Speaking of Time Flying...

Jack Matthew you are 9 months old! You are an amazing little spirit filled with so much life and joy! You still constantly smile and brighten the lives of so many people. These have been the very best nine months of my life and I wouldn't trade them for anything in the world!

Here's a little bit about you right now...

• You constantly smile.
• You have the best little laugh in the entire world and daddy and I will do anything to hear it.
• You laugh at sneezes, hiccups, and coughs...who knew this was so funny?!?!
• You can support yourself on all fours and are starting to crawl backwards and move around a little.
• You love, love, love to swing!
• You can stand by yourself when you are holding onto something in front of you.
• You are still so easy going and mellow.
• You will nap anywhere.
• You still take two naps...about an hour and a half to two hours each.
• Last weight check you were 16 lbs 5 oz, but you were up to 16 lbs 12oz and then caught a bug. But daddy and I think you have gained it all back plus some.
• Your favourite foods are now blueberries and carrots with garlic. I just gave you watermelon and you cried when it was gone, so you must love that too!
• You are a paci addict, but that's ok with me. You suck on your lower lip when you don't have your paci and that is my favorite of your many faces!
• You are over your clingy stage and will let anyone hold you, but always keep your eyes on mommy.
• You still coo and make lots of breathy sounds, but no consonants yet. I repeat ma ma ma ma ma to you all day long!
• No teeth yet, but you are a drooly mess, they are coming!
• You had your developmental appointment and are right on track! Yea!
• You love to be outside.
• You put your arms up when you want to be held.
• You have favorite toys...a wooden triangle toy and the colored rings. 
• You sit in the tub like a big boy now.
• You are off your tube for three hours a day now. 
• You are always hungry and are eating three ounces every three hours and about two ounces of baby food twice a day, which I still make! I know you would eat more of both, but I don't want to give you too much of a good thing!
• You are in 9 month clothes and they are roomy on you. But I think you could wear some twelve month things.
• You are still happiest in the mornings and after nap. You sleep in until about 7-7:30 and go to bed between 7:30 and 8:00 so I can fit in all of your feedings.
• You are perfectly content to just sit on the floor and play with your toys. You can sit all by yourself now with no worries. 
• We put away the infant tub, swing and vibrating seat and took the pack and play down from our room. A sad day to me. 
• You are SO happy to see daddy when he comes home from work!
• You are always watching the dog and he makes you laugh a lot too. You grab for him and want to pet him. I think you guys will be great buddies someday.
• You have had one trip to the ER and it was very sad...but it wasn't anything you haven't already been through! You are so tough!
• I still cuddle you before naps and rock you to sleep even though I know you don't need it, but I do.

Jack Matthew you make my day! I can't believe that I actually love you more today that I did yesterday. You are such an amazing, happy little man. I am still amazed with how much you laugh and smile. It really never stops. You are so active and oblivious to your tube and what you have gone through. I hope that you continue to brighten the days of all those you meet for the rest of your life. I truly believe that you are here to help others and make their days brighter. Keep smiling baby boy, I love you! XO Mommy

Yep, a paci addict. You are even waking up in the middle of the night when it pops out of your mouth and you can't find it.

Love that face! Now let's start crawling!

Tried to do a cool photo shoot with a flower, but you didn't care about the flower.

The swing still puts you to sleep.

Peas and carrots, yum!

Trying our new fruits in your teether!

Playing with a favorite toy.

A little swinging action, if you listen close you can hear him giggle!

Crafts

Yes, we do crafts. And while I am not fond of them in my classroom, I find it enjoyable to do holiday/seasonal crafts with my little one. I don't want to forget his first's or how small he is. I want to have something to compare how big he is one day. I can't wait to pull these out year after year and keep up this tradition. So I do crafts with my baby. He sits in his bumbo and plays with paper and watches me until until it is time to trace his hand or use his fingerprint. I have two frames in the house and use the masterpieces to decorate the house. I also color copy the finished pieces and use them as cards to send to loved ones on holidays. People ask me what we do all day, and some days it is crafts! I hope this inspires you to capture your little one in a crafty way!

Our Valentine's Day crafts...Who loves you? and a love bug. These made awesome valentines!

A spring craft...A flower made from many handprints.

Our Easter craft...The eggs on the grass are Jack's fingerprints.

Yes, I'll Admit, I'm 30

So, I am now 30 years old, and this is how I spent my birthday weekend...

Friday was my birthday and we really had nothing planned. My brother came in from Minnesota and paid a visit in the morning, then my dad showed up, then my mom showed up! We all had a great visit and after the boys lest, I treated my mom to a fancy coffee drink and we chatted. I couldn't help thinking that 30 years ago, she was a new mom and going through all of the things that I am.

Later, my hubby and I ordered pizza, my choice of toppings, and washed it down with some beers...my favorite dinner! We went over to our neighbors house and celebrated with some cocktails. They were so sweet and thoughtful and got me a cake!

I was having a bit of a hard day...we'll call it the "Birthday Blues". Do you ever feel like you have it all, but at the same time your life's a mess? I have so much in my life, but want so much more. There are so many things that I thought that I would have accomplished by 30, but yet I have accomplished so much. I am so fortunate at this age to have an amazing husband and beautiful little baby boy, we own a home, I have an amazing career, a wonderful supportive family, and a great group of friends and co-workers. Some people would be very envious of what I have accomplished, and I am proud of these achievements.

Saturday, we spent the day kind of cleaning and picking up around the house. My sister was coming over around 5:00ish so that Matt and I could go out for dinner and drinks. How exciting! A date! This was my gift from my husband and I was looking forward to it for a long time. We went to a new restaurant in town and it everything was great, until...my sister called...one of our toilet's was overflowing and she didn't know where the shut off valve was...seriously!?!?

We went home to give it a quick fix and Matt promised me that we would go right back out and clean it up in the morning...SURPRISE!!!!!! The toilet was just fine, but my house was filled with friends and family all there to help me ring in my 30's! I don't know how my husband pulled this one off because he is the worst liar in the world. I was completely surprised and shocked and had a really great time. It was so nice to have the house filled with people again. We haven't hosted a party in a very, very long time and our house is set up perfect for parties, especially when the weather is nicer. Everyone took turns rocking Jack to sleep, but only mommy could do it...and that made me feel good. It was so great to see everyone and have everyone I care about in one place.

But Matt was not the only one behind this surprise, he has my sister in on it too and she did a lot of planning and preparation. She filled the house with fresh flowers, decorations and food. She made the house look great and even cleaned up that night! I have an amazing sister. And she had already planned a bridal shower earlier that day!

My sister! She's going to hate me for this one!

A full wine rack thanks to all the leftovers and gifts! I love having fresh flowers in the house!

The next day was spent drilling Matt on how he pulled off the party. It was so fun to figure everything out and put two and two together. He even took care of the baby the whole day so that I could recover from the party and lack of sleep. What a guy! My two favorite shows were even on Sunday night! A great ending to a great weekend.

So, yes, now I am 30...I knew it would happen some day, but I really did just turn 16...wasn't that last year? My how the time flies.

It really doesn't get any better than this! My heart is full of love!

Where Did I Leave Off?

For some reason, Jack's journey is weighing heavy on my heart today, so I am going to pick up out story where I last left off...

So things were looking pretty good. I was able to hold Jack and eventually got good enough to take him out of his crib to hold him with out a nurse around. He was starting to open his eyes more and look at me more. I held him ALL the time. No one could tell me that I was holding my baby too much. I don't really think you can hold a baby too much in those circumstances.

The first time Jack was fed was about a week after surgery, he was given 3 ml's continuously over an hour. That's about a teaspoon! He was also given a very tiny amount orally. I would hold a nipple up to his mouth and a nurse would squirt the formula in so he could use his sucking reflexes. It took him a few times to figure out what to do with it, but then he became a pro! He was also wearing clothes...a sure sign in the NICU that your baby was doing better and stable.

Now it was just time to wait, and waiting is hard. We had an appointment set with the surgeon that would be doing Jack's ostomy reversal surgery. We even had a date set for his surgery. I had a routine. Matt had a routine.

Things sound pretty good considering the circumstances, right? We thought they were too...

When Jack came off of the ventilator after surgery, he had something the doctors called a "stridor". A stridor is a high pitched wheezing sound...Jack sounded like an asthma patient...or a dog's squeaky toy. You could hear it as soon as you entered his room in the NICU, above all of the monitors, people and buzzers going off. Every day at rounds I brought this up to the docs. They kept reassuring me that it would go away in time and that it was from being on the ventilator.

But I watched it get worse, and worse and worse. I constantly was telling the nurses that something wasn't right, I was now watching my baby struggle to breathe. I don't think I will ever be able to get those images out of my head. How could this be? Jack has never had any breathing issues, never. He was never on oxygen and his lungs were perfectly healthy. Finally Jack's nurse agreed with me that something had to be done. He looked miserable and his chest was retracting awfully with each breath he took. He stats were beginning drop, which were not like him at all. Again, I felt uncomfortable holding him. I thought I was holding him wrong to make his breathing worse. So I just let him rest peacefully in his crib and read to him. He was finally given a nasal cannula to force air through his nose and down his airway. This worked for about a day and a half. The next step was the CPAPP to force air down his airway...The mask looked somewhat like an elephant's trunk and covered most of his face. There were lots of steroids given and nothing was working.

Jack with the nasal cannula. 

This is not Jack, but another baby on CPAP, It is very cumbersome and looks horribly uncomfortable. It never stayed on him very well.

Jack back on the ventilator. He looks so bad here from extra fluids and steroids.

He had to go back on the ventilator. He was struggling so hard to breathe and I couldn't take it anymore. I could no longer hold him because he just seemed to breathe a little easier while laying in his crib. I was upset over this decision, but this was what was best for him. So I waited in the hall right outside his room while they were doing this.

Suddenly, there was a flurry of activity going on in his room and in the hall where I was standing also. I thought it was another baby, but it was mine. I heard a nurse say that a baby was "coding" and suddenly it seemed like every nurse in the NICU was in my baby's room. Finally a nurse asked me if that was my baby and then I knew that it was. They could not get the breathing tube down his airway and had to do CPR on him. How could we be having another nightmare? I was given water and a chair, someone had to call my husband because I couldn't dial the numbers or talk. I had an amazing nurse that held my hand through this until my husband got there from Ottawa. The tube was finally in, but this episode caused Jack a lot of trauma. He was grey and practically lifeless except for some twitching. The twitching was seizures.

This led to EEG's, an MRI, a spinal tap and countless other tests. No one knew why he was now having seizures. He was put on anti-seizure meds. His poor little body went through so much...I knew it was now all in God's hands. I kept thinking to myself that he could not take anymore...he was too tiny to have all of this happening to him...how was he ever going to pull through?

It was another long night, early mornings and another long week, waiting for him to recover from this "episode" and waiting for answers. A bronchoscopy was scheduled with the surgeon to see what was going on with his airway. We were told that he may have to have a tracheotomy. Everything was wait and see, wait and see...

Better Days

So yes, things are looking up around here after being very down. Matt came home with the flu late afternoon on Wednesday, then I woke up with it on Thursday morning. Matt had to come home from work to take care of the baby who couldn't keep anything down or in him. We became very worried considering his circumstances, so we took him to the ER. He had lost almost a whole pound! That's a lot for our little man. It takes him forever to gain a pound! He was given IV fluids and got an x-ray of his tummy to make sure everything was ok. All was well and we were sent home. But Jack's GI system still isn't right. His formula has been switched, but I will be on the phone with the doctors tomorrow to give them updates.  I still don't know if he ever was sick. I keep racking my brain and asking myself millions of questions...I just want some answers and a resolution to this issue now.

Luckily, our Jack is back to himself personality wise, but just so skinny and bony. He is back to doing what he does best, smiling and giggling, and making us do the same. I can't tell you how much I missed that smile and all those quirky little noises he makes!

We had a great weekend and spent most of it all outside, after purchasing some baby sunblock! We went for  very long walk with Matt's parents and had a little cook out. Then we spent the evening outside with our neighbors. Sunday we worked outside all day doing yard work. Jack was so content in his pack and play with his toys watching the world go by. Matt's parents brought Jack and early Easter gift...a swing! Daddy put it up and Jack was swinging by the end of the afternoon and loving it!

All tuckered out after our very long walk.

More outside fun!

It was so great to soak up all of the fresh air and sunshine this weekend (I even have a little sun burn). I have literally been inside for the past three seasons...summer, fall and winter! I have such a new appreciation for these nice, sunny, warm days and being able to do yard work. I am looking forward to planting my vegetable garden and pots of flowers later this spring. I think it's going to get harder to blog.

This sunny weekend has seemed to melt all of my troubles away and make me look at the brighter side of life. I have been so blessed with so many wonderful and beautiful things in my life. Jack is finally able to enjoy the great outdoors (and I think he likes it), and while some days may be challenging, there are many more days filled with laughter and smiles. Here's to many good days ahead, enjoying all my little man has to offer!

A picture says a thousand words...but this one says a million!

Thanks for the swing Grandma and Grandpa!

I can't wait to spend this week with my smiley little baby boy!

One of Those Days

Usually, I have a pretty good, positive outlook on things. But today has got me down for some reason. It's just one of those days. 

Yesterday, we went to our developmental followup appointment. This is standard practice with preemies. The doctors just want to check up on these little babies and make sure they are developing properly and doing all of the things that they are supposed to do. 

Jack was very crabby for his appointment and just not himself. I was wanting more than anything in the world for him to be his happy, smiley, giggly self...especially because the doctor we saw was one of the first doctors to take care of Jack in the NICU. I wanted her to experience a small amount of the joy that we experience every day. Jack was clingy and whiny...he was getting over a cold. None the less, it was great to see our doctor. I have never met a doctor that cared so much about Jack and our family. She is absolutely amazing and I know that she is still only an phone call away if we need anything, anything at all. We had a quick, great chat and she shared some of her personal experiences with me. She is truly an amazing person and doctor.

Anyway, Jack got rave reviews at his appointment. He is at the top of the preemie growth chart and is doing everything he should for his age. However, he sits "funny" and has some awkward motor skills that the doctor wants to watch more closely and begin physical therapy to fix. Ugh, why?!?! Why my Jack? I know this is a small issue, but I am really longing for "normalcy" in my life, in Jack's life. I just can't get over this issue and it frustrates me very much. I don't want any more appointments or issues. But this is what was recommended, this is what he needs, so I will be on the phone tomorrow setting up all of the proper avenues to get physical therapy started.

It's just one thing that got me down. Jack has not quite been himself since for quite a few days now. One day he will be fine, the next not so fine. He has been having spells of vomiting and diarrhea, but no fever, this is bad news for Jack. I called our GI doctor and got him in while we were in the area. Jack has not gained any weight for quite some time now, and I can really see today that he is looking thin. Some tests were ordered and hopefully we will have some answers tomorrow. Everyone says "Oh, it's just a bug, it's going around", but I know my baby, and he has had a bug before. My mother's intuition tells me that something is going on, something is not right, and I can't take it anymore. I am not going to sit by and watch my little boy lose weight. He needs every ounce he's got.

We got a chance to stop by the NICU to visit some of our fabulous nurses, we saw the doctor that was there the night Jack got sick (he discharged Jack too), we even saw our surgeon and his PA, and our amazing dietitian. Even though jack was not himself, it was amazing to see everyone's faces light up when they saw him! I am so glad the we can go back for visits and show everyone how their hard work paid off for Jack and our family. 


We were discussing some food issues with the dietician, things that work for Jack and things that don't. He was telling me about some other families and how some of these kids just can't tolerate dairy or sweets until they are three, four years old. I guess that I just haven't got it through my head yet that Jack's condition is for life. Things are going to take a very long time for him to be what one would consider "normal". I keep waiting, waiting for him to "get better". I thought he would be better when we came home from the hospital, then at six months I thought this would all go away. We are quickly approaching nine months and a year, and Jack is not going to be "all better". This is not going to just go away. Jack will have issues with what he can and can't eat for a very long time.  It's nothing that I can't deal with, it's just got me down today. I want "normal" for my little one. But I guess everyone has their own "normal" and we will just have to invent ours.

So, it's just been one of those days. One of those days where I again ask the questions, "Why? Why me? Why us, our family? Why Jack?" It's been one of those days where I feel myself being not so strong.  But, I am grateful, and I will do whatever I have to do for my son. Tomorrow is another day, another day that I get to spend with my sweet baby boy. No matter how under the weather he feels, I still enjoy comforting him and trying to get him to squeeze out at least a half a smile for me.

Jack, I love being your mom no matter what. Life is what you make it and we will make it the best life ever for you, no matter what it takes. Tomorrow is a new day, a fresh start. I hope you are feeling better. I miss your smile and laugh. I need you to lift my spirits. I love you...XOXO

How Preemie Moms Are Chosen

(Adapted from Erma Bombeck)

Did you ever wonder how the mothers of premature babies are chosen? Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger. "Beth Armstrong, son. Patron Saint, Matthew. Marjorie Forrest, daughter. Patron Saint, Celia. Carrie Rutledge, twins. Patron Saint ... give her Gerard. He's used to profanity." Finally, he passes a name to an angel and smiles. "Give her a preemie."

The angel is curious. "Why this one, God? She's so happy."

"But does she have the patience?" asks the angel.

"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles. "No matter, I can fix that. This one is perfect. She has just the right amount of selfishness."

The angel gasps, "Selfishness?! Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'mama' for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see – ignorance, cruelty, prejudice – and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles.

"A mirror will suffice."

So Busy

We have been so busy lately! Let me sum it up for you...

It all started last Wednesday...We had a doctor's appointment in Bloomington and Jack and I met my Aunt for lunch. It was great to see her and catch up. I am hoping to see my cousins next time we are in town.

Thursday, we spent the afternoon at my parent's house then had swimming class in the evening. I love seeing my dad with Jack. I never remember him being like this when we were little! It makes me smile to see him be a big softy!

Reading the newspaper together.

Friday we went to visit at school. It was the talent show, which is one of may favorite days of the year! I was welcomed by all of the students and teachers! It was so, so good to see everyone. I miss the kids so much and it does feel really good to be missed by them. We had some pizza withe the teachers and everyone held and played with Jack.

Saturday we went to our friends brand new house in Granville! They built a new beautiful house and are expecting a new baby in June. It was so good to see them and our other friends that were visiting that day. Between the three families that were there there were four little ones, and one on the way. It was a noisy day, but Jack slept right through it when it was nap time!

Jack and one of his buddies.

Sunday we went to church. I love taking Jack to church. The people that sit behind us always seem to entertain Jack. For some reason, Jack always starts to talk at the quietest times of the mass. Usually he falls asleep, but not today! But no crying, just sucking away on his paci. We always get compliments on how well behaved he is in church and how cute he is! Then off to Babies R Us for the high chair! Did I mention that I did this by myself?

Monday we went to a good friend from work house to visit with her and her daughter and play with her baby. Her little guy was born around the same time Jack was due. It was a great afternoon and we all had a great visit. The boys sat and played together for hours and were both worn out that night!

Jack and another buddy!

Tuesday we went to Princeton to meet another baby and his mommy who were in the NICU at the same time as we were. Our babies are a week apart and are now almost the same size. We had a great lunch and chat, and our babies were amazingly well behaved! It was so good to talk with another mom who has all of the same feelings as I do about having our babies early. We have so much in common and it makes my heart sad that we live so far away. I think we would be really good friends and have many play dates with our boys. We then stopped by to see daddy at work and stopped by my parent's house for a quick bottle and diaper change.

Jack and his NICU buddy, they look like little old men out for coffee in the morning! They have both come a very long way since they were born!

Wednesday, Jack, my mom and I met my sister at IKEA. We had a great day together shopping and visiting. Jack was again amazingly well behaved and such a happy and giggly baby all day! We got lots of goodies for Jack including new bowls and cups, stacking cups for the tub and a non-slip alligator for the tub. We are just starting to use the tub for baths instead of the infant tub and Jack loves it. Anyway, we had a great day. We have not had a mom/daughter shopping day in a very long time. I miss those days and I miss my sister so much. She is so busy and going to get busier...she got accepted to grad school!

Fun in the tub with our new stuff from IKEA!

Thursday Jack needed to catch up on his sleep and I needed a little rest too. It was a pajama day and we spent a lot of time cuddling. Jack wasn't as happy as he had been the last couple of days. I though he was just tired, but he ended up having some kind of bug. It started with "spitting up" a whole bottle. I thought  he was just too active after his bottle, but then late in the afternoon he had some funny diapers. Of course I called his GI doctor and since he wasn't running a temp, they didn't seem concerned. So I tried to brush it off and we went to our swimming class. Jack was mellow, but up all night, so I was too.

Friday we recovered from Jack's bug and ordered out fish. Then I had some good therapy with a very good friend from college. She lives in South Dakota and we only see each other maybe once a year, but she related to me like no other. I paid the price for the cheap bottle of wine I drank over the phone with her the next morning!

Saturday we ran some errands, went for a walk on the canal and stopped for lunch. Fresh air and sunshine does the body good! We were all pooped out and crashed for two and a half hours! I woke up and hurried to get ready to go for a good friends surprise party. Matt stayed home with Jack since he was under the weather. I was feeling like I was coming down with Jack's bug, but went to the party with out my "wing man". I was home and to bed early. Both of our actual birthday's are coming up, so we will have plenty of time to celebrate!

This little boy would not leave his shoes alone! 

Sunday, today, I spent the morning making some baby food. Then we spent the whole afternoon outside. We went for a really long walk and stopped for ice cream. It was SO windy! All of us have pink cheeks and noses, a reminder to get some baby sunblock next time I am out and about! We played on the blanket in the yard when we got home and then my parent's came for a quick visit. Jack was putting on a show for them laughing, and smiling and being a curious, squirmy baby! I swear someone put a quarter in that kid. All signs that he is feeling better! He is now sleeping tight and Matt and I are enjoying the sounds of the storm rolling in.

Peas...

 

Carrots with garlic powder...

Baked apples with cinnamon.

Just want to thank all the mom's that inspired me to make my own baby food. I love doing this for my little boy, it makes me so happy, and it really is very, very easy and does not take a lot of time or dishes!

Cool guys daddy and Jack.

Always so inquisitive.

Smiling with mommy.

Yes, we have been busy and are now feeling a little run down and paying the price with stuffy, runny noses and coughs. I think tomorrow will be another pajama day!

Waiting Game

Our life turned into a waiting game. Twelve hours passed, then twenty-four, thirty-six, and so on. Doctors and nurses would point out little signs of improvement to us. It was always one step forward, two steps back. When we would go to rounds, the doctors didn't say much at first. Jack fought so, so hard, and he made it to the "magical" seventy-two hour mark. In my mind, I thought that he would be all better, or at least close to it, after those seventy-two hours were over. Boy was I wrong. Jack wasn't out of the woods yet. After a few more days of waiting, the doctors would tell us that we weren't out of the woods, but we could see the edge of the forest...then they told us we were out of the woods, but still in the shadows. It was a very, very long time before the doctors could assure us that our baby was going to make it, that yes, someday we were going to take him home.

Most babies get to come home from the NICU around their due date, that's just how things usually work out for these little babies. Jack was due September 13th. It was July, our doctors told us that we would most likely not be home by then. The recovery from NEC was a very, very long road and required an additional surgery. Not only was this going to be a very long road, but also an awful roller coaster ride.

Jack recovering after surgery. You can see his central line in his chest here.

Jack was "quarantined" for a while because of coming down with a type of pneumonia from being on the ventilator. Anyone that needed to touch him had to wear a gown, gloves and a mask. You can see his ostomy bag here. 

Jack holding his daddy's finger. 

It became clear to us that we were going to have to find long term living arrangements in Peoria. Matt had to go back to work while Jack was still on the ventilator and I could still not drive. We had a few days left at out hotel where I could stay until Matt came back and we could figure something out. So many thoughts, worries and concerns were rushing through our heads. How were we going to do this? I was determined that I was not going to leave Peoria without my baby. Somehow, I was going to be only a phone call away from him. We looked at the Family House that St. Francis offered us, extended stay hotels and even short term rentals. Fortunately, my family has very close family friends that insisted we stay with them while our baby was at the hospital. Thank God for them!

So now I was one of those mom's...one of those mom's that I felt so sad and sorry for before when our baby was thriving and getting ready to go home. I was one of those mom's who only left her baby's side to use the bathroom, pump and eat. I was one of those mom's who had a notebook and wrote down questions to ask the doctors and their answers. I was one of those mom's who never missed rounds. I was one of those mom's who could not hold their baby...and for a short time not even touch him. I was one of those mom's who only saw their husband's on the weekends. I was one of those mom's who looked like they haven't slept in weeks. Yes, I was one of those mom's who very quickly learned the ropes of the NICU and taught them to new mom's. I became a regular.

A little longer than a week after surgery, Jack was able to come off of the ventilator. This was an amazing day! His little cry was so hoarse and weak from the tube down his throat. He still had many other tubes and IV's, but he could breathe all on his own. Eventually, the replogle tube came out as well. Jack was doing well, but was still keeping everyone on their toes. His pain medicine was being weaned down and he was seeming more lucid and with it.

I spent my days reading to him so he could hear my voice. The book I read most to him was "Where the Sidewalk Ends" by Shel Silverstein, goofy rhyming voice included! I sang to him lots too...Twinkle Twinkle, Take Me Out to the Ball Game, You are My Sunshine...I wanted him to know that I was there, that mommy was waiting for him to get all better, and I would wait as long as I had to.

Finally, the doctors told me in rounds that I could hold him! I was waiting so long for this! They said that not only would I enjoy that, but Jack would really love to be held and needed to be held. I walked back to Jack's little bed in a huge hurry with tears in my eyes. I think it was about week and a half after surgery that I was able to hold him again. My belly was still killing me, so I knew how Jack felt. The gash across his tummy seemed to be just as wide as he was. I was so nervous about holding him and causing him pain. I had the nurse lay him in my arms, and there I sat as still as I could be so I would not cause him any pain. I will never forget that day...I remember the nurse that was there, I remember what I was wearing, I remember that Matt was there and I felt bad because I was holding him first. But he hovered by my side and we all lived in the moment.

I couldn't take my eyes off of him...

So things were looking up for Jack. This was going to be our home away from home for quite some time. Looks like we were going to see that new wing of the Children's Hospital after all.  But like I said before, life in the NICU is a roller coaster...