Happy Halloween!

This is my favorite holiday hands down. It starts on the 1st day of October. All month I watch scary movies. Of course I have seen them all 100 + times, but I still can't get enough. All the movies range from old classics like The Exorcist to the down right tacky Zombie Strippers. I love October and Halloween. My original hopes were to have the girls on Halloween and now they will be almost 2 months old. I dressed Olivia up today in her first Halloween outfit and have Lilah's in my diaper bag. She won't get to wear it tonight while I am there because, but Al is coming up with me again tomorrow and we are dressing the girls up and taking pictures of them together. I can't wait. Did I mention how much I love Halloween?

Lilah Update:

She is now taking 2 bottles a day! I think this little girl could be home before Thanksgiving!

Leaps and Bounds

This week started off so badly. Lilah was losing weight, in fact she lost 60 grams in one day. Al and I were so discouraged. But, our little girl turned the corner as always and she gained 90 grams the day after and last night she gained 160 grams!!! She is now weighing 4lbs 11 oz. Yesterday at the hospital she actually took 27 mls from her bottle and her respiratory rates stayed nice and low. I know this is wishful thinking, but I think our Lilah could be home for Thanksgiving!

I also decided to decorate her NICU apartment and give her some nice scenery.

Update on her roommate:

I found out yesterday that she will require a ventilator as long as she is living. My sister and I seem to think she may have cystic-fibrosis or something similar. It doesn't look like she will live a long life. It brings tears to my eyes, but I have decided to do what I can while we are there to make her life better. They put her in a crib yesterday and I asked if I could donate a mobile to her. She needs something to look at during the days. The nurse told me yes! I am bringing it today for her and so excited. I hope she likes it. My sister has also bought her some little Minnie Mouse socks to wear, along with some little pants. She can't wear shirts because of all the lines in her little chest etc. I am sure fond of this little girl and she will always have a place in my heart.

Update

Today Al took off from work to spend a daddy and daughter day home with Miss Olivia. This gave me time to get some things done. I got my flu shot finally. I was able to finish up some banking stuff and come to work without my little gem and finish some work up. Therefore a few extra minutes to blog and catch everyone up on the girls.

It is hard to believe that Lilah and Olivia are 7 weeks old. It is harder to believe that Lilah is still in the NICU. As hard as life is right now, we have a solid schedule and that makes things easier. We were told yesterday that Lilah is growing out of the "preemie" phase and is really wanting interaction and to be held. I won't lie, hearing that broke my heart into a million pieces. I spend hours with her each day, as done Al. We hold her and talk to her. I kiss her head and tell her stories, but she is needing so much more right now and it is impossible to give it to her while she is in the NICU and we still have Olivia at home. I am thankful that my little girl won't remember these early days. I am thankful that we can make so many memories with her when she comes home. As of today she is weighing 4lbs 5oz. She is only taking about 3% of her feedings through a bottle. This is what will keep her in the NICU longer. I spoke with the one of her doctors last night and they think if she continues to gain weight and keep the fluid off her lungs that she is definitely on the track for coming home.  Then her heart surgery will still be  planned for 2-3 months. Of course the biggest question is when? No one knows. I just want her to know that she is so loved.

Now Lilah has a room mate and it is absolutely heart breaking! The little girl is 4 months old and has been in the NICU since birth. She has went through 3 surgeries and is on a vent. still. She opens her eyes and turns red daily. Her monitors are constantly going off and the nurses are always over there trying to help make her more comfortable. As heart breaking as this is, she doesn't have any family that cares about her. The nurses buy her clothes and toys to keep at her bedside. They talk to her and stroke her hair. It kills me! I want to go over and touch her, but she never formed an attachment and doesn't like anyone to touch her or show her affection of any kind. Plus HIPPA doesn't allow to me to have interaction with her. I just wonder if her parents feel bad? Do they feel guilt? Do they wish things were different? At these moments I realize that even though I have a sick daughter, she is so lucky and I am so lucky. She will always have our love and protection.

Here is a picture from yesterday. I decorated her "apartment" so she could get some stimulation.

I love her so much. I have to keep reminding myself that this is only temporary and we will have our entire life ahead.

Busy Life........

A quick update while I have a few extra minutes.

The girls are doing great. Olivia came home last Friday and life has been a blur since then. I started back to work . This week Olivia had four doctors appointments. I definitely feel like I am missing my superwoman cape while juggling a baby home, a baby in NICU, doctors appointments and working full time. Some times you don't have a choice and can only make the best of what is put in your path. That is what we are doing.

Lilah is gaining weight. She is up to 4lbs 3 oz, but still no release date from doctors. I suspect it will be at least another 4 weeks, I am sure more like 6-8 weeks. They are just putting weight on her right now and introducing bottles. The problem still remains giving her to much feedings cause more fluid in her lungs that and she is already on four heart medications. So things are slow, but progressing. She is such a fighter!

Olivia is now 5lbs 3oz and I am such a nervous mom with her. Right now she is sleeping in a bassinet next to our bed and I keep my hand on her at night to make sure she is breathing still. My sister bought us the Angelcare mats and Al will install them this weekend. Those along with my video monitoring system, I should feel somewhat at ease. She is eating well and a happy baby.

Here are some pictures of both girls. Sorry for such short update. There seriously aren't enough hours in the day.

Some Days

Some days it really it hits me hard when I see fellow friends online etc. taking home their babies and knowing that is not my life right now.

My Life

This is what my everyday is like.... I Love it beyond measure.

32 Days in NICU: Looks like Olivia will be coming home within the next two weeks.

30 Days

Today is day 30 of our girls being in the NICU. Wow this past month has been a serious roller coaster to say the least. At our scariest moment with Lilah having kidney failure and finding out she needed heart surgery. Today being one of the best days so far. Olivia gained 110 grams overnight and now weighs 4lbs 5.1 oz and Lilah gained 80 grams and now weighs 3lbs 8.4oz. This is their biggest weight gain in a month. 

Olivia June- Is now eating two bottles a day at 37ml each feeding. She seems to be a natural at this. No choking and she is keeping her milk down. She is also maintaining her body temp. They were thinking of putting her in a crib a few days ago, but I had them hold off. With the introduction of bottle feeding plus the eye exam she had, I felt like transitioning her into a crib was setting her up for failure. The MOST important thing with a NICU baby is maintaining weight and not burning up all their calories on unnecessary things.  They do want the babies in open cribs by 2,000 grams and Olivia is getting close. I did give the "go ahead" today to move her. This is going to be a big day for my little girl and her mommy. I can't wait to get over to the hospital today. 

Lilah Grace- Like I said she had amazing weight gain last night. Earlier in the week we made the decision to move her back into a heated isolette to help keep her warm so she wasn't wasting her calories. At 1500 they will wrap a baby, dress them and turn heat down. Al and I have decided against this right now. I want her to stay in there and gain as much weight as possible before her band surgery. The doctor came in yesterday and Lilah is still on surgery schedule for late next week. This is a very hard situation for us. Not only the thought of our little girl having heart surgery, but knowing after the surgery we have to start all over again. These past four weeks will mean nothing and be totally lost. In some ways I hope they do the surgery and get it over and in other ways I want to keep pushing it out because I can't bare to see her go through this.

Me- For the most part I am doing pretty good. Exhaustion is part of my daily life, but what mom doesn't have this? I am still managing to get about 35 hours a week at work. I am still pumping every two hours throughout the day/night, but only getting a minimum amount of milk ( about 1 1/2-2 ounces) per pump. The girls are each eating about 6-8 ounces daily so my milk supply isn't keeping up with them. I refuse to stop pumping though. I know that every drop I can make for the girls will help them. They also get donor milk to help supplement and both girls are on fortifiers to help pushed additional calories. Al and I have a great system that seems to be working right now. We are able to see the girls three times a day. I also heard back from my bosses yesterday and they are going to let me bring Olivia to work for a month or so until Lilah gets out of the hospital. This is going to work out so well. I can then take 12 weeks off and get them through Flu and RSV season before starting childcare in early spring. 

Most of all I am so blessed for the health of my daughters and will never take this for granted.EVER. 

Here is Al doing a fantastic job of feeding Olivia. He is such an amazing dad. I knew he would be, but it is still so fantastic to watch.

 

One Month Pictures

Picture post of our little photo session tonight. The nurse and I were sneaky and put the girls together for about 15 minutes!

One Month Old

Four weeks ago my two little babies were born at 30 weeks. It has been a long month and I know there are many days ahead of us in the NICU still. Today we celebrate the girls making it through a full month.

Olivia June- is doing fantastic! She weighs 4lbs 0.6 oz as of today. Last night she took a full 30mls of bottle and didn't choke once. She downed the whole bottle in one setting! I hope this is a sign of good things to come with her suck, swallow and breathing. Before she can be released from the hospital, she needs to be able to take ALL her feedings through a bottle. Also they are going to try to move her to a crib today. I am hoping to see my little lady laying in a crib tonight during my visit. (Pictures will be available tomorrow). As of now it looks like a possible Halloween release for my baby girl #2.

Happy One Month Olivia June!~

Lilah Grace- What can I say about this little fighter? She is the strongest, most determined baby and such a will to keep moving forward and get stronger. God I love her so much! For the past few days she has gained weight, 50 grams to be exact. She did lose 10 grams last night. I spoke with the Cardiologist and if Lilah keeps maintaining or gaining weight, they are moving her surgery until next week. Fingers crossed. She needs to put on as much weight as possible and grow stronger. They feel confident that the band will help her greatly. I must admit it kills me heart every time the nurses and doctors refer to her hole as "huge". Did I mention what an amazing little baby she is? Oh and she is a squeaker. It is the cutest thing ever. When you hold her she squeaks!

Happy One Month Old Lilah!

Since Olivia will be home in a matter of weeks and Lilah still looking at another few months in the hospital, I have talked to Al and have decided to talk with my bosses about bringing her to work with me. I am still working full time. Al visits the girls before work and during lunch. I come in early and work until about 3 and head to the hospital for a few hours. Luckily we only have three employees at our office and it is not opened to the public, so I feel safe bringing her up here with me. If I can do this until Lilah comes home then I can take 12 weeks with the girls at that point. I can't imagine blowing through my maternity leave and having Lilah come home to be with others while I work. She will need me when she comes home. So wish me luck!

Looking In

Any of you that know me and follow my blog know I try to remain as positive about things as possible, even in bad times. 

I want to start this post off today with just that. I can't even begin to describe how much I love this picture and it brings tears to my eyes every time I look at it:

 This was taken yesterday at our evening visit with the girls. 

Well I am not really sure where to start this post, so here I go. Olivia is doing amazing and is now over  4lbs, had her OG tube removed and now has a dandy NG tube. She drank a total of 14mls out of a bottle yesterday. They seem to think she may be home before Halloween. Wonderful news!

On the other hand, Lilah is not doing so well. She is only 3lbs 4 oz as of today and is almost one month old. I met with the Cardiology team yesterday and  they are concerned. It looks like she is going to need multiple surgeries and the first one could be as early as this week coming up. They want to go in and put a band around her artery which is also known as a Pulmonary Artery Band. This is major surgery and she will need her chest cut open to have this done. To say I am scared shitless would be a HUGE understatement. Is this a very common procedure? Yes it is. Do they perform many of the procedures on baby's that are 3lbs? Yes they do. Will it help her have a better quality of life and gain weight until her patch surgery? Yes it will. Is an amazing surgeon doing this surgery? Yes he is. In fact OU got this surgeon from the Mayo Clinic and he specializes in both these surgeries on premature babies. Does any of this make me feel better? No it really doesn't . I am having nightmares of my daughter dying. I try to be strong for everyone around me and mainly for my children. I am a mess inside. I know we have to do this surgery. In fact I know she needs this surgery to survive.  I am just at a total loss right now. I also feel like a huge failure to my girls. I wish I could have carried them longer. I wish I could go through this surgery so Lilah doesn't have to. I wish I could carry all the burdens for these babies and they could just come home right now as healthy little girls.

I have found myself lately looking at other families while getting gas or going through a drive thru. I see them in their everyday life, doing their everyday activities. I sit there and wonder if that will be us someday. Will I have my little girls at the gas station pumping gas and heading to the park for a fun afternoon? Right now our lives consist of full time jobs and going to the NICU multiple times a day. I had a nurse and doctor tell us that " you guys are always here and you know what is going on with the girls better than anyone". After we left I told Al that in fact we are not there all the time and I feel I could be there so much more. The guilt of not being there all the time is unbelievable. I have never felt such guilt in my entire life. I find myself crying when I am alone because I am so overwhelmed with different emotions and I just don't know what to do . All I can think about is the  "what if's"? What if I did things differently and both my daughters were here healthy. I asked about congenital heart failure and what causes it. Studies have shown that babies with these problems often had mothers who:

Took many medications during pregnancy X

Had gestational diabetes X

Had a family history of heart disease X

Yes I had all of the above. I know it will never be known why this happened and I know that the only thing right now is getting Lilah better so she can come home. 

I would love to hear from any long term NICU moms and moms that their babies had one or multiple heart surgeries at such a young age and weighed so little. Please comment or email me at 

tonisharapp@yahoo.com

Thank you.

Making Progress

The last few days the girls have made some nice progress. The thing to remember in NICU is "small strides are huge milestones". Gaining a few ounces, pooping, maintaining temp, not vomiting, etc. They were concerned yesterday that Olivia might have an infection because her stomach has been distended for a few days and she had some "molding" which could be early sign of infection and gives the baby's skin a look of lace. After doing the x-ray and labs, everything came back totally normal. Her stomach is filled with gas and that is because of the fortifier. That stuff is a necessary evil. It is hard on stomach, but helps them put on and maintain vital calories. She should also be getting her Picc Line out today. If for some reason she needs to be hooked up on IV's again, they will need to put the line back in, but it can cause infection by being in with nothing going through it. She is 4 lbs now and growing so much. She is such a freaking happy baby! Always smiling and laughing. I could sit there and stare at her for hours ( oh I do)! Our little fighter Lilah is also doing pretty darn amazing. With the hole in her heart, treatment is different and so are her milestones. She is not putting on as much weight as her sister. This is because they have to be very careful on getting her high calories, but not high volume of liquid. It will put added stress on her heart and that is something we definitely don't want. I also spoke with the Cardiologist yesterday and Lilah will need to be on multiple heart medications and probably larger amounts until her heart surgery. This little girl amazes me daily. She is such a little fighter.

Last night was pretty special for me. I did kangaroo care with both girls for the first time. Al and I had a misunderstanding and he wanted to be a part of this. So when I sent him a picture, he was so hurt and upset. Luckily we talked about things and he realized it wasn't on purpose. We are going to try again with the girls this weekend and pretend it is the first time. I love that he is so involved with them and their care. All the nurses and doctors LOVE him! It kind of makes me feel like crap because I see the girls at night when everyone is gone. Last night talking to the Cardiologist, she mentioned that she "always" sees Al and must be missing me. Talk about a huge punch in the gut. I already live with overwhelming daily guilt of leaving my girls in the NICU while I go home. It has been so bad that I am not even sleeping at night anymore. I check my phone constantly to make sure the ringer is on and the hospital hasn't called. To make things worse, I have been told at least ten times " Well wait until the girls come home and then you won't be able to rest like you are now" 

What

The 

Fuck?

Seriously?

I don't have five extra minutes in my day as is and I am lucky to eat two meals a day and shower (if time permits). I just can't believe  how people comment on things they know nothing about. It is very offensive. Not only am I a mom to twins, I am a mom to twins in the NICU. Not taking away from other parents, but this is a really hard job and very stressful. Of course like I have said before, worth every minute.

Here are some pictures for your viewing pleasure:

NICU Mom

Today I am a NICU mom of two babies. They are 21 days old. I never realized how truly exhausting it really was. With that being said, there is no other place I would rather be. I watch my two beautiful daughters grow stronger daily. They look at me with these amazing smiles and such sweet faces. I look past all the IV's and the monitors daily. I remember the first week they were in the NICU, it was so overwhelming. I remember crying and crying. My heart hurt so badly seeing all those lines and seeing the monitors beeping red because of the Bradys (Bradycardia) spells. All the nurses phones start ringing and it can be very upsetting to see it until you get used to being around it. I also felt horrible they were in the incubators and haven't been with each other since pregnancy. They looked so lonely. I think the worse part for me and still is until this day, the leaving them everyday. No matter how many hours we spend with them, at the end of the day I do have to leave them and still suffer from such guilt.

As of today, Al and I have finally got a schedule together and it seems to be working well. He wakes up about 4:30 every morning and goes into work early. He works until 6 :00 and then walks over to see the girls in the morning. He spends about an hour holding and changing them and then heads back to work. At his lunch break he walks over and does kangaroo care for another hour or so and then goes back to work. I get up and get to work around 7:00 and work until about 3:00 or 3:30 and then head over to the hospital and see the girls until 7:00  or so and head home. Al makes dinner for us and we try to spend some adult time and conversation with each other. It has been so important to us that we keep our lines of communication up with each other. I am also on a 2 hour pumping schedule throughout the day. It is busy, busy, but it seems to be working. I also have to remember that this is only temporary. We will have our babies home soon. Hopefully Lilah can come home for a few months before her heart surgery.

Here is a pic of their Halloween outfits!!!