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!!