Bay 2!

Penelope had a quiet day. She was 3lbs 5.4oz, she was given more diuretic, and we got to do 90 minutes of kangaroo. The nurses urged me to leave the hospital for lunch because it was nice outside. So I went to Sonic and ate with the windows down. When I came back from lunch I checked out a laptop and was going to write my blog since there wasn't much going on. After spending 2 hours trying to figure out what to write I gave up and played "Fruit Ninja" on my tablet.  I am hopelessly addicted to that game.

A few minutes before 6, as I was changing Penelope's diaper, the charge nurse came in and told us we needed to hurry up. I looked at the shift nurse and she was just as confused as me. The charge nurse then informed us that we were being moved to Bay 2 ASAP. They needed to turn over the room in under an hour. The nurse got Penelope's bed ready for 'transport', meaning she attached the IV strip to the bed, one RT (respiratory therapist) came in to administer oxygen with a bag, and another RT took off with her vent. I quick grabbed the few personal items we had in the room and I followed the baby train while pushing Penelope's supply cart. When I say baby train, I do mean train. The baby who was 'first out' was being moved at the same time. There was a string of 10 people to move two babies down the hall and around a corner.

This morning there were two open beds (not sure how that happened), and we were still 'second out'. By 9am one bed had been filled. This afternoon I had heard mention of a baby coming by transport and the other empty bed was being readied. Suddenly there were also two deliveries expected within the hour which is why there was no warning or time.

I decided to stop back over after supper for my own peace of mind. I know that her chart went with her, but the move was incredibly chaotic. It happened very close to shift change on the last day of the month. So our shift nurse and doctor from Bay 1 had to report to their equivalent in Bay 2. Then 30 minutes later there was a shift change, so it happened again. At 7am there will be another shift change, and then at 8am there will be a new rotation of doctors because it's a new month. I just needed to make sure that everything was under control.

The night nurse apologized for the chaos of the move, and filled me on what had gone on since the move. Penelope had been sleeping and didn't even seem to notice that the baby on the other side of the curtain had been crying (it's so weird to hear babies crying!).  At 9pm they were going to discontinue her lipids and give her an antiviral shot (all the NICU babies get one monthly as a preventative).  They had extra staff on hand to help with the shots and the inevitable hours of crying that would ensue. So I kissed Penelope and left before the wave of shots started.

We spent 41 days in Bay 1, Bed 5. Tomorrow she is 6 weeks old and we start a new count! I hope the next leg of the journey is much shorter.

40 Days!

It's hard to believe Penelope is 40 days old already! She had a great day. Her weight jumped 100+ grams again, putting her at 3lbs 8oz. She clearly had a lot of edema today. Her eyes were so puffy she was having a hard time opening them. They gave her a diuretic around 10 am, and by noon she had a very wet diaper. She managed to pee off over 100 grams of water weight today, so tomorrow we should be able to see her actual weight. I'm guessing she's somewhere around 3lb 3oz (approx 28 grams= one ounce). Her feeds were taken up to 15Q3, and they are figuring full feeds are somewhere around 20Q3, so we are getting there!

Also, we are no longer 'first out'. Another baby was extubated sometime overnight, so we got bumped to 'second out'.  When I left there was also still the one empty room as well. So we need 3 births to happen for us to move. It will happen sooner or later.

First Out

Penelope had a quiet day. Her feeds were increased to 12Q3 fortified, and she is now 3lbs 4.5oz. She has quite a bit of edema, so not all that weight is real. Her ROP exam only showed prematurity, so that is fantastic news!

This afternoon I went to my weekly NICU parents group. One of the mom's asked me how close we are to moving out of Bay 1. I told her that nobody has said anything yet, so I don't know. When I got back to Penelope's room the charge nurse told me that we were 'first out', meaning we are next to move! There is currently one bed open in Bay 1, but there were 3 potential births pending, so I needed to pack up any personal items in the room. An hour later I noticed the OR being readied and thus hurried off for a tour of Bays 2&3. The only difference I noticed was that the rooms were considerably smaller than Bay 1. When I got back to Penelope's room I was told that the potentials weren't going to deliver any time soon. Two had been sent home, and the third was put on bed rest in the mother/baby ward. So we won't move until the open room as been filled and there is a need for Penelope's room. That could be yet tonight, or that could be in a few days. They said they will call me if they move her while I'm gone.

3 Pounds!

She officially hit 3 pounds today! She looks gigantic to me! Today her feeds were increased to 10Q3 of fortified milk. There were no respirator changes.  Her day was quiet until about 5:30 when she tried to pull out her breathing tube! I always check her before I leave the room, and I usually tell her where I'm going (force of habit with Lucille!) This afternoon I stepped out of the room for 5 minutes, and when I left she was sleeping. When I came back in she had managed to get the tape off her face and was pulling on her breathing tube! I grabbed some nurses and they came in to fix it. If it weren't for her palate plate she probably would have pulled it right out! After all the excitement of getting cleaned and re-taped, she was awake and alert. Usually I only get to see her awake for about 2 minutes in the morning. This time it was probably 10 minutes. She is able to open her eyes all the way now. She can't really see yet because her eyes are still underdeveloped, but she can tell where the light is, and she looks in the direction of noises. She and I had an interesting conversation. I told her about her awesome room at home, and she gurgled/snored in response. :-)

Also, today she burped on her own. Usually they pull the gas out of her stomach via her feeding tube before each feeding. This afternoon while I was reading I heard what sounded like a tiny drain that was backed up. Then I realized it was her burp coming up through the feeding tube. Oh the stories I'm going to have to embarrass her when she's older!

Back to reality

Well, I'm back in Iowa City, and it certianly feels strange. It's like having a long weekend and then going back to work. You know it's what you have to do but you'd rather have a couple more days to rest. Being back at RMH will take some adjusting becuase I'm in a different room. The layout is the same but I'm on the second floor now. It is actually a nicer room because the furniture is newer, I'm close to the lounge, and the wall heater actually cycles on and off! I didn't know it was supposed to do that!  I will be able to leave the heater on at night without overheating! The luxury!

Penelope is doing fantastic. Her feeds are now at 8Q3 fortified breastmilk and she's loving it! She loves it so much that she is now 2lbs 15.1oz! She has doubled her birthweight! She does have a bit of edema still, but I think we are over the hump on the feeding issue!  Plus I got to hold her for TWO HOURS today! I should be able to hold her again on Wednesday. I can't wait!

Weekend Away

Penelope had an very quiet day yesterday, they continued to wean the vent, and increased her feedings to 4Q4. Today they are again weaning the vent, and increased feedings to 6Q4 of fortified milk. So she gets more calories per ounce. She is currently 2lbs 9oz, and about 14 inches long.

I am sorry if I scared a few people with the lack of post last night! Lucy has been having a rough couple days. I had decided that this was probably the last logical weekend for me to try to go home and get the house baby ready. I was planning on coming home this evening, but when I heard my Lala was in rough shape I decided to come home last night so she could have two full days with me. I had intended on posting last night, but being gone for more than 48 hours meant I had to completely check out of my room at RMH. It was almost 6 when I decided that I was going to come home. I scrambled, but managed to pack all my belongings and clean my room in less than an hour.  There is no housekeeping at RMH, it is in our cooperative living agreement that each family cleans/sanitizes the room before checkout.  Luckily  I had just cleaned my entire room on Wednesday night, so my biggest task was re-sanitizing the bathroom.  I am on the waiting list to move back in on Sunday but I will go back to IC on Sunday either way. I have a cousin in town and I'm sure he'll let me crash in his guest room if need be. *Chuck, can I can crash at your place if needed? I promise to play cards with you!*

Being home has been a bigger emotional challenge than I had expected. Even though I knew the world had gone on without me, it was hard to come home and see it. A lot of things have changed since I left. At first I spent a lot of time wandering around the house 'correcting' what felt 'wrong'. I washed coutertops that were clean, and re-folded towels so they looked 'right'. I realized pretty quickly that I was avoiding letting myself relax. I have spent 6 weeks in a constant state of motion, both physically and mentally. Relaxing meant taking it all in. I had not let myself think about the gravity of our situation.  On a few occasions, when my body forced me, I would have to admit that I was indeed sick.  Every so often a wave of emotions would wash over me but I was quick to put it out of my mind. I HAD to stay strong. There had been no time for dealing with my emotions, but now I had time. I curled up in bed with Beans' head on my left shoulder, Lucy on my right, and Jeremy's hand in mine. I laid there with tears in my eyes as I recounted the events of last 6 weeks. I don't know how long I stared at the ceiling before I drifted off to sleep. I don't think I had any dreams last night, my mind was finally able to sleep.

I have been busy all day getting baby clothes organized, cleaning the carseat, and catching up on laundry Lucy has been ever so eager to help me with whatever I am doing. If only I could bottle that enthusiasm and use them when Penny comes home! My mom stuck around until mid-afternoon to help me, and I am feeling pretty good about everything. I have talked to Penelope's nurse a couple times today and she is doing just fine. Soon enough we will all be home and this will be a distant memory.

Day 9 of 10

Not a lot of changes in Penny's care today. They increased her feeds to 3Q6 from 3Q8 and tomorrow is her last day of antibiotics. Today they started talking about a time line for extubation (removing her breathing tube). Right now the plan is to wean her from the servo over the course of a week or so. They said she would probably tolerate weaning over 2-3 days, but since they are just restarting feeds, they don't want to wear her out by doing both at the same time. They are hoping to have her extubated AND have her PICC line out in about 10-14 days. I don't want to get my hopes up just yet as a lot of things have to happen first.

The marketing photo shoot went well this morning. Her nurse, Mary, came in early to give her a sponge bath with cotton balls and brush her hair with a soft bristle toothbrush. It's just the right size and much softer than baby hairbrushes. The whole marketing interview and photo shoot took about an hour. I am in a few of the photos and so is Mary. They said I should have digital copies on Monday. I got to see a few of the shots they took, and they look awesome. I can't wait to share them!

Oh, and her weight today was 2lbs 8.9oz! It jump of almost 4 ounces is unfortunately not 'real' weight. She's got some edema from the antibiotics in conjunction with low hemoglobin counts. So we expect her to lose a little weight over the next few days.

Day 8 of 10

Penelope had a big day! She was 2lbs 5.95oz, she was able to have trophic feeds of 3Q8, and she got converted to a servo conventional ventilator. She is doing really well with the vent change and I can finally understand what is on the vent monitor! I will miss the white noise of the jet vent, but I am so happy to see respiratory progress. Penelope also had her baseline ROP eye exam today. ROP is Retinopathy Of Prematurity, which causes abnormal blood vessels to grow in the retina. This growth can cause the retina to detach from the back of the eye. Mild cases of ROP self correct but others require surgical intervention to prevent vision loss or blindness.  All premature babies that are on oxygen supplementation receive ROP exams. To examine the retina they have to dilate her eyes. As you can imagine she will not hold her eyelids open so they do it for her. The seasoned NICU moms in the support group recommended that I not watch the exam, so I didn't. Penelope showed the anticipated immaturity with no abnormal growth. She will have another exam next week. It is very normal for some amount of scar tissue to appear and then heal. They will continue to exams until they know the growth has hit its peak and has started getting better. They do not expect to see any long term issues with Penelope because she requires low levels of supplemental oxygen. So it's just another step in the process for us.

Day 7 of 10

Things are quiet here today. When I arrived this morning they had already started rounding on us. I didn't hear how the xray went, but they moved forward with the changes they had talked about yesterday, so it must have been okay. So no food today, hopefully tomorrow. There was debate on changing her to a servo conventional ventilator, but the fellow had reservations. So they are weaning her jet pressures today and maybe we will get a servo tomorrow. My patience wears thin on all these hold and wait situations, so I hope there is some sort of progress this week. I am running out of things to write about!

Day 6 of 10

It was another quiet day for Penelope. There were some IV fluid changes, but that was it. Tomorrow they will do a repeat abdomen xray to make sure that everything is looking good. They might start trophy feeds again but I'm not sure. Jeremy got to do kangaroo care today, which made me a little jealous, but I'm glad he gets those opportunities when he's here. It also gives me alone time with Lucy. I can tell that this weekend was our best so far. We are all getting used to this new arrangement. Jeremy has done a good job of talking with Lucy about what is going on.  I heard her explaining to her toys that Mommy stays at the "Donald house" to take care of baby Penny. So somewhere in her little head she's working it out. I just hope there isn't resistance when mommy comes back and the rules are reinstated!

Day 5 of 10

Penelope is having another quiet day. No real changes made to her care today. Jeremy and Lucille are here for the weekend and we have spent our time doing normal family things. We spent some time with Penelope this morning and then came back to RMH so Lucille could play on the playground. After lunch we all took a nap and then ran to get some groceries. After supper we went back to the hospital, and Penelope was awake and alert. Jeremy got to do the 8pm diaper change, and take her vitals. It sounds like he will get to do kangaroo care with her in the morning. We rented a movie tonight, and we are going to snuggle up on my bed and watch it on our tiny portable DVD player. It's been a good day for all of us, something we certainly need more of.

NICU Information Part 2

A lot of people ask me how big she needs to be to go home.  The common myth is that she has to be 5lbs. Lucille was only 4lbs 2oz when she came home, and I too thought that they surely would not send such a tiny thing home with an inexperienced mother!  So, my answer to the 'how big' question is "big enough to survive" because that is the reality. When she comes home she could be anywhere between 2lbs and 10lbs. It all depends on her. In every room in the NICU there is a sign with the 5 universal criteria for discharge.

It reads:
-No A/B spells for 7 days
-I am gaining weight nearly every day
-I am able to stay warm in a crib
-I wake up on my own to eat
-My medicines are ones I can take at home

A/B spells are A=apnea (not breathing for 15 seconds) and B=bradycardia (heartrate of less than 100 beats per-minute). A/B spells are very common in premature babies, and they don't always happen together. Penelope typically only has apnea spells, though the other day I made her so upset she held her breath causing her first bradycardia spell ever. She is able to self correct when it happens, but she surely sets off lots of alarms in the process.

We can check two things off our list. She gains weight nearly every day, and outside of the current round of antibiotics, the only medication she takes are vitamins. She will be able to regulate body temperature better once she gets bigger. As she matures she will also outgrow her A/B spells. So, the only one for us to work out is recognising hunger. I'm sure once we are feeding at full force, she will let us know.

As for Miss Penelope, she is having another quiet day. The only change made was to increase the calories in her IV. She weighs 991 grams, or 2lbs, 2.95oz. and is 1 month old! Which also means that I am no longer weight restricted from my surgery! So I will finally be able to pick up Lucille! I cheated when I was home yesterday and carried her around. I figured it was close enough!

Its getting late

It's late so I will keep this short. The morning was uneventful. Penelope slept while I finished my book. I tried to fill my prescriptions here and found out I would have to go to Dubuque to do that. I figured Penlope was just going to sleep so I drove home. I got my meds, stopped by work to say 'hi' while I waited. I got home as Lucille was waking up from nap. She was very happy to see me. Beans wouldn't stop sniffing me! I stayed for supper and then had to head back. The last time I ate dinner in my house was Valentines Day. That feels like a lifetime ago.

Day 2 of 10

We are now 48 hours after the bad diaper and she has shown no other symptoms of NEC. They did a repeat abdomen xray this morning, and it was clear, so whatever they were uncertain about before is no longer there. This was a relief, but I wasn't sure what the plan was going to be since we started a new rotation of Staff doctors. At all times Penelope has a minimum of 3 doctors. There is the resident (pediatric medical student), a fellow (doctor who has completed pediatric residency and is receiving additional neonatal training), and the Staff doctor (experienced neonatologist, this doctor calls the shots).  We are on our 3rd resident, 2nd fellow, and now our 3rd Staff. The new Staff Doctor is the Medical Director for the NICU.

His plan is to treat this as an intestinal infection. He wants to continue the antibiotics for 10 days. Hopefully on day 8, as long as all is well, she will be started on trophy feeds again. So just like before her PDA was closed, she will probably get something like 2Q8, and they will ease her gut back into working. The good news is that every day that goes by her organs mature a little more. So besides it being a week of rest, it's also a week of maturing. So hopefully when we start feeding again we will be able to go full force because she will be 31 weeks gestation, which is a much different ball game.

All in all the day was uneventful, which I like. I spent the bulk of my time reading "The Girl with the Dragon Tattoo" while Penelope slept. This afternoon the marketing director for the NICU stopped by for me to sign the consent for next weeks photo shoot. I'm excited to have the opportunity to do some professional photos with her while she is still so tiny!

Waiting, again

For as good as things sounded when I left the hospital yesterday evening, the night brought a new problem.  I got phone call at 10:30 pm to let me know that Penelope had a bloody stool. They had started her on precautionary antibiotics and were running some tests. I debated on going over right then, but I knew there was nothing I could do.  Needless to say I didn't get much sleep. This morning they did some follow up testing to see if anything had changed over night, and everything looked the same. As a precaution she will be NPO (nil per os, Latin for nothing by mouth) for next 7-10 days. She will be on antibiotics for that duration as well. She will receive all her nutrition through her PICC line.

It may seem like overkill, but before Penelope's PDA was closed, her body was sending blood to her lungs that was meant for her stomach and bowels. During that time it is possible that she deveolped Necrotizing Entercolitis (NEC). This means that lack of blood flow could have caused parts of her intestines to die. The only treatment is surgical removal of the dead tissue. Ugh.

Lots of doctors and lots of opinions were sent my way today. Babies with NEC are typically very sick. They need medication to stabilize their blood pressure, high amounts of oxygen to support their system, their blood oxygenation fluctuates rapidly, and they are lethargic. They look sick, and they act sick.

Penelope was very alert when she was awake. She fought back when she didn't want us bothering her. Her vitals were stable. She even relied on her ventilator less today, a sign of progress. She did not look sick, she did not act sick. Mostly she acted crabby that she wasn't getting fed.

So, the plan is stop feedings, give her antibiotics, and watch for any changes. Clearly something happened that caused the bloody stool. They couldn't confirm a diagnosis of NEC, but they couldn't rule it out either. The more time that passes the clearer the picture will be. Hopefully that picture is that we overfed her yesterday, agitated her tummy, and all she needs a little time to regroup.

NICU Information

My sister in law has asked for more information about the different 'bays' in the NICU here at UIHC, as well as the criteria for moving. So here's what I know about the Bay's. Bay 1, where we are currently, has 15 beds. It is for the most critically ill babies. Bays 2 and 3 are the same, they are just two different hallways. There are 34 beds between the two. These are babies who need intensive care but are not critically ill. Some babies are discharged directly from this area. There are 21 beds between Bays 4 and 5. This is where the parent rooms in and does the majority of the care with the assistance of the nurses. This is usually the final stop before going home.  This all information I got from my 'Surviving the NICU' binder I was given after delivery.

The first week I asked the nurse for a rough timeline for our stay in Bay 1. She said 4 weeks. After that we were preoccupied with talk of PDA and surgery so it hasn't come up again. Ironically my sister in law asked for this post on the same day that I brought it up again.

The only criteria for a baby to move out of Bay 1 is that they must not be considered critically ill. That's a pretty broad spectrum. Now that Penelope's PDA has been fixed, she is healed and eating, she is no longer critically ill. So why haven't we moved? There are other babies that are more ready to go and there is still room for her here. So until she's at the top of the list we stay put. We will be notified when we are number 2, and then I will be given a tour of Bays 2 and 3. Then we wait until they have a potential admit coming that might cause us to move.

So, since I can't give you exact details on when she is moving, I can give you a few reasons why she's not at the top of the list. Penelope has a PICC line (peripherally inserted central catheter) in her right leg. It's a type of IV that can be left in for prolonged periods of time.  She receives nutrition, lipids (fat), and her daily medication through the PICC. Once she is receiving all of her nutrition through her feeding tube, she will no longer need the PICC line. Her medicine can be added to breastmilk during a feeding.   She is also on a JET ventilator. Ventilators are tricky for me to explain so I will do my best. The JET is much gentler at delivering high air pressures needed to keep the air sacks in the lungs open. Once she is showing that she is keeping them open on lower pressure settings, then she can be put back on a conventional ventilator, and then ultimately extubated (removing the breathing tube). She can be extubated and still receive oxygen supplementation via nasal cannula. It's the hose that goes over the ears and has two little prongs that go up the nose. I don't know what sort of time frame we are on for vent changes, but there are at least talks of going back to a conventional vent 'soon'. So it's progress.

Penelope's day has been great. Her feedings were taken up to 8Q3 (8cc's every 3hrs) from 6Q3. Ideally tomorrow we will go to 10Q3, and then 12Q3 on Wednesday, which would mean she is at 'full feeds' for her size! If she can keep at that minimum for a few days then she will get her PICC line out. Removing the PICC line means our risk of infection goes way down! Then we can focus on getting tha vent changed, or even removed! Her palate plate finally arrived, so we will put that in her mouth when she wakes up from this nap. Oh, and her weight today is 929 grams, which is 2lbs 0.7oz. The big tipping point is when she hits 1000 grams, so we are pretty close!

Daylight Savings?!?

Well, the fact that it was Daylight Savings last night totally slipped past me. I unplugged the alarm clock in my room when I moved in so I can use the desk cradle for my phone at night. When my phone went off at 2am for me to pump, and then immediately said 3, I believed that my sleep deprived brain let me sit there staring at the clock for an hour. When the alarm went off at 6 I hit snooze for an hour, figuring I was already an hour off schedule. I went to make some coffee and all the clocks in the kitchen said 6. I couldn't wrap my head around how it could be two different times. It took awhile to figure out what had happened. It was right up there with the time I thought I invented a new food when I was pregnant with Lucille. It turned out to just be chicken stir fry. I'm still surprised that none of my coworkers corrected me. I guess they figured I was too far gone to even understand the explanation.

Penelope's feeding are now 6cc's every 3 hours (6Q3) and her weight today was 1lb 15.9oz (she lost 8 grams). She had her first non-meconium poop today, which is a huge step in the right direction. So we now know that her body is truly processing the food she's getting. She tried to lift and turn her head today while on her tummy. As amazing as that sounds, it's not a good idea with the breathing tube in. So the nurses make sure to keep her nest boundaries close to her head so that she doesn't have room to try.

With Lucille getting here before lunch yesterday and Jeremy arriving last night I haven't spent much time at the hospital this weekend. I feel very conflicted when they are here over how to divide my time. It's the same conflicting feelings I have during the week about not being at home. I'm thankful that Jeremy is so good at reassuring me that we are all in the right place. Penelope is the smallest member of our team, and she needs me most right now. It's a big change for all of us, but so far it looks like we are all handling it pretty well. Well, maybe not Beans, our 12lb chihuahua mutt. The last time I disappeared and returned with a baby he faked injuries so I would have to carry him. Last time I was only gone for 5 days, so who knows what he'll do this time!

2lbs!

She didn't want to break the 2lb mark yesterday so that I would have something to talk about today! She is tolerating the 6cc's every 4 hours (6Q4) feedings well so today they started to fortify my breastmilk. It's a powdered supplement that adds the minerals she needs to harden her bones as well as adds extra calories. She also gets fed by pump over an hour so that it's more like nursing. Before they just basically dumped it into her feeding tube, but it was such a small amount that it wouldn't fill her belly, so it wasn't a big deal. All in all she is doing fantastic. She should start packing on the grams now! It's a great feeling to only have updates on weight and feeding schedule! It means we are finally a 'feeder, grower' baby!

I did get a chance to hold her this morning. We didn't do skin to skin kangaroo because she was being fed while I was holding her. So I just cradled her in my arm while she ate. She had her eyes open for a good 30 minutes. It was awesome. Then this afternoon my parents dropped Lucille off. So I've had all afternoon with her, which was good for both of us. We spent most of it laying on my bed watching old cartoons on YouTube. She's decided that the Muppet Babies are pretty cool, but Disney's Adventures of The Gummi Bears is also pretty nice.

Today was the first time I got to snuggle both my girls in the same day!

3 Weeks Old!

I can't believe it's been 3 weeks since Penelope was born. It doesn't seem like that much time could have gone by, and yet it feels like it's been years since I've been home. Penelope had a good day, her weight was down an ounce from yesterday. The doctor is assuming she is losing edema from her surgery. So we'll see if she's up tomorrow. Her feedings were increased to 6cc's every 4 hours. She didn't seem to be a big fan of that mostly because she still isn't emptying her bowels very often. So hopefully the increased feedings will get things rolling. Today I was approached by the hospital marketing department, they want to take pictures of Penelope for possible promotional use. So sometime next week she will have a little photo shoot! The only other news is that I got to go off my blood pressure medication today! So hopefully I will start to have a little more energy, but I'm not counting on it.

1lb 15.7oz

We are getting to so close to the 2lb mark! I imagine that by tomorrow she will no longer be in the 1lb club! She had a good day today. They stopped her morphine drip and antibiotics. They also increased the frequency of feedings to every 6 hours.  She spent most of the day laying on her tummy to help get her intestines working a little more. This afternoon when the nurse rolled her onto her back, they put a 'donut' under her head to take the pressure off. Penelope spent the next hour squirming trying to use her little hands to push the donut away. She sure can let you know when she's not happy! Once they took the donut away, they turned her to her side and she started to get cranky again. So we decided to feed her a 20 minutes early, and that made her happy. So shes starting to give hunger cues! Tomorrow she hits the three week mark. I can't believe it!

19 Days

This morning Penelope got her drain tube out of her chest. They backed off on her morphine and increased her feedings to 5cc's every 8 hours. Her oxygen levels are great, and she's doing fantastic. This afternoon she was to be fitted for a palate plate, which a mouth guard that will hold her tubes in place. It will be nice to see less tape on her face! So our next big goal is to hit 1 kilogram (2.2 lbs). Once she hits that weight then we can get rid of the plastic wrap!

I thought I would give an update on the studies we are participating in.  We have completed the low birth weight DNA study. They collected saliva samples from the four of us, and information about my pregnancies. Penelope is in a breastmilk vs preemie formula study for the duration of her stay.  She is also in a hemoglobin study where they take leftover blood from lab work to see when a baby's hemoglobin goes from infant to adult. She is a control subject in a urinary tract study. They collect dirty diapers every few days and study whats in the urine of healthy baby. YAY! We are the healthy baby! She is also part of an oxygen protocol study, which we won't be doing much with until they are looking to wean her off the respirator.  I am no longer in the mental health study. My scores from the first phase indicated that I am emotionally stable, so I didn't qualify for phase two. So, while I'm bummed that I won't get any more coffee cards, I suppose it's good thing!

Chest Tube

I was hoping Penelope's drainage tube would come out today, but no luck. The doctors spent a lot of time after her surgery working with different ventilators and settings to get things where they wanted.  So Penelope's left lung didn't re-inflate until much later than they had hoped. It's not a problem, it just means that she needs the drainage tube for longer. So we'll pray that it comes out tomorrow morning. Since the tube is still in she has to be mildly sedated to keep her from being her usual wiggly self. They were able to back off on some of the other medications today, and they did start feeding her breastmilk again. So she's on the same feeding schedule as before the surgery, 3cc's every 8 hours. It's a little over half a teaspoon. They can't increase her feeds until she's off the morphine since that slows down the digestive system. So, we are still in a holding pattern, but not for much longer.

The surgery has made a noticeable difference. Her oxygen saturation is much more stable, and her blood pressure is much better. There was about an hour this afternoon where she was only requiring about 21% oxygen, which is the same as what we breath. Before the surgery she needed about 32%. Most of the day, outside of that hour, she was hovering around 24%, which is awesome! Hopefully she can keep that up and we won't have to have supplemental oxygen when we come home!

I'm finally on a routine here, which is helpful. I've found that I need to do a few things almost ritualistically. After wandering around in the wrong parking ramp on a few occasions, I now park in the same ramp, on the same level, so that I don't have to think about it. I also have set alarms on my phone for when I need to take my meds. There have been a few close calls with right time and wrong pill. Luckily I caught it and corrected myself. My phone has an option for the alarm to use a robot voice. So now it tells me which medication I'm supposed to take. It's helpful, even though it makes me feel like I'm 90!  Speaking of which, my phone just starting beeping and saying BLOOD PRESSURE! So, I guess it's time for me to wrap this up!

Surgery

Penelope's surgery went well this morning. We were told they would start around 8 and it was a little after 9 when they told us they were done. She has been sedated all day because she has a drain tube for 24 hours to make sure there is no fluid accumulation. That will be removed tomorrow and then they will wake up her up a little more. They just don't want her wiggling a lot until then. All in all in was a good day for her.

My blood pressure follow up was today as well. My bp is back in the normal range on medication. So they lowered my dose to twice a day, 12 hours apart. I was taking it every 8 hours meaning I had to get up in the night to take it. So tonight I will actually get two 4 hour stretches to sleep! They will reevaluate the meds at my post operative check up in a few weeks.

Lala Happy

I can't believe that it's been 3 weeks since all this started. I don't really have much sense of days of the week or really even time of day with my pumping and medication schedule. On my own I live in this haze until, but it's nice that Jeremy and Lucy force me to snap out of it. It's nice to feel like a family again, even if it's only for a few days here in and there.  This morning Jeremy got the opportunity to do Kangaroo care Penelope. I am glad that he got to have that moment with her. It also brought the opportunity for us to get our fist picture taken with all 4 of us. We'll have another 'first' family photo when we get home and Beans can get in on it.

This afternoon my brother, Dan, and his family came down to visit. It was great to see them and for them to see that Penelope and I are okay. The last time Dan saw me was the day I was admitted, and Nekole was the first person here after the delivery, so they certainly saw me at my sickest. Lucy was very happy to see all of them. She adores thats family.

This evening Jeremy and I reversed roles. He is over at the hospital with Penelope and I have been getting some much needed Lucy time. I have a new found appreciation for the little things like "playing toys",  giving Lucy a bath, and snuggling up to watch a movie with her. I can tell that she is enjoying it to. She keeps looking at me and saying "Lala happy!"... that makes mommy happy.

Tomorrow is the big day for Penelope. She is the second procedure of the day, so they are hoping to start sometime around 8 am. The procedure, from sterilizing her room until I can go back in, should take about 1.5 to 2 hours. I realized this afternoon that all of this PDA stuff started on day of life 6, tomorrow will be 17, so I am certainly ready to get over this hump and onto better days.

Quiet Day

I'm posting a little early today since my family is on the way. Penelope had a very quiet day, no big developements. She got a little tummy time today, simply for positional changes to prevent bed sores. She will have another echocardiogram tomorrow to check the PDA before her ligation. In very rare cases in can close between the last dose of meds and surgery, so they need to know that before they start.

This morning I got checked out for dizziness. I was really hoping my blood pressure meds were too high and no longer needed. My pressures were down to a reasonable level, but not low enough to cause the dizziness. So they did a blood panel to make sure it wasn't a preeclamptic relapse, and my organ function is back to normal as well as my iron levels. So they did a urine test, and it turns I was dehydrated from the rapid edema weight loss. So, I need to up my fluid in take for a few days while my body adjusts to all this. I will still have my preeclampsia follow up on Monday. So there is still hope I can go of the meds soon!

Kangaroo Care

Despite the surgery on the horizon, today brought amazing things. This morning Penelope let me take a picture of her eyes. Not only that, she was awake for about 15 minutes, so I really got to take it all in. Her morning went well, with no changes to her care. I came back to RMH for lunch and managed to take a 30 minute nap, which really helped. When I got back to the hospital I sat with a mom while her son was having his PDA ligation since none of her family could make it down.  As we were getting ready to do Penelope's 4pm diaper change, the nurse told me the great news that they were going to let me hold her. Not only did I get to hold her, but I had to have enough time to be able to hold her for an hour for Kangaroo care. I wanted 8 hours! I had to wait for an hour after we fed her to let her little body focus on digesting, and then at 5pm it was time. It took 3 nurses to get her out of the bed, onto my chest, and then clamp all her iv's, tubes, and whatnot to my sweatshirt so that way if I moved, it would all go with me. I was instructed not to move, I didn't want to go anywhere anyway! That hour was amazing! I got to hear her breath, feel her wiggle, smell the top of her little head, and let out a sigh of relief. I knew she was going to be okay. I could feel how alive she was, and that's what I needed. After my incredibly short hour was up, the three nurses came back in and put her back in her bed. They told me to check her diaper before we tucked her back in, and sure enough, just as they had hoped, she finally had a substantial poopy diaper! So, it was an absolutely wonderful day! Normally Kangaroo care is 3-4 days apart at this age, but they said we can do it again on Sunday so that Jeremy can hold her while he is here. We won't be able to pick her up for about a week after surgery. I'm incredibly greatful that we will have both held her before her surgery.

Eyes

I'm pretty tired tonight, so I'm going to keep this short. This morning brought the awesome surprise the Penny opened her eyes! She didn't show them to me very much, but they were certainly open! I tried to get a picture, but every time I got ready to take it she shut them tight. A nurse from the cardiology team came down to talk to me about the PDA Ligation, and I feel pretty comfortable with all of that. So we are pretty much in a holding pattern until Monday. Oh, and her weight today is 1lb 13oz! So we are on our way!

PDA Update

Well despite all our hopes, the medication did not close the PDA. After talking to another mother I found out that even if the medicine closed it, for the next 4 weeks there would be a concern that it would reopen. In her son's case, it closed and reopened 3 times, and they still had to have the surgery. So Penelope will be having her surgery on Monday morning. The procedure is relatively quick, I think I was told about 30 minutes, but I'm not 100% sure on that time frame. The doctors are expecting her to do fantastic since she is such a fighter. Once we get over this hurdle we will be able to increase her feedings by 100%, so she should start gaining weight quickly. While I am not looking forward to it, I will be glad to be done with all this PDA business.

As for me, I'm holding up better than I expected. It's hard to be away from Lucy and Jeremy, but I know this is where I need to be. I have my 2 week blood pressure check on Monday as well. I moved it to the afternoon because I'm pretty sure it will be through the roof if they try to do it in the morning. My edema is gone, so I've lost about 25lbs in 12 days. The rest of the preeclamptic symptoms have also disappeared. I'm really hoping I can go off the blood pressure medication after this check up. I will have a surgical follow up in a few weeks.

So despite today's roller coaster, my day was pretty good. I had dinner with two mothers that are going to be here for a few weeks as well. It was nice to have a normal mom conversation. You know the kind, picking on your husband, talking about your kids stinky socks, and most importantly laughing. Something we all need to do a little more of.

Support Group

Penelope had her last dose of medicine this evening. Her repeat EKG will be tomorrow. I spent the day hanging out in her room, helping with diaper changes, etc. One of her nurses made a pink bow for her and stuck it to her head with the sticky gel they use for monitors. Her eyelids are also starting to separate, so we should see those peepers soon! I'm hoping they are open by this weekend when Jeremy comes to visit.

This afternoon I went to the NICU Mom's Support Group. I met two moms who had to go through the PDA surgery. They told me that it wasn't as scary as they imagined it, and that now, a few weeks later, you can barely even see the scar. So that alone was worth my time. I got a little discouraged when I found out that one of the mom's due date is tomorrow and she is still weeks away from discharge. She gave birth at 25 weeks to a 1lb 14oz baby. I don't know the circumstances that caused her to deliver, or what complications they have had along the way. I'm sure that her situation is completely different than mine, but I'd still like to know if she's willing to share.
This evening there were two Search and Rescue/Therapy dogs here. Their handlers had little videos about some of the rescue they have been on. Most of the people in the room were fixated on the stories. Not me, I was laying on the floor snuggling with Hawk, the biggest German Shepherd I've ever seen! Seriously, his head was bigger than Beans, and his paws were took up the whole palm of my hand. You can't help but smile when you see a beautiful dog like that and hear how many lives he's saved (and bad guys he's caught!)