Patrick's test results

Hi everyone, how are you? Well, it's been a rough time for Patrick in the NICU. His results came back for his Urinary Tract infection on Saturday. It came back positive which means he is there for 10 days after the negative culture comes back. They took another culture on Sunday, and that one came back negative which is good. We caught it just in time. They also took a blood culture, that came back negative, which is great. That saves him a 21 day stay. That being said, we had more drama, or I guess not drama.... Somehow, and we have no idea who, what, or when it was brought up, his cardiologist saw him. We don't know if she was just down there looking at other patients, and she noticed he was there, or if she was called. When Craig got in last night, he headed back to his bed. The day nurse stopped him, and told him to prepare himself..he is on a nasal cannula. Are you freaking kidding me?! What happened?  His nurse said that she doesn't know. She said that she came in, and he was on a cannula again, but she doesn't know why, because his saturation levels were high for her all night. So what is the deal? I guess the cardiologist looked at him, and wanted to try a little test with him.She called this morning to tell me the deal. She did an echo on him , and said that he had pulmonary hypertension. I guess his heart went through changes because of the urinary tract infection. She wanted to make sure that he wasn't septic. She put him on oxygen to see if the problem would go away. If it didn't go away, then he could potentially have right sided heart failure. If it does go away, then the heart murmur he has is fixable, and that is good news. At least that is how I understood it.  She said that she put him on oxygen overnight to basically prevent a problem, and to help with his lungs and heart. She said that she wanted to monitor it for 24 hours to see how the heart and lungs responded. She called this morning and said that she is very pleased with the results. She said that the heart was working correctly, I guess the blood or something is going from left to right like it should be. I know I am describing his in the worst possible way, but I was a slight mess last night as Craig texted me about this, and was so tired/happy when she called, that I listened, but it all went away as I crashed back to sleep again. Work with me here folks. Anyway, she is happy with what she saw. I guess that on the oxygen, she saw a difference in the heart, and the way it was functioning which is good, and that basically means that his heart murmur is fixable, if she needs to go in and fix it. She said that he was off oxygen as soon as the echo was done. She gave the nurses orders to monitor his saturation when he sleeps, and when he eats. It should stay high, and if it doesn't then she might send us home with a monitor to watch him, or worst case, with a monitor and oxygen. She said unless he goes downhill when he gets home, or if he has any oxygen changes that we notice, then we will recheck with her sooner than later. As of right now, she is fine with seeing him in a month. She did say that he has changed a lot in a week, his color looks good, and he looks healthy. He is gaining weight, so hopefully his PDA will be smaller in a month. Last night, Craig said he had a rough night with him. He was very fussy, and wouldn't sit still. He was spitting out his bottle, and squirming everywhere. He had to have his nurse finish it for him. His arm catheter blew, so they had to replace it. They tried twice in his arm, and couldn't get it. Soo, it's back in his head. Sigh..o.v.e.r. i.t.  Hopefully he is having a better day today for them, and will eat tonight for us.

                                                                                    I am tired of being here

                                                                                  I just grew my hair back! Come on!

Brady
Brady has been doing fine. He was also a little fussy last night. He wants his bottle but gets so mad that he doesn't have it right away, that he spits it out, and shakes his head back and forth. Once he realizes it's in his mouth he calms down. There is not much new with him, he is just waiting on his brother to get home. Here are some silly pictures that we took yesterday.

                                                                                         This is my serious face...

                                                                                          I'm learning how to shoot webs like spiderman...

                                                                                         Oh goodness, I'm tangled in my own web!

I'll try and write tonight depending on when I get home. I think Patrick is there till Monday at least.

Later everyone!
The Connor Family

Patrick my love, I wish I could take your pain away

Hey there everyone. I have bummer news. We had to take Patrick back to the NICU tonight. Here is how it all went down. We woke up this morning, and he was warm again. We took his temp and it was back up to 100.2. We never cancelled our appointment for today with the pediatrician because we knew we would end up rechecking Patrick. We head in today, and he has a look at him. He says that he looks good. He is nice and alert, and that he doesn't seem painful or anything. He says that eventually his temp will regulate as he gets older and more used to the house. He then asked us how we feel, and are we nervous to take him home? What can he do to make us feel more comfortable? We asked if we could run blood? He said yes, we could do a panel. He runs the blood work and the white blood cells are high. We knew it! So, he calls the NICU, and speaks to the nurse practitioner. She says they can't take him back, but that he should have a full panel taken. She said that he might have to go to the peds floor. Our pediatrician wasn't happy with that answer. He asked if the doctor could call him back and she says yes. He lets us go home, and he says that when he hears from the NICU doctor, he will give us a call. He gets the call from the NICU, and explains what is happening. The doctor says "Is it Brady or Patrick?" Our doctor says Patrick. The NICU doctor laughs and says "Bring him in. I don't trust that kid. If it was Brady I wouldn't be worried, but not Patrick, tell them to come back. As long as he isn't flu or RSV positive, they can come back to the NICU, and not go to the peds floor." Sweet. So, we pack up the boys, and we head to Craig's mom house so she can watch Brady. We head to the hospital ER. They place a cath and run blood. They also placed a urinary cath to get urine. He was not pleased. They took some chest x-rays too. They wanted to make sure he didn't have any issues with his lungs, or that he wasn't septic. All of his tests came back fine. His urine did have some leukocytes in it, so they think it may be a UTI. He tested negative for the flu, and for RSV, so the NICU took him back. When we got upstairs, the nurses all gathered around him wanting to know what happened. He was like a celebrity! The ER nurse that brought us up laughed, and said wow, he really is popular! Yea, not in a good way. The doctor just walked to us and shook his head. He said that they are going to send in the urine culture. It comes back in 24 hours, so we won't know anything until tomorrow night. He either will have to stay for three days, or for 10. Hopefully no more than that.

                                                                                          Waiting in the ER

                                                                                          Waiting for them to take blood and x-rays

                                                                                         I hate being here...

                                                                                      Look everyone, we are back at the NICU!

Brady
Brady is doing well today. He had a nice time at Grandma and Grandpa's house. He got a spa day also. I don't have any pic of him today, we were running around all day, and didn't get a chance to take any!

I will keep everyone updated!!
Have a great night
Em

Stories from the home

Hi everyone, long time no time blog. No, it hasn't been that long. Just two days. It felt weird not to blog the last two days. Heck, It felt weird not going to the NICU for the last two days. It's weird to break a schedule that you have had for so long. On Monday night, it was 7pm, and I was like, ya know what, I'm going to put on my pajamas and not do anything. This is the best feeling ever! We had no where to be but home, and that felt great. Okay, so I feel like I have some updates to give on the boys. Let's start with Monday.

Monday
Patrick came home Monday night, and all was well. We all had a great night. I did not get any sleep. I was wide awake till about 5am. I think I was just to excited to got to sleep. I just wanted to hold Patrick all night. I think I was just happy to be able to touch him, and it not be for something medical. I just want him to get used to snuggling, and know that being touched isn't a bad thing, and that it won't lead to being stuck with a needle, or having a thermometer shoved into his armpit. He seems to be doing very well with it, and loves to snuggle on your chest. He sleeps really well like that. Brady did well also, but has been a bit fussy. Brady is confused as to what he wants these days. We now refer to him as the beast or the hulk, because when he wakes up, he wants to eat, yesterday. If you see him moving, you better have the bottle ready to go, or you are going to hear about it. It is not pretty. I think he gets that from me. When I get super hungry, I get a little cranky with people. Patrick is on a every 3to 4 hour schedule, and Brady is on a 4-5. This makes for a busy night, since they are always waking up opposite of each other. This is fine if we are both awake, but if one of us is sleeping, it becomes a problem. The other night, I was feeding Patrick, and Brady woke up. The screaming started and Craig was sleeping. I was trying to comfort Brady by talking to him, but he wasn't having any of that. I had to wake Craig up, to feed him. This happened 2 or 3 times. It was not fun. We made it through the night though, and we moved on.

                                                                                         This is how we slept the first night. I slept on the botton of the couch where the dog is. He slept next to me. It was a bit crowded, but I was not walking up and down the stairs all night long. by the way, the dog couldn't care less that there was another baby.

                                                                                       Hanging out together

                                                                                    Little Patrick

                                                                                   Little Brady. Okay this outfit is my favorite on him. It is very form fitting, and I love the way his belly looks in it. I try to eat his sides all the time.

Tuesday
Well, in true Patrick form, he made it about 12 hours before giving us problems. Craig noticed that he was a little warm when he woke up. I told him to take a temp real quick. he did not. Luckily, we were able to reschedule his first pediatrician appointment for that morning, instead of our original one on Friday. We go to our check-up, and they take his temp. 100.7, yikes! The nurse checks it again, this time in the tushy. Yup, still high. We try to figure out what made it happen. Was he hot in his outfit, the car, the car seat? Either way, we start to worry, and I think you all know why. He does his exam, and seems to be doing well. At one point, after all of the medical questions are through, our doctor giggles a little. We start laughing and ask what? He doesn't think that  he has ever had a kid that he actually had to fill out a issue in each body section on his medical form. We start to laugh. He laughs again, but then says, all laughing aside, you have two miracles here, they are doing very well.  We agree. Before we go, he takes another temp. Still high. He says that as long as he is acting okay, he isn't that worried and to watch it. If it gets to 101, then call him. He says go home, just watch him, but don't be crazy temp takers tonight, just watch his behavior. Yeah right, hahaha. Of course we are up all night again, and we took a few temps here and there. We found that if he is in clothes, he is in the 100's.  If he is naked with a diaper, he is in the 98/99 region, but his feet and hands are freezing. We put socks and mittens on, and a light blanket. Super thin blanket leads to 100. Are you kidding me? No blanket leads to shivers. Oh Patrick, you silly kid you. We find a happy medium., socks, mittens, light blanket on legs only. This is dumb. Thankfully, our doctor told us to keep our appointment that we originally had on Friday, just in case. This went on all night. Brady did the same thing as the night before.

                                                                                  Nap time after a long night awake

                                                                                 I hope I'm not getting sick

                                                                              Sleepy heads

                                                                               Just before nap time with my little man
Wednesday
We went to see the eye doctor on Wednesday. This is becoming more of an issue, because Brady is very strong. I have to hold his arms while the nurse holds his head, and it's getting tougher each week.  He said the treated eye, the left eye, looks very good. The right eye, which is untreated has a little more grade three Retinopathy in it. It's a little worse than last week. He said that is not bad enough to treat it yet, but it may need it soon. We asked him if he would do the injection again, and he said no. Oh no! He said that he would do the laser this time. He told us that after your due date pretty much, they have found that the injection doesn't have great results. We said has he ever tried the injection, and then gone to the laser afterwards. He said that he wouldn't recommend it, because you are risking two infections potentially instead of one. The laser does have more risks, because you are killing the actual veins,  where as the shot was fixing them. One of the big concerns is he could lose his peripheral vision in those spots, and need glasses, or worse, lose all side vision, and not be able to drive. He did say however that he has seen kids have stage three and it not cause any problems, and they don't have to be treated, they just might need glasses. If he does need the laser, he has to go back to the NICU, and be intubated again. We just can't get rid of that place!  I am happy though that we can bring him and Patrick in on the same day. The doctors have been really great with letting them share appointments. By the way, Patrick's temp has been good today, as long as he is not in blankets or full onseies. Still annoying.

Today
Today was Brady's first cardiology appointment. Where was it at? Our home away from home, the good old hospital. Luckily, we were able to get Patrick in too, which was good, because surprise, his results were a little worse than Brady's, but not bad. Brady's PDA (murmur) is very small. She said that he has a good functioning heart, and it looks like the PDA is resolving. As he gets bigger, it should continue to close. This is good news because awhile back, we thought he would need surgery for it. Patrick's PDA was still open, and it wasn't worse than before, but wasn't better either I guess. She said that she is not going to do anything for it at this time. She thinks that there were two reasons that it could still be open. One is some kind of pulmonary pressure, which I can't describe to you. The other is prematurity of the lungs, which we know he has, and has struggled with for awhile. This is why he was on the O2 for so long. She seems to think that the prematurity is the problem. She is going to check him in a month, but not Brady. She said that she would like to just monitor Brady's weight. She thinks that once Patrick starts to gain weight, and his lungs get better, than the PDA will shrink.  She is going to give him a month. If there is no difference, than he might need surgery. If there is, than she will just monitor. The surgery consists of them putting a catheter in and closing it that way, I think. She said that they don't cut through the back because he is older now, and there can be damage to the nerves that way. She doesn't perform the surgery, another cardiologist does it at one of the big children's hospitals. I am not ready for that yet. Like always, it is what it is. We will deal. Secretly, I am freaking the eff out a little. Let's hope he grows this month, and that she sees a difference next month. If not, the blog might be emotional again!

                                                                                    Patrick during his echo

                                                                                         Brady after his echo

                                                                                            Napping after the drama of the appointment

Alright kids. I hope this was a good update!! I will have more soon, I'm sure! I miss you all!
Good night!
The Connors

Our final days in the NICU

Hi everyone! How are you all doing? I hope all is well. Well, we are getting so close to seeing little Patrick at home. This NICU has become such a big part of our lives, and it has been such a constant, that it is going to be weird to not be there.  I'm going to take a moment to go over our 4 months with you.
For the last 4 months, we have been at the Broward General NICU, in the Chris Everett Children's hospital.  We were there for 196 days.

We leave every night at 7:15pm, like clockwork. That gets us there by 8pm for our hands on. We pass notable places like the "Booby Trap": Love stuff store. A Place called "The Mental Ward" which is a comedy club, and "The Kreepy Tiki" which is a bar/tattoo parlour. Yeah, it's a great part of town, haha.

                                                                              The Mental Ward

                                                                                            Booby Trap

We have walked down the long hallway through the ER about 130 times. We show our bracelets to the security guards, who after 196 days, still don't know who we are. However the lady at the front desk, who sees us twice a month, does.

We pass the Grand Piano that plays all kinds of music. I like to play a game with Craig called "Name that Tune in 100 feet." Basically, it comes down to, can you name that song by the time you leave the long hallway to the time you get past the gift shop.  It has played approximately 292 songs, give or take. I have guessed right at least 260. Most played songs, Elton John's "Circle of Life" and "Don't let the sun go down on me" Weirdest songs randomly played. "Ghostbusters" and Christmas songs...in August.

We then head past Starbucks, Subway and McDonalds to the Elevators.

Yumms food!

We enter the hospital NICU here, where we get buzzed in.

                                                                                        Buzz me in please!

                                                                                           This way please!

                                                                                      Bye froggy, I'll miss you!

                                                                                       Thanks for keeping the boys cozy!

We walk past the little kids section with the animal table.

We walk down the hall and get buzzed in again.
We go to the scrub sink, where we scrub in for 3 minutes, then place a gown on. We have scrubbed in approximately 155 times. On occasion we were there twice a day. We have worn about 155 hot sweaty yellow gowns.

 We sign in as Mom and Dad Connor each time. We did numerous diaper changes, taken tons of temperatures, and have given more bottles than I remember.  We stay and chat with the nurses, who have become new friends in our lives, and who have already asked to hang out with us after we leave.  We get rounds from the amazing doctors, who from day one have treated us like family.

We talk to the other parents about their babies, and talk about coming to the reunion so that we can all see each other again. We make play dates with other babies there. We say hello to new babies, and goodbye to babies that make it out healthy. We talk about who is here for what, and how long that they are staying.  We have seen babies who have just been there for two days. Babies that have been there for weeks. Babies that have gone home, then come back. Babies that have gone to progressive, then back to acute, progressive, then acute. We have seen babies go home in great shape to new parents. We've seen lots of twins! On a sadder note, we have seen babies that belong to babies, babies that are addicts, and babies that pass on. There are good times in the nicu, and there are sad times there too.  the saying that this will be a roller coaster from hell, sums it up. There were great highs, and terrible lows.

We stay until about 12 am, then drive 45 minutes back home. We may or may not leave through this door...a lot.....

                                                                                      Cause we are rebels....

On the way out of the hospital we pass a wedding dress shop. They have changed the Brides dress, the Tux, and the two bridesmaid dressed a total of 6 times. They have all been beautiful with the exception of one bridesmaid dress. We come home, stay awake for awhile discussing the events of the night. I blog, then go to sleep, to do it all again the next day.

The things I will miss;
The nurses
The doctors
The front desk staff who calls us mommy and daddy Connor
The parents of the babies that the boys "grew up" with
Their baby friends
Starbucks most nights
Mcdonalds almost as much

Things I will not miss;
The drive
The gowns
Scrubbing in, and waiting for the 20 snail like moving parents ahead of us to get out of the way.
Parents complaining
The alarms on the monitors
The phone calls in the middle of the night that scare the life out of us.
Waiting for test results
The "Who's taking care of our baby while our primaries aren' t there?" feeling.
Trying to decipher what Dr. Tanfulla says to me with his thick accent.
My bracelets, or my "bacteria holders"
The scary parking lot where I feared for our lives each night
The gas bill
The Sunpass bill.

All that being said, our NICU days will soon be over. I will miss you in so many ways, and then not at all. In the end, we have two baby boys who will be spoiled, and loved to no end. We owe that all to the NICU. You have given us two amazing gifts, and there is not enough ways to say thank you for everything that you have done.

Okay, now that that is out of the way, let's get to our updates
Patrick
Our little man is having a better day today. He was still a little fussy with his bottle, but it turned out that the nipple was cut to big again. We fixed it, and then he did well. His butt is still looking great. He didn't have any brady or dsating issues last night. They did his car seat test, so he will be ready to go, and he did pass it, yea! He had some blood work down to check his levels, and it all came back fine, including the phos, for his bone density. He was 6 pounds 3 ounces.

                                                                                 Me, Patrick, and Pria. She used to have Brady alot when he first got there. She is the inventor of what we call the "Pria position." Brady used to try to pull out his tube, and she used to pin his arms to his side by folding his blanket around him. Whenever we walked in and saw it, we knew she was his nurse that day.

                                                                                     Dr. Tryzmel. Before this pick was taken, Patrick started crying. He held on to him for a minute rocking him, and hummed a lullaby for him until he fell asleep.  We will miss him. He is an awesome doctor.

                                                                            Me, Dr. Tryzmel, Patrick and Craig

                                                                              Me, Craig, Amanda (Patrick's first day primary)

Brady
Brady is having a good day. He was wide awake today for Craig. He woke up around 8 am, and stayed awake til about 1130am.  We stopped by Craig's parents house today, so he had a little visit. Craig's dad took him on a tour of the house, and showed him where all the toys were hidden for when he gets older. He is back to eating somewhat normally today. he is still spitting it out a little, but otherwise doing good. I didn't get any pictures of him today because we were running errands and stuff. Oh wait I did get this one...
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                                                                                           SURPRISE!!!!!!!
                                                                                         PATRICK CAME HOME TODAY!!

    Did I get you?! Okay so here is the deal. I knew last night that he was coming home today. I tried to play it off in the blog last night so I could surprise you all today! We got home tonight at about 9pm. At first they had said Wednesday, then last night, they said nope tomorrow. I was of course terrified after last nights drama, but he did great overnight, and they said it's time to go! He did great in the car on the way home!

                                                                                        I'm not sure about this boppy yet...

                                                                                      The loves of my life

                                                                                     The "boppy brothers"

                                                                                       Einstein took him in right away. He is being such a good boy!

                                                                                      Little man

We are finally done with that place! I just want to take a minute to say thank you. Thank you to everyone that has kept up with the blog each night. Thank you for the support that you have given us, and for  giving me the push to keep doing it each night. Thank you for all of the kind words and prayers that you have all sent our way. Thank you to everyone that has given blood to the boys, and sent gifts our way. This would have been a lot harder if we didn't have all of you in our lives. I know  I have said it before, but we truly are blessed to have all of you. I can't wait for everyone to meet them one day. I can't wait to tell them about all of you, and all the support that they had. This has been a crazy, scary, happy, terrifying, learning, and amazing experience. One which we will hopefully never go through again!  I will still keep blogging, so stay tuned. It just might not be as much. I will keep everyone updated on all the doctors appointments and there progress. Don't worry!
Alright, I have two hungry boys to feed, so I must go.

As I sit here and get ready to feed them, I stare at them moving all around, and all I can think of is this.
We are home
We have our boys
Our life is now complete
Our family is now whole'

Love to all
Emily, Craig, Brady, and Patrick Connor

Almost there!

Hi everyone! Sorry I didn't blog last night. I literally came home, picked up Brady, sat on the couch, and we both fell asleep. We had a great nap until like 4 am.  This not blogging thing is getting serious, haha. Or maybe it's the lack of sleep that is getting serious. Either way, here I am, and don't fret, I have pictures.

Patrick
Patrick stressed me the heck out last night. I walked in to his nurse telling me that he did great all day. She said if they had said that he was going to go home soo, she would have said no way. She said that this week, he has made a huge jump, and he that he looked phenomenal today. I was very excited to hear that. She said that he ate very well in the morning, and drank all of his bottles. There was like 60 mls in them, which is a lot for him. She also told us that speech therapy spoke to her, and she told us what to do to feed him better. Awesome. She then switches over to the night nurse, and comes to say good bye before she leaves. The alarms go off. His heart rate drops to 80. Umm, what? She says what was that, and we both sigh. He is so close to leaving, but can't if this crap happens. She says just watch it, and if it happens again, we have to report it. Okay. I start my hands on. Here is where it all goes to downhill. I wake him up, which I hate doing. He always looks so peaceful when he sleeps. I flip him over and change his diaper. His little tush looks great. I do his vitals, and he was a little warm. Not a fever, just running normal lately. Noo biggie. His heart rate drops to 79. OMFG, what are you doing? We move on. The nurse cuts his nipple for his bottle, so that the oatmeal comes out better, and we begin to feed. What a fricken disaster. He had a bottle that holds 60 mls. I would say that he got about 20 mls of it. I noticed he is drooling some of it out. I wipe his face, and he spits some more out. Okay we are down to 25 ml. What? There is no way you drank 25 ms already. Let's try this again. I see him sucking and I see it going away in the bottle. Great, he has it. I pull it out to burp him, and the another 20mls comes pouring out, all over his clean shirt I just put on him. He was storing in his cheeks apparently. WTF?  So, I get a new nipple, just in case she cut the hole to big. She did. So we start again with a fresh nipple. He drinks 5 mls. He was over it. He slept through the whole thing. I get up, give him a new shirt, and tell the nurse we need another bottle. We try again, he eats another 5. Now we are both over it. We move on. So, I decide, lets relax, and we will try again later. I sit and rock in in the chair. His monitor goes off again. Okay, No I am getting annoyed. It starts flashing and I see his spo2 rate got o 80, then 89, then 92, then 84. Then, as I am watching it, I hear like an electric shock noise, and the monitor turns black. What the fricken frick!!?? Of course, my nurse is not there, and the other nurses are at the end of the pod. I yell to a nurse that I know, and she comes over. The monitor comes back on and it is saying his heart rate is 274, his spo2 is 60, and basically shit is out of control with alarms screaming. My nurse comes over and checks it out, and the other nurse says check his leads, it's not reading right. We check the leads, reposition them, and it starts reading. Heart rate is fine, spo2 stayed in the 90's for he rest of the night. So, did he really "brady" or was the monitor just bat shit crazy. Either way I was starting to sweat. Everything finally calms down, and he falls asleep. The doctors come over and say soon for his departure, maybe Tuesday. Great, I can't wait to get out of here, all the while sacred to death that he is going to crap the bed when we get home. The joys of parenthood. No sleep from here on out.

                                                                              I should have just let him sleep

                                                                                   My clean shirt before feeding

                                                                                    My shirt after feeding

                                                                                   Sticking my tongue out at this situation.

Brady
Brady also had a fussy night eating. I want the bottle, but I cry and push it out. No, I want it. No, I don't. Oh these boys! I swear they do the exact same things, and it cracks me up. He has a lot of appointments this week. We are going to be busy. He is eating up to 120-180 mls of formula. What a big boy! He did with his vaccines this weekend, no issues. He has been staying awake more often now. I can't wait to see him and Patrick together.

                            Love my daddy

                                                                                     Love sleeping

Speaking of boys who are so much alike...
Who remember this picture?

                                                                                     Brady

                                                                                     Patrick
What a bunch of nutters! Hahahaha.

Alright kiddies! Till tonight!!

Love ya
The Connors