Full Time Mommy=Exhaustion

Wow! I know everyone tries to tell you how exhausting parenthood can be, but you don't really know until you are fully emerged in it. The first week home with her has been wonderful and exhausting. I was fully aware of the late night/early morning feedings. I just wasn't all that prepared for the toll it took on me physically.

We did great with the nursing the first few days. She did best with it in the hospital. But after a few days, my milk supply started to decrease to what she eats, which is only 2-3 oz a feeding. Before, I could pump upwards of 5-6 oz, and the milk would free flow when she ate. She isn't as interested in nursing now that she has to work for it. In fact, she refuses to nurse. She has pulled a 180 and now prefers the bottle. So, instead of exclusively nursing her, she gets her breastmilk from a bottle. This means now I pump after her feedings. (I luckily have quite a supply of frozen milk from her time in the NICU. So if my milk disappears, she will have breastmilk for a month or two.) Time doesn't exist for me anymore. But do you know what? I wouldn't have it any other way.

Bath Time

Last night was Delilah's First Bath at home. She has had sponge baths in the NICU, but this is her first bath in her own tub. I think she really liked it. She groaned a little once, but she seemed quite content in her little tub. She wasn't all that happy to get out of the tub. I think she was a little chilled, but once she was wrapped up in her robe (lots of growing room for sure) she was happy again. I may be a little bias, but she is the cutest baby girl ever!

It's Official! She is home!!!!

Yesterday was D-Day! Discharge Day!!!! Delilah officially left the NICU at 5:41pm (which you can see in the photo). After 4 weeks of waiting we finally were able to bring her home. One of the most stressful car rides ever; especially in the middle of 280 rush hour. (For those unfamiliar with 280, rush hour lasts for more then an hour, more like 24 hours.)

We are so happy and relieved to have her home. We cannot thank all of you enough for your prayers. It is wonderful knowing there are so many people out there who love us. We can't wait to introduce her to everyone.

However, Delilah has a few more hurdles ahead of her. There has been a preliminary positive blood test for Prader-Willi Syndrome (PWS). We don't know a lot about it right now, but we have follow up appointments with the Geneticist to do more tests and to learn more about PWS. I have done very little research myself (don't want to over react to anything until I speak with the Geneticist). I know that it affects eating habits, causing childhood obesity, and she could possibly have future learning disabilities. I am very optimistic, though. She has already proved she is great at breast feeding, which most babies with PWS cannot achieve. And, according to Sally, the occupational therapist, her muscle tone is back to normal for her age. Please keep those prayers coming as we learn more. I will keep everyone posted, but results and news will be a few months coming. Until then, I will keep you all updated on her day to day life at home with Mommy and Daddy.

By the way...today she is 1 MONTH OLD. Unbelievable! Time really does fly with a new baby!

Time for a big update!!!

Delilah has done so well the last couple of days. Her feedings have been going great! So great, that they removed all her feeding tubes!!!!!! Isn't she gorgeous?!?! (A tad bit tired, we just finished nursing.)

Her feedings, at night, with the nurses have also been going well. So well, in fact, the doctor gave us an expected Discharge date of Thursday or Friday. All she needs to do is keep eating well and show she is gaining weight. She did gain last night, so if she gains again tonight she may be going home tomorrow. Send out your prayers and cross your fingers for tomorrow! My patience is wearing thin and with the possibility of tomorrow I don't think I could stand it to wait just one more day. With her turning 1 month on Friday, I would like to celebrate in style and not waiting around all day in the NICU to be discharged. (I have seen how long it takes...some families don't leave until 7pm. We all know how patient I can be!!!!) As soon as I know more I will let you all know.

Quick Update

Busy, busy, busy! I have been spending all day at the hospital so very little time for anything else. SO, for a quick update...she has been nursing exceptionally well. She has done above and beyond the past few nights. Tonight the nurses will begin feeding her from a bottle and if she does well the TP tube will be removed in a day or two. As soon as that happens, I will let everyone know. I am hoping to get her home by Friday, but I haven't heard any news to that affect from the docs. Keep your fingers crossed!!! More soon.

My Superstar!!

Delilah has been doing so well with her feedings. She took 20 mL by bottle last night in 30 min. Such a good job after her workout with Sally a few hours earlier.

However, it was this mornings feed that has me beaming!! We have been nursing the last two mornings and she has done really well, so this morning we decided to weigh her before and after nursing to see how much she ate. Are you ready for it?!? She ate 28 mL in 30 minutes! She is such a smart baby. She knows that nursing is the way to go. She doesn't want the stinkin bottle. I am such a proud mommy. I can't stop smiling! Hopefully we can keep up this progress and get her home soon. I will be going in around 3:00 to feed her from a bottle and then again tonight at 8:00 to nurse. I will keep all of you updated on her progress.

Sorry for no picture right now. I will try to add one this evening.

So Much News!

Sorry for the long stretch between posts. It has been really busy around here. Now that I have a brief break between visits with Delilah, it is time to share all the good news.

As you all know, all the tests have come back normal. WOOHOO!!! We finally heard from the Neurologist Monday. At this time they will not do anymore tests. He said he has seen several babies like her and basically her muscles are just a little slow to mature. They just need time and some therapy (which we can continue from home when she is discharged). So now all we have to do is get her eating without the TP Tube and we will be able to bring her home.

Sally, the occupational therapist, has been working with her, and we finally met with her and talked about her progress. Sally was so impressed with her progress she showed me some techniques to get her to suck and swallow so that I could start feeding her. That's right, I FINALLY got to feed my baby! Our first bottle feed together was yesterday morning. Delilah ate 10 mls in a hour. Not great, but pretty good for our first time together. Sally got 19 mls in her in a half hour later that afternoon. Sally has the magic touch, but she was impressed with our first feed together. (Delilah needs to take 40 mls in a half hour in order to go home, either by bottle, breast, or both.)

When I went in this morning to feed her, I got some even better news. I was able to nurse her for the first time. The doctor has decided that I will nurse her once a day and Sally will bottle feed her in the afternoon. As she continues to progress, we will up the feeds and hopefully remove that ugly TP Tube.

For her first time nursing she did extremely well. The lactation nurse was very impressed with her, gave her an A+. She never expected Delilah to do so well on her first time. I am such a proud mommy!!!! I can't wait to see what she does tonight!

Below are some pictures taken in the last few days. Daddy is so proud as are her Godparents Bradley and Jennifer. She is always surrounded with love!

GREAT NEWS!

The muscle biopsy results have come back and they read as follows: "The muscle biopsy results are normal for age." We are so happy and relieved! The doctors are still going to have the neurologist look at her again. She has made so much progress since his last visit with her. Hopefully we can get her eating from a bottle soon and then she may be able to come home soon! The occupational therapist, Sally, worked with her yesterday and raved about her progress. She still wants to continue to be the only one to work on her feedings, but she is going to start coming more often. In fact, she will be working with Delilah this evening.

In honor of this wonderful news, here are some photos from the last few days.

Our Little Burrito

Sorry I didn't post yesterday and earlier today. Busy, busy, busy. There was no news from the doctors. HOWEVER, tonight we went in and our lovely Nurse Lisa (my all time favorite) told us that Delilah has been upgraded to the crib. No more warmer! Technically tonight she was still in the warmer, but it was turned off and she was swaddled and had a hand knit yellow cap on her head. She will be put in a twin size crib tomorrow. Due to all her positioning accessories she can't be put in a regular bassinet. I was so excited. Not only does this mean that Nana can now hold her, but now I can put her in her clothes!!! I can't wait to put the first outfit on her!

Side note: John finally held Delilah since she had the feeding tube put in. He has been a little intimidated by it. He also changed her diaper today. Another first!

Happy 4th of July

Happy 4th of July from the Unfried's! Do you all love her patriotic bow?!? I was so happy to learn we could put bows in her hair that I immediately went home and made her a patriotic one for her first holiday. There will be more bows to come so stay tuned. Every girl needs her accessories!

For your viewing pleasure...

Please enjoy the following clips starring our precious Delilah. She was just too cute tonight during our visit!

Day 9 - No more IV

This afternoons visit was a good one. Delilah is no longer on the IV fluids. It is so nice to see her without the IV in her little body. We were pleasantly surprised to see a bow in her hair (more or less stuck on with lubrication gel...no joke!). NICU nurses are WONDERFUL!!! Isn't she just too cute for words!

After holding her for a little while (something I could do indefinitely), I put her back under the warmer to change her diaper, which turned into a major blowout. We had to completely change her bedding. Below is a picture of her when she was just set down. The girl loves to stretch!

Day 8

John and I spent the afternoon with our darling Delilah. She is doing so well. When we first got there I noticed and changed her very poopy diaper. Transition poop is so goopy and gross, but I couldn't have been happier to be changing it. According to the nurse, she will be off the IV fluids at 6:30 tonight when her food goes up to 12 ml an hour. She will keep the IV in until they have done 2 glucose tests and she can keep her levels up. Dr. Decarlo came by right as we were leaving and told us he has been noticing the improvements in her movements and sucking. (Of course we already knew this.) He told us the blood test checking the amino acids in her plasma came back normal. He also received very preliminary results from her muscle biopsy (he is only concerned with the final results from more in depth testing). According to these preliminary results she has small muscle cells, but nothing abnormal. We are hoping to get those final results by the middle of next week. Basically we still don't know much, but to us it sounds like she is just slower to develop. She probably just wants to be back in momma's belly.

Here is a picture I took of her at the end of our visit. She is just drifting back to sleep after having her diaper changed.

My Cheeks Hurt

John and I just returned from our nightly, Kangaroo Care, visit with our little angel and my cheeks hurt. I can't stop smiling. The wonderful Dr. Decarlo (only recently "wonderful") told us some great news. Apparently the Occupational Therapist, Sally, worked with Delilah this evening and after seeing how well she sucked on her finger she decided to try a BOTTLE. Delilah didn't drink very much (about 3ml), but it was a step in the right direction. Dr. Decarlo said Sally will continue to work with her until he is satisfied with her progress and then hopefully we can give it a try. I just couldn't believe it. I might be a little bias, but Delilah is the brightest baby ever! I can't wait to see what she does tomorrow!

Below are pictures I took of Delilah tonight. We are hoping it is the last time we see an IV in her head. They have had to move it between her feet, hands, and head in order to keep the swelling down. (The calcium in the fluids is hard on her little veins.) She should be off the IV tomorrow. All the cords and probes might look uncomfortable and scary, but she doesn't seem to mind at all. Actually, she always looks so comfortable when we go for our visits.

Over the Moon *UPDATED*

Just got back from our morning visit with Delilah and I am so happy. Our little angel is doing so good. The nurse told us that she checked her gag reflex this morning (which is done by sticking a finger down her throat...i know...doesn't sound like fun) and she showed signs of improvement. She actually started trying to push the finger out. She is such a smart little girl. The nurse also let us know that they are seeing improvement in her movements, especially her little arms. I am such a proud mommy! The doctor also came by to check on us and he let us know that she will probably be off the IV in the next day or two. SO EXCITING! If she keeps this up we should be able to try a bottle by this weekend. I will keep you all up to date. Thank you all for all the prayers and well wishes. Delilah is definitely one loved little girl!

UPDATE:

I forgot to mention one big thing we found out this morning. Delilah has gained about 2 ounces!!!!! Woohoo!!!!

More Food Please!

During last night's visit with Delilah, we learned that they are going to increase her food every three hours and decrease her IV fluids. This was so AWESOME to hear. It means she is properly digesting her food! She also had her first poopy diaper since starting on food. She is such a good girl. Our goal now is to work on her sucking, swallowing, and breathing routine so she can try a bottle. She is showing small signs of sucking and swallowing, but she still hasn't mastered the gag reflex. Hopefully with a little coaxing from Mommy and Daddy she will show those doctors she wants a bottle and not the ugly tube in her belly.

Below is a picture I took of her last night before we left. She was happily asleep the entire 2 hours I held her skin to skin (also know as Kangaroo Care, which is strongly recommended by the doctors and nurses), but the moment I put her back under the warmer her eyes shot wide open. She has the most beautiful eyes! It is so hard to leave her when she is awake, but poor John has returned to work and needed to get some sleep. Hopefully when we go in today her eyes will be wide open again.