Jack's Last Days

On Friday March 19th, Jack started acting sick. His heartrate speed up and he was very pale. Although initial bloodwork leaned toward viral they began him on antibiotics anyway. As the day progressed he continued to get sicker. Overnight, under the care of his favorite nurse, Jack rallied and seemed to get better. Saturday brought Mackenzie's birthday party and a devastating phone call from Jack's doctor. Jack had taken a turn for the worse and was in very critical condition. Additional bloodwork showed he did have a severe infection that had most likely spread to his brain causing seizures. DJ and I rushed to the hospital to be with him. Shortly before we arrived at the hospital Jack went into cardiac arrest. They were able to revive him and stablize his heartbeat for awhile. Just after 6:30pm Jack went into cardiac arrest again while the NICU was closed to parents. They were again able to bring him back. When they reopened the NICU, the doctors broke the news to us that despite their best efforts, they would not be able to bring Jack through this. Words cannot describe how we felt.

Jack passed away shortly after 11:30pm Saturday March 20th in the arms of his daddy. We will eternally be grateful for the time that we were able to spend with Jack and for the impact that he had in this world. Our hope for Jack's memory is not for the shortness of his life, but for the incredible miracle that Jack's life was. He was an amazing gift from God.

Thank you so very much to everyone who has poured out their support in the last couple months and especially over the last few days. We hope that Jack has inspired you and has shown you the awesome power of God our savior. Although our hearts mourn for Jack we take comfort in knowing God's promise for him and that we will be reunited one day in heaven.

~Jeny

Big Boy Bassinet

They have Jack in a bassinet now and out of the incubator!! He is doing well maintaining his temperature too and is still growing like a weed. It's so neat to be able to see him without all the plastic in the way! Now I can get some pictures of him that aren't as fuzzy :-) He is up to 1714 grams (roughly 3 lbs 12 1/2 oz) now. They are talking about trying to bottle feed him here in the next week or so. I can't believe that he is getting so big!
Post again soon,
~Jeny

2 Months!

Ok, so my kid is officially 2 months old today! Can't believe that it has gone so fast! He is doing well on the cannula and gaining weight quickly. He is up to 3 pounds 11 ounces, and he looks every ounce of it! They are hoping to move him out of the incubator and into a crib here in the next couple days. Then he'll start wearing clothes full time and start looking like a real baby. Hopefully then I can get some clear pictures of him without that funky plexi-glass in the way :-)
Post again soon,
~Jeny

1500 Grams!

Jack officially hit 1500 grams last night which is roughly 3 lbs 5 oz. He's getting so big so fast now. He is still doing well on his cannula and they have his oxygen around 30%. He looked so good when I was up there. I got to hold him like an actual baby, which is a lot more difficult than it sounds. Since he is so little it was touch to keep him propped up because his body doesn't reach all the way down my arm. Jack also decided that he didn't like this and we ended up putting him on my chest like usual. (Called Kangaroo Care)
Jack had another eye exam yesterday. He tolerated it better than the last one, and it looks like the ROP has not progressed any. Good news indeed!
Post again soon,
~Jeny

Pictures as Promised

Well, here are the pictures that I took of Jack without the nasty ventilator tube or CPAP. Some of them came out a little blurry, but you can still see that beautiful little face :)
Jack did well overnight on the cannula and is still maintaining his oxygen levels. We still have a few hurdles for him to overcome so that he can come home, but he is making incredible progress. Can't wait!
Post again soon,
~Jeny

Jack and the Cannula

Well, Jack has made it all day on the cannula and is doing very well. They have weaned him down to 35% on his oxygen and he is still maintaining O2 saturation. He looks great and it's so exciting to be able to see his face. I'll try to get pictures uploaded soon.
Post again soon,
~Jeny

Yay Jack!

Jack had a great night on the CPAP! He did very well keeping his oxygen up and they will put him on a canula today at some point. I can't wait to see his cute little face without any tubes! I'll try and get some pictures posted soon!
Post again soon,
~Jeny

Jack's Extubation cont.

So far so good! Jack continues to do well. They have weaned his oxygen down to 40% and he is still keeping his oxygen saturation high. He looks really good and I am so proud of him! Thank you so much to everyone for your prayers and words of encouragement. I'll continue to keep you updated.
Post again soon,
~Jeny

Jack vs the CPAP - Round 2

Well, so far so good. They extubated Jack this morning around 10am and he has been holding steady. They have his oxygen up to 50% but haven't had to adjust it since this morning. He was desating some at first, but they got him snuggled on his tummy and he was a little more comfortable and holding his oxygen steady.
***Just talked to his nurse and he is still doing well. They have weaned his oxygen down to 47% and he continues to keep his O2 saturation up. Mackenzie and I are going to check on him tonight and I'll continue to keep you guys posted.
I posted some pictures of him before and after his extubation.
Post again soon,
~Jeny

Ginormous Jack

Ok, so my kid is officially 3 pounds...3 pounds 3 1/2 ounces to be exact. He's gaining weight so quickly and has started chunking up. I can't believe that he is getting so big! They started the hydrocortisone today to help with the inflammation in his lungs and are still planning on extubating him tomorrow. Definately hoping this attempt goes better than the last.
He definately feels sturdier now. When I held him last night he felt more solid and he's definately longer. :-) I never thought I'd think of a 3 pound baby as "big", spending so much time in the NICU definately skews your perceptions.
He wore his first "outfit" the other night. I'd brought in a couple button up shirts for him to wear since they wouldn't need to go over his head (impossible with the ventilator tube in). It actually fits better than I thought it would.
Daddy got Jack his first Braves Spring Training ball. Luckily the nurse and I were able to convince him not to leave it in the incubator with him. He got a new bed last night too. He's still in an incubator, but it's a little smaller and designed for bigger babies.
Post again soon,
~Jeny

Jack's ROP

The results of Jack's eye exam came back. Jack tolerated the exam well, but was a little touchy last night. He does have slight ROP (Retinopathy of Prematurity). ROP is an eye disease that effects a large percentage of babies that are born before 31 weeks gestation. It is caused when the blood vessels in the eye develop abnormally. These vessels branch abnormally and can leak causing damage to the retina It is stage from I to V and can effect different zones (areas) of the retina. Severe ROP can result in blindness while less severe ROP can result in the need for glasses later in life or can even resolve on it's own.
Jack's ROP is considered a stage I, the least severe kind, and is located in the middle portion of zone 2. According to the National Eye Institute, "Many children who develop stage I improve with no treatment and eventually develop normal vision. The disease resolves on its own without further progression." This indeed is good news. They will continue to monitor his ROP and will perform another eye exam next Wednesday to see if it is progressing (bad) or regressing (good).
Sorry for the technical tone of today's blog, but considering how little I knew about it, I figured I would educate myself as well as the rest of you. :-) In the event that you would like to know more about they highly entertaining topic of ROP, here is the link to the National Eye Institute where I got my information: www.nei.nih.gov/health/rop/rop.asp
Other than that Jack continues to develop well. He is up to 1322 grams, translating to 2 lbs 15 oz. He is still on 28% oxygen and has moved up to 26mL on his feeds. He had another head ultrasound this morning so we should have the results of that tonight or tomorrow.
Post again soon,
~Jeny

Picture Post

Just wanted to get some pictures uploaded that have been stuck on my phone, including my absolute favorite of him with his eyes open.
Visited Jack today and got to kangaroo for a little over an hour. He was very awake today and very active. He has learned to turn his head over, normally a very exciting newborn milestone. However, when your baby is intubated and turning his head over blocks his airway, it can be terrifying. They have been trying to keep him still by putting this preemie pillow, called a Frog, around his head and over his chin to prevent him from turning over. It works most of the time but he still manages to wiggle himself free.
I talked to Dr Brown today. She said she's very happy with the progress Jack made while she was out of town. They have upped his feeds to 24mL and she said they will try again to extubate him in 5 or 6 days. Hopefully this next round goes better than the last. They have been weaning him down on his oxygen and currently have him on 28% where he is doing well.
Post again soon,
~Jeny

Thumbs Up!

Just wanted to post the latest picture of Jack. He has traded the binkie for his thumb and seems to be pretty happy. :)
Jack is getting stronger every day and growing so FAST!! He is up to 1280 grams (around 2 lbs 13 oz) They keep bumping up his feeds so hopefully he'll continue to put on weight quickly. He has his first eye exam on Wednesday morning. The nurses seem to agree that it is a less than pleasant procedure and he'll probably be a little testy Wednesday. Hopefully he'll do ok with it and they won't find anything wrong.
Post again soon,
~Jeny

Jack Undecided

Well the trial extubation was just that, a trial. He lasted less than 24 hours before they re-intubated him. They had him on the CPAP (provides positive air pressure to help him breathe) but he did not like it! He did okay at first just seemed aggravated by the CPAP (it straps onto his head). As the evening progressed he was requiring a higher oxygen concentration and a stronger oxygen flow. Also he continued to be agitated and his heart rate was elevated. Considering all of these, the doctor decided to reintubate him. Hopefully they will be able to try again in a little while. :-(

Even though we knew that was a chance, it's still pretty disappointing that it didn't work. Other than the breathing, Jack is doing well. He keeps moving up on his feeds and is quickly gaining weight. He's up to 1180 grams at his last weighing which is around 2 pounds 9 1/2 ounces! I've been able to kangaroo him a couple times in the last few days which is absolutely awesome. Mackenzie was up for one of those visits and it was incredible to watch the joy on her face as she got to see her baby brother up close and out of the box. It's amazing the relationship that she already has with him. She is so in love with her brother. It's also amazing the faith that she is able to display during all of this. We had the following conversation after I talked to the doctor this morning:

Mackenzie: "Mommy, why are you crying?"
Mommy: "I'm crying because I miss Baby Jack."
Mackenzie: "Well mommy, I don't cry because I miss Baby Jack. I just pray to God when I miss him."

Wow, what a humbling moment for a mommy. Also such a comfort to know that she has her faith to draw on.

I'll post again soon,

~Jeny

Funny NICU video

http://www.youtube.com/watch?v=Hg0w2bJ7YaU

30 Weeks g/a Today!!

Jack is officially 30 weeks today... at least his gestational age. I keep getting these weekly emails from Baby Center about "What your baby is doing this week..." It's amazing to see the developments happening that are supposed to be happening in the womb. Jack is quickly gaining weight now. He is almost 1100 grams which is around 2lbs 5oz. They keep moving up on his feeds which is good since I am overproducing for his intake right now :) We went out....or should I say DJ went out... and bought a stand alone freezer to put in the garage to store Jack's milk so that we'll have room to actually put food in ours. It's still in the back of the van, but hopefully it will make its way to the house soon. :)
Jack's last day on antibiotics is tomorrow!! Yippee!!! They will repeat his head ultrasound probably tomorrow and we'll see how his clots are progressing...or more accurately, regressing. is primary doctor, Dr. Brown is out of town for the week but she has another doc, Dr. Albertini, checking in on him. (Yes, like appletini, and I'm always afraid to make that mistake when I'm talking to her :o) She's nice and we've had her before when Dr. Brown is off for a few days.
The other change is on his ventilator settings. He has been on what they call automode for a couple days now, which is where Jack is responsible for breathing and the vent just kicks in when he forgets to breathe. He's been doing well on it and Dr. Albertini is hoping to have him extebated in the next couple days. However, as is typical (apparently) with Miller-Pighetti children, his lungs sound crackily and they have put him on these 2 drugs that the doctor was kind enough to describe to me as Albuterol and Pulmicort. I had to chuckle as I explained that our eldest has asthma and we are very familiar with those drugs. Looks like we're 2 for 2 in the asthma department. I will continue to hold out hope that the meds are only needed because of his prematurity and that he will not be officially diagnosed with asthma. ::fingers crossed::
Post again soon,
~Jeny

Jack's Bath

Mommy got to give Jack a bath last night. (Well help anyways :) It's been quite a while since I've bathed a baby, and never since I've bathed a baby that little. Luckily, his nurse was very patient. (Thanks Brie!) It was a little terrifying, but still really cool. We bathed him in his incubator so it was a little hard trying to work through the portholes, but I think I did an ok job. He didn't like the water so much, and if he hadn't been intubated I'm sure he would have very vocally objected. Instead he just flailed around a lot and tried to grab ahold of everything. He's got quite a strong grip for such a tiny baby. He's also working on his upper body strength by doing push ups. He is definately an active baby!

Health-wise Jack continues to improve. He is up to 2lbs 2oz and they have been weaning him down on his ventilator settings. Today they moved him down to "auto-mode" on his ventilator which means that Jack is responsible for breathing on his own and the vent only kicks in when he forgets to breathe. So far he has been tolerating it well. They also moved him up on his feeds from 16ml to 18ml.

Family-wise, we actually managed to make it back to church today. I didn't realize just how much I had missed everyone. It was really great to see everyone and be reminded of all the support that we have and all the prayers that Jack is getting.

Well, I'll go ahead and post this now so that I can head up to the hospital and see lil' man.

Post again soon,

~Jeny

Mack and Jack

I took Mackenzie up to see Jack today. She decided to take some of her books up there to read to him. Soooo freakin' cute!! She really enjoyed it and also the attention that she got as the "Big Sister" :-)

It was a little weird though, leaving the NICU with one kid and leaving one behind. Not a feeling that I enjoy and hopefully not one that I will have to deal with for much longer. Only 11 weeks and 3 days until his original due date. Even writing that number is surreal. I really hope that he is ready to come home by then.

Health-wise Jack continues to do well, no real changes. He is getting another PICC line tonight. We were hoping to avoid it but they are going to continue his anti-biotics for another couple week or so and he is running out of spots for his i.v.

My mom went home today :-( Really going to miss her. Mackenzie seemed to do ok. I was worried that she would have adjusted to well to her new routine with Nana, but so far so good. She has school tomorrow morning so we will see how drop off goes ::fingers crossed:: It's weird to think that the next time she comes down (which isn't really that far away) Jack will be home from the hospital. It's almost overwhelming the amount of stuff we have to get done before he comes home. On the plus side, I'm not pregnant anymore so I can pitch in with the room decorating....IF DJ lets me!!

I'll post again soon,

~Jeny

Jack and the Binkie

Well, Jack took his first binkie yesterday! :) Luckily we were there to witness this. The last few days we've noticed that he has been trying to suck on his ventilator tube and anything else that gets near his mouth. His nurse, Kristi offered to get him a binkie, and sure enough that was just what Jack had in mind! He chewed on it a couple times at first and then went to town. Looks like we have yet another binkie kid in the Pighetti family! :)

Health-wise Jack is also doing well. He had another spinal tap yesterday to re-check the meningitis. It came back clear for microrganisms but still positive for WBCs. This is good, it means that the anti-biotics are working to clear the infection but that his body is still reacting to it. He has had all negative blood cultures since the 4th, and is back taking breastmilk. They have him up to 16mL every 3 hours which does not seem like a lot considering his tiny tummy. They will continue the antibiotics for awhile longer to make sure that the infection it totally gone.

Mom leaves tomorrow :-( Very sad. Hopefully I can continue to make the house run once she is gone. It was such a blessing to have her here, and at least we know she will be back again come May so we'll try not to miss her too terrible much.

That's all for now,

~Jeny

Jack Update (Original post date 2/3/10)

Hey guys! I meant to get this up sooner, but things have been a little hectic around here. Jack recently accuired an infection (YUCK!) that spread to his blood (sepsis) and spinal fluid (meningitis). They have had him on anitbiotics since early Monday morning and already we have seen a big improvement in his attitude. (This morning he again attempted to pull out his ventilator tube!) They have sent off fresh blood cultures to see make sure the infection is being controlled and will do a head ultrasound tomorrow morning. The ultrasound will give them a better idea if the infection has caused any obvious damage to his brain. The infection can be treated, but at this point the main concern with the meningitis is whether it will leave any long term neurological effects. Everyone that we've talked to seems positive that because it was caught early and he was not exhibiting any obvious neurological syptoms that his outlook is good. He definately seems to be doing better this morning and seems back to his normal, feisty self. I'll continue to update as we get more information. Thank you so much to everyone for your love and support, especially our friends and extended family. I am overwhelmed (in a good way) by the number of people, even those that don't know us, that have stepped up and added Jack and our family to their prayer lists. Also a huge thank you to our church family who has provided meals and emotional support. As difficult as this whole situation is, it is such a comfort to know that God is watching over us and that his plan for our Jack is so much more incredible than our own.
Talk to you all soon,
~Jeny

Jack-2 Week Update (Original post date 1/28/10)

So Jack is 2 weeks old today. I can't believe how quickly it has gone by! He is still doing very well. He had a couple rough days and was put back on the ventilator a few days ago to give his lungs a rest. Because he was so early, we expected this to happen at some point. He also had a blood transfusion a few days ago because his body is still too little/immature for him to make his own Red Blood Cells yet, also something that was expected. Jack had a few tests done in the last week to check for typical preemie issues. The first was a brain scan to check for bleeds in his brain, a common issue for babies this early. Thankfully this came back clear! The other major test he had was an echocardiogram to check for a condition called PDA, another common preemie issue. (This is where blood is bypassed from the heart directly to the body instead of flowing through the lungs-this closes as the baby reaches full term, but is often still open in preemies. This can cause blood to flood the lungs causing problems breathing.) Remarkably, Jack does not have this, yet another miracle! He'll have this test repeated before he goes home to make sure it is still closed. Jack continues to amaze us all and his doctor has described him as performing "above the curve" for a baby born at 24 weeks. He is now taking all of his nutrition through breastmilk and has had his PICC line removed which was providing iv nutrition. His breathing has gotten better and the doctors are starting to wean him back off of the ventilator. Hopefully once he is off the vent I will be able to hold him again. :-) Thank you to everyone for your continued prayers and support!
~Jeny

BTW...did I mention that I had a baby?? (Original post date 1/20/10)

Yeah, so a little past due, but I'm sure you all understand why :-) Little Jack Donald Pighetti decided to make his entrance to the world early....very early. After just 6 days in the hospital Jack joined us on January 14th at 10:42 am at just 24 weeks and 1 day of gestation. He was 1 pound 7 ounces which is actually pretty heavy for his age. :) He is breathing well on his own but is still on some supplemental oxygen. He will stay in the NICU until closer to his actual due date which was May 5th, a little over 3 months from now. Thank you everyone for the thoughts and prayers they are greatly appreciated. At this point we are holding our own and getting used to our new routine which includes daily trips to Winnie Palmer. I will try to update as often as possible as our schedule allows :) If I haven't yet replied to your phone call/text/email/wall post, don't worry I haven't forgotten, I'm just slowly working through them all :-) Thanks to everyone!!
~Jeny
p.s. I'll try and post pics soon.

Update....late but eventual :-) (Original Post date 1/10/10)

As some of you know by now, Baby Jack has decided to cause his mommy some trouble and I have landed myself in a most charming room here at Winnie Palmer hotel and hospital for the remainder of Jack's stay in the womb which we hope will a few more weeks. The doctors are pretty sure that my water broke sometime Friday morning. We've not had any contractions or any other indication that he is ready to come out. Since he is still too early to have a good enough shot on his own they will try to keep him in there as long as possible. I'm currently about 23 1/2 weeks and ultimately they'd like to keep him there until 34 weeks if at all possible. I'll let you guys do the math on that one.... Other than that, everything else is as positive as possible so we have good hope for a favorable outcome. For now it is just a hurry up and wait situation. I have been well supplied with books, movies and internet and I am hoping to avoid boredom :-) Mackenzie is being well taken care of and I am eternally gratefully to my friends who have jumped in with both feet to show thier support. Also very grateful for everyone's thoughts and prayers, they are greatly appreciated. I will continue to keep everyone posted, wish me luck! :-)
~Jeny

Welcome!

Welcome to Jack's Blog. Okay, so it doesn't have a cute name yet, but I'm working on it. This will be my main means of communication for updates on Jack's progress and how we are coping. Hopefully I will have time to update it regularly, but if not..... well, I'm sure you understand :-)
The first few posts I'll take directly from my facebook notes and updates from his first couple weeks, so if you've read them before, be patient there is new stuff to come.
Feel free to comment or just lurk if you'd like. The one thing that I do ask is that if you are a praying person you take a moment to pray for our little man; we firmly believe in the power of prayer. Jack has already defied the odds for a preemie of his gestational age and there is no doubt in our minds that this is entirely through God's protection.
Thank you everyone and I hope you enjoy!!
~Jeny a.k.a Jack's Mom