Life in the NICU

I am so behind on blogging it makes me sick! It’s safe to say that I was on mucho drugs the first two weeks of this babies life and I think I missed a lot of things. Sadly I didn’t keep a NICU journal until day 10, and that’s only because day 10 was the worst day in there. I started writing about day one and two, and then it skips to day 10. I’ll fill in some blanks in there if I can remember them. Luckily I took pictures every time we went so I can kind of gauge things from there. Here we go. (this is for my journaling purposes, you would have probably been much more entertained by all of this if I was blogging in real time. Alas… drugs.)
After the jump there are no less than 100 pictures



May 20 Day 0 (the day she was born)

Everything went well in delivery. She weighed in at 3lbs 14oz and 18.5in. long. Right away she was taken to the NICU. The steroids worked pretty well, but they still had to give her some curfacton. This helps the lungs from sticking together and opens up the air pockets. We were hoping that with the steroids she wouldn’t need it, but she was still really early. She had and in her hand and she ended up pulling it out. After trying 6 times to get it back in they ended up having to put a central line into her belly button. This was good and bad. Good because they generally last for 5-7 days opposed to and IV that they have to change every 2-3 days. Bad because they don’t want ANYTHING to happen to it. It goes right into a main artery and that’s just scary. We were able to touch her through the  incubator, but her frist few hours of life her breathing would go waaaay down when we would. The best thing for her was to just rest and try to get use to life on the outside.

May 21 Day 1

This morning will be burned into my brain forever. Every morning around 11 the Dr. does his rounds. She was on the vapotherm machine that assist’s with breathing. They use it instead of a cpap machine. Her oxygen was (maybe?) at room air (21) and her flow was at 8. She had been doing good with that so they decided it was time to start weaning her off of it! When the Dr came around he dropped her flow way down, way fast, I think to around 4 and almost instantly her alarms started going off like crazy. No one seemed worried except for Jim and I. I don’t really remember what all was happening but they said something along the lines of her needing to fight through and that’s how she would get stronger and eventually come off of it. When Jim and I got back to the room we just sat and talked and shortly after her Dr walked in. He then explained things a little more and said he could tell we were pretty shaken by the whole situation and wanted to make sure we were ok. As he was leaving the phone started ringing and it was our nurse saying that she had turned her flow back up and she was comfortable and stable and we didn’t have anything to worry about. I’m so glad that is over. They had me pump every 3 hours and whatever I would get I would send over in a syringe and they would use it as oral care. This was also the first time I got to hold her. It was amazing. after her 8’oclock care they put me in a rocking chair, gave me a pillow, and set her so gently in my arms. I cried. A lot. (The first monitor picture is the Vapotherm machine, Flow and oxygen level. The next is heart rate, pulse ox, and breathing, the last is just her IV with lipids and TPN)

May 22 Day 2

This was the first time Jim got to hold her. They didn’t let us hold her during the day, but he got to hold her for about 30-60 minutes that night. At some point they started giving her the breast milk through her feeding tube and she took it like a champ. They would check her stomach by sucking up anything that was in it before every feed and hers always came up empty meaning she was digesting it and using it! It always grossed me out, but it was really good to know! This is probably also the day they started the jaundice light. (You can see the central line going into her belly button, and her taking breast milk in her feeding tube)

May 23 Day 3

We had a great nurse this day, Diana (she was actually a huge reason we got to leave a day early). She let me do skin to skin TWICE with her. She called me at about 4 and all she said was “this baby needs her momma” and I nearly ran across the hall. (Ok so not even close. It took me about 10 minutes to get there, its REALLY hard to get out of bed when you’ve just had surgery and have gas bubbles in your shoulders. It makes moving really hard! plus going to the bathroom and such, ya it took awhile to get there but in my mind I ran)This was also the day we got discharged. We didn’t leave the hospital until about 7:00pm, but it was so hard. When we got home it only took about 20 minutes until I had a total break down. Luckily I had to take some milk back down there so I got to see her before I went to sleep in my own bed for the first time in over 2 weeks. (That is the diaper she was in for a few days, it’s smaller than a preemie! She was kind of between the two sizes)

May 24 Day 4

No feeding tube! I think this is the day she pulled it out so they decided to see how long she could take a bottle without getting worn out, and it went really well! She went all day with no feeding tube! Grandma came to the late feed and got to hold her for the first time!

May 25 Day 5

No more Vapotherm! Huge day! Once you get to flow of 3 and oxygen of 21 (room air) they will just take you off! When we got there she didn’t have her feeding tube either! They put it in later that day when I wasn’t there luckily. Grandpa also got to hold her for the first time! It was memorial day so we went to Paige’s for a BBQ and for a NICU break. (That’s Dr. Muhandra and one of our favorite nurses, Margret.)

May 26 Day 6

Her Central line expired so they had to give her an IV in her arm. It looked so horrible but she needed it!

May 27 Day 7

They said they would order one more bag of lipids and when it was done they would take her IV out, so that would be tomorrow. When they were doing her care at 2 they noticed that her IV was leaking and just really gross. I asked if they could just take it out instead of replace it and they said yes! When we came back for the 8:00 feed she had it out and was wearing a onesie! I put the most adorable outfit and we just hung out all night in aw of just having one tube in our baby.

May 28 Day 8

When we got to the NICU for the 11 feed they were about to wash her hair! She got her hair washed and loved every second of it. She just completely relaxed and got a cute yellow bow put in.

May 29 Day 9

HUGE day! She graduated to an open air crib!!
This is when I started keeping an actual day to day diary.

May 30 Day 10

Her NICU neighbor Danica went home this day. It was really hard for me because she was just a day older, but born at 34 weeks. I cried. A Lot. Breastfed ok for two feedings but ended up having to supplement by bottle 10ml and 20ml.
At night she breastfed like a champ for 15 minutes straight and fell asleep. Supplemented with 20ml but her oxygen level was dropping to the 70's constantly. Stopped the supplement tube feed and gave her oxygen, room air with flow. They then took away all breast and bottle feeds for the night. The oxygen prongs don't come in preemie size, so she was forced to use new born and they wanted to put it in her nose with her feeding tube. I said no, repeatedly, and her nurse insisted that it would work and finally decided I was right. Moved her tube to her mouth and gave her the new born size prong. It was horrible. She was so hungry but they gave her the tube feed over the course of an hour so she was unhappy for awhile.

May 31 Day 11
Huge miscommunication between Drs and nurses. They are having to bump her oxygen level up to 23 after she feeds because she's in such a deep sleep. The flow is on .25. She took tube feeds all night, and the 8 am and 11 am was bottle. After talking to the Dr they said she should be doing every other feed by Tube, not every feed. At the 2pm feed is when everyone found out that I was told no more boob or bottle and they let me feed the next 3 by boob and supplement through the tube after when she had fallen asleep. She started spitting up more at that point.

June 1 Day 12

So they decided to not supplement her feeds after I breast feed her because she was spitting up so much. When I got there I decided I was going to lay down the law and say that we would no longer be feeding her a bottle after I nurse her to make sure she was full. Luckily they had also had that same thought so we were all agreed. They also decided to pull her feeding tube and only give her breast or bottle, but the bottles will still be fortified. She gained another 45 grams and she's up an average of 20 for the week so that's good. The bumped up her oxygen level, but slowed the pressure. She's been maintaining her breathing pretty well, except when she eats or is regurgitating something. She protecting her air ways and holding her breath so that it doesn't go down the wrong tube. But the feeding tube is out, and I don't think there are plans to put it back in until she relapses again. Angela also said that I should go off dairy and see if that helps with the spitting up as well because of Nixon

June 2 Day 13
Not much changed. She's up 45 grams to 4lbs 2oz! She's still having periodic breathing but I feel like dialing back the amount has really helped. She's down to .3 on flow and 25 for oxygen. My milk supply has gone down, I'm a lot softer but still getting about 3oz per side. Her heart murmur is so sporadic still, but nothing to be too concerned about. She will have another EKG at 35 weeks.

June 3 Day 14

Up to 4lbs 3oz. Had a desat in the night and her oxygen was bumped up to 30, but they brought her back down to 27 and she seems ok with that. He her blood pricked for s thyroid test and everything came back normal. She will start to receive iron and calcium supplements. They did hear the heart murmur when they checked, but the nurse didn't hear it this morning.

June 4 Day 15

Up to 4lbs 4oz! They upped her oxygen to the flow to a liter, and oxygen at 30. They said they would keep her between 25-30 and see how she does and will hopefully be done with it in a week. She had the EKG and Echo and both came back normal. She also moved from bed 1 to bed 6 because we gained some twins!

June 5 Day 16

She got a bath today! Weighs 4lbs 5oz. Still has her cord so it was just a much needed sponge bath. They put in an order to have her supplement changed to the over the counter stuff. Still at a liter and oxygen of 27.

June 6 Day 17

Up 5 grams. Still needed the oxygen so they are putting in an order to start her on hydrocortisone that will take any inflammation out of her lungs. It will also take care of any fluid in her lungs and we will hopefully see a change within 24 hours. That usually lasts 6 days because they can't get them off of it cold turkey.

June 7 Day 18

Up 20 grams to 4lbs and 6oz. She seems to be doing better already on the hydrocortisone. She hasn't dipped as far, or nearly as long. She also hasn't been arching back like she was to look for air.

June 8 Day 19

Up 30grams, to 4lbs 8oz. At night was given the order to aggressively wean her off of oxygen. She was dropped to room air (21) and will be weaned to half liter in an hour or so.

June 9 Day 20

4lbs 9oz. After a night and morning or weaning from room air she seems to be doing good. At 11 she was sitting comfortably at .4 and held it all through her feeding. The Dr said she looks so much better even from yesterday. Today is her last dose of hydrocortisone at 12 hours, and Friday will be the last at 24 hours.

June 10 Day 21

Doing so good! The oxygen came off last night at 11pm and she has been totally fine ever since. Talk of sending her home on Sunday instead of Monday, but will be revisited on Saturday. Up 10 grams.

June 11 Day 22
We were moved to the front of the nursery to the “well baby” side because the “sick babies” were aplenty. Our Bed #6 was empty when I got there but they had to keep the babies with the same nurses together! So Raquel, Landon, Rowe and I had a party in the front for a few days. She had a desat in the night. She dropped to 66 for about 20 seconds but she self revived and was totally fine. The Dr.s aren't happy about it. She won't be going home Sunday and depending on her if she does it again they may send us home on an apnea monitor. Weighed 4lbs 10oz

June 12 Day 23

Our neighbor Landon went home today and there were happy tears shed for him. She had a head ultrasound this morning and got her hair washed after and looked like a fluffy duck. We moved from the front of the nursery to the back again to our same spot, #6. Missed rounds this morning but Dr. Mehandra wasn't here anyway.

June 13 Day 24
I took initiative and brought in our car seat. She would have to pass the test to be able to go home anyway.  We also decided that because our baby would be coming home soon that we would go on a date! We went to Ghrimaldis and went and saw Jurassic World!

June 14 Day 25
We went home