Transfusion day

Good morning. Today we went to go visit the boys, and brought some extra family too. Rosemary, (Craig's mom cousin,) was in town from New York. This was her first time seeing the boys, she was very excited.

The boys had a decent day today. They both received blood transfusion, and they both had little baths today.

Patrick
Patrick seems to be doing okay today. They turned his O2 down a little, and even went down on a vent setting. He is down to 1 on his Fentanyl also. They decided to wait to start feeding until maybe Monday. They will also do his brain scan, and follow up x-rays on Monday also. His belly looked less swollen today. The biggest news, was on the tiniest part of his body. His bruised ear is completely healed. The Plastic surgeon came down and looked at it, and prescribed some new medicine. There was a bruise there yesterday at 2 pm while we were visiting, today it was gone. Like nothing was ever there. It has been there for  like 2 weeks, and within one night, gone. I don't know what that cream was, but I think it might be from Hogwarts. They were going to replace his tube tape when we were heading out. I lotioned him up tonight, body and head, and gave him a new hair do.  I feel so bad because the front and middle of his head has thin hair now because of all the cath tape being ripped off. I had to give him a comb up, instead of a comb over. I had to push it from the back. Poor kid. He is 2 lbs 2 oz.

                                                                           Peek-A-Boo

                                                                    Look at my big kid diaper

Brady
Brady is doing good also. They stopped his feeding today because of the transfusion, but started it again tonight. He is up to 5.3 ml/hr. He is 2 pounds today. They said that his heart rate was a little higher today and his O2 saturation was a bit lower. That can be because of the PDA. The blood helps with that. They said he was doing better tonight. We managed to get out of there without a poopy diaper again. I know it's coming, and it's going to be a whopper! He was making his monitors go off again before we left, so they flipped him on his belly. That seemed to help.

                                                                             The boys like lady visitors

                                                                              Trying to find his thumb I think
All in all it was a stable night, which is awesome. Hopefully Monday will give us more good news.
Good night all!
Em

Where is my blood?

Hello to all. I am posting early again tonight. That's right, two days in a row. However, becuase I upset some people yesterday by messing up coffee hour, hahah, I am letting the computer post it at 2 am, instead of now, at 700pm. Tricky little trickster, I know. On that note, good morning to all? How is your coffee. Is it delicious? I hope it is a yummy flavor, or you are having it with a yummy doughnut. Okay, so we did a day visit today, and we had a nice time with the boys. We made it in time for hands on which is always nice.

Patrick
Patrick, well Patrick is looking stable. I almost hate writing that because I feel like by saying it, I am jinxing us. So, when I write they are doing okay, it's my way of being cautious, even if they are doing well. He was not as red as yesterday, and he didn't look as swollen either. You can still see a little bit of swelling in his hands and feet, but it is not nearly as bad as the other night. His O2 was at 44%, which is not great, but they do turn them up before hands on time, becuase they both seem to stress really easily. He is still getting his ear meds. He filled his blanket with pee, and also like three dipaers. He is still on 1.5 Fentanyl which is great. Rumor has it that tomorrow they will start feeding. They also discontinued his antibiotics today, becuase it had been a long enough time since the last negative culture. His little head cath wasn't working, so his nurse replaced it in his arm. She let us watch, and we were amazed. The doctor said that he felt the belly looked good, and that the color was going alway also. He didn't hear a lot of bowel sounds but the oscilattor is very loud, so it's hard to hear sometimes. Overall, we feel that he looked better than two days ago, so we are happy with that.

                                                                       Sleeping after hands on

                                                                                   Looking comfortable, belly looking calm.

                                                                                             5 little fingers...

                                                                                           5 little toes!

Brady
Brady is still snuggled in his little stiocking cap. He was on his back today, so we were able to get better pics. He is up to 5 ml of milk an hour, and so far, his belly is maintaining it. I had to bring in the milk I had today. Eeeeek, serious pressure. We did a little hands on with him also. I won't lie, I was a little worried knowing that he likes to save his pooping for the 2 o'clock hours. He held out for us though, and it was safe! I think he saves it for his favorite nurse, haha.  His O2 was a little high also. He was doing okay today too.

                                                                                   One of my new fave pics I think

                                                                                      Helloooo, I'm up!

                                                                                     I love my daddy

 

                                                                            Sucking my thumb, with assistance from daddy.

Both boths are scheduled to get blood tonight or tomorrow. We have been waiting to get two bags of donated blood for the last two to three days. They have been holding off the transfusions so that we could have blood from people we knew. The nurse called us today and said that they still didn't have it. We told them yesterday to give them whatever blood you have, don't wait for the donated, if they need it, give them whatever they need. We find out, after a little research, that the two bags of blood went inthe wrong places. One was at Baptist hospital, one was in Miami. Well that can't be good. Someone else almost took our babies donation! Oh no! Big poppa Craig called his friend, and he called the bank (in a serious tone,) and before we left, they said that one will be here by the end of the day, one by tonight or tomorrow day. Phewwww.  Crisis averted. We will let everyone know how it goes tonight!

Thanks for checking in!
The Connor family!

Let's talk about blood...

Hi everyone! This is not the baby post, that will be later on tonight. I actually am doing this post to talk about the donations. The blood bank informed us that we were out of blood. We were shocked since like over 100 people donated. Then we spoke to a nurse, who got us the scoop. We actually learned a lot about the blood last week, and I thought I would share the info.
Let's begin our lesson...

What is blood?
Blood is that red stuff (actually, I believe it's blue, it turns red when it hits oxygen, I think I learned that in nursing school, take that Bill Nye the science guy) that flows through your veins. If you don't know about, your probably not a human, and should speak to someone.

What type are you?
This is interesting. We always thought that you had to be one of the types that your parents are. This is untrue. How do we know this? We know this because the nurse told us the boys were A Negative, and we both looked at each other and did the "What you talkin bout Willis?" face to each other. I am O-negative, and Craig is A Positive. The  boys are A Negative. I can donate, he can't. 

Who can donate?
Anyone can donate, but only O-negative and A Negative can go to the boys.

What is CMV?
I have no idea. No, No , I do now.  CMV is a virus that many adults carry. It's not harmful to you, but it can harm a baby, and potentially be fatal. All the donations get tested for the CMV virus. If the blood has it, they can't use it. Therefore, some people that donated are a match, but they couldn't use the blood because it was CMV positive. Therefore, we could have 50 people donate, and there could 20 people that match, but only 5-10 could be CMV negative. Sucks right. Don't fret, your blood doesn't get wasted, it saves an adult, just not the babies.
CMV Virus      This is a wiki definition. It may not be 100% correct, but you get the point.

How long is it good for?
Here is a kick in the baby balls. We were told in the beginning that blood was good for 21-30 days. This is a true story. However, blood being donated to babies, can't be over 10 days old. We were told in the beginning that the blood banks would take whats called a Pedi-Pack. It is like a 50 ml bag. This way, whoever donates, doesn't have to wait that long to donate again. The blood banks are taking a pint instead. Again, don't fret, they split it into 4, so it can go to both babies, or whoever needs it. However, because it is a pint, you have to wait longer to donate. I believe two to three months. Ugghh.

Moral of the story
Blood is tricky to get! If you have donated, you are a rock star! If you know someone who wants to, or, if you want to, awesome! We will take what we can get.  At least know we know why we ran out at the bank so quickly. If you need more info, there is a blood link on the homepage. If you are donating and need info on the boys just drop us a line, and we will get you what you need.

Love to all!
Em

Today was a better day...phewww

Hello all!  Look at me, blogging at 11 pm, and not 2 am like always. First, let me say, Happy one month birthday to our boys! Without getting emotional, let me just say that you make me proud to be your mom.  Your dad and I love you so much, and can't wait for you to come home.

I don't know if any of you have seen these pics before. These were the pics of the boys right after delivery. I am posting them because I look at them and think, wow, what a difference a month makes.

                                                                  Brady, right after delivery

                                                                       Patrick, right after delivery

 My my how they have grown.....

 We decided to do a day visit today.  Craig said that we should start heading in during the day sometimes to meet the day nurses. He is so smart. We talk to them all the time, so we figured that we should meet them too.  The nurse that had them today is really nice. She had both boys today. Last week when I called, she said "Let me start off by saying your boys are cute as a button." I said thank you. I told Craig and he said, well they do look like me, and I am cute. Hahaha. She told us today that they keep her busy! The monitors go off a lot, and they certainly have their own personalities! On that note I give you this ecard that someone posted last week. I find it very fitting.

Indeed, you were my children, indeed you were. Like I said though, today was a better day. We had a shorter visit with them today. They were sleeping so soundly that we didn't want to disturb them. Last night was traumatic for everyone, we could all use some sleep.

Patrick

 We were happy to see that Patrick looked much more comfortable today. He also looked less swollen, and not as red. That made us feel a lot better. We were very uneasy about how he looked last night. Today he looked much healthier. We were there when the doctor examined him. He told us that the belly looked good, and he had good muscle movement in it. If all goes well over the next few days they would try to start a small feeding on Saturday. It might be Pedialyte instead of Milk, just because it is lighter. I did ask him about the redness of the skin. He said that it was okay. It means that he has good perfusion. If he was pale he would be worried. He is scheduled to have a new brain scan on the 23rd. He did have another head cath in. Ouchie! His O2 was at 40%, which is high, but it is what it is. he did get some new medicine for his ear from the plastic surgeon. Have I mentioned that he has an ear issue. I can't remember if I did or not. His left ear is bruised in a line. We all noticed it about two weeks ago. They think that his ear was resting on a tube at one point that cut off his circulation in that spot.  They think is happened during his infection stage. The doctor said that when you have an infection, your blood goes to the area of the infection to help it. The rest of the areas have less of it, so things like that can happen.  they have been putting medicine on it, and it does look better as the week goes on. The doctor last night said that he wanted the plastic surgeon  to look at it to see if he had any better medicine that would help it heal faster. He did have some new medicine today for it, so we will see how it works out.

Less tomato like right?

The angle of this pic makes him look like he has a mohawk!

Brady

I wasn't able to get a lot of pics of Brady today, and you will see why. He is doing okay today. As of tonight, he will be up to his maximum feeding amount. He is up to 5 ml an hour. Oh boy, the pressure is on for me to pump!  So far, so good, he is digesting it well. I am keeping my fingers crossed. He is pooping, so that is a good sign. He will have a brain scan done on the 23rd too.  He is still having some O2  issues, he goes up and down. They said his heart rate has been high on and off too. They said that this is one of the signs that he will need blood soon. They are still waiting to see if the friends that donated the other day match.  They said he is just on the verge of needing it, but if he needs it, and the donated stuff doesn't match, they will use blood bank stuff. Otherwise, he is holding strong.

 I don't care what you say, the cuteness factor always goes up when you add a stocking cap to a child.

He was so snugly, I only whispered to him to not wake him up.

Tonight's big thank you goes out to our realtor Sharon, who took us out to dinner. She also gave us some ridiculously adorable outfits for the boys, and a frame for their little pictures. We are so happy that we met you, and even happier that we have remained friends.  Can't wait for you to meet the boys!

Just for added fun, here is another bath time video from last night.

Have a good night everyone. We will see you a little earlier tomorrow too!

Em, Craig and the boys!

A night of thanks, a night of friends, and a night of me almost having to change my pants.

Tonight...sigh...tonight was a crazy storm of emotions. I am not even sure where to start, haha. We headed into the NICU tonight to see the little guys, and was not aware of the shenanigans that were about to go down. Lets start with Brady tonight.
Brady
Brady was calm tonight. He slept most of the night until we did his hands on. He had a full spa treatment. We did a temp, diaper change, full bath, and an incubator change.  It was a good time. he seemed to like having his little head washed. He got a shampoo and everything. He messed with his monitor all night which was stressful. He is at 30 %  O2. He is up to 4 ml of milk an hour. He had a lot of commotion around his area tonight, so he may have been stressed out. We called to check on them at 3 am, and he seemed to have gone back to sleep.  He seems to be doing well with his feedings.  He has his new blankets on his top tonight, and they look great. I was able to hold him for a few minutes tonight while they changed the bedding. He is going to get blood soon, probably tomorrow.  One of his things is low, and by things, I mean I don't remember what the reason was, cause I'm tired, and my brain is on slowsky mode right now. Craig said he thinks she said that the red blood cell count is slightly low. We are waiting on blood right now from a donor. If it is match, he will get it, if not, he will get blood from the bank.

                                                                             Pre bath

                                                                            After bath, fresh and clean

Hanging with mommy

                                                                    Full body spa day!

Patrick
Where to even start with my little Patrick. Patrick gave mommy a heart attack tonight. Our night started off  nice and calm. We did a temp, and a diaper change, and weighted him. Side note, Patrick is still very red/maroon colored. He is also swollen. They said that this is what happens when they get dehydrated. They swell up. He kind of looks like a tomato. I am not a fan. Craig commented that he looks like the Violet from Willy Wonka. Ya know that part in the movie where she turns different colors, and eventually turns a blue. Yea, it's funny in the movie, not in real life, as I learned tonight. So, the plan was simple, he was getting a new bed, and they were going to flip him to his right side. He has been in the same bed, and on his back, and left side for a while. His head was starting to get flat, and he looked swollen on his left. In order to do all these things, the respiratory therapists need to be involved since he is on the oscillator. Okay, so lets start disconnecting his things and start this storm. I am going to try to describe this situation, but keep in mind it is a blur because I wanted nothing to do with it, and I had to remove myself at one point. His vent tubes go through a hole in the incubator. They have to disconnect them, and pull them out of the hole to move him. The resp. therapist lifted Patrick up, but his suction tube was still in. So when they pulled him up, that pulled out a little, and may have pulled out his e-tube a little also.  At this point, he started to turn a little more red, then I saw him turn a little purple. Keep in mind, he has no monitors on him at all because they had just taken all of his leads off to move him. Is the tube in, is it out, is he getting oxygen, who knows. So, the nurse grabs the new bed, and the therapist calls me to him, so that I can co-hold Patrick while he holds all his tubes in place. Keep in mind that I have not held him yet, this was not a great first time, haha. So I say hi for like 30 seconds, and move out of the way. They pulled over his new bed, and they lay him down. Craig starts to place leads back on his body while they get him settled and hook all his monitors back up so they can see what is going on. What are his vitals at this point, does he have to be reintubated? This is when I decided to move over to Brady's house, where I watched him sleep, and I took numerous deep breaths and tried not to cry.  I let them all do their thing, and then heard the nurse ask where I was. Craig said I don't know, then said probably in the bathroom vomiting. I laughed and said no i am right here, just chilling with Brady. We are talking each other down, haha. I walked back to his incubator, and he looked calm, and was doing well. Holy crap batman! I don't like these games! You are all my witness, didn't I say last night, let's see what Patrinanigans happen today?!  I am positive I pushed out like 25 new gray hairs.

                                                                   Before move

                                                                                      Incision

                                                                                     After storm

After this, we saw that the resp. team was coming over to replace his tape on his face. We decided that the earlier event was enough for us, and we did not want tickets to the next show. 

We then headed to World of beer to meet some friends from work. It was much needed. I don't really drink that much, but at this point, I would have taken a sedative if it came in a 2 for 1 draft. It was good to see everyone though, and it was a much needed break with friends.

I would also like to say thank you to Megan, Jo-anne, Steve, and Sharon. Sharon sent us Portillos, which made me miss Chicago in the worst way! Megan made us delish Stuffed shells, and Jo-Anne and Steve spoiled us with Chili. This was delish after a beer. Jo-Anne and Steve also gave me a bracelet that had been blessed, that had been sent from Puerto Rico. Thank god, literally, that I was wearing it tonight in the hospital, because I was rubbing it like crazy.

We are so happy to have you all in our lives, and appreciate everyone thinking about us.  I love you all!
Em and Craig

Happy 4 week B-day!

Morning to all! Hope every one's day is good so far. There were not a lot of changes tonight in the NICU, which is great, because that means that things aren't getting worse. The boys had their fave nurses on again today. This is good for them, and for us, because we can actually sleep well knowing they are there.  We were able to do our hands on time which we love. The boys even had some visitors tonight. Two of Craig's co-workers stopped by to check them out. Alright, let's get down to it.

Patrick
Patrick looked okay tonight. his BG was slightly high, but they were not worried about it. His O2 was at 25%.  His belly looked the same, it is still green, but there are a few spots that look a little better. His incision looks good. The doctor said they will continue to watch everything. Eventually they will remove the suction from the feeding tube, since there are no secretions coming from it. If everything goes well with that, they will take the tube out. If that is okay, later they will start feedings. I can't wait for that to happen, but at the same time, told him to just heal, and take his little time, haha. He was 1 lb 15 oz.  He was very red tonight from the transfusion. We did diaper change, and a temp, and daddy got to help remove a cath. I cleaned his little face and wiped his mouth clean. For those of you that have known me for years, you know that I have a wicked bad habit of picking my lip. I hate chapped lips. The boys get little chapped spots and they get, like, hard goo on their mouth. I have to be so gentile when cleaning it out, because they hate it, and they get the biggest, angry face ever! I literally want to dive in there, take my nails and peel it all off, and it drives me nuts that I can't! It should be an interesting next few days because his nurse is off. I think we all know what happens when she is not there. The shenanigans, or maybe we should call it the Patri-nanigans begin. Lets keep our fingers crossed that he behaves for the other nurses.

                                                                       All sleepy on my side

                                                                             Getting ready to go to sleep

                                                                                 Sleeping soundly before mom and dad annoy me

Brady
Brady is doing well tonight. He is getting his CRI of breast milk still. They are increasing it at 3 am again. We did his little diaper change and temp tonight. He had some new tape placed on his face, so we were able to get a good picture of him. His O2 was at 25%.  Knock on wood, he is stable at this time.

                                                                                  Getting my new tube tape

                                                                                   Dad listening to my heart

                                                                                         My little paci
That's all from the NICU tonight! More tomorrow! Have a great day everyone!
Em, Craig, Brady and Patrick!

Drain free

Good morning all! Hope everyone is having a good morning. We had a good night at the hospital. We were able to do a lot of hands on time with the boys today. We were able to change their bedding today. We had to go and get some more blankets today because they are going through them so quickly. Those boys like to pee, and when they go, they go..everywhere!  I rather it on their blankets though instead of all over themselves. I don't know if I mentioned it but Patrick shot himself in the eye last week. Oh boy. Okay, here is the scoop tonight.
Patrick
Patrick had a visit with the surgeon today. The surgeon was happy with his belly, and said that it looked okay, so they pulled the drain. The incision is so tiny. It looks like a pimple. The belly did seem a little distended still, but they were measuring the same as what they had measured this morning. I noticed while changing his diaper tonight, that some of the green looked like it was going away. The doctor said that if he does well this week, they may start to feed him closer to the weekend. That would be awesome. He weighed in tonight at 1 lb 14 oz. Some of the extra ounces is due to the blood he received yesterday. He was still a little red too from it. His favorite nurse was on tonight, and I was happy to hear that she thought he looked bigger than last week. I was able to wipe his eyes and his mouth clean, and give him a spa day like his brother. I lotioned his little arms and legs, and was able to clean his head a little. His hair is full of sticky residue from all of his tape, so it is hard to clean. I brushed it the best that I could.

                                                                         Pre spa

                                                                      That is his little scar....Craig made me black bar him, hahahha

                                                                                          Post spa with brushed hair and a clean face.

Brady
Brady is hanging in there. As of 2 am they were going to start him on a cri rate of 2 ml/hr. This really puts the pressure on me to pump! He was sleeping well tonight. Craig did his hands on tonight. They was a lot of giggling in that corner. We thought he almost had his first dirty diaper but no luck for Craig. They tried to take him of the O2 for a second to see how we would do. They said they regretted that immediately. He said no, he wasn't ready. After they were done he let me hold his hand for a while. He always reaches and opens his little hands like he is grabbing. When I put my finger in his hand he holds it tight and sleeps well. I could hold his hand all night.

                                                               Getting my food via nasal tube

                                                            Snugly on my frog blankie

                                                                           Holding tight on mommy's pinkie

We will do some more hands on tomorrow night. Hopefully Patrick's belly will stay nice and soft so that we don't take any steps backward this week. I really want them to start feeding him soon so he can bulk up!

 Mommy update
I did go to the doctor today. She said nothing is seriously wrong, my body is just crazy out of whack and doesn't know what to do. The pumping is throwing it off, and so it doesn't know if I am preggers still or not. She started me on some meds to help my body get back on track. Hopefully they will work soon. I am not going to lie, I look like hell. I look exhausted and pale. I can't wait to be healthy again! Craig is doing well. He is exhausted too, but he is doing great otherwise.
Love you all!
Good night!
Em, Craig, and the boys!