Halloweenie

Today was the Halloween party at the NICU! Cameron looked soooo cute in clothes...purchased from Buildabear as nothing else would fit these little guys. Getting into clothes would have been too stressful for Brody today as he was a little more touchy. We will get his pics in his costume this weekend when he's feeling more up for it. We still had time together for Kangaroo care so it was a great day either way.

Btw, the "poop" that we are speaking of was some leftovers on the window of his isolette from the "airborne movement" the day before. Nasty.

Airborne Movements

Today I finally got to hold Cameron for the first time since his infection. He got so big! He did great and other than a few desats he made it for three hours...just mommy and Cam. I learned my first lesson in projectile poops : )

Tomorrow is their Halloween party!!!! I can't wait to see them in their itsy bitsy costumes!

This weekend I will be trying my hand at painting for the first time in attempts to get the boys room ready. This should be an adventure!

Both Boys Hit 2 Pounds!!!!!

2 lbs and Daddy Kangaroo Care

Brett had the chance today to hold Brody for his first time! Brody did great and loved a little chest hair for a change : ) He did so well that he then was able to do kangaroo care right after with me as well-a total of 3 hours out of his isollette and maintained his body temp...of course with the help of our body heat-a big accomplishment. Brody is 2 lbs 1 oz-a major milestone weight...Cameron isn't far behind at 1 lb 15.5 oz. Once they hit 2 they typically grow much quicker and are bigger and stronger and more significant progress usually follows. Cameron had another transfusion as his hemoglobin was low so he didn't get to participate in all of the fun...hopefully in a few days though.

Prior NICU Mom Meeting

Our NICU!!
http://www.philly.com/philly/health_and_science/20100810_Evolving_techniques_improve_preemies__chances_of_survival.html

Today we went to hear a past NICU mom speak about her experiences with her son born at 23 weeks and 5 days. We didn't know what to expect to hear about her son's development as success rates for preemies born before 24 weeks gestation are typically very low. I also was not expecting her to bring her son, now 4 years old. When I walked in and saw Sam I cried before I could introduce myself. I could not believe that the adorable, talkative, funny little boy in front of me was born 1lb 6oz. We have a looong way to go yet but it was very comforting to have met Sam.

Hoping to hit our 2 pound milestone any day now!

Cameron's Surgery Success

We made some great progress this week with his infection-all of his cultures have been negative but he needs to stay on some pretty strong antibiotics for the next 30 days... that need to be administered intraveneously. While he was still considered to have the infection they didn't want to implant a pic line or any foreign body as they are known to harbour bacteria. In the meantime they placed IVs in every vein they could find in his tiny little body and blew them all out. This morning we were told that he would need to have surgery to implant a central line to administer the antibiotics and take blood, etc. The pediatric surgeon from St. Christopher's came up to perform the surgery. They cut a small incision on his neck and accessed the "jugular" vein and burrowed the implant in and back out of his side. This should stay in place for the next month so that the stresses that we have gone through on a daily basis regarding piclines and IVs should hopefully go away.

Both boys are 1lb 13oz and some change. They are looking like babies and outgrowing their "preemie" look. It's hard to keep in perspective how small they still are because compared to how small they were a few weeks ago they are really big! We have to get over the 2lb hump! Both boys have also entered the respiratory phase where their chests tighten and they need to give them "inhalers" in their vents. Also typical for preemies-nothing out of the ordinary. The boys will not have fully developed lungs like the rest of us until they are 6 or 7 but most will outgrow their respiratory issues at that point.

I try to always end on a good note...changed both of the boy's diapers today...I am shocked out how much poo those little boys make...shocked!

Cameron earlier this week-so freakin cute sucking on his vent like a paci

                                Cameron again, a little swollen from his meds, more pics of Brody to come

One rough week... looking like it will end on a good note

I haven't posted much this week because it seems that as soon as I post one update, the details tend to change too quickly to keep up with them via the blog. Early this week Cameron was diagnosed with Staph A (Aureus-the worse of the 2 common types of staph) and he had inflammation in his spinal fluid. After giving the little guy a spinal tap and extruding fluid, his culture came up negative for the bacteria but still the white blood cells were elevated enough to have to treat him as if it was meningitis. Our first substatial "hurdle" since the boys were born and a huge one. As prepared as we try to be when expecting obstacles, this news was devastating. The doctors and nurses kept telling us that Cameron did not look or behave like a sick baby. His coloring was great, he was active and in no way lethargic and thank G-d he was not exhibiting any outward symptoms of meningitis. The infection hung around and kept testing positive in his blood culture. They removed his pic line, did another echocardiogram and another brain ultrasound. Again, thank G-d his brain US was still clear of any fluid or bleeding and his heart was clear of clots and any lingering infection as well. Whew! But still, his culture came up positive. Finally today, his 24 hour culture came back negative!!! They need to obtain 3 consecutive days of blood samples with negative results before the declare him clear of the infection but it's a great start. He will still have to stay on his "big guns" antibiotics for 30 days. My poor little man has been through so much this week.

I had a fever Wednesday night myself and was not able to see the boys the next day. It was awful to not be right there by their side. Lesson learned-don't run myself into the ground... 

Today when I went back to the NICU while the floor was under construction all of the power went out. I watched as all of the monitors went blank and panicked as I watched the nurses rush to all of the babies. Their ventillators all shut down and I watch the boys get bagged as the nurses manually pumped breaths into them. A few seconds later the power came back on and I was in complete shock. This was NOT something I expected to encounter. In those very short seconds I thought I was going to lose them both at the same time and all I could do was stand there helpless. Again, thank the big guy that the boys vitals were all perfect when everything went back on. Can we please get one boring, uneventful day???

Tomorrow the boys are 3 weeks old!!!!!!! We are sooooo lucky to have them.

10/11/10

Just a quick note on the boys for today:

Brody is doing great and up to 17cc's of milk and IV. pic line free... still on his vent but doing very well. Theme of the week for Brody is nutrition and weight gain.

Cameron has been hammered with one thing after another-staying tough but could really catch a break. On the very good side, his PDA closed up for now and he won't need another dose of Indocin. He went back on his vent this morning as the poor little guy was all tuckered out and his bloodwork came back positive for Staph-the specific strain we will know tomorrow. One of a preemies biggest enemies is infection so I was a nervous wreck all day waiting for more information on what this means for Cameron. He is now on the strongest antibiotics they can give him to hopefully knock it right out. Please say one of those prayers you've all been so good at for Cameron. He's tired and aggitated and just wants to be left alone to grow like his brother.

They are both getting cuter and cuter by the day. It's amazing to watch their features grow before our eyes... Brody is surely a Collins (he looks exactly like Brett-one teeny tiny itsy bitsy Brett) and Cameron a Tannenbaum (strangely just like my brothe)r. Ugh, they are the cutest!

Bright Eyed

So both boys have had their eyes open and seem to be doing more than just reacting to light (which is what I expected of such tiny guys). When Brody looks at you it seems to be with purpose and Cameron is following close behind. I love watching them watch me.

Cameron finished up his first dose of Indocin for his PDA and has an echo tomorrow with the cardiologist to see if they were able to "krimp" the vessel and close it for now. Last night his doctor also heard an arythmia or irregular heartbeats but his EKG came up normal as well as his electrolytes... something to keep an eye on, but they don't seem too concerned. Poor little guy had another pic-line removed and replaced and seemed pretty uncomfortable after. It is so hard to watch them squirm when they are hurt but it seems as if their senses are developing a bit for them to feel as much as it seems they do now. Cameron could use a little break from the annoyances of these little procedures. Overall he is still doing great and experiencing things that are expected of preemies.

Brody looks more and more like Brett every day. It's so cool to watch their features develop and get a view into who they will soon be. He had some fluid in his lung-again normal in preemies. He is up to 15cc's of milk and off of his "gatorade" completely. Pretty remarkable. Newborns at 40 weeks are usually on 30cc's at first.

We are trying to distract ourselves by getting the house together for the day that my boys come home. I am recruiting handy people as you all know my husband is not one of them :  )

By the way, when the twins are big and doing fantastic we are going to have the biggest Coming Home party in their honor!!! We ALL deserve a big celebration at the end of all of this.

World's smallest binky is still too big for the boys

Rollercoaster or See-saw

We have been hands off with the boys for the past few days. They were having a ton of episodes and just needed to be left alone to grow for a little. Cameron's nurse let me try to hold him again yesterday. We had some good QT time and he even sucked on tiniest pacifier I've ever seen! Then he had 4 episodes in a row and turned grey in my arms. Once we got him back into his isolette he was fine but it was pretty scary. We are trying to keep the environmental stimulation to a minimum and just let these babies do their thing.

We learned last night that Cameron's PDA in his heart needs treatment. He started his first round of medication (Indocin) last night and this will continue for 48 hours. The Indocin restricts all of the blood vessels in the body in attempts to close the blood vessel in his heart that is open and causing a problem. In order to minimize other serious complications from the meds he will not be able to receive his milk during the course. He is already down to 1.44 lbs so I'm a bit worried about him losing any more weight but will wait to speak with his doctor at 12 today... again, this is all par for the course.

The nurses tell us is is near a miracle that Brody has had no complications thus far with a PDA-the vessel can open at any point in babies so young, but so far so good with him. He is 1.72lbs! I was so happy to hear that he is gaining some weight.  He went back on his vent yesterday but it's a good thing... he was only on one for 2 days right when he was born and has been doing all of the work on his own since... little guy is pooped! He needs a little break to regain some strength and gain some weight.

Praying the first round of meds does the job for Cameron.

We just got our flip video camera... stay tuned for videos of our little men.

The nurses gave us one of Brody's hats-I know it's weird, but Brett and I take turns smelling it-full of that baby smell that we love so much!

Thank You

While our communications may be few and far between and it may seem like we are dodging calls (because we are...not in a bad way... we are just mentally and physically drained, exhausted, overwhelmed, etc.). We just want you all to know that it is your love and support that keep us and the boys going. Your calls and texts and prayers are very much appreciated and needed. Your meals, flowers, cookies, and LOVE have brightened our days. THANK YOU. THANK YOU. We love you all so very much.

M,B,B,C

Cameron Doesn't Play by the Rules

When we woke up this morning and made our usual check-in call we learned that one of our kids was misbehaving last night. Since Cameron's ventillator went back in 2 days ago he decided he didn't want/need it anymore and he was going to take matters in to his own hands and cough it out. Daddy's rebellious little man! He is now ventillator free once again.

My visit this morning was a little rough... they were taking turns with their apnea episodes-they were forgetting to breathe a bit too often for our liking. As Brett says, it was like a casino in there with all of the machines flashing and alert sounds. It's pretty hard to watch when they have to be nudged to bring them back but it comes with the territory of being so small. All of this unfortunately is typical for this stage.

I left earlier than usual so that the boys could rest without being bugged for once. These kids need to just "be" and grow for a little. It gets harder and harder to stand by and not be able to do much but I know that they are in good hands.

I just called to see if they were doing any better and got a little relief to hear that they are. They decreased their feedings which hopefully took some pressure out of their bellies and therefore off of their diaphrams and lungs... I had a weird intuition that they were increasing their feedings too fast but I'm not a doc, what do I know??  A lot of this type of medicine is trial and error...wish the error part would stay away from my kids though.

So, we're "STATUS QUO" again. We like status quo. We hope to be hearing status quo a lot.

I love these kids so much it hurts.

Kangaroo Care with Cameron today!!!

Today I got to hold Cameron-he still has his ventillator in but the boys both looked great today. They are gaining weight and will be up to 12 cc's tonight and off of their Gatorade. They will also be adding extra calories to their milk to bulk them up (a little Super Pump 2000-Zucker is the only who will get my humor). I was able to kiss his little head as he doesn't have to wear the same gear that Brody has right now. Love that baby smell!

Back to the hospital with daddy so he can see how good his boys did today

Sidebar, pics of Kito and Mazel when we brought home blankets from the boys. Looks like love.

Medical Update-Day 10

Babies are now 10 days old or 26 weeks gestation.

Brody is 1 lb 5.5 oz and Cameron is 1 lb 6.5 oz. They have been gaining weight since their feedings were increased to 8cc's (almost 2 tbsp) of breast milk every 4 hours. They are tolerating the milk well in addition to their "Gatorade" or fluids with nutrients and electrolytes they administer. They lost weight after birth as every baby does and now it seems like we are on the upward climb. 2 lbs here we come!!!

Brain Ultrasounds last week and yesterday came back clean as a whistle! Whew!!!!!!!! They will continue to do these once a week for the first month but this is very good so far.

PDA-the ductus arteriosus in the heart should close to allow blood to flow to the lungs to become oxygenated. If it doesn’t, a heart murmur may be heard. A PDA may close on its own or medications or surgery may be used to close it.
Brody's been clear for a PDA so far but his could open at any time. Cameron has had a small PDA that unless is gets bigger (it has not grown in the last 2 echos) they will not treat it. Again, typical of preemies and not a problem unless something changes. Just something to look out for.

We are pooping like champs!


Brody with Brett's wedding ring around his arm

Cameron holding on to mommy's finger

Kangaroo Care-I get to hold Brody for the first time!!!

I was having an absolutely awful day yesterday. I woke up anxious and spent the majority of the day crying. Brett went back to work as the bills still must get paid and I went to the hospital with his mom. I just couldn't keep it together. We have been so strong for weeks now and it all just caught up with me.

Brett got home and as exhausted as we were we went back to see the boys and begin to get accustomed to our new schedule. Brody and Cameron are now 9 days old and have ben through quite a bit during their short time out in the world so far. Both babies were taken off of their ventillators 2 days after they were born and were able to stay off for quite some time breathing almost room quality air. We were very fortunate for this...the longer they were off of their vents, the more muscle they could develop on their own. As with all preemies, they eventually tire out and need to go back on probably several times on this journey-this is not viewed as a setback but as a break for them to grow and rebuild their strength. Cameron was placed back on his 2 days ago and Brody is holding his own, but had a lot of episodes (apnea-they stop breathing as the communication from their brains to their lungs is not completely developed. The nurses will stimulate them by touch or they will give them a caffeine boost to remind them to breath) yesterday. After a blood transfusion he was doing much better when we left last night and was still vent free. Cameron had a transfusion 2 nights ago and another one in the morning. These are common as the babies are anemic.

Back to the good stuff...I got to hold Brody!!! It was quite an operation to get him out of his isollette and into my arms as all of his gadgets had to stay connected to monitor how he was handling being exposed to the elements of the room. It is thought that the sound of the mother's heartbeat is essential to baby's development in the womb so these sessions are looked at as therapy. Being able to have his whole little body squirm around on me was an amazing experience that made me feel like a mommy. Before this we were only able to touch a foot or a hand or change a diaper so being able to hold one of my kids for the first time was pretty powerful. He laid stable and at peace for an hour. AMAZING. Hopefully they will let me do the same with Cameron today. I am going to push to do this as much as possible... I think it is incredibly important for their development.

Better Late than Never: Our Pre-baby Hospital Experience

This was written on September 20th and 24th. I never sent this out to everyone as I didn't know just how personal to get with my communications, but to truly understand what we have been through, I think it's important to know what we were experiencing for the month that we were on hospital bedrest. Brett saw things a husband should never have to see their wife go through...while I endured plenty that a new mommy should never have to either. I delivered shortly after the last installment of this email.

We are afraid to be too confident when we are having a good day as we know how quickly things can change but celebrating milestones in this unpredictable process is essential for our mental states. Since my last entry is was still a pretty rough few days but we have come a long way! We are now at 24 weeks and 3 days...every day at this point is a huge accomplishment as the babies lungs are in the essential stages of development. We are so incredibly lucky to still be here. When my doctors come in for their daily rounds I can see the utter amazement at how long I have been able to fight and hold on for these kids. 

A few days ago I was bleeding pretty severely again and was again at high risk of something happening- iron levels dropping, blood pressure bottoming out, etc. When that cleared up then my temp went up to 99.6-they would have had to deliver me at 100 degrees due to possible infection. Yesterday I couldn't even pick my head up I was so weak and tired and drained. Today however seems to have an optimistic start.

Sent from my iPad

From: Melissa Collins <meltannen@yahoo.com>
Date: September 20, 2010 8:57:31 PM EDT
To: "bcollins@collinshirsch.com" <bcollins@collinshirsch.com>
Subject: Hospital

Up early today (Brett and my mom are still sleeping-they have been here 24 hrs a day since the shit hit the fan Tues)waiting for my second round of steroid injections, a day we've been looking forward to since all of this started a very slow moving 3 weeks ago. They make me pretty sick along with the laundry list of other meds I'm on a million times a day but no complaints here...the end result will be well worth all of the pain, sickness, sacrifice and complete mental anguish this has all brought on. As you know...it's not like we have ever sailed thru life on the easy road and have been thru our fair share of pretty difficult tragedies but nothing has even closely compared to this. I literally saw the light Tues when I went into full active labor-contractions too often to count, bleeding very close to hemmorahging, etc. They brought me from the mom unit where I had made home and was fairly comfortable down to L&D and were setting up to take the babies. I prayed and prayed and prayed but everyone was pretty sure this was the end. I don't remember how or when things changed but they did and we came out of it to fight another day, or at least hour by hour. NO ONE thought I would be here 18 hrs away from a week later and viability. It's amazing that I have had these little guys in me for 6 months now yet their chance of survival is only 40-50% still...and survival tends to be a relative term as complications and quality of life are not factored in...oh and all of the statistics for anything pregnancy related is based on singletons...not much data exists for multiples. In a medical world of a changing technology that I personally see everyday, i am baffled to learn about how uncertain of a specialty OBGYN is. Other than the monitors that show them how regulated or how bad it's getting...when you do get to the danger zone soooo little can be done, or even done in preparation for an alternative event. So we are a few looong torturous hours from our first landmark that we have been looking forward to for what seems like an eternity now and now when I wish I could breathe a little yet I am constantly being reminded of how unsafe the babies still are. I'm going to need serious extensive psychiatric intervention after all of this but like I said, anyone who would complain about going thru all of this just doesn't want these babies bad enough.

A little comic relief...Brett and my mom are on opposite sides of me on cots taking turns snoring. They are the strongest people I know. My mom cleans my bed pan every 20 minutes, scrubs me down everyday in bed and feeds me all of my meals since I can't even lift my bed for meals. Brett is more of a dad and a husband than I ever could have dreamed up for him. He gives me pep talks when I just can't stop crying and loves me beyond unconditionally (which you learn when there's no one else around to clean your bed pan). I know everyone wants to visit and help but right now this is a very personal time and relaxation/stress plays a huge role in it...we keep the lights low in the room all day and I listen to soft music and when Baby
A starts acting up I put on the meditation tunes and he usually chills out.
A is down real low in breech position with his butt in my partially opened cervix (cervical dilation usually does not happen until a little before normal delivery near 35-37 weeks for twins-mine started at 23 weeks) Sorry to be graphic but when he kicks I feel like his foot is going to push right thru the bottom side-a little Yanni on Pandora seems to calm him down enough to make me more comfortable. Baby B is above my belly button laying transverse. His kicks are getting stronger each day with a good blow to the ribs every so often. They are still so small that they can flip into more desirable positions at any point.

On a good note the babies are growing perfectly, even a little ahead of the curve at 1.4 and1.5lbs with perfect heart rates. They are positioned so that it looks like B is kissing A's butt-something I hope to be able to remind them of when they are teenagers. We have a great shot of a yawn, one of them giving us a little gangsta sign with his hand and a great new shot of their faces where they look like babies and not little skeletors. You can already tell that they look nothing alike.

The dog and cat are incredibly confused but we're lucky that Christine and Bretts parents have been taking good care of our furry kids. Our families bought me an iPad which has kept me sane. Emails are welcome but please understand that I have good minutes and some really bad ones...I will rarely answer them but love hearing all of your messages passed on.

We've had some amazing high highs-learning that there are 2 little people growing inside of my tiny belly and experiencing all of the joys that come along with the first 20 weeks of pregnancy. The lows are clear but we have proven thus far that even when others have been close to giving up our strength has produced absolute miracles that are beyond medical explanation-coming out of preterm labor. We're going to continue to defy the odds and shock a lot of people.

Hoping you are all doing fantastic on the outside and my preggie friends are feeling great. Miss you and love you all so much but hope to not see you outside of this hospital until after Thanksgiving. We are very lucky to have you all to fight alongside of us. Please keep the prayers and love coming.

Love,

Melissa

Sent from my iPad

Baby Sites to Blogging

Miracle Babies
Date: 09/30/2010 08:47:56 AM
Hello Family and Friends,

I have quite a bit to catch up on but the majority of our time is spent at the hospital with the boys. Thank you all so much for all of your support and love over the last month. It has been the most difficult time in our lives but we're fighters... all four of us.

I am going to use this site to continue to journal the development of our amazing miracles but also as a way to give quick updates. As you can imagine, it can be challenging to keep up with everyone's concerns so here is a good way to keep all on the same page.

Quickie:

Cameron Mark Collins and Brody James Collins were born at 3:02 and 3:03 am on Saturday September 25, 2010 (initial due date 1/11/11). We were sent for an emergency C-section as my condition worsened. The babies were immediately taken to the NICU where they will remain until they reach full gestation. Seeing their behaviors and movements outside of the womb is so interesting because I know exactly what I was feeling now...Brody is a Collins and Cameron is a Tannenbaum. Brody is a kicking maniac...he's going to be our problem child. Cameron is chill and relaxed. They were both taken off of their ventillators Monday and have been doing pretty well with the transition. As one of our doctors says, "Never trust a preemie". They are very unpredictable and it will be a looooooooong road of ups and downs.

I will be sending more to come but just wanted to get the ball rolling here.

Off to see my amazing babies.

Love you all.