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.