Mcdonald's House charities :   Thank you beautiful people. Your kindness will one day be rewarded.

13 months

Psalm 55: 22 Cast your cares on the Lord and he will sustain you; he will never let the righteous fall

13 months ..

Nephrologist visit went well. No labs were needed which rarely happens. I guess the "Don't mess with me " t-shirt really did work.

Dr. seemed happy to see my monkey walking, babbling, and beating on me.

At 18.15 lbs and 29 1/2 inches long, we won't worry about growth hormones just yet. I've been fearful of it and glad to hear her say its not necessary now.

Urodynamic study was scheduled for next week (10/24/12).We need to make sure his bladder is doing well. This means we gotta pack some stuff and head out Corpus.

The first time we drove there both my husband and I didn't say much on the way. I could barely sit still. My constant leg shaking and nail biting drove my husband insane . The hospital seemed intimidating. This trip will be different. We will enjoy the trip. We will trust that God has his hand on us and continue resting in his strength. We are hoping to meet other parents we can relate to. This has been one of our struggles.

I ask for prayers for Noah. He's been doing so well and we expect him to continue to do well. We ask that this study goes smoothly and all is well.

Marcos turns 5!

Deuteronomy 12: 7   There, in the presence of the LORD your God, you and your families shall eat and shall rejoice in everything you have put your hand to, because the LORD your God has blessed you.

 

 

Enjoying the beautiful moments our Lord has blessed us with. We loved that we were able to celebrate our son, Marcos', bday. Our baby man turned 5.

 

My monkey had a blast with some of his cousins and friends!

                                                           "Let's ride the bike daddy!"
                        

Many firsts

 

 

Ecclesiastes 3:1 There is a time for everything,
and a season for every activity under the heavens

 

                      Marcos 1st day of school! Exciting and scary day all at the same time.

                                                           Grandma's day at school.

First bus ride..

"The bus ride was fun mommy. can't wait to do it again."

Noah turns 1!

John 10:10

The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.




Noah turned a year old and back to the nephrologist we go. We couldn't have celebrated his first year any better.

Nephrologist stated," He's outgrown the hydronephrosis and might have outgrown the reflux".

"WHAT?!"

"Yes, remember I had said there was a slight possibility he could outgrow it?"

My inner monologue," Ummmm, no you actually said he would never outgrow it and thats why I've been freaking out all this time Mr's ma'am !"

"We really can't be 100% sure he's outgrown the reflux unless we do a VCUG, but since there hasn't been any infections, we will avoid putting him through all of that again."

"So, what does this mean? Transplant? Is he ok now?"

"Well, he will need a transplant, but right now he is stable. His kidney still looks pretty bad but he is doing well. I can't really say when he will need it, but he will need one. When you guys first walked in here, I thought he would be on dialysis by now, and he is doing pretty well right now".

.......speechless.....


Yearly check up at his pediatrician.

"So what's going on with Mr. Noah", asks the Dr.

"He's doing GREAT! Nephrologist stated he has outgrown the hydronephrosis and might have a outgrown the reflux".

Drops his pen, stares at me, chuckles quietly." Do you believe her?"

"Ummm, why not?"

"Well, that can only happen if he NEVER has a urinary tract infection."

"Well, he hasn't".

Teenie Weenie

Phillipians 4:6
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.

At 9 months, my child was still teenie weenie. He had fallen off the growth chart and remained below the 0% percentile since leaving the hospital at 4 months.
Ahhh!!  C'mon Noah gain some weight.
Meanwhile, the monthly visits continued and so did the lab testing.

The Genetecist is still confused about him having a genetic problem.
Ahhh!! Thats getting old and annoying. Stop making us wait in your lobby for 3 hrs and saying the same thing please!

The excessive puking continued until Noah was 10 months which only added to his malnourishmet. He continues eating tiny amounts and depends on g-tube for his feedings.

Prayers continue...

I want to be a normal mom! I want to enjoy the normal things in a baby's life not worry about gtubes, medications, special formulas, lab testing, continuous feedings, 6 different Dr.s who dont always agree. I want to go on a date with my husband! I want to step out without fearing that I've left medication, mickeys, or syringes behind on top of all the crap I already need. I want to live a life of normalcy where a child's skipped meal isn't much to worry  about or special instructions on how to feed your child is necessary. I want a day where my day isn't planned around my child's meds schedule. Father I pray for complete restoration in Noah's body in the name of Jesus!

He was finally able to  tolerate his night feedings without waking up in the middle of the night throwing up at 10 months. I could pump the milk in his stomach while he was awake and he no longer vomited. On occassion, there was some spit up but no more VOMITING.

~WOW~

Resting in the Strength of the Lord

 

Psalm 91:14-15 “Because he^[b] loves me,” says the Lord, “I will rescue him;

I will protect him, for he acknowledges my name. He will call on me, and I will answer him;
I will be with him in trouble, I will deliver him and honor him.

 

Before turning 7 months, we visited nephrologist for his monthly check up.

Creatinine had dropped to a .4 , YIPPIE!!!! Awesome!! and Hooray!!!

When Noah was a newborn his creatinine was 1.4 which his doctors explained is high for a baby and needed to be much lower.

The good news continued. The sonogram showed improvement . The swelling in the kidney was still present but had decreased.

There was even more good news. The ureter that was swollen when he was born was showing to be completely healed. Alleluyah ! Praise the Lord!

Answered prayer?  I think so !

Later that week, I learned something awesome which I will always take comfort in. Our son's name is Noah Ezekiel when translated into Hebrew means Rest(Noah) Strength of the Lord(Ezekiel).

Not knowing what we would be going through we named our son a beautiful name which I truly believe is a sign from God that he is with us strengthening us and our Noah throughout it all.

Could it get even better? Yup..

Since there had been improvement and he had not and has not had a single urinary infection, the deflux was postponed until further notice.

Thank you Jesus!

6 months

Psalm 91:1-2 Whoever dwells in the shelter of the Most High  will rest in the shadow of the Almighty.^[a] I will say of the Lord, “He is my refuge and my fortress, my God, in whom I trust.”

 

 

6th months came before we knew it. Urologist requested sonogram of kidney. He ,also, recommended deflux (surgery to correct  ureters and prevent the urine backing up into the kidney). His goal was to get his reflux down to a grade II. The visit was short and to the point. He reminded me of the need for transplant in the future," The nephrologist should have more information on that. In the meantime let's keep praying", he said.

 

I hated these visits! No matter how much I tried living outside this terrible ordeal I was reminded of as soon I stepped outside my home. Fear paralyzed me.

Prayers flooded my home. I prayed day and night. I woke up praying and went to sleep praying. I'd wake up in the middle of the night praying.  I had others pray for us. I requested prayers from healing rooms, from churches in other states, and I continue asking for prayers til this day.

For a while,  I wanted to live in a God bubble where all was lovely and without fear. I wanted to wake up from the nightmare I had woken up to 5 months before. I read books on miracles, on the holy spirit, my bible. I recited Psalm 91 over and over. I declared my child healed and I still do. I couldn't get enough of God. I wanted him all the time and am certain I could not have made it out of that depressing pit without him. "“He is my refuge and my fortress, my God, in whom I trust.”
I begged for mercy.  I begged for a 2nd kidney.


Deflux: scheduled for May 7.

Grieved by various trials

 

 

1 Peter 1:6-9  In this you greatly rejoice, though now for a little while, if need be, you have been grieved by various trials, that the genuineness of your faith, being much more precious than gold that perishes, though it is tested by fire, may be found to praise, honor, and glory at the revelation of Jesus Christ,  whom having not seen you love. Though now you do not see Him, yet believing, you rejoice with joy inexpressible and full of glory, receiving the end of your faith—the salvation of your souls.

 

"I love you brother. I will never leave you by yourself , Noah," our loving Marcos greeted his brother when arriving from the hospital.

The excessive puking began shortly after we began using the g-tube. It didn't take long after feedings before the smell of elecare formula filled the room. The odor penetrated my shirts and changing his clothes became a waste of time since he vomited often.

His feeding and medication schedule became demanding. The g tube was great for giving him all the medications he was on. Before the g-tube ,giving him all the meds seemed cruel. I hated the tube for so many reasons, but I knew it was what kept him alive.

6:00 am meds
8:45 am offer bottle
9:00 am meds and bolus the rest of the milk
11:45 am offer bottle
12:00 meds and bolus feed
2:45 pm offer bottle
3:00 meds and bolus feed                   *bolus: using syringe to push milk in to his tummy tube
5:45 pm offer bottle
6:00 pm meds and bolus feed
8:45 pm offer milk
9:00 meds and bolus feed
11:45 offer  milk
12:00 am meds and bolus feed
3:00 am bolus feed

This took a toll on me. After a month of this, his nephrologist made a change to his feedings. Allelujah!  We would feed him throughout the night as much as he could tolerate and feed whatever he wanted throughout the day. His day feedings were 3 times a day and he didn't drink more than 6 oz in a day. He couldnt tolerate more than 2 oz at a time and he never cried for food. I would offer throughout the day and many times he would vomit when putting nipple in his bottle. At other times, showing him the bottle was enough to make him puke. And, other times all I had to say was "titi" ( spanish slang for bottle) before the puke fest began.

The vomiting continued up until he almost turned a year old. He would wake up around 5:00 am throwing up. It was difficult to see my son vomit so much and harder when I explained to other parents and they tried offering advice that absolutely made no sense. I learned later that many children with kidney issues have throuble eating and many of them will depend on a g-tube all their lives.

He didn't gain much weight or grew much either. The constant remarks on his  'teenie weenie ' size made me bitter. I hated that at 6 months of age people thought he was 3 months. I hated that as other mommas and their children enjoyed meal time, I had to be on high alert with every meal prepared for the moment he would throw up. I hated that as other mommas complained about heavy babies, my anxiety arose as we approached the baby scale knowing that he was below the zero percentile on the stupid growth chart.  I hated that as other mommas complained about being bored at home, my child had visits with 6 different Dr.s and was tested often.  I resented other women so much. What had I done to have caused such pain to my son? I wondered if God loved me. I prayed for him to show me he still cared.

Our lil Noah

Psalm 139:15-16    My frame was not hidden from you when I was made in the secret place,
when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.

At the age of 4 months, he stopped eating. We ended up in the hospital where they probed him, x-rayed him, and scanned him from head to toe. Our Noah was calm throughout all of it. I was a mess. After a two week stay at the hospital, they found mal-rotation of his intestines. He had surgery at his young age. A G-tube ( gastro-intestinal tube ) was placed in his stomach and the list of his meds expanded.  We left the hospital after a three weeks. I was mortified to go home without nurses being around, but glad we were leaving the cold and depressing hospital.

 

A week later we returned to the hospital. Noah had developed RSV.His total stay his second time was another week. Noah remained happy  and without fears. Peace surrounded him and joy exuded him.  

Noah Ezekiel

 
Psalm 139:13-14For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.

My precious one..
.

Born at 35 weeks weighing 6 lbs 5 oz.
Noah Ezekiel ,our gift from heaven, has given us so much, made us feel so much and at the same token worried us so much. Our Noah was born with one kidney. That one kidney he has was not doing so well from the start. When he was born, he had hydronephrosis grade V( swelling of the kidney ) and reflux V (urine going back into the kidney). Both of these were the worst they could be. He was diagnosed with kidney failure at the young age of 2 days old. Our nightmares began shortly after.

I remember being terrified of taking my little one home. How could I hold and love this one baby that might be taken from me? I am ashamed of my fears now. But, they were real.

We visited urologist a day after being released from the hospital.
Urologist agreed with Dr.'s previous diagnosis. His kidney is not looking good. His blood pressure is high. He requested an ultrasound and a VCUG (Voiding Cysto-Urethrogram) .

Tears rolled down my eyes. My perfect baby came with so many imperfections.:(


Day 7 -first visit to his pediatrician. More bad news. His 1st heel test came back abnormal. Further testing is needed.

Day 8- Pediatrician requests labs. 2nd heel test is abnormal as well; a trip to the Geneticist is required.

Day 18-Visit to nephrologist; she states, ""He will never outgrow this; he will need surgery to help with reflux, dialysis, and eventually kidney transplant...1 every 10 yrs".

Day 28- VCUG is needed for a second opinion on the severity of the reflux. After an hour of torture a busted vein and so many screams from my Noah, they are able to determine that reflux is definately grade V.
Day 30- first visit to Geneticist. The doctor states he might have organic acid disorder.
More poking!!