Monday, December 29, 2008

Cloth Diapers!


I have been cloth diapering Nevaeh. I love the cloth diapers! I really was not sure that i would but now i wish I had cloth diapered my first two. I have been useing Bum Genius and they are wonderful! They are easy to wash, you do not need plastic pants, and they grow with your baby! So i have been looking at how these are made and I felt i could make my own. So i did! I have attached a couple of the pictures of Nevaeh in her new cute diaper. I tried it over night to make sure it worked and it was perfect! Yay! I am going to tweak the pattern a little and then try and sell a few. :)

Christmas!




Nevaeh had a wonderful first Christmas. Alex and Josh woke up at 7am ready to go. Nevaeh was not quite keen on the idea of getting up at 7am. :) We all got ready and opened packages. Nevaeh was asleep again by the time it was her turn. Between nursing, making breakfast and the boys opening their packages we did not get to Nevaeh's or Aaron and I's presents until lunch! It was fun.




Nevaeh's Great Grandma Forbes made her a stocking. All of the Forbes family has the same stocking. Our stocking have our name and the date we became apart of the family.


We had a blast making Joefroggers. They are cookies Aaron's family makes each year during the holiday season. The boys had so much fun making these. I washed their playdough toys and let them cut the cookie dough that way. It was a fun messy project.

We are so thankful for the best Christmas gift ever...Jesus our Lord and Savior! As a family we have been through so much this year. It is only through our faith in Christ that we are given the hope. "Thank you Lord for all you have done in our lives this past year. We also thank you for the lessons learned and the strength to endure the hard times. We love you Lord!"

Check-up


Nevaeh had a a four month check up and we learned she only gain 1 once in the past week. That is not good. She is nursing and is allergic to milk as you all know. It is hard as a mom to be feeling like i am failing her. We are going to try starting some solids early to see if we can get some extra calories in her. I am also block feeding. My friend Laura is with the LLL and this is recommendation. This is where you would nurse her on one side for, say, 3 or 4 hours. As in, every time she wants to nurse during that time period she would nurse on the same side. Then for the next 3 or 4 hours she would nurse on the other side any time she wants. This can be helpful for moms with oversupply so that the baby gets more hindmilk. Since she would be feeding on the same side for several hours she would get more hindmilk on that side versus just filling up on only the less caloric foremilk.

Saturday, November 22, 2008

The Chiropractor

Nevaeh has been only turning her head to the left. She would scream and cry if she was made to turn it the other way. We had been doing neck stretches and massages trying to help her. Her Dr. suggested we try the chiropractor. WHAT! I was sooo nervous about that idea. It took me weeks to decide if i would even talk to the chiropractor. We decided to go see Dr. Jolley at Wasatch Spine and Disc in Layton. www.wasatchspineanddisccenter.com Ok so WOW is my word for him. She now is turning her head on her own and did not have to have all the pain to do it. She has only seen him 3 times. I am so impressed and now the only thing i wish i did differently was ...i wish i had gone sooner. We had done daily stretches many times a day for weeks. So many tears we did not have to go thru. Well live and Learn.

Thursday, November 20, 2008

Our visit with the cardiologist

We had an appointment on Tuesday with the cardiologist. I was sooooo worried about that he was going to say to me. I really wanted to hear i was doing a good job. The last time we had seen Dr Su he was wanting her milk fortified. She only got that for a couple weeks until she her milk allergy showed up. So she has breast feed only. So I should not worry about what might be. Dr Su was so happy with her gain. He was glad to see we did not keep the feeding tube long. I basically pulled it right after she passed the swallow test. He said she is doing a great job with her growth and he is expecting her to be small. She is growing right along the growth curve. So Nevaeh is 3 months and 8 lbs 15 oz. Dr. Su did say that the VSD (hole in her heart) is not closing as he was hoping. So he is going to want to see her in 5 months. He will then talk to me about closing it if it is still there. He will also look at her aorta to make sure it still has good flow. I just can't believe we are not going back in for months. So over all the appointment was good and i am so happy she is doing well.

Wednesday, October 29, 2008

Nevaeh and her brothers who love her.




It has been so wonderful to see how much her brothers love her. I am amazed that neither has shown any jealousy toward her. I was expecting it. Josh is always so gentle with her. If she is crying he runs right over and pets her cheek and says "ahhhh". It is too cute! Alex like to care for her. Holding and rocking her. He is very protective of his baby sister. He has given her the nickname Beauty. Josh calls her "Nay Nay". So we will see what sticks. :)

Tuesday, October 28, 2008

WooooHoooo! 8lbs!


Ohhhhh yeah you heard it right Nevaeh has hit the 8lb mark. I am so excited for her. She is doing such a great job. At 2 1/2 months she has just grown into 0-3 months. She is actually the 5th percentile for weight. That is the same as her big bother Alex. He has always been in the 5th. I have been worried about her weight gain not being able to fortify her milk but now to see she is still about an ounce a day just on breast milk is wonderful. I really feel better.

So I have been getting use to being mom of three. I actually took them to the pumpkin patch twice! So Nevaeh has been on a hay ride 3 times now not bad for 2 1/2 months.

Monday, September 29, 2008

No more feeding tube!

Nevaeh was able to have her feeding tube removed on friday. I was soooo happy to take it out for her. She is nursing very well and not needing anything extra to keep her weight going. She has turned out to be easiest baby i have nursed. Praise God! We all know how stressful it can be at times.

Today (monday) is my first time being a SAHM with three kids and no help. I was so scared that i would not be able to handle this. But my kids planned on making sure i was jumping in with both feet. The boys were up three times last night and one of them alex was bleeding all over the place. He had a bloody nose. I am not sure even now how he got it but it took a while to clean up. by the time i was done Nevaeh was up again to nurse. Oh I was up every hour all night. So my first day 3 kids no sleep. I am actually doing well. My house is a mess but I got Alex to school and back on time and got Nevaeh to the doctor. So i am thinking I am going to be able to do this. :)

So Nevaeh's Dr appointment went great. She gained another 2 ounces over this weekend. So she is right at an ounce a day. Yay!

Sunday, September 21, 2008

Very Past due update. :)

We are HOME! Yeah I have been home for 2 weeks now. I thought I would be able to update but it has been CRAZY! We came home the week before my sisters wedding and all my family arrived for her wedding. So it was very busy.

Nevaeh is doing sooooo good. The NJ tube did not end up being as bad as i was expecting. I was so scared to bring her home. But it is not what i had imagined. It was very hard to be attached to a feeding pump 24 hours a day. Between my boys, Nevaeh's medicine, refilling the pump and pumping my milk I was running around like a crazy lady. Nevaeh did give me a little scare. She started to choke and turned white. I was able to help her and i took her right in to see the dr. All was well and we received a monitor to watch her oxygen levels in her blood. Hooked it up and she has not set it off at all.

We had a post opp check-up and she is doing great! She does not need to be seen again until November. Honestly that is a little scary to go that long but i trust them. Besides I have a wonderful ped that is following her so well. I really am thankful to have a dr that cares for my daughter.

So we also had a swallow test and she passed!!! Ohhhh I was so excited. She did so good. She now has a NG tube. I did learn how to place it and it was not bad at all. I started nursing her after her feeds and she took to it so well. Now that is all she wants. :) I have been fortifying my breastmilk but she is allergic to milk and soy. She we were given this other formula Alimentum but she threw it up. So on monday we are back into the doctor to see if we have any other choices. I am hoping that she is gaining well just breastfeeding so i do not have to worry about trying something new. So far she has been gaining well so we will see.

It has been hard with three kids but now that Neveah is not chained to a feeding pump it is a lot easier. I am sure i will get the hang of all this.

Tuesday, September 2, 2008

Swallow Test was a no go.

Well Nevaeh was awake and alert for her Swallow but did not pass. She aspirated on the fluid they gave her and did not even cough on it. So we have to wait a few weeks to go back in again. I am not sure how this is all going to go and i am really nervous. We are going home sooner than we were before. Don't get me wrong i want to be home but I was wanting to go home with the NG tube not the NJ tube. But as in all other things i am not in control of this and it is something i must just do for her.

Monday, September 1, 2008

Yay! On the floor!

I have not posted in a while nor have i answered many calls. I figured they can all wait, because i am able to hold my baby any time i want! It feels so good and i am so happy! I have also got to dress her. It is amazing how you cherish these things so much more when you are not allowed to do them right away. Nevaeh is doing so well. She will try her swallow test again on Tuesday so for those are praying for her pray she does well. We are in the home stretch and i am eager these days to go home. Oh but scared to death as well.

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Wednesday, August 27, 2008

Miss Nevaeh Naughty Girl! :) 8/27/2008

We have had a good last couple of days. Nevaeh has been extubated! Yay! She did so great with it and is still doing good. She received a feeding tube and has been getting breast milk. They have been increasing it on a regular basis sense it was placed. She is having two more drains removed today so, she will almost be drain free. She was a naughty girl yesterday. She pulled our her RA line, and gave everyone a big scare. She ended up being ok. So she took herself off a few meds but thankfully she is doing well without them. Overall she is making great progress and we might go to the floor tomorrow. :)Photobucket

Monday, August 25, 2008

Forward steps 8-25-2008

It is so nice to keep taking steps forward. They are little baby steps and that is wonderful. I keep praying that she is here healing for as long as she needs so she can come home. She had a great day today. She has her chest tubes removed. The ventilator was turned down to the lowest setting and she got a feeding tube. Yay! I am thankful that she has continued to make progress.

I got to spend the days with my boys today at the zoo. I really needed that time with them. They were excited to see the animals and I was excited to see their smiling faces, hold their little hands and kiss their sweet cheeks. The perfect way to raise my spirits.

Saturday, August 23, 2008

8/22/08 Bump in the Road.

I really was picturing Nevaeh's recovery to be uneventful. Really she has made it thru surgery so all should be great and have no problems. Right? Well not really. Talking to other moms and the nurses and doctors it is a roller coaster ride. You just sit back lower the lap bar and pray you got on the little coaster and not the big one.

Nevaeh had her incision closed a little and two heart lines were put in. She was doing well after and all seemed well. But, Nevaeh's Heart rate went up into the 230's and she lost one of the heart lines they had put in and hour earlier. There was a rush of medical staff to help her. What felt like forever she was stable again and doing well. It is so hard to sit back and watch your baby and be able to doing nothing to help her. You have to put your full trust in the medical staff and pray that God guides them through.

Blessings
Lori
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Wednesday, August 20, 2008

Surgery is done

Nevaeh had her surgery today and it went very well. It was longer than what was expected and more difficult than they thought it would be. They were able to do all that they wanted to do and are happy with how she is doing. She is stable and having no complications.

This really has been one of the hardest days of my life. I could not do anything. So i sat and prayed and cried. All i wanted to do was to be able to take this away for her.

We had Alex and Josh with us for the day and they were so good. The were at the hospital by 7am and did not get to leave until 6:30pm. Only the last hour or so were they having a hard time. I was so proud of them.

I need to update you all with pictures but I need to find some time to stop at walmart to get a reader for my memory card so i am able to get them on my laptop. I have taken over 100 pictures already. So i need to do that soon.

Thank you all for all your prayers i am so thankful that so many people are praying for her.

Blessings

Lori
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Tuesday, August 19, 2008

Surgery

Nevaeh is going to have her surgery at 8am Wednesday morning. Thank you all for your prayers. I will try and update as i can.

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Monday, August 18, 2008

She is Here!

Sorry this has taken so long to get up on her blog. Nevaeh was born Friday the 15th at 6:37pm Weighing in at 5lbs 12oz. She is doing so good. Better than we expected. Ok so the GREAT part... Her diagnosis has changed! She is no longer L-TGA she is D-TGA! Yay! I am so happy about this.
We do not know the surgery date yet but we are hoping to know soon.

I got to hold her!!!!!!!!!!!! Oh it was so nice. I did not want to put her down! I wanted to hold her forever. She is so beautiful.
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Tuesday, July 29, 2008

Hi all! As always thank you so much for your prayers! I went to the doctor last week and they have decided on inducing. It was so nice to see a doctor without hearing anything new. The scheduled day for delivery is Aug 15th at 7am!

I am excited to not be pregnant any more but at the same time I am scared. I know she is safe and sound in my tummy so part of me would like to keep her there. We have her nursery done and almost have everything we need. We are still lacking a car seat. The boys seat is no longer up to current codes and it has expired. So that is the main thing we are working on.

Blessings

Lori

Tuesday, July 15, 2008

Appointment Update 7-15-2008

Today i had an appointment with the Cardiologist. He spent some time looking things over and has decided that she will need surgery after birth. At this point he is not sure which surgery he is looking at, because there are some details that he will not be able to see until she is born. He is leaning toward her only needing her great arteries corrected. Otherwise she will need a double switch. We are not going to know until she is born which one she is going to need. He is not in total agreement with my other Dr that told me she may have Downs. He said he has never seen this heart condition with a downs baby. So he thinks i have a lower risk then what the other doctor says. So all that said we really do not know much more than before and will not know until she is here.

I took a tour of PICU at primary children's today and it was very hard to see. There was another baby there that just had heart surgery and I was able to see her with all the tubes and machines she was connected to. It was so hard to see. I had a very hard time stepping into the room. All I could do is cry at first. They gave me some time to take it in so i could then ask questions. It was informative but so hard. I am glad that I did go. I really needed a reality check as to what we are going to be faced with. I really have been in denial that my baby is going to need anything done. But that is not the reality of things and I need to prepare my heart to be there for Nevaeh and her special heart.

Thank you all for your prayers and support. It really does mean so much to me that you are there for us as a family. Many of you have been asking what you can do to help us. As of right now I am only needing friends to talk to and occasional help with the boys while i go to the doctor. Many of you have been there helping with that already and i thank you. After we find out what surgery she is going to need that will tell us how long she will be in the hospital for. We are expected to be there anywhere from 2-8 weeks. Aaron will be home with the boys for two weeks but after that is going to have to return to work. We are going to need to find childcare for the boys during that time. So in the mean time please just pray pray pray! Thank you all!

Tuesday, July 1, 2008

Our Appointment 7/1/2008

We had another ultrasound today with the doctor that is going to deliver Nevaeh. He has noticed that she is not growing on the growth curve and her legs are looking twisted. This combination plus her heart condition is leading the doctor to believe that She may have Down syndrome. The Doctor is giving us a 1 in 10 odds that she will. So please pray for sweet Nevaeh.

My Heart.

The diagnosis for Nevaeh is she has Dextocardia, Ventricular inversion, and Transposition of the great Arteries. The combination of Ventricular inversion and Transposition of the Great Arteries is called Congenital Corrected Transposition (cctga). What this means is the Right Ventricle usually feeds the blood to the lungs. So it does not need to produce much pressure to get the blood to the Lungs. But in Nevaeh’s case this ventricle is feeding the blood to her body. This requires the right ventricle to work much harder than it is made to do. The surgery to correct this is very complex so we are waiting and watching her after she is born to see if the right ventricle will be able to handle this extra work. In many cases this is can and does happen. But it is a case by case basis and there is no way to know ahead of time if it is going to be able to pick up the slack. She can still be a normal active little girl as long as the right ventricle does the extra work. So we are praying that God gives her heart the strength it needs to perform properly. In addition to all this there is also a possibility of the Aorta has a narrowing. This means that there is not enough room for all the blood to flow to the body. So I will be delivering at The U right next to Primary Children’s in order to have Nevaeh’s heart looked at right after birth. They will then be able to see if the Aorta has narrowed. If it has then they will perform a minor surgery to fix this problem. We will not know for sure if this is needed until after she is born. So we thank you all for your prayers and ask that you all continue to pray for Nevaeh. You are all more than welcome to tell anyone that would also join us in prayer. The more prayer the better.

Thank you all for your prayers.

The Jones family

 
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