quick update

Thank you for all your prayers. They are helping. Elli still struggles to get the volume she needs, but she is holding her own. Last week she still gained the minimum weight that the doctor likes to see even though she wasn't eating as much as she had been the two weeks before that. Her volume is up a little from last week, so hopefully she will continue to do well on her weight gain. She is currently at 9 lbs. 12.8 oz. and roughly 23" long.

Tonight we are doing her over night study to see if she is ready to come off the oxygen. So far she has done well. I will post the results soon.

a request...

I would like to ask for your faith and prayers in behalf of our sweet little girl. She is having a hard time with eating. In the last several days she has dropped in the volume she takes everyday. If we can't get her volume back up she may need to get a feeding tube. I know that a feeding tube wouldn't be the end of the world by any means, but I would still rather her not have to go through surgery at all if it can be avoided. The feeding tube would be placed directly through her abdomen. As of right now she doesn't need one. She has been gaining the weight her pediatrician wants her to. However, if her volume doesn't improve soon, that may not be the case.

If you could please pray for her to have improved stamina for eating, as well as an increase in appetite. Thank you for your love and for your help.

You Are Loved

I was listening to my Josh Groban album today and remembered something my sister told me a while back. Elli was born just a few days before the Josh Groban concert in Salt Lake and my sister was lucky enough to go to the concert, which was fabulous! He opened his concert with one of my favorites, You Are Loved. Of course the crowd went wild, and I'm sure my sister was cheering along with the rest of the fans.

Elli was so tiny and it was a very scary time. We weren't sure about anything at that point. We had hope, and felt as though things would work out, but when you looked at her tiny 1 lb. 2 oz. and 10" body, it was paralyzing. My sister was at home listening to her Josh Gorban CD a few days after the concert when the song You Are Loved came on again. This time in the quiet of her home she heard the song a little differently. As she listened to the words she pictured in her mind the Savior talking to me. The song has meant more to me since she shared that with me. I have been comforted many times since then my these words:

Don't give up

It's just the weight of the world

When your heart's heavy

I, I will lift it for you

Don't give up

Because you want to be heard

If silence keeps you

I, I will break it for you

Everybody wants to be understood

Well I can hear you

Everybody wants to be loved

Don't give up

Because you are loved

Don't give up

It's just the hurt the you hide

When you're lost inside

I, I'll be there to find you

Don't give up

Because you want to burn bright

If darkness blinds you

I, I will shine to guide you

Everybody wants to be understood

Well I can hear you

Everybody wants to be loved

Don't give up

Because you are loved

You are loved

So next time you are having a rough day, which I have had a few lately. Just listen to this song. It is a great reminder that we are not alone, and we are loved.

Adoring Eyes

Elli is just a bit sleepy in this picture, but it shows the sweet gaze she has when she is looking up at her big brother. She just loves him! She starts looking for him as soon as she hears his voice. If she is fussy at all when she should be eating I will have him come over and talk to her softly. She will calm right down and start eating. Bradley and Elli have a very strong and special bond, it is remarkable to watch.

Here is an update on Elli:

She now weighs 9 lbs. 6 oz. Her weight gain is slow, which concerns the doctor a little. We are hoping the her appetite and stamina will improve soon. But all in all she is still doing well. Most babies born as early as Elli go home with their feeding tube, so just the fact that she eats at all is wonderful. She has grown in length a bit too. She left the hospital at just over 18" long, and she is now almost 22".

We could have done our over night study this weekend on her oxygen which would allow her to come off of it if she did well. What they do is turn off the oxygen over night, but keep the apnea monitor on as well as an oxygen saturation monitor. If she can stay above 88% on her saturation, then she no longer needs her oxygen. I'm just a little nervous not to have the apnea monitor. As much as it's a pain to lug around the house, it's also a big comfort. But the day is not far now. So, hurray for Elli! She will actually appreciate not having tape and hoses on her face. She is starting to discover her ears and nose and really likes to pull the nasal cannula out of her nose. She will also appreciate not getting a shot of water in her nose every so often. There is humidity pumped into the hose as well so that her nose doesn't dry out too much, but sometimes drops of water come through and are shot right into her nose. It sends her into a sneezing fit that can make her sneeze 6 or 7 times in a row. So, it is a little scary not to have the safety of the monitor and oxygen, but her progress is exciting. We really didn't know what to plan on. Some kids end up staying on their oxygen for up to a year. We are at 2 months right not. Not too bad!!

Elli is also making eye contact a lot more, as well as recognizing us when she sees us. She gave me a huge grin the other day when I sat down next to her to change her diaper. She still loves her diaper change, her bath up until the moment we take her out, and tummy time. We will hopefully be able to add eating to that list eventually. She is a pretty content little girl, and loves to cuddle with anyone that is willing. She makes the cutest little noises awake and asleep. She is just so much fun!!!

Remembering....

Last night Wayne and I were able to attend the Chocolate Extravaganza, a fund raiser for the Newborn Intensive Care Unit. And yes, the food was as delicious as it sounds. I spent most of my time at the white chocolate fountain.... YUMMY!!! These photos were all taken back in October specifically for the event. They were in the event program as well as a little flip chart style photo book of several different children who stayed in the NICU. The photo of me holding Elli was blown up into a poster that was as tall as me, and Elli was featured in hundreds of invitations that were mailed out.

It was a lot of fun to attend the event and see so many of the nurses and doctors that we have come to love and appreciate. I have really missed them. It was also nice to go out on a date with Wayne. It's been a long time, we both needed it! We are grateful to our good friend Cami, one of Elli's nurses, who was willing to come babysit so that we could go. Bradley was happy too because Cami brought her son over to play. So everyone had a great time.

It seems like forever ago that Elli was this little and on nasal CPAP. (She still weighed in the 2 lb. range when these were taken.) She has come a long way. Elli is now 9 lbs. and ever so close to coming off the oxygen. I am actually okay with it taking a little longer. I don't love carrying around her monitor, but it does bring a lot of extra comfort. So if it takes longer than we anticipate, I will be okay with that.

I am very grateful to have those days behind us. It is wonderful to have her home, to watch her grow and develop. She is starting to smile a little now, and she talks to us. She is especially happy when we change her diaper. She loves the freedom I guess. What a cutie!!

home at last

There's no place like home!!!!!

What a happy new year we have had. On January 3rd we were able to bring out little Elliana home. It was exciting and scary all at the same time. The thought of caring for her without the nurses was a bit paralyzing to me. But it hasn't been bad or as scary as I though it would be. She is such an amazing little girl! We spend a lot of time just holding her and watching her. She is a beautiful little girl!

As you can see, Elli is still on oxygen. She came home on 1/16th, but we had to raise her back up to 1/8th the next day. That was because the hospital air is very oxygenated from all the patients who are on oxygen, so adjusting to the air in our home took her a few days. By the next week she was back down to 1/16th, and the next week she went down again to 1/32nd. That is the lowest it goes, so the next step is to take her off completely. We took her off for about an hour and half last Friday and she did really well. It looks like it won't be much longer, as long as we keep her healthy.

Elli now weighs 8 lbs. 8 oz. and she has really grown. Her voice is getting louder all the time, but she still has the sweetest little cry you've ever heard. We are just so proud of her and her fighting spirit.

Being home has been wonderful. Is isn't easy to be stuck here all the time, but it is worth it if it keeps her healthy. Bradley is so sweet to her. As soon as he wakes up in the morning he looks for her. When he gets home from school he quickly changes his clothes and washes his hands 3 times (I don't make him do it 3 time, he thinks it's better that way) so he can hold her. The first few days after we brought her home we couldn't get Bradley to stay in bed. He kept coming out to give her just one more kiss, or to tell her just one more thing. He is the best big brother! He even loves helping me change her diapers. Although I'm sure that one won't last forever.

We are all just so happy to have her in arms reach all the time, although it has been a little exhausting. After 7 years, I had forgotten how sleep deprived you are with a newborn at home, but we are adjusting. She sleeps for about 6 hours at night, so Wayne and I are trying to get to bed right after we put her down to take advantage of those 6 hours. Wayne is very kind to me and gets up for the early morning bottle. He just feeds her, then showers for work. It might actually help him stay ahead during tax season to get into work a little earlier.

We want to thank the staff at the NICU. You are all angels!! We certainly wouldn't have our miracle without you. We love you all and miss you terribly! You are like family to us, and we feel a little empty now that we don't see you everyday. I look forward to stopping by as soon as RSV season ends.

Thanks again to all our family and friends. We got our miracle because we had so many people on our side. We are so grateful for all the prayers that have been offered in our behalf. We have been strengthened, and Elli has been healed and protected from many things. It has been so comforting, for me especially, to know that I wasn't going through the last 5 months alone. Thank you, thank you, thank you!!!

light at the end of the tunnel....

Ellliana is doing really well. She still gets a little sleepy when she eats, but is getting more consistent in taking the amount she should. She no longer has her feeding tube, and looks so cute without tape across her cheek, and a tube down her nose. She is still on oxygen, but her settings are really low. The nurses have told me that if we lived at sea level she would probably be breathing on her own. We will find out today what the doctor recommends, but there is a chance that we will bring Elli home within the next couple of days. It is a little scary for me to think of caring for her without all the wonderful NICU nurses helping me. I am really going to miss them!! We are excited to bring her home though. It has been a very long 4 and 1/2 months, but they have been amazing months filled with so many answers to prayers. We have all witnessed a miracle.

I will post some new photos as soon as things settle down. You'll all be amazed at how much she has grown.