Goodnight

Penelope is 124 days today, she weighs 8lbs 12.5 oz, she is 19.75 inches long, and she was FINALLY discharged from the NICU.  The 30+ hours since my last post have been more than chaotic. I got my oxygen and apnea monitor testing yesterday afternoon. After that I met with a one of the nurses from Peds Surgery to talk about how to care for the PEG and what the long term plan is. After that I drove home, waited for Jeremy to get off work, and then drove back as a family (minus Beans). I dropped Jeremy and Lucy off at RMH, and I went to the hospital to set up her pump. Sometime around 11:30 I finally went to bed.

This morning we were up at 5:30 to get everyone cleaned up before cleaning and sanitizing the room at RMH. By 730 we had checked out, loaded the car, filled the tank, and gotten coffee.  We needed to be in Penny's room by 8 for her morning bottle.  The morning was crazy. I had my official teaching for her feeding pump. A nurse pracitioner from the clinic came in to see if I had any last minute questions. Child Life (development specialist) stopped by to give me some paperwork and she had presents for Lucy for being such a good big sister. A little while later the Music Therapist and about 10 other people came in to sing the "Going Home Song". I tried hard not to cry, but I couldn't help it. We were all set to leave but we had to wait to hear back from Peds Surgery on a treatment to help her PEG tube site heal a bit more. So it was around noon when we finally left.

The drive home was uneventful. Jeremy sat in the back seat behind the girls so he could help them. He and Penny slept the whole drive home, and Lucy watched a movie. Once we got home we had oxygen tank delivery, and I had to run errands to get what we needed around the house.

It's been nice to have some time as a family, but it hasn't really sunk in yet. I think in a few days I will wake up and realize we really are home. I could write so much more, but there is a baby squawking upstairs telling me it's time to start her pump.

While this is not the end of Penelope's journey, it is certainly the end of this chapter. This is the final post on Penelope's blog, and in a few days when things have settled down, I will consider starting a new one. So this is goodnight, and not goodbye.

Getting ready to go home!

First off Penelope is 8lbs 10oz! She's SO chubby! Her PEG tube site is finally healing up and her hernia incisions are already looking better than my csection scar! I am still amazed at how quickly babies heal! Today is day 123, and we got the official word that we are going home TOMORROW!!!!!!!!!!!!!

After yesterday's post it got pretty chaotic in Penelope's room. The ear/nose/throat doctor had to put a scope down Penny's throat to make sure that her vocal cords were okay. It's protocol for babies that had a PDA ligation since they were operating really close to the nerves that control the vocal cords. She got the all clear on that. After that a nurse practitioner from the High Risk Clinic stopped up to talk to me. We had to pick a primary neonatologist to work with in the clinic for follow ups. We have to come back next week for an ROP exam, and then again in 1-2 weeks for our first appointment with high risk. Then my social worker came by to set up teaching times for today and have me sign some paperwork

Today is turning out to be pretty crazy. I am waiting for a call back from Dubuque Pediatrics to set up our first appointment with our home doctor. Penelope is currently doing her carseat challenge, which is going fantastic! She has to sit in her carseat for 2 hours (roughly the length of our drive home) and keep her oxygen saturations about 88%. She been sleeping the whole time with her sats at 100%. She's got about 30 minutes to go, so I am sure we are fine! The nurse practitioner called in Penelope's prescriptions, so I need to pick those up this afternoon. At 1230 we have PEG tube care teaching with a surgeon, at 1 is oxygen and apnea monitor teaching, at 2 is feeding pump teaching. Then I need to drive to Dubuque to pick up Jeremy and come back. Tonight we need to stay at the hospital until midnight so I can show that I know how to set up the pump for overnight feedings.

This is my last post from Iowa City! YAY! I will post again when I get home tomorrow. After that I will probably need to start a new blog about our new life!

ROP Change!

After 8 weeks of no change, we FINALLY got the news that Penny's eyes are starting to get better. They are now Zone 3, Stage 2.  So we got the okay to take her home from the opthamology side. So now we are in the final stretch of getting 'home ready'. The big hurdle right now is trying to figure out a home health supplier that my insurance will approve of. Since I work at Finley Hospital they would prefer I get my supplies there, however, Finley doesn't carry the pediatric supplies I need. We are trying to see if they will allow me to get it from UI Children's Hospital.  Hopefully we will be able to get the insurance stuff worked out today, then we need to schedule my training on all the equipment. The only thing Penelope has left on her list is do her 'carseat challenge' to make sure she can tolerate being in a carseat for the duration of the ride home. They will do that test when we are within 48 hours of going home. We are hoping to do it overnight tonight or tomorrow! AHHH! I think we will be home by this weekend!

Day 120

Penelope's weight is 8lbs 5.5oz and 18.75 inches long. She's filling out nicely! Yesterday we started her on the at home feeding schedule. So she gets 60Q4 (2oz) of 27 calorie fortified breast milk during the day for 4 feedings by mouth OR by PEG. Overnight she gets 27 calorie NeoSure formula fed through a feeding pump into her PEG at a rate of 40cc/hr for 6 hours. So she gets 8oz of fortified breast milk during the day and 8oz of high protein formula at night. We have switched to formula at night because breast milk can't sit out for that long, and she needs more protein in her diet. We have put her on a feeding pump overnight because sleep = growth. We want her to sleep through the night, and I, too, would like to sleep. too!

I will consult with the neonatal nutritionist when we exhaust the supply of frozen breast milk. She will decide what formula we will go to at the point and make changes to volume as needed. At some point Penelope will just be given number of ounces to hit in a day. The goal is to have her take bottles during the day at her own pace. Then we subtract how many ounces she took during the day from the total amount needed. We make up the difference in the feeding pump overnight. It's the best way for us to regulate her nutrition without having to force feed her. Eventually she will be taking it all during the day and not needing any over night. Once we are doing that for awhile, AND she is growing appropriately, then we can have the PEG removed.

Her hernia incisions are healing nicely. Her PEG site is redder than they would like so the surgeon is coming up today to look at it. They did blood work, and there are no signs of infection, so they want to figure out what exactly is causing the redness. All in all she is doing really well.

We moved back to Bay 4 today because tomorrow we are going to be interviewed by a couple local TV stations as part of the marketing blitz before breaking ground for the new children's hospital. Our room in Bay 3 was far too small, and Bay 4 is the prettiest. So we are now back in Bed 52 in Bay 4. That is okay with me! They have added a flat screen LCD to this room since we were last in it. I knew they were upgrading them, but I am wondering it was a push to make sure the room has all the state of the art stuff in it before they show it off tomorrow!

Also I have added the link to "Penelope's Story" on the UI Children's Hospital website in the links section of the blog. I will also link the TV interviews once those are available.

Surgery

Sorry I didn't get a chance to post last night. It was pretty late when I left the hospital and the PC's at RMH were all being used.  Penelope's surgery was running behind so it was almost 430 when we took her down to the OR. The procedure was supposed to take 1.5-2 hours, but ended up being 2.5. She had a bilateral inguinal hernia repair.  Penelope's left side was a sliding hernia, which was unexpected. So it took considerably longer to repair.  They were closing the right inguinal canal as a precaution, however, when the opened the right it had already herniated, so it, too, took longer to repair than expected. So there are two incisions on her lower abdomen, one for each inguinal canal.

On the upside her gtube was able to be placed with an endoscope, which we were told was unlikely because of her size. So she has a PEG tube now and hopefully in the coming months we can get a 'button' placed, which would look similar to the valve on a beach ball. So it would be flush with the skin.  This feeding tube placement is only needed because Penelope doesn't have the strength to take all of her feedings by  mouth. As soon as she is taking 100% of her feedings by mouth AND having appropriate weight gain she can have it removed. The doctors anticipate she will have it out before her first birthday!

Post-op was tough for her. She was in a lot of pain with the hernias being far more invasive than anticipated. Around 915 last night she got startled by the blood pressure cuff and pulled her legs in really fast, which was incredibly painful for her. So we had a rough 15 minutes until she could have more morphine. When I called at 1am they said she had been sleeping soundly and had not needed more morphine. Same report when I called at 4am. So she is just taking Tylenol for the pain at this point.

She just got her first feeding since 6am yesterday. She was a very hungry girl. She was too tired to try bottle feeding so I got my first attempt using the PEG. So far so good. She fell asleep as soon as the milk started going in her belly.  This weekend I will get trained on using a feeding pump for overnights. I figure if we are going to get stuck having a PEG then we will put her on a continuous feeding pump for overnight so she sleeps all night.

Big Day

Today we moved to Bay 3 for pre-op testing and we will stay there until discharge. I have only met one other mom who managed to hit all 5 bays. I should get some sort of award or at least extra massage coupons! Tomorrow is a big day for us. Penelopes surgery is scheduled for 325 pm give or take 2 hours according to the surgeons. The three procedures will take about 90 minutes (left inguinal, right inguinal, gtube) I also have my meeting with WIC since Penelope gets Medicaid because micropreemies are considered disabled for the first year of life. So I am hoping to get some sleep tonight because tomorrow is going to be a long day.

Gastrostomy Tube

Penelope is now 113 days old and 8lbs! Feedings are still the same, and her respiratory support remains at 1 liter high flow with a floor of 100% (similar to what she will come home with). Today Jeremy and I decided enough is enough and opted for Penelope to have a gastrostomy tube (gt or gtube) placed in her stomach during her hernia surgery. Bottles are getting better, but she is still taking less than 25% of her feedings by bottle. We were given the option for me to be trained to continue putting the feeding tube through her nose, but I feel like that is too risky. There are too many things that could go wrong, and the last thing we need is an error at home that puts her back in the hospital. The gtube should be temporary until Penelope is able to take 100% of her nutrition by mouth.

So why do we need to take what seems like such a drastic step? Penelope has some serious facial and oral aversions. She spent nearly two months with a tubes in her mouth and down her throat. She gets tubes shoved down her nose frequently. She has medical tape on her face at all times, and she accidentally rips said tape off her own face several times a day. Her first few weeks of bottle feeding were painful from the acid reflux, aspiration, and gas pain caused by swallowing air from the high flow. She is also now at a developmental stage that she should be better at it than she is. Sure we could skip this gtube and stay in the hospital until she figures it out. That could be a few more weeks, or a few more months.

So as hard as it was to make this particular choice I know in my heart that it is the best thing for her. She can come home and not have people poking at her every 3 hours. She can still practice bottle feeding when she feels like it, but there won't be the added stress if she's just not up to it. As she gets older we can give her treats like popsicles or suckers to help her become more comfortable with using her mouth. It's going to be a long road, but as I've said millions of times before, I can do ANYTHING if we are home!

So tomorrow morning I should hear from Pediatric Surgery to schedule the procedures. We will have to move back to Bay 2 or 3 after surgery because she will be intubated and on an IV for pain control. The good news they figure we should be discharged 7-10 days after the surgery!  WE WILL BE HOME IN LESS THAN TWO WEEKS!

Surgical Consult

First off Penelope is now 110 days old, weighs 7lbs 11oz, is 18.75 inches, feeds are 56Q3 of 27 calorie fortified breast milk, she can have as many bottle attempts a day as she can tolerate, and her respiratory support has FINALLY been changed to 1.5 liter high flow with a floor of 80% oxygen. Tomorrow she will go to 1 liter high flow with a floor of 100% and if that goes well, in a few days, she will be switched over to straight oxygen. That's the kind of oxygen she will come home on, so we are super close in that department!

Bottles are going better but she still isn't very consistent. Some feedings she will take 10 of the 56 and others she takes all 56. She doesn't fight it anymore, so we are getting closer. The doctors are giving her another week to figure out if we are going to be putting in a feeding tube surgically before she comes home. Speaking of surgery, the Pediatric surgery residents looked at her hernias today and the inguinal hernia IS surgical. So we need to get everything home ready, do the surgery, hang out for a few days in recovery, and then GO HOME!  HOME HOME HOME!

Long Time

Sorry that I haven't posted in a few days. There hasn't been much to write about so I decided to take a break. So lets start with the stats, Penelope is now a whopping 7lbs 7oz, she gets 56Q3 of 27 calorie fortified milk, she gets 3 fortified, rice cereal thickened bottle attempts per day. She was moved back to Bay 4 last week at my request. Bay 4 and 5 are the same as far as progress, but 4 is nicer, and since I practically live here, I wanted the nice room. So we have had 6 rooms now, plus the 3 that I stayed in as an inpatient!

Bay 1, Bed 5, 42 days
Bay 2, Bed 24, 3 days
Bay 2, Bed 23,  50 days
Bay 4, Bed 52, 3 days
Bay 5, Bed 67, 7 days
Bay 4, Bed 55, 3 days and counting

Today was the big ROP exam. Last night was a long night, I slept, but I don't feel like I am rested. I woke up at 6 and was at the hospital by 6:30. I spent 30 minutes in the hospital meditation room gathering my strength. A good ROP outcome would mean going home soon, but also probably mean getting a feeding tube put in surgically since bottles are still not very good. A bad ROP exam would mean eye surgery this week (highly unlikely for us at this point, but at least it would a means to an end). A stable ROP would mean 2 MORE weeks of waiting on the eyes, but buy me time on bottles. None of the options were good. We are in the STABLE category. We have been stable for 7 weeks, the next exam is in 1-2 weeks, so I won't know until Wednesday if we are on next weeks list or not. This will mean HALF our stay has been waiting for her eyes. Ugh.

Bottles are still not going very well. She isn't in pain anymore when she takes a bottle, but it takes a lot of convincing to get her to even try. The high flow is causing her to swallow a lot of air, so she was started on Mylicon yesterday to see if we can relieve some of the gas pain. We were all banking on her eyes being a better today and being able to turn down the high flow. The nurse practitioner is consulting with Dr Klein to see if we can go down on the high flow and up on the oxygen level for the same effectiveness. It would at least help us get her a little more home ready, and maybe get bottles to work out more.

So, we sit and wait, and wait, and wait, and wait. Either way, it looks like I will now be spending the 4th of July in the hospital.

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UPDATE! So, Dr Widness says that her eyes are stable enough that we can go home like this and come back for weekly checks. So now we are going to start getting home ready! So they are going to start weaning her high flow to get her on home ready oxygen. We have to show over the next week that she is showing some improvement EVERYDAY on bottles and then I can be taught how to place an NG tube (meaning feeding tube through her nose instead of surgical). If she isn't showing signs of improvement then they will place a G tube during her hernia surgery! I don't have an estimated discharge date, but they no longer feel like we need stay for her eyes! HOORAY!!!!!!!!!!!!!!!!!!

Swallow Study

Penelope has been bottle feeding for a month with very little progress. Last week they started her on Prilosec, and they stopped it yesterday because it didn't help. I have tried every suggestion the staff has given me with no luck.  The harder we work the more she fights. Last night I was so frustrated and praying for answers.  Someone must have heard my prayers because today's nurse was hell bent on figuring this out. She did a bottle at 9am to asess Penny and then consulted with the doctors. The doctors ordered another speech consult for noon. At noon speech ordered a Swallow Study and by 1:45 Penny was in Pediatric Radiology.

The purpose of a swallow study is to see mechanically how someone swallows and where the contents end up. So Penny had to drink a liquid that would show up on an xray and then have a series of pictures taken while she sucks/swallows.  They found exactly what the nurse had suspected. Every time Penelope swallows just a little bit goes down her airway. Think about what it feels like when you have liquid go down the wrong way and then imagine that happening EVERY time you drink! No wonder she hates bottles! So the theory is that if we thicken her milk it shouldn't happen. I am hoping we have figured it out!

On our way back to Penny's room the nurse explained to me why she was able to see what everyone else missed. She is actually part of the feeding study research team. Her role in particular is to evaluate bottle feeding, so this just happens to be her specialty! On top of that there were only a couple things we hadn't ruled out, so it was easier for her to figure out. So tonight I am thankful for Tera and her very specific knowledge! I think I will be nominating her for the hospital's nursing excellence award when I get back to IC!

7lbs

Penelope is growing by leaps and bounds now. Her feeds are now 56Q3 of 27 calorie fortified breast milk. She still only gets 3 bottle attempts a day, but those are starting to get better. At her noon feeding I got her to take about 40, and at 6pm I got her to take 50! So maybe tomorrow we can go up to 4 bottle attempts a day. Her fussiness is a little better now that they have gone down to the 27 calorie from the 30. She has been on Prilosec for a few days and fussiness is a little better. Hopefully the switch to 27 cal will also help since the 30 is harder to digest. When they did her ROP exam last week they said 1-2 weeks for the next exam. She is stable enough that they felt she could be skipped this week if the schedule was heavy. There were no ROP exams because of the holiday, so I am still not sure if we are having one this week.  Hopefully I will know tomorrow.

100 days

I sure am glad that Dr Dagle burst my bubble on day 70! Today would have been really hard to swallow otherwise. Its the elite sort of club you enter when delivering a micropreemie. Its right up there with a hospital bill the size of a phone book. We have come a long way and learned a lot. So I want to thank some people who have made this miracle possible. Our parents, both mine and Jeremy's. Without thier support and willingness to step in and take care of Lucy this would have been far more difficult to handle. My sister-in-law Areal for relieving the grandparents whenever she could. My sister-in-law Joli for sending food to Jeremy, and the amazon gift card that bought me a book that gave me a much needed distraction. My siblings for calling to check on me. My brother Dan for driving here as soon as he heard I was in an ambulance. His wife Nekole for being here to watch over us as we slept after the delivery. To my cousin Chuck for giving me moments of normalcy those first few weeks. My Aunt Bev for feeding me whenever she was in town. My friend Wendy for putting together Team Penelope for the Ronald Run. My new friend Meagan for being here with me. Lucille for being so unbelievably amazing while mommy is away. Most of all to my husband for everything he is doing to make it possible for me to stay here. I don't know if I would have the strength if it weren't for my support group. I am so unbelievably blessed to have all of YOU in my life. Thank you for your prayers and support.

Bay 5

A few things have changed since my last post. The speech pathologist thinks her bottle issues are from acid reflux. They have put her back on prilosec and it seems to be helping. Her feeds have been increase in volume to 54Q3 but the lowered the fortifier to 27 calorie. She gets 3 bottle aytempts a day and her weight is now 6lbs 13oz! Today she got moved to Bay 5, which clincally is the same as 4. They actually closed 4 because there is a construction project directly below that will be too disruptive to the babies. Bay 4 only had 6 babies and Bay 5 has 18. Our room is much bigger because it used to be an adult wing with two patients per room. So its certianly not has homey as 4, but it has all the same amenities. So we spent 6 weeks in 1, 7 weeks in 2, 4 days in 4. I wonder how long we will be in 5!

My other due date

Today is my original due date...we are officially on overtime. Penelope is 6lbs 10oz, feeds are 48Q3, and she gets 2 bottle attempts per day. Bay 4 is treating us well and I am looking forward to having the whole family here this weekend. The doctors are starting to discuss when she will have her final surgery to repair her inguinal hernia. They want to wait a bit longer to see how she does on bottles. There is still the chance that she will need to have a feeding tube placed in her abdomen, so they would do thay during the hernia surgery. I am hoping to avoid that. Her bottles are going better but still not great. So I guess I am greatful that her ROP issue is buying us more time.

Bay 4

The morning started off with an eye exam. Her eyes are still stable with no progress. Its frustrating but its not getting worse, and that is just as important. During rounds I asked if we have to stay in Bay 2 until her eyes get better. Surprisingly they said we could move and that there would be a room opening in Bay 4 this afternoon! So at least we can wait out the eyes in a more comfortable room. Her room is just like a regular hospital room. There is a couch, tv, bathroom, and a DOOR! Bay 4 only has 6 rooms, so its very quiet. When we get closer to going home I will room in with her. That will be an awesome milestone!

Short

Writting from the tablet, so I will keep it short. 6lbs 6 oz, 48Q3, no other changes. Bottles are improving, ROP check on Monday.

90 Days

First off, HOORAY for universal power cords for laptops! I wasn't thrilled with spending $80 on a power cord, but it's cheaper than a new laptop or late fees on our bills. So we'll go with it.

Penelope is now 90 days old. I certainly didn't think we'd be in the hospital this long. She's 6lbs 4oz, and all her other statistics have remained the same. Bottles are still slow going, but she'll get there. I hope she is able to come home without the feeding tube, but I stand by my previous sentiments. If they attach the word "HOME" to anything, I can live with it.

Tonight the mommy group in Dubuque had their final meeting of the year, and I was actually able to attend! It was great to see everyone, but I'll admit I felt a bit out of place. It's a hard feeling to explain. I know that the world has gone on with out me, that 3 months have passed, yet I am still surprised when I can't find something where I left it. So for those of you who were there tonight, thanks for chatting with me and I apologize if I seemed a little disconnected.  My social skills are a little rusty! I was amazed to find out how many of you are reading my blog and I appreciate your support! It's reassuring to know I have such a strong network of mom's to rely on when we come home!

Night and Day

Penelope is 6lbs 2oz today. Her feeding schedule and respiratory support remained the same. The nurse clarified that it was simply a recommendation from speech pathology to do one bottle each shift, but the doctor had not ordered it that way. So that has been fixed. Her 'day' bottle went really well. She took about 15mL in 10 minutes. So increasing the frequency should really help her! This morning the discharge nurse came in to talk to me. While we aren't anywhere near ready to start discharge planning there are some things we can start working on. The first being day and night simulation. When the sun is up the lights need to be on. They dim them for 'nap times' even though she is pretty much always sleeping. At night they will on turn on dim lights when it's time for diaper changes or bottles. She also told me to finish all my online preemie classes so that it doesn't cause a hold up for going home. So right now Penelope's room is in nap mode, and I am going get some 'NICU Knowledge' courses out of the way. So I should probably stop blogging and get to it!

6lbs!

Penelope is 6lbs 1oz, 4.5 times her birth weight! Not bad for being a little over 12 weeks old. Her ROP exam was a bit confusing for me today. The eye doc told me that it was 'maybe a little better', but it was also her first time examining Miss P. So, I took it with a grain of salt. This afternoon the official report was available and it still said "Zone 2, Stage 2, No Plus Disease". So as far as we are concerned its the same. This Sunday is my due date (eek!) and I have been told a few times that it usually gets better 'around' 40 weeks. That could mean 38 weeks or 42 weeks. I'm not really holding my breath for that either. So, I will continue to pour all my energy into bottle feeding practice, and hope that 40 weeks really is the magic number. Speaking of bottle feeding, it is getting a little better. Speech pathology is no longer watching her since her issue is simply that she needs more practice swallowing. He did recommend that we start doing bottles once every 12 hour shift. So the day nurse was going to make sure the night nurse knows that she needs to be working on bottles too. Penelope also got a mobile on her crib today. It plays music or ocean noises and has little fish that swing side to side. Her reaction was priceless! She stared at it for a good 20 minutes. I love her little expressions when she encounters something new!

ROP Tomorrow

Penelope is scheduled for an ROP exam sometime tomorrow morning. I am preparing myself to hear that there are no changes. Bottle feeding is going alright. She is still only allowed one attempt a day, and she only gets to try for 15 minutes because it is exhausting. She knows how to suck, but she hasn't quiet figured out the swallowing part. Her weight is 5lbs, 14.5oz, and she is still getting 46Q3 of 30 calorie milk. Hopefully I will have good news to post tomorrow.

3 Months

Penelope is 3 months old, weighs 5lbs 14oz, is 17.25 inches long and her feeds are 46Q3 of 30 calorie fortified breast milk. (46mL =1.5oz). She acts a lot like a newborn now with her wake and sleep cycles, so we get to see more of her. There is no longer restrictions on when or how long we can hold. So we get LOTS of snuggle time now. It's helpful to be able to just pick her up when she is fussing or put her down when I need a break. She is allowed to attempt a bottle once a day. Bottle feeding is slow going, but that's okay, it's something to work on while we wait out the eyes. All in all things are going well. Lucy is easing into being the big sister. When Penny cries she reminds me that she needs her 'pa-cee-fi-ya' and reminds people to use their quiet voices. She likes to 'Play Penny' these days where she takes her stuffed sheep and wraps it in her blanket named 'Nice'. Then she rocks sheep and tells him he's a good baby. It's adorable!

First Bottle!

Penelope is still 5lbs 7oz, and her feeds were increased to 44Q3. She did well on the 2 liter high flow, so she got the go ahead to try a bottle today. Speech pathology came down to watch the first feeding since they work with the function of the mouth and tongue. We attempted the first bottle at her noon feeding today and it didn't go as planned. Penelope was in rare form, she refused to wake up! After 15 minutes of trying we gave up. She only gets one attempt a day. Tomorrow afternoon I will be heading home since I have to work Thursday and Friday. So I told the speech pathologist to do the feeding with out me. As much as I want to be there for it, I also don't want them to NOT make any progress just because I am gone. Technically I DID give her the first bottle, which is good enough for me!

80 Days

Penelope is 5lbs 7oz. Her feeds are 42Q3 of 27 calorie fortified breast milk. Tomorrow marks 12 weeks since I got sick. We are less than 2 weeks from my due date. Holy cow!

Penelope's ROP eye exam this morning was stable with no change. Stable is good, no change is better than change for the worse. I was bummed when they told me because I know it means another week of no changes, no progress, and I'm growing impatient. Shortly after the exam the nurse practitioner came into to do her daily assessment. She said she was going to pitch the idea of turning down the high flow and turning up the oxygen for the same effectiveness, but that I shouldn't get my hopes up. Dr Dagle wasn't keen on that idea last week, so he probably won't be today either. Well, the stars must have aligned because he went for it. So her high flow has been turned down to 2 liters per minute, and they turned her oxygen level up. This gives her the same effective oxygen levels as it did on the 3 litres. So if she does well over night on the change then she can have a BOTTLE tomorrow! I am so excited! If that goes well then we can talk about moving to a new Bay. So, while the eyes haven't made any progress, it sounds like we can at least work on something else this week, which makes the waiting a little easier to deal with.

Ronald's Run

First off, Happy Mothers Day! It's been a few days since I've written. Penelope is now 5lbs 6oz. Her weight has been the same the last few days since they switched her to 27 calorie fortifier. Her feeds are 42Q3, and her respiratory support has remained unchanged. Tomorrow another eye exam. Fingers crossed!

Today was the 27th Annual Ronald's Run fundraiser for the Ronald McDonald House. My good friend Wendy put together a team (Team Penelope), and we managed to raise $1000+ in online donations plus some cash donations that haven't been tallied yet. We had 7 runners, and 8 walkers. Lucy participated in the Kids Run, a 30 yard dash, and she rode in the stroller for the 5k. At the 2 mile mark she decided she wanted to run again, so she RAN the rest of the 5k. She was so excited when the whole crowd cheered for her as she ran across the finish line. It was awesome! So be prepared when I start bombarding everyone with emails next spring for the 28th Annual Ronald's Run to join our team "Every Penny Counts"!

Back To Work

Yesterday Penelope was 5lbs 5oz, and they increased her feeds to 40Q3. They changed her fortifier from 30 calories per ounce to 27 calorie since she doesn't need the extra calories anymore. Today she is 5lbs 6.4oz, and no other changes have been made to her care. Today I started back at my job at Finley Hospital. I would have taken more personal time but we would have to go on Cobra for insurance, and we can't afford to do that. We also can't afford to switch to Jeremy's insurance while she's in the hospital. So back to work I go. I only work 2 days a week so it's not terrible. I will be working my two days back to back each week so I only have to make one trip. As hard as it is to leave Penelope, it helps that I get more time with Lucille. I very much look forward to the days when I am not torn between two cities and two girls. I am sure in a few years when they are driving me crazy I will long for the days when they were separated by 90 miles.

Eye Exam Report

The report said "Stable, no change, zone 2, stage 2". It says no change but the last report was "zone 2, stage 2-3". Dr Dagle is taking it as some change but not enough to be comfortable that it is resolving. So there will be a follow up next week. As a result we will be sticking with the 3 liters of high flow. Her weight was 5lbs 3oz, and her feeds are still 38Q3.

Eye Exam

Her eye exam was this morning and the opthalmologist first said that it was 'the same, maybe a little better' but before he left he said 'they are the same'. He scheduled another exam for next week, so it clearly wasn't enough improvement for them feel like it is starting to resolve.  The official report was not yet available when I left for the evening, so hopefully it will be available in time for rounds tomorrow. As a result there were no changes to her care today. However, she is now 5lbs 1oz! So that's something!

Fingers Crossed

There were no changes yesterday so I skipped posting. Today Penelope is 4lbs 12.5oz and feeds were increased to 38Q3. She is doing great in the crib. Tonight she was awake for maybe 20 minutes while I was holding her. I still can't really tell what color her eyes are, and her hair color depends on the lighting. She certainly looks like her big sister!

Tomorrow she is scheduled to have another eye exam. I am anxious and nervous. I am really hoping there is change of some sort. Preferably good change. I don't want her to have surgery, but it's hard to think about sitting this holding pattern indefinitely. So I will cross my fingers, say some prayers, and try to get some sleep! I have a feeling I will be at the hospital much earlier than I intend! I don't want to miss this exam.

Day 70

Today was day 70 and my favorite doctor was on service. I asked him if he thought we would be able to go home by day 100 and he said it's possible but not likely. On top of that we found out that Penny has an intestinal hernia which will require surgery. It's not urgent so it will be done closer to when we go home. Seeing that I was bummed, the nurse decided we could at least try a crib so there would be some sort of progress. Penelope had her 4 hour crib trial this afternoon and she PASSED! So we can check that off the list! She also got to discontinue 2 medications and they are letting her outgrow 3 others. So we are making progress where we can.

No Change

Penelope is 4lbs 12oz today. There were no changes to her feeding or respiratory care. So whatever Dr Klein did seems to be giving him the desired results. I'm not sure what day her ROP check will be since a new Opthamologist comes on service May 1. She is currently on 3 liter high flow to optimize oxygen so we can't move to a crib or start bottles. So we are just sort of hanging out. Today has been pretty low key. Penny had a bath this morning, and had a couple hours of mommy snuggle. We have a research follow up this afternoon for the oxygen study and then we will snuggle some more. At least we get lots of snuggle time these days!

Ultrasound

Penelope had her follow up head ultrasound today and it came back normal. So that's one less thing on our list! There were no changes to her feeding schedule and her weight is 4lbs 10oz. There were some changes to her respiratory care to optimize her effective oxygen levels to help heal her ROP. Dr Klein, the head of the NICU and respiratory expert, was brought in for a consultation. He made the changes and said he will be back tomorrow to check the numbers. I figure if it takes him 30 minutes to explain to the nurse practitioner all the details of why this change is better, it is probably going to take even longer for me to get it. It's best to just let Dr Klein do his respiratory magic. So we are in a holding pattern until her eye exam next week.

ROP Follow Up

Penelope is 4lbs 10oz tonight! Her feedings are 35Q3, and she is on 2 liter high flow. Her ROP exam didn't go as well as we had hoped. Her eyes have gotten worse since last week even with the higher oxygen levels. So they increased the baseline level of oxygen again and she will have another exam next week. If they are worse again next week we will have to start talking about laser eye treatment to remove the scar tissue that is building. So hopefully this will do the trick.

Helper

Lucille came down with me yesterday so she could have some mommy time. She did really well at the hospital today. She kept herself busy with toys and watching old cartoons on my tablet. She even got to help give Penny a bath! It certainly will be easier to juggle both girls when we are not in a hospital setting. Penelope is 4lbs 7oz today. Her feeds were increased to 35Q3, and her high flow was turned down to 2 liters. If she does well with that we should be able to go a crib by Wednesday. I am not sure what her high flow level needs to be at for us to start bottle feeding. So hopefully we will be starting that soon as well. There arent many steps left!

36 Weeks

Today I would be 36 weeks pregnant, the gestation at which I delivered Lucille. Penelope is now 4lbs 5oz. Lucille was 4lbs 9oz at birth. So similar, yet drastically different! I never thought that I would look back longingly at my 36 hour induction! It's amazing how perspective can change!

Penelope had a nice quiet weekend. Her high flow was lowered to 3 litres and her food was increased to 32Q3. She is still in the incubator, but hopefully tomorrow I can get someone to give me a time frame on the crib switch. There really isn't much to report tonight, but it's going to be a busy week. Now that she is 36 weeks there will be quiet a bit of follow up testing happening, so I will save my words for that!

Triple

Well I am home in Dubuque for the weekend, so I won't be posting again until Sunday. It's probably good that there will be a break for a few days becuase there isn't much to write about right now. It was a low key day with no changes to her care. Her weight is tonight is 4lbs 4oz, TRIPLING her birth weight. She is now the weight that Lucille was when we brought her home! So we are finally at a size that I am familiar with.

Have a Happy Easter!

ROP

Penelope had another eye exam today. She is showing some signs of ROP now (zone 2, stage 1) so they adjusted her oxygen levels to compensate. Her weight is down to 3lbs 14oz do to the increased diuretic dosages. She also got her immunizations today, so she was pretty sleepy. We did manage to get in two 2 hour snuggles. After the second snuggle I decided to do some PT back stretches with her before I changed her diaper, as recommended by her therapist. I did the first stretch and she farted so loud is made me jump! The therapist was right, PT stands for poop therapy!

60 Days

Penelope is 60 days old. I can't believe it! It doesn't seem like it's been 9 weeks since all this started. She certainly has come a long way! Today was low key with no changes to her care. She is doing great holding her temp in the clothes, so hopefully we can move to a crib in the next few days. So the next step is to get her high flow down to 2 liters or less. Hopefully that will happen over the next few days as well!

Clothes!

Penelope had quiet a busy day. Her weight if officially over the 4lb mark! Her feedings were increased to 30Q3. That's an ounce!! She had PT this morning, and her range of motion was much better. She got a couple hours of mommy snuggle time and then had a tub bath. Then, my favorite part, she got to wear clothes! I wasn't prepared for it to happen today so I didn't have any of her clothes with me. So she had wear hospital clothes, but the nurse made sure to find something really cute. She ended up in a little sleeper with owls on it and the front says "Whooo is the cutest!". The nurse also found blankets with cute little cartoon owls. Hopefully that's not an omen for her sleep pattern! 

Clothes are the first step towards moving to a crib. She has to break 2kg before we can attempt it, and right now shes a little over 1.8kg. So maybe by the end of the week. I asked about starting bottle feeding soon since she is ready gestationally. They won't start that until she is on less than 2 liters of high flow. That is because the added pressure puts her at risk for aspirating (breathing in) the milk instead of swallowing. That also means we got bumped from being 'first out'. So we have a little more progress to make before we move, but we are on our way! Everyone tells me that once they hit the 4lb mark they start gaining weight quickly! I can't wait!

Almost 4lbs!

There isn't much to say tonight. Quiet day, no feeding changes.She was having to work hard breathing so they increased her high flow to 4 liters. Her weight tonight is 3lbs 15.9oz!

First Out?

This morning I was told by our nurse that Penelope is 'first out'. Unlike in Bay 1 where you moved if they needed your room, it now means we move when a room becomes available. Bays 4 & 5 have fewer rooms, so it requires fewer nurses. However, there is a minimum number of nurses required to cover breaks. So, they keep that minimum number of beds full to keep the staff busy. They told us we would probably be going to Bay 5 because there is an expected discharge. When I called to check on her tonight she was still in Bay 2. She won't move overnight unless someone gets moved backwards.

Bays 4 & 5 are where they send babies who need more time but don't need intensive care. While it's considered part of the NICU its actually a NCU (neonatal care unit). The rooms are normal hospital rooms. They have windows, private bathrooms, couches, and tvs.  Babies have to extubated and IV free to go. Penelope probably still has a few weeks before we will be able to talk about discharge. She hasn't started bottle feeding or moved to a crib. It will be nice to be in a more comfortable room for the final push!

*Weight today was 3lbs 10oz with no feeding or respiratory changes.

Physical Therapy

Overnight she got moved from the heater bed to a hybrid incubator. It looks like a crazy space pod becuase the top lifts straight up when you push a button. Anyway, a heater bed gives constant heat from above. An incubator is completely enclosed and kept warm by the baby's body heat. A hybrid is enclosed like an incubator, but has the ability to heat the air when needed. Penelope has a temp probe taped to her belly, so her body temp controls when the heater turns on. So once they notice that the heater isn't kicking on anymore they turn the heater off and she will be able to wear clothes.  If she shows that she can keep her body heat that way, then she can go to a crib!

This morning she had her consult with the neonatal physical therapist. The main purpose of PT at this age is to help with range of motion. The therapist watched how Penelope moved on her own, and then worked on her areas of tension. She spent lots of time stretching and massaging her neck and shoulders. When the therapist went to demonstrate the neck/shoulder technique on me she pointed out that I have the same problem. It's not like I'm under stress or sit in uncomfortable chairs all day!  Anyway, it was very hands on and I feel like I learned a lot. Now if I could just get her to work on my shoulders!

On top of all the bed and therapy excitement, she also got her first real bath today! She was wide awake and happy for the whole thing. After we finished and got her tucked in, she slept for 5 hours! We need to do baths more often!

No Changes

Penelope was very calm all morning. She has been at 21% oxygen for the past 24 hours. There were no changes made to her diet or her respiratory care. She gained a good amount of weight and is now at 3lbs 9.6oz and she was 15.75 inches today!  She was having a hard time settling down this afternoon so we kangarooed for a few hours. It must have been more calming than I thought because I fell asleep, too.  If she can manage another 24 hours on high flow we will start the transition out of the heater bed. The next step is an isolet (looks a lot like an incubator), and then a crib!

High Flow

I guess it helped that I said things were going to be slow for awhile, because today was not at all a slow day! So lets start with the basics. Her weight today was 3lb 6.6oz. She had her ROP eye exam today and she is still showing no signs of disease, which is fantastic. When the RT came in this morning he was asking me if they had talked about extubation because Penelope's vent settings were so low that the machine wasn't really doing anything. To top it off she was sitting at 22% oxygen, regular air is 21%. I told him that they had mentioned it yesterday, but I didn't know what their plans were yet. On rounds Dr M surprised all of us by suggesting that we skip past CPAP and go straight to high flow nasal cannula. I couldn't believe it! He's not the sort of person who likes to skip steps even if they seem warranted. So a nasal cannula is a tube with two little prongs that go into the nostril. It's what you typically see on people who are receiving oxygen supplementation. 'High Flow' means that the oxygen blend is pressurized. She is on a flow of 3 liters per minute (it can go up to 6). For most of the day she sat at 21% oxygen, the lowest setting there is.

So if her settings are so low why does she need a nasal cannula?  1) Preemies are not good a storing oxygen, so when she moves a lot she de-saturates (de-sat), meaning she uses up whatever oxygen reserve she had . So when she de-sats they can increase her oxygen to help her build back up her stores more quickly. 2) Preemies are not good at taking deep breaths. The high pressure forces her to take deeper breaths than she would on her own. Deeper breaths mean better saturation.

As a result of all the chaos today she was pretty crabby. I tried holding her this afternoon but it was too much for her. So I only got to hold her for about 15 minutes and she spent the majority of the time clawing at me. So hopefully tomorrow she will be in a better mood and I will get to hold her more.

Slow Day

I don't have much to report today. Her weight is still 3lbs 6oz. Her glucose levels were normal today, so yesterdays levels might have been stress related. Her chest xray looked good so they weaned the vent a little more. There was talk about going back on CPAP this afternoon, but it had not happened by the time I left. I will call to check on her before I go to bed so that there are no surprises in the morning. It looks like there will be some boring reports until she gains more weight.

I didn't spend much time in the NICU today since I started the day in Dubuque. I had group this afternoon, and then ended up coming back to RMH around 4:30 becuase I had a tension headache. I am sure it's the result of going to the chiropractor yesterday. She had to do quiet a bit of adjusting. This evening I was hanging out with another NICU mom and found out she was a beautician. So she gave me a haircut in exchange for a ride to the grocery store. Nothing like good old fashioned bartering!

Post-Op Follow Up

Today was my postpartum/post-op follow up with my midwife. My blood pressure was still a little high but well within a normal range. My lab work was good and my incision is healing nicely. The midwife and I had a long talk about the risk of future pregnancies. Jeremy, the midwife, and I are all in agreement that this has to be my last pregnancy.

Penelope's weight seemed to be more in line today at 3lbs 6oz. They turned down the vent a little more as well. Her glucose levels were a little high today so they drew some blood to check for signs of infection. When that came back clean they took a urine sample to see if there is possibly a urinary tract infection. It will take a few days to get the culture back on that. If that comes back negative and she is still having elevated glucose levels then they will consult with a specialist. So we'll see what her levels look like in the morning.

Weight?

Penelopes weight has been all over the place the last week. She's been fluctuating by 100 grams each day (approx 4 oz). Thats a pretty big swing for such a small girl. The doctor feels that the bed the discrepency since the scale is built in. So we switched out her bed this morning and weighed her as a baseline for the new bed. So I dont really know what her weight is right now. She was 3lbs 1oz at midnight, and 3lbs 5oz at the baseline on the new bed. I am hoping the new weight is the real one. The only other change today was backing off on the vent a bit. She's recovered from her exhaustion and was acting like herself today. She got some daddy snuggle time as well.

Intubated

Well it wasn't my imagination that Penny has been cranky the past few days. While she was capable of doing all the breathing herself she was exhausted from it. Last night was even tougher than the night before. Sometime overnight they switched her to a hybrid cpap that would give her some assited breaths but it wasn't enough help. They ran some tests to make sure it wasn't a lung infection and then tried some albuterol with no luck. So around 9am they intubated her and put her back on the conventional vent. For about the first hour she gave up and let the vent do all the breathing for her. By the time I left for lunch she was at least doing some of the work. By this evening she was breathing for herself again. So they will give her a few days of rest and then start the steroids before they extubate again. Hopefully she will stick to the plan this time!

7 Weeks Old Today!

Penelope lost a lot of weight, she's down to 3lbs 1.1oz. They adjusted all of her medications today as a result. They are figuring the weight loss if from the combination of the diuretics, having to work a little harder on the CPAP and her almost constant wiggles. She didn't sleep well last night either because her nose is sore from the tubing. Around 9:30am we decided she would probably calm down and sleep if we did kangaroo. I held her until 12:30 when I took a break to eat. Then I held her again from about 2 until a little after 6 when it was time for her evening lab work. Sometime around 5:30 she decided she'd had enough, but the nurses were all occupied getting ready for a set of twins to move in. So we made due, and I was incredibly thankful that her pacifier was within my reach. It was awesome to hold her for so long, but I am physically exhausted. I realized where she got her wiggles from because I, too, am not good at being still for that long! When I left she was finally sleeping in her bed sucking on her pacifier. It probably helped that we dipped it in some TootSweet!

Kangaroo Too

Penelope had a crabby day. She didn't show any signs of illness so we are all assuming that she's still experiencing some discomfort from the CPAP tube. The volume on feeds remain the same but the fortifier was increased to 30 cal/oz. No change in CPAP settings.

What I haven't touched on this week, because of all the other big changes, is that I am now allowed to hold Penelope everyday for up to two hours at a time. She's old enough that she can tolerate it every day, and she desperately needs human contact. The little contact she has been getting is in the form of pokes and prods. So, it is my job to give her nurturing touch through kangaroo care (skin to skin contact) Studies have shown that preemies who get regular kangaroo time grow faster and I don't mind helping! We've got a pretty good system now where I spend 15-20 minutes talking to her while I rub her back until she falls asleep. I've figured out that if I wear tank tops we can put her down the front of my shirt which is much easier than wrestling with hospital gowns. She's tolerating it well so we might be able to go up to twice a day. I will get to hold her for 4 hours a day!

Extubated!

This morning as I was walking into the NICU Carol, our nurse from yesterday, walked by and smiled. She did a quick about face and came running over to me with an even bigger smile. She said  "BIG DAY! Such exciting news!" I was incredibly confused and said "ROP exam day? Yay?" Thinking maybe we had a good exam and didn't have to do them anymore. The she proceeded to tell me how Penelope pulled out her breathing tube over night. I couldn't believe it. Apparently around 10:30 last night Penelope's oxygen levels dropped, trigger the alarm, and the nurse walked in to find that Penelope had decided she no longer needed a ventilator! The nurse practitioner on call last night decided they should try her on CPAP. If it didn't work they would have the on call resident come and put in a new breathing tube. So they didn't call me because there was a good chance she would be intubated again by morning. Well, Penelope knew what she was doing! She had an awesome day. She pulled at the tube a lot today, but it's taped over her nose and much harder to get out. I imagine having a large tube shoved in your nostril is probably pretty uncomfortable.

CPAP (Continuous Positive Airway Pressure) is just as it sounds. Its a continuous stream of high pressured air that not only makes her want to take a breath, it helps her take deeper breaths. In a few days when she is used to the CPAP they will put her feeding tube down the other nostril so that her mouth is completely free. That will be good because she has her fingers in her mouth all the time and she has a habit of pulling out her feeding tube.

Her weight was 3lbs 7oz (only up 5 grams from yesterday), and there were no changes to her feeds. I did get to hear her cry a little today but her voice is pretty hoarse from the tube, so maybe tomorrow I will get a good cry out of her!

Group

Last night I met a new NICU mom at RMH. She delivered a 1lb 3oz baby boy at 23 weeks gestation. Her due date was mid-July. JULY! We talked for awhile last night and I encouraged her to come to group today. I know how far we've come, and how far we still have to go. What I didn't realize is that I am now one of those 'seasoned' NICU moms I've come to rely on for encouragement and wisdom. Out of the group of 8 moms who were at my very first group meeting, only two of us are left, and the other one is being discharged this weekend.  I'm happy for her, but will miss my friend. I find myself recalling the sorts of support I got those first few weeks. The mom showing me her son's PDA ligation scars surrounded by his adorable fat rolls. Another mom had dinner with me, while others gave me supportive smiles and waves in the hallways. Most of all those moms gave me much needed perspective. I only hope I can be as helpful to the moms who are at the start of their journey.

As for Penelope, she's doing fantastic. She's tolerating the vitamins better now that they are split up over a few feedings. Her weight was down to 3lbs 7oz today as a result of the diuretics as expected. Her feeds were increased to 26Q3 and we FINALLY got a vent rate change. This evening the nurse practitioner came in to see how she was tolerating the change and let me know that they are hoping lower the rate again tomorrow and start her course of steroids before EXTUBATION! I am so excited for extubation for a number of reasons, but the biggest thing I'm looking forward to is finally hearing my baby cry. I know she cries, I can see it on her face, but to hear her tiny little voice will be music to my ears! I can't wait!

IV Free

Big day today! Penelope's PICC line was removed this afternoon. Today she is 3lbs 10oz. There were no vent changes, but her feeds were increased to 25Q3. 30 is a full ounce, a far cry from the days of half a teaspoon every 8 hours! We also moved rooms within Bay 2. She was in a 'twin room' before. So it was basically two rooms divided by a curtain. So we had two walls and two curtains, and a roommate. This morning the nurse pointed out that the room across the hall was empty. So she told the charge nurse that since Penelope is on isolation she really ought to have walls and doors. Very sneaky of her! So this afternoon we moved. The new room is considerably larger and has natural light from the windows in the hall. All in all she had a great day!

Hail

I only saw Penelope for 10 minutes today because I was home with Lucy. It took me longer than expected to get back because of the crazy weather. Jeremy said there was golf ball sized hail at our house after I left. Anyway! When I got back I stopped in to see Penelope. She was sleeping peacefully and snoring around her breathing tube. She was started on another round of diuretics today. Her edema is caused by her liver not excreting bile properly because shes been on iv nutrition for so long. They are giving her some meds to help with it in addition to the diuretic. Now that she is not getting IV nutrition it will self correct, but they want to help her so she doesn't have to work so hard. They did not make any feeding or vent changes today. I did notice that her breathing is much better tonight. She is taking 20-30 breaths/min where she was taking 60-70 before. So shes breathing at much more relaxed rate which is great to see. She is also requiring less supplemental oxygen. So the PICC line is scheduled to come out tomorrow, and then they will start focusing on weaning the vent before extubation. Slow and steady wins the race.

Vitamins

Penelope is no longer getting any nutrition through her PICC line. They are running clear fluids through it to keep the line open while they make sure she is tolerating the 'full feeds'. It should be removed sometime in the next 24-48 hours. Instead of going up on volume for feeds, they increased the fortifier calories. She went from 24 to 27 calories per ounce (unfortified breast milk is about 20 calories per ounce). She was also started on a liquid multivitamin today, which she wasn't a fan of! She's her fathers daughter! She kept trying to spit it back up into the feeding tube and they kept giving it back. Her weight remained steady today which was expected from the diuretics she had a few days ago.  All in all she had a good day.

As for the contact isolation, I only have to put on the gown and gloves if I am going to touch her. I was glad to find that out because Lucy insisted on coming with me this morning. She sat quietly in the recliner and watched Mickey Mouse Clubhouse on my android tablet for the hour that we were there.  The nurses were amused that her answer to every question was 'no', even when the question was 'how old are you?'. When the doctor asked for a high five she said "no way!". I was thankful that none of her new and more colorful vocabulary came out! She chose to yell "MONKEY BUTT!" repeatedly while we were at Village Inn for lunch yesterday. She's turning out to be quiet the character.

Contact Isolation

It certainly was odd to be in Bay 2 this morning. We have nurse practitioners instead of residents on our team. Her feeds were increased to 21Q3, so she at full feeds. They will take out her PICC line tomorrow night. Her weight is 3lbs 4.3 oz, so I was pretty close on my guess. She was pretty annoyed with all the noise overnight, but seems to have adjusted to it this evening. I was pretty annoyed that our new doctor put her on contact isolation. For the last 3 weeks her breathing tube has been growing a benign bacteria, and none of the doctors have been concerned about it. Suddenly today's doctor makes a big deal out of the fact that she hasn't been on isolation. So now we have to wear gowns,and gloves just to enter her room...even though her new room is made of curtains. It will be this way until she is extubated. The Bay 1 team had planned on doing it early this week. I don't get the feeling he's on board with that. This is going to be a long rotation.

Jeremy has to work all weekend so my mom brought Lucy down today. My mom went home today. Our plan was for me to take Lucy home Sunday night, and I would come back early Monday morning so that I wouldn't miss rounds. Now that Penny is isolated Lucy can't go in. So I guess I will probably head home with Lucy tomorrow and come back Sunday when Jeremy gets off work.

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.