Friday, August 29, 2008

All Together Again

Today they are officially one month old.

Jaileigh, Anthony, Jakob, Michael


Thank you Darcy for Jaileighs bow! The nurses keep showing her off to the other nurses. They love playing dress up with her.




Anthony was hamming it up.






Four of our night primaries- Jessica, Melissa, Tasha, and Amber. Jessica and Melissa were at their birth.

Bath Time

Michaels first real bath. He is off oxygen but the nurse put it on him for the bath because she didn't know how he would respond to the bath- He loved it! So we took it off.


Washing his hair.






In the tub. He loved it.





















He was upset when he had to get out and cried, then he pooped . . . . all over his warm blankets.

Thursday, August 28, 2008

Eye Exams

I forgot to mention that the babies had eye exams when they turned 4 weeks old. They don't have ROP (rentinophathy of prematurity). This is a retinal disorder that is common in preemies and can cause blindness.

Jakob is also off CPAP! The little fighter is doing well.

Michael is getting is first tub bath today. Mike and I are going to do it before his 5 o'clock feeding. I usually sponge bath the babies at night. This is a big step! We will take pictures.

Wednesday, August 27, 2008

Jaileigh Addison DeMaria

Jaileigh with her PICC still in.


No clothes. . . . .


and now she has clothes. Mike laughed at me and the nurses and said it was like we were playing house with our little doll. We got so excited to put clothes on her.










She looks so tiny in Mikes hands. She IS really tiny!!

The Progress Continues

Jakob in his big boy outfit.

Anthony having a good dream


Anthony, Jaileigh and Michael are all on nasal cannula's. Jakob will be off his CPAP tomorrow or Friday. He is a little slower because he is so little. He doesn't have the muscles to help him breath.

The pooping continues . . . . . I guess this is how our life will be from now on. Mike is getting really good at disappearing or bribing at diaper changes. He brings the nurses treats and they forgive him for running away. He says its hard to change the diapers now that the babies are in clothes. HE decided that they will run around in "wife beaters" (dago t's) and diapers.

Yes, its true. ALL babies are in clothes, including Jaileigh. Jaileigh went off the wallaby today. Her bili did not come down. Because she has had high bili levels for so long now the doctors are thinking that her levels may be breast milk induced. They have taken her off of breast milk for 24 hours and put her on formula. They will check her bili level again after that. Jaileigh and I are hoping that is not what the cause is. She hates formula, it gives her a belly ache.

The Physical Therapist (PT) came and checked the boys out. She said they all have excellent muscle tone and are great pacifier suckers. Jaileigh was already eating so she will check her later. We already know she has great muscle tone because she can get out of her snuggly. Today I laid her on her belly and she pushed her legs straight out and flipped herself on her side. She also stuffs her whole fist in her mouth and sucks on it when she is hungry.

They have been put on epogen shots and iron to help with red blood cell production. This will prevent any further blood transfusions, we hope. Anthony received a blood transfusion today.

All their feeding amounts and medications have been adjusted according to their weights. They are actually starting to make a TINY dent in the milk supply. We may get away without buying the deep freezer. The lactation specialist came and talked to me the other day and told me that the freezer in the NICU was full. Our freezer at home is also full. She said I needed to start pumping and dumping, asking neighbors to use their freezers, or invest in a deep freeze. I can just see Mike walking around the mountain, introducing himself, and asking if he could store breast milk in their freezer. When I moved into the new Ronald McDonald house it came with a fridge that is quickly filling. Soooooooo, we are glad the babies are eating more.

Tuesday, August 26, 2008

No More PICCS

All PICC lines were taken out yesterday. The diflucan and the caffeine that they were getting in their PICC lines have been changed to oral administration . They can be given through their feeding tubes now. The only lines the babies are hooked up to are their nasal cannula's, heart rate, respiration, and oxygen saturation, and their feeding tubes.

Jaileigh is still on her wallaby. Her bili level is low enough for her to be taken off the light but they are afraid of her rebounding because she has been known to do that. She is very feisty and determined. Yesterday she kept moving out of her snuggly (bed) and sprawling out. The nurse would come "tie" her down again and would wrap her really tightly and two minutes later she would be out. She finally just let her do her thing and she was so happy. She also has the loudest cry. I can hear her through her isolette all the way across the room. She has this really loud pitched squeal that I'm sure isn't going to get any quieter as she grows. It's crazy that she knows she is the only girl already.

All babies need to be on Reglan for reflux. Jakob and Jaileigh are the only ones on it as of last night. Anthony and Michael will be put on it today. I am learning to be bossy at the hospital. When you have 4 babies you learn quickly at what should be happening and what isn't happening.

Lately, every time I change a diaper I get pooped or peed on. I think they all think its funny. I went through 4 diapers in one diaper change with Jakob last night and 3 diapers with Jaileigh in the day. Both of them peed in my hand as I was wiping them. Anthony and Michael weren't nice either. Michael went through 3 outfits within an hour. All of them have become pooping and peeing machines.

Happy Birthday! 4 Weeks

Michael Huston

Burrito Baby- Michael and one of his primary nurses, Sharon. We have 14 primary nurses. It is wonderful!! Michael is also off CPAP and on nasal cannula only at room oxygen, 21%. What a good boy!


Michael in his clothes. He went off his wallaby yesterday (8/25).



Together again. Anthony and Jakob. Their isolettes were moved together Sunday night so they are now roommates. I was able to hold both of them last night. Their legs were all twisted together underneath the blanket. I think they were happy to feel each other again.




Michael trying to get his thumb in his mouth.


Michael in his Cubs beanie that is waaaayyyyy too big for him. Mike bought all of the babies one of these and a pacifier and clip that matches. I told him no more internet shopping!
Anthony was sucking on his fingers. His primary nurse ran to take a picture and he pulled them out.


Jaileigh Addison. She is still clothesless. It is a little ironic that the baby with the cutest clothes options is taking the longest to wear them. I think she enjoys tanning on her wallaby. You can see in this picture that her PICC line is gone! All babies had them removed yesterday. It was a nice early birthday present for all!





Proud Daddy taking a moment to catch up on Sports Illustrated while we were on dinner break.



Monday, August 25, 2008

Clothes Pictures and Feedings

All babies are on bolus feedings. They get fed every 3 hours with the appropriate amount of breast milk for their weight. They are all tolerating it well, no residuals. They are getting them ready to start nippling. They are dipping their pacifiers in breast milk and letting them suck on them when they get their bolus feeds. This helps them associate the breast milk taste with the warm full filling in their tummies.

Jakob was put on Reglan for reflux. The rest of the babies aren't on it yet. They are all off their TPN and lipids. As soon as their Diflucan is done their PICC lines will be removed. Diflucan is a 6 week series so they still have 2 more weeks. I found out more as to why this was prescribed. It is to help keep yeast away from the PICC lines and to prevent NEC.


Here are the pictures of Jakob and Anthony in their clothes. The clothes they are in are preemie clothes and you can see how big they are. I ordered some micro-preemie (1-3 pounds) clothes online that fit a lot better. I took pictures last night but lost my camera. I am hoping it is in the NICU still.

Jakob Thomas sleeping . . . .


"Oh, hi mom!"




Anthony having a happy moment with dad.


Anthony taking a nap. His nose really isn't that big, it's just stretched from the cannula.





Saturday, August 23, 2008

3 three pounders and 1 almost there

I haven't had Internet access for awhile because I moved. Ronald McDonald House moved me to a real house. Hooray! They RM house has 21 bedrooms (yes with locks on the doors) with bathrooms, one great big nice kitchen, living room, dining room, TV room, play room, laundry room, and a game room. All 21 families share all this. It is a very nice house! Because the babies will be coming home at separate times and I have 4 of them, the people at Ronald McDonald allowed us to move into one of their 3 single houses. The house is a duplex and RM owns the whole thing. I have my own kitchen, bathroom, living room/dining room. It will be very nice once the babies come home. Mike isn't able to stay with me because of the dogs. Very frustrating for both of us! Sometimes our friend (Karen) stays with the dogs and Mike is able to stay with me. Thank you Karen!!!!!

I will figure out the Internet situation so that I can start posting regularly again and with pictures.
Now for the important stuff!

Anthony 1360 g which is 3 lbs even
Michael 1540 g which is 3 lbs 6 ozs
Jaileigh is also 1360 g and 3 lbs even
and Jakob is 1245 g this is 2 grams less than 2 lbs 12 ozs

Jakob and Jaileigh are at 7 cc/hr feedings. They have been taken off their lipids and TPN. They no longer need the extra nutrition because they are eating normal feeds. They will be able to have their PICC lines removed after they finish their Fluconazole (diflucan). This is a drug they have been receiving since birth to treat for any possible fungals they would get. Anthony and Michael are both at 5 cc/hr and will be caught up soon.

The doctor is keeping them at continuous feeds for awhile longer to keep away any possibility of getting NEC (necrotizing enterocolitis). NEC usually occurs in babies that weigh less than 1500 grams. The tissue in the digestive tract dies.

Here are SOME of the things are babies go through on a regular basis:

* TPN lab draws on Wednesdays
* The RT (respiratory therapists) were doing blood gas labs every day, then every other and now on Wednesdays and Saturdays.

* Bili levels on the gas lab days.
* Glucose tests- every night.
* Vitamin A shots Monday, Wednesday, and Friday
* Caffeine- given through their PICC every night
* Difluconazole- every 48 hours for 2 weeks and then every 24 hours
* Every 6 hours they get bactriban on their noses to prevent break down from the nasal cannula's
* Glycerine suppository every 24 hours if they have not stooled on their own

They have a feeding tube down their throat. This gets changed every morning. Sometimes the babies will pull it out and they will have to replace it a second time. They are being monitored for oxygen saturation, heart rate, and respiration rate constantly. Blood pressure is taken once a day during day shift.


A positive they get to look forward to is kagarooing. What a life they have!

I believe that Heavenly Father blesses them that they will not remember any of the bad things that have happened to them. They will only remember the good.

Thursday, August 21, 2008

3 weeks 2 days Old

All babies are tolerating the milk fortifier so far. They are continuing to gain weight and are looking better.

Jakob and Anthony are off of all the bili lights and can now wear clothes. So far they have managed to pee on every outfit that I put on them. They love not wearing the goggles. It's so much fun watching them look around when they are awake. Jaileigh and Michael are only on the wallaby and hopefully will be going off it soon.

They are all stooling regularly so I think that will help their bili levels to go down. Anthony had his first "real poop" yesterday. He is the first baby to do that. They rest still have meconium poop. Meconium is the black/green tar poop that newborns have. My 3 weekers still have it.

Tonight I will post pictures of Anthony and Jakob in their clothes.

Wednesday, August 20, 2008

Anthony Joseph DeMaria

I held Anthony last night because he didn't get held during the day. He is a night owl like his mom. He was wide awake and so happy. While I was holding him he wrapped his legs around my waist like a little frog. He got the hiccups for a minute and it made him toot. He is learning his boy skills early.


Mom I just want to sleep. Leave me alone!







If you look closely you can see him holding on to his nasal canula tubing. All of the babies are learning how to pull things off. The boys will stick their little fingers under their noses and pull the canulas out of their noses. Jaileigh pulls her goggles off constantly. She will pull them down under her chin and then she grins.






He LOVES his pacifier!







Sorry about the upside down pictures. I don't know why they are like that because that isn't how I took them and they aren't like that on the computer.

Tuesday, August 19, 2008

Feeding Protocol and Weights

Jaileigh and Jakob are on feedings of 1.5 cc/hr and at 4:00 am they will go up to 2.0 cc/hr. At this point milk fortifier will be added to the breast milk. They fortifier gives them more protein and calories. Every 12 hours they will increase by .5 cc/hr until they reach 4.0 cc/hr at that point they will change their feedings to bolus feedings. They will receive their feedings every three hours in bolus form. Instead of increasing every 12 hours they will increase by 1 ml every 6 hours. This will continue until they reach 20 ml or what the protocol is for their weight.

Michael and Anthony are about 48 hours behind Jakob and Jaileigh. They are still at 0.8 cc/hr. On August 20 they will increase to 1.0 cc/hr and then they will be increased every 12 hours and continue the above protocol.

So far all of the babies have been tolerating their feedings. The nurses check for residual in their stomachs every 4 hours and they all have little to none. The tricky part they explained to me is when they start adding the milk fortifier. They said some babies have a hard time digesting that extra protein. So they said they will be praying for the babies to digest it (we will be praying as well). I thought that was cute of the nurses to say.

Mike and I get to kangaroo the babies every day. That is such a neat experience and so beneficial for the babies. We are very lucky to have such supportive primary nurses. I was talking to another mom here at the RM House and she has not been able to hold her baby yet. Her baby is a lot older than ours too. I really don’t know her situation but I feel really bad for her. It is such a bonding experience to hold your baby that closely.

Here are the new weights.

Anthony- 1255 g 2 lb 12 oz
Michael- 1446 g 3 lb 3 oz
Jaileigh- 1231 g 2 lb 11 oz
Jakob- 1145 g 2 lb 8 ½ oz

Monday, August 18, 2008

Michael Huston DeMaria

Our chunky Monkey!

Working on those abs- a washboard tummy!


OOHHHH I am so tired now.



Hi mom and dad!



Michael always sleeps with his arms up. The nurses try to put them down and swaddle him and he always fights out of it. This must have been how he was squished inside so it is comfortable to him.

BIG yawn.