Then and Now

I was browsing through some photos and came across one of the first pictures taken of Hailey when she was taken to the NICU. It's amazing how far she has come since then. And if you really look at the picture, you will notice there are no oxygen tubes anywhere. We got very lucky that her lungs were mature at 33 weeks. Even the Neonatologist was impressed on how well she was doing.

Anyway, here is the first picture taken of Hailey, followed by the most recent picture taken of Hailey. Amazing what changes in 14 months!

NICU Donations Idea

Hailey's 1st birthday party is going to be huge. We are so lucky to have so many friends & family to help celebrate Hailey's adorable life. Thanks to the inspiration of Tricia, whose son was born at 26 weeks, I have decided to take this opportunity to collect items to donate in Hailey's name to the NICU she spent the first 33 days of her life in.

Although Hailey did not have any life threatening complications, those nurses and doctors were such a blessing and truly put their hearts into the care for Hailey. They did save her life in a way I could never repay them for. My thoughts were to help them continue with the fight to save all other preemies lives who enter that NICU everyday. Any help we could provide can help make a difference.

I have already contacted the NICU who directed me to contact the director to see what types of donations they need the most. Whether it be blankets, clothing, diapers, even monetary donations. We owe so much to them that this is the least I can do!

I will keep you updated! =)

Hailey is home!

Hailey came home last night! We are so excited. She is on the apnea monitor and so far no alarms! I have to admit it does give us a little piece of mind!! She slept great last night. she never woke us up but we did wake her for feeding time! She seems very comfortable at home! She has become just a great eater! Such a relief since eating is what kept her in the NICU for so long. She hasn't taken to breast feeding just yet. She is used to the bottle nipple and doesn't see my breast as a food source. I am going to keep at it but at least she is eating my breast milk from the bottle right now!

The neonatalogist (her doctor at the NICU) recommended that we limit visitors (actually he said no visitors but to limit them since parents usually do not listen) but to definitely not have school age visitors at this time. School just started and there are a lot of germs going around plus RSV season starts in October. We were bummed about this since Hailey has so many cousins waiting to meet her but if she were to come down with RSV, it can be deadly and she would end up in the hospital again. We do not want to risk this at all. Also anyone who is sick, getting over being sick or thinks they are getting sick should wait until they are 100% before visiting! I am not sure how long the school age kids restriction needs to be. Hailey has her first pediatrician appointment next week so we will talk to her then. I think I read of a RSV vaccine. We will see! I'll keep you all posted!

Hailey is coming home!! .....With some conditions!

Hailey is coming home! The sleep study (which is called a pneumogram I found out not necogram...hey I was close!) machine is not in still. The hospital informed our insurance since this is the only reason she hasn't been released yet. They decided that she is to be sent home on an apnea monitor until the pneumogram is administered. Once the pneumogram machine is in she is to go back for the test.

The apnea monitor only alarms when she stops breathing and is different from the monitors she's on now. If she passes the pneumogram then she does not have to remain on the monitor and can go home as usual. If she fails then she will have to continue to be on the apnea monitor at home until her pediatrician decides she's ready to be off of it. So cross your fingers she passes! The nurses seem to think she will.

This is so great that she gets to come home and wait instead of waiting at the hospital! We are thrilled. If the apnea monitor is delivered tonight then we are to stay overnight at the hospital with her in a room to learn how to use it and we will go home in the morning, If the apnea monitor comes tomorrow morning then we are to stay at the hospital until about 4pm then we go home.

Hailey is 4 weeks old!

She is now eating all her feeds from a bottle and the feeding tube has been removed! The doctors have a concern about her blood oxygen saturation and heart rate going down randomly (this is called a d-sat & brady) while she eats however. This happens at least once a feeding. She is undergoing a sleep study (there is a technical term, neco-gram or something like that) where she is on special monitors for 12 hours and determine a possible cause. We are currently waiting for this to begin. A special team comes in and they are backed up but Hailey is #2 on the list.

She now weighs 6lb 12oz! She is 1 pound above her birth weight! She went through the car seat test and passed! This is where they put her in a car seat for 90 minutes and make sure her vitals are good.

She's very close to coming home. We are just waiting for the green light from the doctors. Hopefully they are able to get to the bottom of her d-sats and bradys during feeding time. We are unsure if this is just something she will grow out of but we do know that it is common for preemies to have these issues.

When Hailey comes home.....

We are still unsure of exactly when this will be but we really feel she is getting close! When this day comes, Randy and I are asking that visitors still be kept at a minimum. Please do not come over unannounced. We will need to coordinate so there are not too many people here at once. Hailey will need some time to adjust to her new environment and we want to make this transition as easy as possible for her (and us too)!

Her pediatrician will be seeing her within a week of her release and its very possible we will be given strict rules regarding visitors, outings, etc. We plan on strictly following doctor's orders. Being a preemie puts her at greater risk of catching viruses including RSV. RSV season is approaching and we would hate for her to end up back in the hospital for catching something. While we are not usually the type to freak out about germs and such, if the doctor requires or recommends limited holding or washing hands before touching or limited touching then we will follow instructions. It's hard to view her as a preemie since she is such a healthy size and never had respiratory problems but we have to remember that she is a preemie.

Thank you for all your love and support and concern over Hailey's progress. We appreciate everything everyone has done for us! Hopefully we will be announcing her arrival home very soon!

Hailey is almost 4 weeks old!

Hailey has been doing very good! She is now eating her bottles completely, and her feedings are 3 out of 4. She is also now 6lbs 10.4oz!

They discovered she is a bit anemic and is on Epogen shots to help her boost the making of red blood cells. Hopefully these shots do the trick otherwise she may have to have a blood transfusion. Although the doctors are optimistic that it wont have to go that far! Her diaper rash is gone but she tends to get a little red from time to time. Also her eye is getting so much better!

She is doing great! She's so alert and makes the cutest faces & expressions!

Hailey is doing great!

Hailey is a little over 3 weeks old now. She also weighs 6lb 5.8oz! Yesterday she had a great bottle feed day. She actually took the whole 53cc for me twice!! I am hoping she continues on this upward trend!

Randy and I started doing a few days ago what the NICU calls Kangaroo Care. This is skin to skin contact where she is in her diapers and we are shirtless and she lays on our chest. It is supposed to be stress relieving for parents and baby. And it also helps baby regulate her temperature, increase weight gain, shorten hospital stays, longer periods of sleep, decrease their crying, have longer periods of alertness, and earlier hospital discharge.

New Updates!

Hailey has been improving over the past 2 days. She is beginning to take her feedings well. Her cc was increased to 53cc. She is taking the entire bottle for the nurses and took 50cc from Randy last night. She is now 6lbs 4.9oz! And her rash is basically gone!

We noticed that she had a goopy eye last week. They ran some tests and it came back that she has a mild infection. She is given antibiotic ointment on her eyes for the next few days. Because of this, visitors are being limited. She gets a lot of visitors and a concern has been expressed about that. Her eye seems to be getting better already but for now visitors will be kept at a minimum. I have a feeling she will not be there much longer. Visiting her at home is much better than visiting her there anyway!!

Some pictures!

Little Angel


Sleeping like Daddy
Taylor and me
Grannie
Uncle Jeff, we share a birthday!
Great Grandma Betty

Waiting for that moment

We are waiting for that moment. That moment the doctors and nurses keep talking about. The moment when Hailey suddenly decides she's ready to eat completely from a bottle. That overnight improvement. I thought that moment had come but then she took a giant step back. "It's normal for preemies" they tell me. That doesn't give me much comfort when I thought she was so close I could taste it.

If only you can reason with an infant, we could explain it to her. She pulls out her feeding tube all the time. It's a running joke with the nurses. She's actually known for it and each new nurse is warned. I joke with the nurses that when she is smiling in her sleep she is plotting her next tube removal. If only she knew, eat from the bottle and it will be removed forever.

That moment will come when she's ready. When she's ready...... that's when she will come home. The doctors can't predict it and neither can the nurses. I can't even predict it. I have no idea when her moment will come. She can be so unpredictable and inconsistent that it's hard to tell. I guess she inherited both of Randy and my stubbornness.

Although, I think back to my pregnancy and I realized something. Whenever the day came for the new week to start (I called this ticker change day), I would suddenly see something new. As soon as I would hit another week pregnant, she would change, improve, move along to the next thing she's suppose to according to the books. So if this eating coordination doesn't usually develop until the 37th week of gestation then maybe she has another week. I remember saying earlier I predicted her coming the 15 or 17th of September. Even though I thought I meant the day she is born, maybe what I really meant (without realizing it) is that is when she'll come home. I don't know, just a random thought.

Staying positive is important right now and staying optimistic. I am trying my best for it to show through and not be overcome by something else. I apologize if this blog post seems like a downer, it's not meant to be. I am just using this blog as an outlet for random thoughts as well as Hailey updates and so forth. Sometimes writing everything out is therapeutic in itself.

Okay, random thoughts post is now over! =)

Hailey is getting back on track

She is coming back from her bad day on Saturday. The doctors backed off her feedings a bit to 2 out of 3 bottle feedings. She randomly takes the whole bottle otherwise she's doing anywhere from 35-42cc out of 50cc. She also weighs 6lb 2ozs now. I hoping this is her way of saying she's picking off up where she left off!

A great day followed by a not so great day.

I hesitated posting about this on here. But I figured if I am going to post about her good days, I figured I should post about her bad days.

Here I am just glowing about her taking her bottle feeds so well and passing her hearing test. It has rained on my parade!

She has been doing awesome, the day before, taking all of her feeds (3 out of 4) by bottle with flying colors. Yesterday, she was very sleepy. She only took 35 out of 50cc in the morning, couldn't even get her to wake up for the next one and when I was there for the third when she only took 25cc before she conked out. The doctor comes by and decides to step back to 2 out of 3. Great.

I went back for the night feed. She was extremely fussy. more fussy then normal when she's hungry. Her heart rate was so high. The nurse was feeding another baby and hadn't gotten her milk out yet so I had to wait. She gets increasingly upset. I give her the pacifier so help her sooth and get her heart rate down. She is still upset and pulls out her feeding tube. When the nurse is finally done she puts the tube back in (or tries to) and Hailey screams so bad I was afraid she was going to stop breathing. I have never heard her cry that much.

When she finally calms down and starts eating I notice she is sucking really hard. I try to get her to pace herself. She choked on it several times. Usually she recovers on her own with no problem within a few seconds. This time she turned blue and the nurse took her from me and did something I couldn't see to get her out of it. She wanted me to try again but she choked again and like before she didn't recover from it as quickly as normal. She had taken 30cc so we stopped.

I am completely freaked out because she was not acting like her usual self at all. It's a new nurse so she has no idea what she has been capable of in the past. I tell her this is not normal and I don't know what is wrong.

I end up coming back for the next feeding because it just isn't sitting right with me. My mom met me there too. I watch the nurse do it this time because she really wanted to do it herself. When I got there Hailey was definitely different and seemed back to her old self again. She wasn't upset or fussy. She was her happy cooing self. She ate a lot better and took 42cc. The nurse stopped the first time she choked a bit which she was able to recover from quickly and tube fed the other 8cc.

I am hoping today is a much better day. Maybe going to 3 out of 4 feedings was too much too fast and stepping back will set her up for success.

On a better note, she is now 6lbs!

Great Update!!

Hailey had some big improvements today! She took an entire bottle twice! She is averaging 48-50cc out of 50cc each feeding today! The OT (Occupational Therapist) advanced her feedings again to 2 out of 3. 2 bottle feedings and a tube feed and so on! She is 5lb 13.4oz! Above her birth weight now! Hopefully she will take to breastfeeding after she masters the bottle. But even if she doesn't it's okay as long as she is able to come home and feed from bottle I will be happy! Hopefully this trend keeps up so she can finally come home!!

More Pictures

The nurses put these on my hands because I like to pull out my feeding tube.
Autum came to visit me today
And Chris did too!!

Quick Night Update!!

I found out from the night nurse that they are going to work her feedings in a specific pattern. She will bottle feed then 2 tube feeds then a bottle feed, etc. The day nurse noticed she was fussy for a bottle at 5:30pm feeding so she bottle fed her and she took 40cc! The nurse still wanted me to feed her the bottle at 8:30 and she took 36cc! She is definitely making major improvements. I am hoping this trend keeps up! Makes me feel like there's a light at the end of this tunnel and is coming close.

She lost a gram today which isn't much at all especially with all the bottle feedings she has done which can cause her to burn calories. They upped her feedings to 50cc so she should gain weight tomorrow!

Hailey is improving!!

Is that bottle for ME?
Tummy is full....it's nap time!

Hailey is really improving on her feedings. She took 43 of 48cc with the OT this morning. The OT decided to advance her to 2 feedings per shift. When I was there for the very next feeding they had me try with her. She only took 21cc then fell dead asleep. Definitely not ready for 2 feedings in a row yet! At least the OT decided to up her bottle feedings! This makes mommy happy!!

She is also back up to her birth weight! 5lb 12oz! I am hoping she continues to gain weight. Even if her feedings are great if she doesn't continue to gain weight they will not send her home!

Send lots of positive thoughts her way! She's doing great!

It's Bathtime!

For the record, I am not happy about this!
Time to wash the hair!
I am still not happy!!
I pulled out my feeding tube!
Mommy decided to take advantage and take some pictures of me without the tube!
All done! Don't I look pretty??

New Updates! 2 weeks old

Hailey is doing good. Her feedings seem to be fluctuating around the same, 25-35 cc. She has to be able to fed completely from a bottle without tube feeding before going home. Right now she's at 48cc every 3 hours. She's only bottle fed once a shift.

Sounds easy right? Not so much. For a full term or "well" baby this comes very naturally and easily. They have had time to cook completely in the womb and come into this world ready. This is not the case for preemies. This ability usually doesn't develop until about 36-37 weeks gestation. Hailey may be 2 weeks old but they look at her as 35 weeks gestation. She's finishing her "cooking" in the NICU rather than the womb. She needs to be taught to feed and needs help developing the suck, swallow, breath coordination. The doctors say she's progressing normally for her age (35 weeks). This is great but also means she still may have another week or 2 (when she's 37 weeks). They also tell me that sometimes, over night, they just suddenly pick it up well and then are released. Hailey has made a big jump in the past 2 days. Averaging 4-15cc to a sudden 24-35cc. She could stay there for awhile. We need her to do another jump! But it will only happen when she's ready. She's a preemie, not a full term "well" baby. We all have to remember that. It's a completely different ball game for her.

But she's a strong little girl with a personality already!! She'll be home before we know it!

Quick Night Update!

Just got back from the nightly visit. Hailey was weighted again and she is now at 5lb 10oz! Almost back up to her birth weight! And she took 35cc from the bottle. She fussed a lot when I got there, I could tell she was hungry. She is so cute and alert and makes the cutest little faces. The nurses always comment how cute she is! I have to agree!! =)