Monday, July 30, 2012

Kilo Kiddos!

I can't believe how big these little dragons have gotten. When we arrived today and did Kangaroo Care, it seemed like they had grown overnight. They are both filling out more and now weigh over 1000 grams or a kilo, This is big news in the NICU world.

Below is a photo of Maisie with Daddy and if you recall the first time we Kangaroo'd at just over a week old, her little arms were just bigger than the size of my middle finger. When we see them every day we forget how far they've come. Don't get me wrong, we like the current "watching grass grow" mode more than the first couple weeks of hectic chaos. It is just amazing how quickly time flies (and babies grow) when you look back.

These little dragons are seeming less like micro-preemies and more like very small newborns. They'll be 32 weeks or 5 weeks old tomorrow!

Saturday, July 28, 2012

The two pound club

We are proud to announce that both of our little dragons are finally over two pounds! James (who technically hit this milestone first due to edema but is back with actual weight) is weighing in at 2lb1.5oz, and Maisie is at 2lb3oz. We are on the up & up. A bit of trivia: we are the biggest babies in our section of the NICU finally- but not by much- and we are a lot older.

Yesterday was a tough day for the babies and an even tougher day for Mommy. They both had their first shots and eye exams. On the eye exam, although their eyes are still immature the babies aren't showing signs of ROP (Retinopathy of Prematurity), an eye disorder that occurs due to increased oxygen requirements. It's likely that one or both of the dragons will have some level of ROP before this whole journey is over. Luckily there are treatments and preventative measures to take if need be. The shots were painful for both babies and mommy, but thankfully they were over quickly. Even when babies are premature they have to get their immunizations on schedule, even if there is so little muscle or tissue to take the actual shot. Ouch!

Thursday, July 26, 2012

Happy birthday, little dragons

Today was such a special day as it was Maisie and James's one month birthday. We are so tremendously proud of the little dragons and all of their progress. We are so thankful for their continued healing, growing, and days without incidents.

Jimmy finally got to hold James, and it was definitely worth the wait. They sat together for an hour and a half, and before long it was time for James to go back to his isolette (or his very expensive tropical private island, as I like to think of it).

In other news, the babies have not been doing very well on their weight gain, so the doctors came up with a new strategy today. Maisie now will get high protein formula added to her breastmilk feeds, and James will have more frequent feeds and increase volume starting today. The goal is for the babies to sit tight, gain weight, and stay healthy for the duration of their NICU stay.

Wednesday, July 25, 2012

GGP, meet James

Yesterday Great Grandpa (GGP) came down to PSL along with an uncle, aunt, and a great aunt to meet James. Many of our family members have not met James, who has been more fragile. Now that he has been feeling better, we thought it would be a great time to get some face time with GGP.

When you're Great like GGP, we try to roll out the red carpet. We get the little dragons to have their eyes open and be social, we get a great nurse on board for the day (nurse L), and we even arrange a quick introduction with Surgeon Dr K who did 3/4 operations on the kids. (Actually, I'd like to take credit for this stuff but it was all a huge coincidence.)

We are lucky to have a GGP in the fam and as these dragons are the 1st grand kids for GGP that makes the whole thing extra special.


**On a side note, James is back on the vent. He gave the CPAP a great shot but it was determined he needed to focus more on growing rather than expounding energy and calories trying to breathe on his own. He did a great 8+ hours off the vent, a great practice run. Here's to working on bulking up to catch up with sister Maisie!

Monday, July 23, 2012

Off the vent

James had a big day today. After over 48 hours of no ventilator setting changes (a new record), Dr R decided it was a great day to take the plunge to CPAP. He said James may need to go back on the vent in the next 72 hours but it's worth giving him a shot to see how he does.

Well, 6 hours later James has done pretty well breathing on his own. There are some things they are concerned about - like when he forgets to breathe and drops his heart rate (bradycardia, common in preemies). They will give him a good shot at the CPAP, and they do have a few tricks up their sleeves to help. We are hopeful that James is ready and able to keep up.

Sunday, July 22, 2012

On the mend

Gosh, these little dragons have had a solid week of being extra nice to mommy and daddy!

It was a week ago when I had to have conversations with both regarding their recent incidents that led to several phone calls from the "principal's office" aka PSL NICU. I think they're just getting us prepared for the future, for when they're actually in school. We will definitely have our hands full.

Luckily things have been much quieter as of late. Maisie is officially a 2 pounder! She has been increasing her feeding and caloric intake to work on growing. James has started trophic feeds (3 ml every 4 hours) and is weighing in at 1lb 14 oz after losing all of his edema. James' lungs look much better and his collapsed lung has popped open (mostly- now just stay open all lungs!) The chest PT sessions are now only twice a day and they keep weaning on the ventilator settings.

Tonight we heard that James is on extubatable settings for the first time, meaning he could be taken off the ventilator and put on CPAP. If you can imagine I am slightly worried about jumping off this cliff too soon - I just want to make sure he is ready and has shown sustained improvement for several days before we switch over. I never thought I'd say this, but I am super thankful that tomorrow his main Dr K is back so she can oversee things. She did try to get us to pull the plug on a few occasions, but has since admitted that James has surprised them and come a long way. Dr K is very cautious with his ventilation and I am grateful for that. Don't be surprised if James is on the CPAP sooner than we think...

Friday, July 20, 2012

Words cannot describe this moment

James, 24 days old

A big Thank You!

Earlier this week, a fundraiser potluck/luncheon was held to raise money for our family at Jimmy's office. Several hundred dollars were donated, along with offers to help with baby items and other necessities. We were shocked when we heard of the results - truth be told, we just weren't expecting it.

At my job, many people banded together and donated sick hours as I had been zeroed out for several months. The company matched my wage and provided me enough hours for a whole paycheck - which is helping cover our health insurance premiums and costs for the little dragons.

We could not be more humbled by the sheer kindess and support of our co-workers, especially during the last several months. We are overwhelmed by their generosity and are eternally grateful for everything that has been contributed on our behalf.

Both of our employers have been so overwhelmingly flexible, allowing us the freedom to take care of our family given the extenuating circumstances we were faced with. The fact that we are both still employed after all of this amazes both Jimmy and I. We both have worked for companies in the past that would have terminated us in a heartbeat without a second thought. The fact that we work with great people who would do even more than ensure flexibility just astounds us.

We are so thankful, every day, even when we can't be at work. We are thankful that our work is allowing us to spend time with our kids.

Thank you, Xcel Energy & Harvard Square / Leisure Care

Tuesday, July 17, 2012

Stats

I love stats- don't you?

Prior to the little dragons' arrival on 6/26/12:

Number of days since Baby James' water broke at 12 weeks: 104
Likelihood that the pregnancy would be a success: no data to compare. No doctor had ever seen or heard of our situation happening so early or with the circumstances.
Number of months approved by Erin's employer as potential FMLA time: 6 months
Number of days gluten free pancakes were consumed for breakfast by Erin & Mom: approximately 45
Number of weeks on bed rest: 10
Ultrasounds conducted: 17
Number of ultrasounds with no measurable fluid for Baby James: 13
Erin's average daily liquid consumption: nearly 2 gallons (to help replenish amniotic fluid). That's 182 gallons of water, and 689 refills of the bright green Nalgene bottle.

Following the little dragon's arrival on 6/26:

AirLife Neonatal Transports from Swedish to PSL: 2
Number of nurses working at PSL's NICU: nearly 80
Number of surgeries between and 7/6 and 7/13: 4
Number of planned surgeries between 7/6 and 7/13: 0
Amount billed to insurance for the little dragon's first few days: over $110,000+
Number of text messages we've received: 1487
Times we've held Maisie: 9 or 10
Times we've held James: 0

A step in the right direction

James has been dealing with a collapsed right lung. But, as we've learned in NICU world, this isn't a huge deal. They've been trying to get it reinflated but have not had total success. So, today when I heard of the new strategy I have to say I was a bit surprised.

Apparently James' PIE (Pulmonary Intersistial Emphysema) has improved thanks to the jet ventilator. His chest tube was removed today, as the pneumo incident from Friday was officially over. He's been at 25-30% oxygen lately, and it was determined that today was the day to move to the conventional ventilator.

This is a graduation of sorts for James who failed all other forms of ventilation that first night. We did not expect this so soon, but we are thrilled! Hopefully he is ready for this change and doesn't have to move back to the jet - but with PIE, PPHN, and a PDA under wraps we are happy with all of James' progress.

He has been on the conventional vent all day and has been doing great. They've actually been able to wean his settings a bit, and he seems to be taking the change well. Now, if only that right lung can pop back open! If all goes well we may be able to hold James in the next week.
The conventional vent takes over for the jet

Monday, July 16, 2012

When the kiddos are behaving... / Weighing in on doctors

The last 36-48 hours have been stable in NICU land. Actually, the whole weekend was pretty uneventful. We are very thankful for that.

Maisie is increasing her feedings and is working her way up to 20ml every 3 hours, and is now off of IV nutrition. James is still recovering from last week, but there are definitely signs that he is feeling better. He has a long way to go, but he is definitely rearing to go. Nurse P got a dose of his feistiness last night, but it took a lot out of him. Look out, world! Surgeon/Dr K said she was happy with James' healing after the two surgeries and they are anticipating taking the chest tube out soon. Both babies are weighing in at just under 2lbs.

***
There's no easy way to put this: I've seen more than my fair share of doctors in my less than thirty years - most of them in the last five. I finally got my medical stuff under control thanks to many of them and suddenly we were pregnant with twins. Our pregancy was high-risk to begin with, and thankfully we had been seeing one of the top Maternal-Fetal Medicine doctors, or Perinatologists when the membranes ruptured for James at only 12 weeks gestation.

It's difficult to know whether you have made the right decision with regards to your healthcare provider. With our Perinatologist, Dr Heyborne, and his entire staff at the Swedish Perinatal Center, we couldn't have been more satisfied and sure that we were in the best hands. They were 100% on board with saving our twins from day one, and never gave us anything but optimism and hope. We often heard "this never happens", and "I've never seen this before", and if I'd thought of it earlier I would have started a jar to collect quarters and dollars for these babies' college funds. Because, yes, this does happen, and it happened to us.

When we were suddenly in NICU land, we were dealing with unknowns all over again. It was so difficult to convince these doctors and nurses, that "yes, this does happen, and it happened to us" - and more difficult to convince them that James had survived against all odds and would continue to prove his willingness to survive. Some of our nurses have said that James is the longest and earliest ruptured membranes or PPROM case they've ever seen. I'm sure the doctors would echo this.

I happened to read an article over the weekend from an issue of last year's 5280 Magazine, Top Doctors of 2011. Incidentally several of our doctors made the cut. This made me feel so much better, especially on the NICU side of things. Dr Heyborne is there, and so is Dr L who was on-call the night of 6/26 and delivered the twins. Dr Hawkeye, who took in James the first night at PSL and happens to be the director of the PSL NICU, is listed. Dr R, the head of Rocky Mountain Hospital for Children's Minimally Invasive Surgery Center is there too (he performed the iliostomy and his counterpart Dr K did our other 3 surgeries, although none were minimally invasive due to scope and babies' size).

I've posted a link to a great article about Dr R and several other doctors and the amazing things they accomplish - thus their inclusion into the Top Docs list of 5280 Magazine. It's a peer nominated award, and definitely something to look for if you are in the Denver area and looking for a new doctor.

http://www.pslmc.com/dotAsset/320476.pdf

Saturday, July 14, 2012

What's that, a day without an incident?

I joke that what these kids need is a sign found in most employee break rooms that says "Days without an Incident" - some corny HR humor for you. Maybe this is a sign I need to go back to work. These babies seem to be competing for attention or one-upping each other lately and I think it would be much better to have a contest of who can gain the most normal weight or go the longest without causing trouble.

We actually had a peaceful and stable day today with both babies; I got some Kangaroo time with Maisie (albeit not as peaceful or private as it was at Swedish), and James was holding steady.

Baby Maisie
Jimmy and I took off for a little mountain retreat to my family's house in Conifer to celebrate my parent's 33rd wedding anniversary. We didn't get one phone call, but we had anxiety over other phone calls that came to the house. This was the first time we've done anything outside of our home in over 3 months, as we had been on strict bed rest with the babies. Clearly, they have been running the show for a while. I myself enjoyed seeing family outside of my couch environs and staying in an upright position for longer than 30 seconds. It was a very relaxing and much needed evening.

Thanks babies, for giving mommy and daddy a break for the day. We truly do appreciate it.
Baby James

Another day, another PDA ligation

We had heard that James had a large PDA on his echocardiogram, but they weren't moving on anything until he was more stable. I guess when you are a baby in critical condition, stability fluctuates with the hour.

Thursday he was dealing with a collapsed lung, which we didn't find out about until the afternoon. Dr. Hawkeye was so nonchalant, he could have easily been chatting about the weather instead of something medically severe. He was certainly not worried; in fact, he was almost happy given the state of James' lungs. They were making progress on reinflating it, and apparently this kind of thing just happens in preemie land, especially in kids with lungs like James's. If you can imagine, we were having trouble digesting this, but we left it to the doctors who get paid the big bucks and hoped for the best.

By Friday morning they had successfully reinflated the left lung and were ready to operate. Dr K called and said we were a go, since James wasn't a candidate for the medicine. We'd been down this road before, and we felt like pros. Jimmy and I were on the way down to PSL for our fourth surgery in a week. Our old friend Dr K (I should say surgeon K - they are two different ladies) was on board to operate on our other twin. Talk about déjà vu.

***
The ligation went well, and we breathed another sigh of relief. It wasn't until post-op when nurse P started worrying about some vital sign trickiness going on with James that things went a bit downhill. As nurse P says, "I don't trust these kids."

She went to grab the Respiratory Therapy team and when she returned, a small bit of chaos ensued. Many things happened at once. On poor James, a bubble appeared on his left chest wall under the new incision. Dr E, who we'd seen but never met before rushed in with the x-ray results and and said "he's got a Pneumo!", followed by several nurse practitioners and RT's. They quickly evaluated the situation and needled the air pocket that had accumulated between his lung and chest wall due to the surgery. This released some of the air, but the pneumothorax remained slightly. Another X-ray was taken and they later determined to put in a chest tube for the next few days that would better resolve the issue.

Dr E wasn't worried, and this helped to calm our fears. We are slowly learning what to be worried about. Some stuff looks and sounds more scary and complicated than it is. After this week, it's crazy to think how we can head into open surgery for a vessel connecting the heart and lungs without a second thought or major anxiety.

James, he sure is a trooper. We are trying to learn from him.

Wednesday, July 11, 2012

Donate Blood & Babies update

Things are stable in baby land. I'd better watch what I say - the last time I said that we took a crazy ride.

Baby James is peeing like a racehorse, and yesterday he was down to 953 grams. He's the incredible shrinking baby. I'm sure he's going to do actual growing at some point, but we couldn't be happier about the peeing and weight loss. He's off all blood pressure meds and impressing the doctors with his blood gases.

Baby Maisie is recovering well from her surgery and starting feeds again. She'll be a happy camper.

***
One thing we are asking for help with is blood donations. PSL has its own blood bank and our kids have both received blood during their stay (James especially). There is a huge demand for donations and we would be very grateful if you would consider donating. If you know your blood type, you can donate for Maisie and James. If we cannot or do not use it, it will go to another patient in need in the NICU.

James and Maisie are O- and B+.

Visit http://www.pslmc.com/blood_donor/ for more info or to make an appointment.

Tuesday, July 10, 2012

Boys can't have all the attention

Reading the past few days, you'd probably think we only had one kid in the NICU. No, we haven't forgotten about our sweet baby Maisie. We've been busy visiting her too, but just not as much. She's been getting other visitors, since it isn't so restricted: she's seen both sets of grandparents several times and even met her all of her aunts and uncles (there's a lot of them!)

Miss Maisie decided she needed to get eyes on her brother and was tired of getting second-hand info. So, today we had another huge adventure. Here goes:

***
At 10:30am, I walked into visit Maisie before my doctor's appointment and happened to run into the cardiologist who was finishing up an echocardiogram. He told me that her PDA had opened up, and it was large. He left to go get Dr Hawkeye, my best buddy (he was working down at Swedish that morning) and they both met me back in the room.

Dr Hawkeye said that Maisie's PDA would need to be closed surgically by Dr R at PSL. If it were his kid, that's what he would do. The medicine would likely not work again, and would put her at risk for a spontaneous bowel perforation (not another one!) or NEC, and on top of that she would still need surgery to close the PDA. I called Jimmy and we decided to transfer her and do the surgery.

I went to my appointment and put my Mom and sister in charge of the chaos that would ensue. I was about to experience the same thing Jimmy did on the night James left, albeit a lot less hectic.

***
AirLife Neonatal Transport Team arrived and I ran down to meet them. It was very emotional. I had big reservations about leaving Swedish because this had become our happy place that we could escape from all of the chaos that was PSL. Now, both of our kids would be there. On the other hand, I was truly thankful that they would be together again.

I stood by as they got her ready to go and as everyone collected our belongings. They asked if I would like to ride along, and I agreed. Maisie and I left Swedish together, hopefully to return with James someday soon.

***
When we arrived to PSL, they worked on a lot of vitals and got her admitted. We weren't certain whether they would do the surgery Tuesday or Wednesday, but Maisie was giving an indication that her PDA was causing her trouble and clinically they wanted to resolve this as quickly as possible. As with most surgeries at PSL, they turn the NICU into the operating room and do the surgery at bedside. That requires a lot more work than I care to think about - but they are pros at it. Maybe having two kids doing two surgeries in two days makes me a pro mom...?

They decided to do the surgery at 4:30pm. Dr R and his counterpart Dr K (the one who did James' first surgery) both met with us and Dr K was assigned to Maisie. We had to do an open ligation because of her weight. The surgery consists of going in through the left side, through the ribs, moving the lung out of the way, and tying off the Patent Ductus Arteriosus between the heart and lungs. In utero, this artery is needed - but after birth it causes the baby to work unnecessarily hard to pump oxygenated blood throughout the body. By nearly 6 it was over and a success, and we were celebrating in the waiting room with the family.

***
Both kids seem to be doing well post surgery, though it's tough to see them go through this stuff. I never had surgery until my cesarean to get them out. They sure are resilient little things.

Monday, July 9, 2012

A window of opportunity

James had been stable for most of the day Sunday, peeing and keeping his blood pressure up. We had been visiting late into Sunday evening, chatting with Nurse L. We noticed that his abdomen was getting darker and we spoke about that - the plan of action that we had been delaying because of all of the other issues (heart, lung, blood pressure, possible organ failure, critical condition NICU baby, etc). Going home that night, Jimmy and I decided that we need to do surgery before it was too late, before it was NEC (or necrotizing enterocolitis, a very severe and deadly infection of newborn GI tracts). Nurse L told us what they look for that would be an indication to do emergency surgery, and we knew that by that time, it would be way too late for baby James.

***
07/09/2012, 6:24am: Nurse L called to tell us that she saw a marked change on James' abdomen, a blackness that hadn't been there before. He had been stable for almost 24 hours with regards to urine output and blood pressure, but she still wanted to let us know that Dr Hawkeye was aware and that the surgeons were coming in first thing to evaluate. "Clear your schedule," she said. We were on our way in.

***
We opted to do the iliostomy for Baby James after meeting with surgeon Dr. R and Dr K and Dr Hawkeye. We knew it was the right thing to do when Dr Hawkeye said it was our "window of opportunity", which is exactly how we had phrased it in the car earlier. Just yesterday, he had not recommended operating. The team went into place and surgery was scheduled for 10am.

***
James had his abdomen opened up and his GI tract examined. He had 2 cms removed where the spontaneous perforation had occurred, and two stomas brought to the surface that will be there for several months until he is bigger and the intestines will be reattached. He is doing much better, and following the surgery he began peeing even more and his blood pressures improved dramatically.

Dr K even told us that she is starting to believe in our kid. We're moving up in the world, one person at a time.

Sunday, July 8, 2012

And down and down

Jimmy and I will both tell you that Saturday night, 07/07/12, was one of the most difficult nights of our lives. We will spare you some of the details because it's too painful to go over again.

When your child is helpless, you need doctors to be on board with your strategy and you need them to be objective. It took a long time to get there, but we are finally there. One day, these doctors will believe in our son. He is capable of accomplishing extraordinary things. Do not underestimate him - or us.

***
James was hovering around his birth weight of 770 grams earlier this week (we are going to use grams because it's a heck of a lot easier than trying to convert it to pounds and ounces - sorry about that). When he had surgery on Friday, they began replacing fluids lost out of the drain and tried to use fluids to bolster his blood pressure, which was in the tank. Unfortunately, nothing was working on James' blood pressure. James started retaining all of this water and over a course of 24 hours weighed in at over 1200 grams, and was on course to double his weight. The edema swelled every inch of his body, including eyelids and ears. The nurse told us he would continue to get bigger, and that nothing would correct this.

Nothing was working to bring up his blood pressure and the doctors weren't being very creative about it. They informed us that he was working on keeping his heart, lungs, and brain functioning and that the rest of his organs were not operating. James had not peed in over 24 hours, and his kidneys and adrenal glands were not responding to treatment by the time  Dr K spoke with us Saturday night.

They asked us over and over to make a decision. We told them to save our son - over and over again.

***
Steroids had been ordered but the dosage wasn't high enough. Dr K ordered a rescue dose of dexamethasone and put it on right away. They did several blood transfusions over the course of the weekend. We stayed in a room close by and visited every couple of hours to monitor the situation and be with our amazing son James. We told him over and over again how strong he was and how proud of him we were. Again, he was not expected to make it through the night.

***
By the morning, Dr K met up with Dr Hawkeye and a new strategy was born. We felt glad to have new eyes on the situation, but Dr Hawkeye was realistically grim. He thought he could get James stable enough so that we could get rest. The new plan included concentrating James' IV medications and fluids, bolstering his electrolytes to combat dehydration, and continuing the rescue steroids. He added a diuretic Lantix to help James pee. We were hoping that this would work.

***
We went home for the day and tried to get some rest. I had cried so much that night that I felt like I had been underwater. We were physically, mentally, and emotionally exhausted. But we never got a phone call. In the afternoon we returned to find that James had started to pee and that his blood pressure was up. We had never been so happy about basic life functions. He had turned the corner, thanks to a little objectivity and creativity from his medical team.

Friday, July 6, 2012

And we all fall down

5:44am: "Hi, this is Dr. __ (insert name here, I can't remember). We believe James has a spontaneous bowel perforation and needs to have surgery. The surgeon and surgical team are on their way in now..."

6:49am: "Erin, this is Dr. K, the surgeon. Here is the plan for operating on James... do we have your consent? Let me get a second verification from the nurse, since this is a verbal."

7:19am: "Hi Erin, this is Dr. K. The incision went well, and James is doing fine. Here is the plan and what to expect.... If or when he is more stable we will likely need to have a more extensive surgery."

***
What a difference a day makes in the wonderful world of the NICU. They say you take one step forward and two steps back, but it feels like ten. James is back on blood pressure medication and antibiotics, and his blood pressure is in the gutter. He has an incision in his abdomen and a drain that's seeping out peritoneal and biliary fluid, but they don't believe it's any worse than a spontaneous bowel perforation. He has a higher risk of this because he is a PPROM baby.

We hope it doesn't get any worse.

Thursday, July 5, 2012

Progress and Test Reports

James is weighing in at 1lb10oz, almost birth weight. He is finally off all blood pressure medications which is great news for his pulmonary hypertension (PPHN). We'll keep our fingers crossed it stays that way. He is also done with the course of antibiotics that was started after birth, and no infection was present in any of our labs from that day. James started trophic feeds with breast milk today; apparently he has been so stable the doctor decided to go ahead. He had a chest x-ray today to evaluate his lungs, which indicate that his PPHN is better but he is dealing now with something called PIE (Pulmonary Intersistial Emphysema). The treatment is to continue on the jet vent, nitric oxide, and monitor as he grows and heals his lungs. James had a head ultrasound on Tuesday and it was determined that he had a grade 2 and grade 3 bilateral IVH (or brain bleed). They do not think he's still bleeding at this point; it's pretty common in preemies, it may resolve and they will watch it.

Earlier this week Maisie had an echocardiogram and they saw a moderate PDA, which should be closing. They decided to give her a round of indocin to see if that helps to close it. She also had to stop her trophic breastmilk feeds and she is not very happy about it. The nurses say they can hear her screaming and crying inside her "box" all the way at the nurse's station. The nurses believe that the medicine indeed helped close the PDA and a follow-up echo determined that the PDA was now small. Maisie's head ultrasound looked good. She is finally above her birth weight, weighing in at 1lb12oz.

Lots of tests, but lots of progress! Let's keep it this way, kids!

Hands on & Kangaroo Care

Maisie is now on the CPAP machine, meaning that she is breathing on her own but getting some extra support in the way of extra airflow into her nose and lungs. We can now hear her cry - which is just heartbreaking! The CPAP itself is pretty obnoxious but it means we are more able to hold her now, at least once per day. Seeing as how it will be a while until we can hold James we are soaking this up.
Jimmy with his bundled baby dragon Maisie - she looks so big!
Jimmy weighing Maisie without the CPAP on
When we were told about an opportunity to do what is called Kangaroo Care, we were thrilled. We just didn't think it would be possible and to be honest, we had no expectations at this age. The nurse was all for it and I became the first guinea pig (or Kangaroo?). The concept is that the baby can feel your heartbeat and is warmed by your body temperature through skin to skin contact. She can feel you and is comforted by familiar sounds and scents that she has missed since birth. During this time, we talked to Maisie and told her all about the happenings of the day. She sneezed on me several times and it was the strangest feeling. Her tiny fingernails scratched at my chest and she tried to sprawl out as much as possible. I couldn't keep her as warm as she needed, though, and when it came time to take a temperature in the armpit poor Maisie cried up a storm (a video/audio clip is below). Jimmy was able to "Kangaroo" the next time and kept her much warmer than I did.

Erin starting Kangaroo Care - before the blankets covered her up