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.