WOW; TIME FLIES WHEN YOU'RE HAVING FUN!

Dear Timothy,

It has been about 2 months since I last wrote. Since my last letter, you have grown into such a handsome young man. You were always handsome, but you get even more cute with each passing day. You know, I am STILL in shock everytime I look at you and realize that you are MY son! You are such a miracle and I thank God for you every day.

So, let's see... your check ups have been great. Your last pediatrician visit had you at 23 inches long and 11 lbs. That was about a month ago, though, so you are probably more like 13 lbs or so. A strange thing has happened with your hair; you went from having a full head of hair to a mow hawk. I don't know why, but your hair just started coming out around the top of your head, leaving you with a bush right in the middle:-).

You are "talking" alot now. You enjoy hearing yourself, so you get louder and louder as you vocalize. You are a happy baby, too. You smile and laugh all of the time. Your laugh is so cute. I truly look forward to the end of my day so I can race to the daycare and see you. Speaking of daycare, I LOVE HOLY TRINITY! You have been doing so well there. The teachers love you so much, and treat you like their own child. You do not like tummy time (never have), but they are working with you to get you used to it because it is a critical part of your development towards crawling.

You are going to occupational therapy weekly to stretch you and get you more flexible. It has worked wonders since you started going and I see you blossom more each day. You rolled over at daycare today and they sent me a picture of you that made me smile. Speaking of "smiling," here are a few pictures from our first family photo shoot. They truly make me smile. I LOVE YOU, sleepy face:-) (you are lying next to me asleep right now. I am about to put you in your crib!)

Always loving you,
Mommy

p.s.
I will be sharing your story during the Children's Miracle Network radiothon on August 27th AND I have been asked to join the March of Dimes Board of Directors. I am so excited about both opportunities because CMN and MOD were huge pieces to the puzzle of your care while in the NICU. What an honor, ey?!?

Long time no write!

Dear Timothy,

You have been home 6 weeks and have been flying super high! You have grown and changed SOOOO much since coming home. You have gained about 3 lbs already and I can definitely see glimpses of your personality. You like being held and, although you will sit in your bouncy seat as long as we are bouncing you, you enjoy being held much more. I do not mind that at all and love cuddling with you. You have had a slew of doctor appointments since being discharged, but all have cleared you. Your jaundice is even almost within normal limits. The liver doctor was shocked with how drastically your billirubin level declined in the brief amount of time you had been gone from the hospital. I was not surprised, though, because I knew that all you needed was to be home.

You have been stooling normally, too, which was the main concern for everyone upon your discharge. I was not concerned about it because I knew you just needed to come home. You are such a joy to your daddy and I. I have been home with you for 5 weeks and have enjoyed every second of it. We did your dedication today and your father pronounced a beautiful blessing over you. I am going to have it framed and placed in your room as a constant reminder. Speaking of reminders, I want to post the following video to capture exactly what you had gone through during your time in the hospital. I will write again, soon!

With more abundant love,
Mommy

Letter #44: HOME!

Dear Timothy,

After 90 days in the Shands NICU, you were discharged on Monday, May 10, 2010 at noon. It was surreal... absolutely surreal. As I previously wrote, I was believing God for you to be released on Friday, May 7th. I showed up with your stroller and was ready to pack you up. I waited for several hours to get confirmation, but a social worker came up to me and said, "the Doctor wants to meet with you and explain why you're not going home today." My heart almost stopped. To put it in a nut shell, the attending physician was concerned because you had not stooled on Wednesday or Thursday. Given your history, he wanted to make sure your not stooling was not a symptom of a more serious problem. So, he decided to keep you over the weekend just to make sure. To say I was disappointed would be correct. As a matter of fact, I was, both, disappointed and discouraged. My mind was flooded with thoughts of a worst case scenario where you did not stool, your bowel became distended, infection set in, and you would have to be rushed to surgery.

The pediatric surgery team wrote an order on Wednesday to do a repeat barium enema on you to see if there was a transition zone in your colon. This would confirm or reject the Hirschprung diagnosis. Your father and I were really uncomfortable with that because you had been eating and pooping and we did not want anything to irritate your bowel and disrupt your progress. Thankfully, they agreed to hold off and re-evaluate you in a couple of weeks. You have a laundry list of follow-up appointments, but I am SOOOOOOOOOOOO overjoyed to have you home.

You are 7 lbs 5 oz, 19 inches long from a birth weight of 2 lbs 4 oz, 14 inches long. Here are a few pictures from your special day.

Welcome home, sweet prince. I love you so much and look forward to raising you into the wonderful man I know God desires that you be!

Letter #43: T-minus 4 days...:-)

Dear Timothy,

I have been claiming May 7th as your discharge date for weeks now... even when there was no discharge in sight. As of yesterday, your practitioner is leaning toward a Friday (MAY 7TH) discharge. THANK YOU, LORD! As I type this you are sitting in your new car seat doing the car seat test. This test just has you connected to a saturation monitor to make sure you can tolerate the sitting position and remain well saturated. Your numbers are staying between 95-98%, and you only have 18 more minutes to go out of 60 minutes.

You are up to 6lbs 14.8 oz. You continue to hover below the 7 lb mark; I guess you don't want to feel "fat;" LOL. Your feed is up to 58 cc's... about 2 cc's from full feed. You have been tolerating your feeds very well, pooping, burping, and the like. Your bilirubin level is a bit elevated, so we are going to have to do some clinical follow-ups when you are discharged. This indicator reflects how your liver is functioning. Since you were on Hyper Alimentation for about 70 days, it is not surprising that it is greater than normal. There are some medicinal treatments that you may have to receive to get it back within normal limits. After this whole ordeal, though, I am quite alright with that.

You had your first photo shoot last Friday. The photographer, Carline Hines, did a BEAUTIFUL job. I was so stunned by the photographs because they made you suddenly become so real to me. I have about a million pictures of you (literally), but those photos just took my breath away. Here are a few of my favorites:

I just cannot stop staring at them! I love you so much, honey, and CANNOT WAIT to put you in your carseat and take you HOME. Counting down the days! Friday, here we come:-). God is sooo good!

Loving you always,
Mommy

Letter #41: Counting down the days...

Dear Timothy,

It is day 72 and I am SOOOO ready to bring you home. Since my last letter, you have been flying high. You are up to 28 cc's on your feeds and will be increased to 30 cc's today. You weigh 6 lbs 15 oz and are on the cusp of 7 lbs!

Day 71, 6 lbs 15 oz

Day 6, 1,005 grams (2 lbs 2 oz)

You now stay awake for about an hour or so and do the "fake out" sleep, where I will hold you until you are "sleeping," then get ready to put you in the bed, only to look down and see you staring at me wide awake. It cracks me up every time. I have a feeling that you are going to be sleeping through the night when you come home because you are pretty wide awake during the day, but very sleepy in the evening. This will work fine for me. While in the hospital, you are poked and fed every 3 hours. When you come home, though, I will feed you when you are hungry and let you sleep when you are sleepy.

You know, last week one of your nurses was concerned about you not pooping regularly and she made the comment that she thinks you are going to end up having surgery anyway. She felt like the surgical team was trying to give you every chance possible before surgery, but that you would ultimately need it. I did not receive that report. I prayed and said, "Lord, this little boy is coming home and I do not receive the report that he will need surgery." I asked for wisdom on how to help you poop and God gave it to me. Do you know that after doing what He said (i.e. massaging your belly), you pooped right then and there! A big, big poop, by the way! God is faithful, Timothy, and I am learning to meet Him where He is in the faith dimension.

You get cuter and cuter every day, little man. It is crazy to think how far you have come in such a short amount of time. I already have your car seat installed in my car and your stroller in my trunk as a sign that I believe you are coming home soon... and I cannot wait! I love you so much, even though you are looking more like daddy each day:-).

In love,
Mommy

Letter #40: NO SURGERY!

Dear Timothy,

You know, I cannot fully describe how awesome God is. I try and try, but it never seems to be adequate. When I walked into the NICU yesterday morning, prepared to hear the details of your surgery to remove part of your colon, the surgeon had just walked in at the exact same moment to look for me. We went by your bedside to talk and he said, "based on what we see, we are not going to do surgery right now. As long as he is eating and stooling, we are going to just let him be." My heart just about skipped a beat. I felt my blood pressure rise and the anxiety in the pit of my stomach turn to relief and joy. The surgeon said that, although what they see appears to be Hirschprung's, they do not see Hirschprung's in preemies and are not completely convinced that it is Hirscprung's. They want to just watch and see what happens, thinking it possible that your ganglion cells are still migrating down to your colon.

As I said in my previous letter, your father and I had prayed that it would not be Hirschprung's and you would not have to go through surgery. When the diagnosis came, along with the disappointment of it, I asked God, "Lord, what are you trying to teach me?" When the surgeon said what he said, I felt the holy spirit say, "I am teaching you to never cease praying for the desire of your heart. NOTHING is ever final in the kingdom of God. I allowed Lazarus to die that I may raise him from the dead in order that I may be glorified. No diagnosis is ever final in my kingdom." WOW.

You had a great day yesterday; took all of your feeds by bottle (up to 18 cc's now of breast milk/Elecare formula), had two GREAT stools, and are staying awake for longer periods of time. You are scrum-didly-uptious:-). I love kissing your big, fluffy cheeks.

You are wearing big boy clothes; no longer in preemie, now wearing new born size, weighing in at 6 lbs 11 oz. Your preemie clothes were too small, so I donated them to the NICU for other parents who may be unable to afford clothes for their baby.

Your first "newborn" size outfit; 2 months old:-)

Alright, my love. I have to get this house cleaned up, then I am heading to the hospital. Your father and I went to the movies last night and came to the hospital to spend time with you and do your midnight feeding. I cannot wait to see you again!!

Love,
Mommy

Letter #39: The Diagnosis

Dear Timothy,

Well, this just in... you have Hirschprung's:-(. The biopsy came back showing that you are missing ganglion (i.e. nerve) cells from your rectum. This is critical for peristalsis to move food through your body and out because the nerve cells send and receive impulses from the brain to cause the smooth muscle of your colon to keep pushing food through your GI tract. In places where those ganglion are missing, food remains unmoved. This is why you have had so many bouts of amdominal distension and dilated bowel loops. Your barium contrast was intended to highlight any anatomical obstructions or strictures. Hirschprung's, though, is a physiological obstruction... or an obstruction related to the function of your intestine.

So, we are now on the road to surgery. It is a road I certainly did not want to go down, but, here we are. I was quite down when the diagnosis came, simply because I had requested the biopsy be done to check for it and was told that there was such a low risk of you having it based on your x-ray films from the contrast study. Well... low risk does not mean NO risk, apparently. A friend of mine said something so true, "thank God that it is something treatable." That is so true. God knows I do not want you to have to go under the knife, but as the attending physician said yesterday, "if he was my child, and it was going to be anything, I would want it to be Hirschprung's because it can be fixed."

I am going to request that your surgery include fixing your testicular hernia (when they decended, a small opening remained between your amdominal cavity and scrotum) and circumcision. I want you to have surgery once and for all. All I can say is GET READY, LITTLE BOY. Mommy is going to spoil you SOOOOO much when you come home!!! I will probably not put you down for a few months, and will be kissing you at every turn of your little head! You have been through so much, but I know that God is keeping you in His perfect will. We prayed that you would not have Hirschprung's and, instead, would just have prematurity related dysmotility of the bowel. Since that is not the case, we thank God for His divine providence because we trust that He knows best and has a purpose for all of this (Romans 8:28).

Alright, hospital time!

Loving you,
Mommy