Finley's world

Heart update

2008-06-09T11:37:00.000-07:00

So Finley had her appointment at Children's on Friday and the news wasn't fabulous. She has two congenital heart defects. The first one is called Atrial Septal Defect and the second is Pulmonary Stenosis. She has a hole in the wall of the two upper chambers and a narrowing of the Pulmonary valve. The bottom line is that she will have to have heart surgery probably before she goes to Kindergarten. While we are not thrilled with the news, we know that God is in control.

She has gained a little bit of weight again and was up to 7lbs 4oz. One of the side effects of her condition is that she will be slow at gaining weight which is nice to know as she has been struggling in that area. I have been pumping and then feeding to try to ensure adequate gain, so I am waiting to hear back from our doctor about stopping that and being able to relax a little about it.
Her Reflux seems to be better on the meds which is a blessing!

We are doing ok. Trying to look on the bright side about it all! :)

Here are a few pictures from the last few weeks. Lots of sleeping going on around here!

update

2008-06-02T11:03:00.000-07:00

yikes. Does anyone check this anymore? Wondering if I should keep updating it or move over to our other blog. The address for that one changed. It is now http://thepembertonpost.blogspot.com. I went to change it with the assumption that it would still forward from our other name, but no luck.

So Finley update.. She is doing pretty good. She is up to 6lbs 14ozs as of our last appointment on Wed. She is having a hard time with sleeping as she has Reflux. She projectile spits after almost every feeding. He put her on Prevacid last visit and it takes about a week to see results. I am hoping this works! She is just miserable. Really gassy and in pain. She hasn't been gaining as well as our doctor would like so I am back to pumping and bottle feeding.

The other big thing with her right now is our doctor's concern with her heart. We are heading down to Children's Hospital in Seattle on Friday afternoon to see a pediatric cardioligist as Finley has a heart murmur. They are pretty common in kids but the reason he is concerned about it is because it is getting louder instead of quieter. There are a munber of things that it could be.. so we are waiting to see what that is all about.

I will be sure to post about that after the appointment.
Keep us in your prayers!

I am flying solo for a few days as Joel is gone at a staff retreat.He took the camera with him and I forgot to get the most recent pictures off it. I will have to post some more later.

frustrations..

2008-05-10T16:58:00.000-07:00

Sorry I haven't posted for a while.. it is hard to find time for anything extra when you have three kids and are not sleeping good!
Finley is doing ok. She went in for her weight check and had gained 10 ounces in 14 days which puts her at 5 pounds 12 oz. Our doc wasn't thrilled with that as he had hoped for her to have gained a minimum of 14 ounces. The bigger issue though was that she has had a cold for the past week and a bit and he looked in her ears and she has a ear infection! I feel SO bad for her as she doesn't really fuss that much so who knows how long she had it for! She also had thrush, which is an infection in her mouth, but that has cleared now with meds. He gave her amoxicillan for her ear. She is not sleeping well at night at all so neither are we!

So yeah, life with a preemie is not very fun right now. I feel like a first time parent again! I'm struggling a little so please pray for us!

Here are a few pics from the last few weeks.

packing on the ounces...

2008-04-24T13:17:00.001-07:00

Finley had a doctor's appointment today and has gained 7 ounces putting her at 5lbs 2ozs! You can really tell when looking at her that she is gaining. She has developed some folds of skin on her arms and legs and her cheeks are filling out a little.

She is such a good baby. She pretty much only cries when she is hungry.. a big change from our other daughter.. :)

We are officially flying solo now. My mom left on Wed early morning and I survived a day all by myself. It helps that Joel took Jeiven to school and Lori picked Jeiven up from school so I didn't have to leave. I did go to my mom's group though.. late and all, and it was nice to have some normality back in life. Malea really loves her "Wednesday school" as she calls it, so it was great for her to be back.
We have been blessed with some meals so far, which is very nice. It seems like dinner time is when all the chaos happens, Finley needs to eat, Malea has to pee, Jeiven falls and hurts himself..

Joel's birthday happens to be today.. so we are having family over for dinner. I have a messy house already so I need to get working on that, as well as make a cake, and try to take a nap. Any guesses which one probably won't happen?

Finley is sleeping at the moment but I will post some pictures of her and her rolls later, as well as some Joel birthday pictures.

growing and lack of sleep

2008-04-18T14:17:00.000-07:00

So we have been thrust into the life of having a newborn at home.:) She is sleeping pretty good at night, I have nothing to complain about, but even getting up twice a night is exhausting! Joel took one feeding for me last night, which was very nice.. the benefits of having WAY too much breast milk in the freezer.

We had our first doctor appointment with our pediatrician here in Anacortes. She gained some weight since we left the hospital. She was up to 4lbs 11oz's. We were able to stop giving her the supplemented formula feedings and just breastfeed, which is really nice. He will re-weigh her next Thursday at her next appointment and if she hasn't gained as well then we will have to restart it.

She is doing really well. She is starting to look like she is gaining some ounces. She still doesn't really fit into her preemie clothes. They are ridiculously large. The kids are great with her. They fight all the time though about who gets to hold her and how long it is taking when it isn't the others turn. Malea loves to give her hugs and kisses. She was giving her eskimo and butterfly kisses this morning. It was pretty cute.
Finley had her first bath, which she actually enjoyed.

Here are some pictures from this morning. She looks so small in her crib!

HOME!!!

2008-04-15T20:18:00.000-07:00

So at about 4:30pm we arrived home. Man does it feel nice to be here! I can't even imagine what life is going to be like now!!!

Finley did great through the night last night and gained 0.6 of an ounce so they gave us the green light to blow the joint (Their words.. not mine)

We had to pass a 90 minute car seat challenge, watch an infant CPR video and prove that we were capable to care for her at home. We still have to supplement 2-3 feedings with extra calories so that means a couple bottles a day.. I figured I would save one of them for the middle of the night so Joel can do it :) I haven't consulted with him so I am sure he had other plans.. We have an appointment with our pediatrician on Thursday. My mom is going to stick around until Tuesday so that will be helpful. The kids are pretty excited, it will just be a challenge to ensure that Malea isn't too rough.
Thank you everyone for your thoughts and prayers through this whole thing. I am sure we will have lots of challenges along the way, but I am confident that we will figure it out!

I will continue to update this blog for Finley for as long as I feel necessary, and as long as you want me to..
Here are some final hosptial pictures and some add home stuff. The first picture is of her in her carseat.. the white thing at the bottom is a towel to try and make her tall enough!

an end in sight..

2008-04-14T15:35:00.000-07:00

Sorry it has taken me so long to post today! It has been a really busy day.
It appears as though we are getting very close to leaving this place. Finley has been doing great with eating in the last 24-48 hours and she has regained back to her birth weight! They have started using the word "home" and we may be there as early as tomorrow evening! They will watch her the next 24 hours and if she continues to gain weight and eats good, we are leaving!!!!

They removed her feeding tube this morning and she has been eating about 60ml the last three feedings. This is more than is required of her so they are happy with the progress.

I am frantically trying to get all the things required of me finished yet today and then I am going to head home. Finley had her hearing test, I had to meet with a lactation consultant, she had to have her Hep B shot, and I had to prove I was compotent.. that I could bath her, feed her as instructed, etc.

Our infant car seat that we have doesn't fit her, it needs to have 3 slots for shoulder straps and ours only has two. Our friends, Kris and Emily Stewart have graciously offered to let us use theirs for a few months until there little one arrives at the end of May. Thanks guys!

I will keep you posted. Thanks for your prayers and support.

2 weeks...

2008-04-13T13:46:00.000-07:00

Well it's been two weeks since this adventure began and it doesn't appear to be ending anytime soon.
Things are progressing with Finley, but slowly. She ate 3 full feedings yesterday and has had two already this morning but they are still a little concerned because she still isn't back up to her birth weight. She is now 4lbs 6 oz but they would like her to be gaining about an ounce a day and she is averaging half an ounce.

Joel, my mom and the kids and I came down yesterday. The kids always enjoy seeing Finley but the don't make it very long as there just isn't anything exciting to do.
We took them to the park close by and had a picnic. It is always nice to take a little break from here as boredom certainly sets in after a while.
Joel and I came down early this morning to try and keep the staff from just tube feeding all the time. We will see what happens with that.

Joel is planning on working 3 days this next week so I will still come down, just by myself.

Here are a couple pics.

daily update

2008-04-11T15:18:00.000-07:00

Not much to report. Finley gained more weight. Now up to 4lbs 5oz. She ate a partial feeding at 5am and then a full feeding for me at 2:00pm. My mom came down with me today and Joel stayed home with the kids. He took them to Jungle Playland and felt strange being the only dad who was alone.. :)

Here are a couple of pictures from today..

more..

2008-04-10T16:32:00.000-07:00

So Finley has now eaten two full feedings today! YAY! It took her a long time (20-25 minutes) but she did it! She also stayed awake for an hour and a half straight right after eating so that is awesome too!

So during this whole process there has been a worship song that has just hit home for me. We sang it at church for the first time about a month ago and it really spoke to me so I found it on itunes and had been listening to it alot. The night after my water broke, I was sitting in my hospital bed just feeling crappy and It came on my ipod and the words were just so fitting for the situation we were in. I totally lost it that night and ever since I can't not cry when I listen to it.. oh the joys of pregnancy hormones :)
I thought I would share it with you as it has impacted me greatly.
It is by The Desperation Band and it is called "Rescue". You can search for it on Youtube and listen to it, but here are the lyrics. It amazes me how God can place things like this in our lives to bring us closer to him.. certainly has worked for me.

RESCUE-
You are the source of the life
I can’t be left behind
No one else will do
I will take hold of You

I need You Jesus
To come to my rescue
Where else can I go
There’s no other name by
Which I am saved
Capture me with grace
I will follow You

This world has nothing for me
I will follow You
This world has nothing for me
I will follow You

Thursday's update

2008-04-10T11:51:00.000-07:00

Finley gained some more weight over the last 24 hours! She is now up to 4lbs 4ozs.
She ate a full 40ml feeding this morning at 8am and we are going to try it again later this afternoon. They are just doing 2 nipple( bottle) feedings a day and when she can master two of them she will move up to three etc. She has 8 feedings a day so it may take her another week or so. I have noticed a lot more awake time inbetween feedings which is a really good sign as she has enough energy to stay awake after eating.

We plan on being down here all day again and Joel's cousin Andrew and wife Carolyn and their daughter Ellie are coming to see us from Eastern Washington. We are planning on having dinner with them tonight.
We brought my dad down with us this morning as he bought a vehicle in a city close by to here. He got to see Finley one last time before he heads home in the morning. He will be back when Finley comes home to pick up my mom.

Sorry it's not a big post.. not much else to say!

Malea's day...

2008-04-09T21:12:00.000-07:00

I didn't spend much time at the hospital today.. man was that hard! I really wanted to take the time to spend with Malea but she was SO difficult today. Me being gone so much has been really hard on her. We took her to see Finley, had lunch and then went shopping. We had a party here tonight. I will post pictures on the other blog http://thepembertons4.blogspot.com/

So as far as Finley is concerned she is still doing good. She actually gained a little weight yesterday.. an ounce. :) She still isn't eating well so that is frustrating. The whole nursing/scale thing is driving me insane so I am done with the breastfeeding thing until we get home. She took 30ml at a feeding today so she is getting closer but she has to do that at all her feedings.. not just one.

I will update again tomorrow. Thanks for checking in on us :)

More of the same....

2008-04-08T15:32:00.000-07:00

Not a lot to update y'all with. Finley is still losing weight.... She is down to 4 lbs 2 oz. They are a little baffled as to why this is. They think maybe she is burning too many calories when she breast/bottle feeds. They are supplementing her feedings with extra calories but she doesn't seem to be retaining them. I finally asked yesterday at rounds if anyone was willing to give me an "estimate" as to when she is coming home. The Neonatologists gave me a guess of a week but told me not to quote him on that. We are going to try and do mostly tube feeding for a day and see if her weight increases at all. That works out well for me as it is Malea's 3rd birthday tomorrow and I am not planning on being here that much.

She has an eye infection which they are now giving her drops for.
Not much else to tell you. It is getting pretty hard to watch the kids around us going home. I used to love seeing newborns out around town.. not so much anymore.
It is easy to get wrapped up in the woe is me thing, but God does have a plan for this... just don't know what it is yet :)

Thank you so much all that left comments. It is really nice to know that we are loved and supported. It is easy to feel lonely down here. If anyone wants to come and visit, we can have visitors. I am pretty much here every day from 10:30-5:30.

Here are a couple pics from yesterday. You will notice that Joel is in some of the pictures. He couldn't stay away. His parents came yesterday and he tagged along for the afternoon.

The daily grind

2008-04-07T11:41:00.000-07:00

So I came down to see my baby by myself today. Joel decided it was time to try and work. We had a great weekend with the kids. I think it helped a little bit :)
We had a great time at the Children's museum. I of course didn't bring my camera in.
The kids had a blast swimming with Joel and just spending some time with us. The kids have been really great with Finley. Malea is very sweet and wants to hug and kiss her all the time. She just doesn't understand why she can't come home yet.
Jeiven went back to school today and Malea is at home with my parents. It has been such a blessing to have them there. I can't imagine how much harder it would be if the kids were in a different place every night.

Things with Finley are about the same. She got her IV out completely yesterday. She is doing ok with feedings. They are concerned though because she isn't gaining weight fast enough. They are supplementing my breast milk with some extra calories to boost her up a bit.. so far it's not really working.
We had a terrible nurse this weekend. He told me that I can't breastfeed anymore and probably won't be able to until she goes home because of the supplementing. I talk to the night nurse about it and she had nenver heard of that before so that was very frustrating. The plan is to bottle or breastfeed her at every other feeding. That way she gets a break in between to build up her energy. She took a full feeding, which is only 40ml.. 1 1/3 ounces. The next bottle she took over half. We are making some progress it is just slow. They haven't done rounds yet today so I am not sure what else they will say but not much else has changed.
Here are some pictures from the weekend and a few I took this morning.
Thanks for your thoughts and well wishes. I like to know who has been here so leave a comment if you dare!

a break

2008-04-04T22:29:00.000-07:00

So you may not get an update tomorrow morning. Joel and I came home tonight and we are planning on taking the kids with us in the morning. They haven't seen Finley since Tuesday and we need to spend some time with them. We are planning on taking them to the Children's museum and then to a hotel close to the hospital for the night.
I will try to post but no guarantee.

I did talk to the night nurse tonight and we came up with a plan for feeding while I am not there. They are going to bottle feed her when I am not there which should make things go alot faster for her and then she should come home sooner. I don't care if I am never able to actually breastfeed. I will pump and feed her that way forever if I have too.. I just want her to come home!
Joel was able to get out tonight with some guys which was much needed.. we were driving each other crazy :)

Here is the head IV picture... :)

ups and downs

2008-04-04T13:24:00.000-07:00

So yesterday turned out to be a pretty crappy day. I decided that I should probably have my leg checked out as it was getting alot worse and my ankles were really swollen. I went upstairs to the L&D floor and they sent me to Dr. Brinkley's office, who is the OB that delivered her. They took a look at it and sent me to the ER where I waited for 2.5 hours. They finally looked at me and said they thought it was a SVT, which stands for superficial venous thrombosis.. or something like that. It just meant that I have a bright red spot on my leg with a vein that isn't circulating right. The ER doctor thought that it might be DVT, which is the same thing, just with a deeper vein. That one is more serious and requires blood thinners to clear the clot. The machine they needed to check for that wasn't at this hospital campus so they sent me over to their other campus here in Everett. When i first got there they told me it would just be a minute and I ended up waiting almost 2 hours. There was a mixup with what room I was in so they couldn't find me. It wasn't DVT so I am suppose to be taking an antibiotic for some cellulitis but I haven't done it yet.

All in all it was a VERY frustrating experience and I wasted an entire day when I really needed to be here with Finley! I am trying to stay positive in all this but there are times when it feels like things are just piling up and hindering us from taking this precious baby home. I know that the Lord is in control but it is very easy to try and fight that plan he has, as it is clearly not mine!

Finley is doing really well. The only thing that is keeping her here now is feeding. This is a strange process as there seems to be no real consistent way to figure out how much milk she is gettting from me and that determines when she comes home. As I said in the last post, every nurse does things a little bit different so it's frustrating.

We ended up staying in a hotel last night and are planning on going home tonight. We are going to have the kids here with us tomorrow and spend the night in a hotel with them so they still feel loved. It has been a little hard on them but I think they are adjusting ok.

I will post a few more pictures later today. They had to move her IV and it is now in her scalp so she doesn't look that great.

Thursday's update..

2008-04-03T11:49:00.001-07:00

So Joel and I arrived around 10:30 this morning and got to sit in on the "rounds" again. This is where all the doctors, nurses, etc involved in her care meet to talk about the plan for the day, how she did yesterday etc. Her Jaundice level decreased to 8.0 so we are able to take her out from under the lights this afternoon. She will go from the isolette to a normal crib like thing that you have at the hospital when you have a full term baby. She has been nursing with me again. last night she took 10ml from me and she is only getting 14ml per feeding so she is getting there. This morning's feed went well but the nurse decided not to check her stomach to see if she got anything from me. Every nurse is SO different in what they want to do.

it is Joel's dad's birthday today so we will be going out to dinner with family tonight. My mom is doing much better so that is great!

I am having some issues with swelling in my legs, a bright red swollen area on my leg so I need to head upstairs and have them check that out.. I will keep you posted.

We are planning on staying down here in a hotel tonight if we can't get the sleep room again.

Thanks everyone for your thoughts and prayers. We definately feel covered with prayers!

pictures

2008-04-03T11:40:00.001-07:00

so far...

2008-04-02T17:31:00.000-07:00

Ok, so here is what has transpired so far. Finley was brought down to the NICU right after birth. She was breathing ok on her own for the first few hours but after that was struggling alot so they decided to put her on the ventilator and give her some steroids to help with her lung development. She was on that for about 3-4 hours and then was able to move to the C-PAP machine. Yesterday she was able to get off all oxygen and is now officially breathing on her own!!

We were able to hold her for the first time on Monday night but on Tuesday morning had a bit of a set back as she got jaundice and is now in an isolette and under phototherapy lights.. which means we can't hold her except during feeding times.

Her feeding started off slowly.. they were giving her my breastmilk through a feeding tube in her mouth and she was doing well so they moved the tube to her nose. She started eating well from a bottle but has had some setbacks as she gets tired and then stops.

This afternoon she successfully breastfed from me for the first time. We will find out later tonight if she actually got anything as was successful with the suck/swallow thing as they will check her stomach volume and see if she has more than what she was given.

Joel and I are hanging in there. It has been a very emotional roller coaster. The day that I was released and we went home without her has to have been the hardest day of my life.

We are trying to spend as much time here as possible. My parents came out as soon as my water broke and are staying at home with Jeiven and Malea. I just talked to my dad and my mom has been really sick for the last few dyas. It turns out she has a kidney infection so she should be feeling better here soon. we were leary about going home as we thought she had the flu, but at least now that isn't the case.

I will update every afternoon and let you know how she is doing.

Finley Elizabeth!

2008-04-02T12:10:00.000-07:00

Welcome to our blog about our new daughter, born 3/30/08. She was 6 1/2 weeks early. Most of you may know the details already but I will give you a quick rundown about what happened. I had been on bedrest for the last week because I was dilated to 3 cm's and having alot of contractions.I went in for my 33 week appointment and things were stable since I was on bedrest. Saturday morning 3/29/08 at 11:30 am my water broke and I was taken via ambulance to Providence Medical center. I wasn't having any contractions so they prepared me for a couple of weeks of hospital monitored bed rest. Joel ended up going home that night around 8:30 and 5 hours later I started having SERIOUS contractions. I called Joel at 2:15 and told him to get down here as I was in active labor. I gave birth at 4:36 am and Joel made it with about 45 minutes to spare. She came into the world at a whopping 4lbs 8oz's. She was 17 inches long. We were able to hold her for a while but then they took her to the Neonatal Intensive Care unit ( NICU) and as of today, she is still there!

Here are some pictures from day one and I will do another post about an update.