<strong>December 19,2009</strong>

We are still here-although I am wondering why.  The doctors don’t think we can handle the babies feeding tubes.  After dealing with all of Melissa’s needs I’m thinking piece of cake.  I talked to a friend of the family who has been doing home health for 25 years and even she agreed when it comes to our family an NG tube would be easy.  I am looking into having home health because of the tubes.  They would have to be in the home 24 hours a day until the tubes came out hopefully in the next couple of weeks.  I am being told that home health is usually only approved for children on a vent and we would not get approved for such a minor thing.  I’m scratching my  head because I can only imagine that we are looking at about 10,000 a day to be in the NICU between both babies with a home heath care nurse being a fraction of that.  As of right now we are also cash pay clients so anything we can do to reduce that cost without sacrificing care while getting our family back together is what needs to happen.

<strong>December 18, 2009</strong>

We are still just here for feeding stuff.  They both gained again last night.  We are on the right trend.

The babies were moved to NICU 3 yesterday.  It is a lower level NICU.  They have been on lowered statis since about Sun or Mon but they kept us upstairs to make it easier for us.  Well they got busy so we were moved.  The 3rd floor NICU is much louder and there is very little privacy.  My room is still on the 4th floor so in order for me to sleep in my room and feed babies every three hours for about an hour at a time it is like getting up and walking to the end of our property through two locked doors and an elevator.  I slept in the NICU last night which is what I will continue to do until we are either rooming in or discharged.  Both rooming in and to be discharged are two things we are asking for.

<strong>December 17, 2009</strong>

I really don’t have anything new to report.  Tayla is still on the billi blanket her levels are within the normal range they just want to be extra cautious.  Tayla has had two days of weight gain and Ruben has had one day up an oz one day down 1/3 oz and one day up another oz.

At this point we are only here for feeding issues which is very typical for premiees.  They are begining to have longer nursing sessions but even with the tube feedings they are using everything they are getting.  Several people have asked me if they really need the feeding tube and the answer is yes.  They just don’t have the energy to be able to take enough anyother way to sustain themselves.

I am hopeful that they will just send us home on the tubes after we have several days of upward weight gain.  They said that they don’t normally do that but let’s face it we are not a normal family.  After dealing with all of Melissa’s issues I’m thinking an NG tube piece of cake.

Keep praying for weight gain and that we can go home very soon.

<strong>December 15, 2009</strong>

Things are still going good.  Tayla is off the billirubin lights she is still on the billi blanket.  She is now able to be dressed and to be out of the warming bed.  She is doing a great job regulating her body temp as is Ruben.  She gained 3oz today she is up to 4lbs 10oz which is great as it is the first day she went up instead of down or holding her weight.  Ruben pretty much maintained his weight.  He had gained 1/2 oz yesterday so he is up to 4lbs 1oz.

Feeding continues to be an issues as they are not strong enough to suck long enough to get all their feeds by breast.  So we continue to nurse them on demand (if they wake up which is almost never) or every 3hours and then after they get tube feed an entire feeding as well.  They are doing a great job digesting all of their food and are not spitting up.  From what the nurses have said that in and of itself is great.

Keep praying for continued weight gain so we can go home soon!  The other kids need mom home.  We all need to be together.

<strong>December 14, 2009</strong>

So far today we have many things to celabrate.  They are both off their IV’s.  We are weaning the tube feedings trying to have them nurse instead.  Ruben is off the billirubin lights.  He is off the warmer and is wearing clothes to see how he regulates his body temp.  Tayla is still on billirubin lights but appears to be very close to being off of them.  They did drop them from two lights and a blanket to one light and a blanket.

Pray that they start to gain weight they both lost again today.

December 13, 2009

We had a very good day today. Ben is off all breathing support. Both of their Billirubin levels are down I’m hopeful that they will be off the light tomorrow. Once they are off of lights they can go in a regular crib with clothes on so we can see how well they are regulating their body temp. They are weaning the IV fluid and upping the feeds. They should be off IV fluids by tomorrow night and hopefully have their IV locks out by Tues.

They have thier newborn screen done tomorrow pray that their Phenyalanine levels are normal.

Ben woke up last night and started to nurse. Tayla on the other hand started to sleep. I am nursing both of them and they are receiving a full feeding though the feeding tube. Tayla maintained her weight last night she is down to 4lbs 8oz. Ben dropped another ounce he is down to 4lb 1oz. They are telling me that they are still in the normal range for weight loss but having them so tiny in the first place it is hard to believe.

It is looking like within the next 24-48 hours the only reason we will still be here is feeing issues.

Please continue to pray for our family.

December 12, 2009

They have names! His name is Ruben Isaiah (Ben for short) and her name is Tayla Grace.

Well I never did give a rundown of what was going on with her when we came in. Tayla did fine breathing pretty much from the get go she never needed help. She was admitted for several reasons. Besides being a premiee she seemed to be having some issues regulating body temature. She was really red because she had a very high hemicrat. The concern with this is that her blood may clot too much and be too thick in turn causing blood clots. Everything seems good with that now. She also has a heart murmur which is very normal for a newborn.

As of today Ben is down almost off the tiny bit of pressure to help him breath. We are hopeful that tomorrw he will be off of it all together. He is still on an IV for fluids but that was turned down. As his feedings increase the IV fluids will go down. He is not nursing yet all his feeds are being tube fed though a nose tube. He does however have a suck reflex, yea! He just does not have enough strength right now to do it. He is on a Billiruben light which is to be expected. One night on the light and his level came down a good amount. I got to give him his first bath tonight very exciting.

As of today Tayla is doing good. She too is on an IV and that will be decreased just the same as Ben’s. Her Billiruben level were higher then his. This is to be expected because of her high hemicrat there is more stuff to break down. She is on two light and a blanket. Her levels have gone down a little. She is doing great latching on and sucking. She does get tired very easily so after she spends time with me nursing she is still receiving a good portion of her food though a nose tube tube.

I am getting lots of milk so they should be able to just get my milk. Getting breastmilk for a premiee in a good portion of cases can be the difference between life and death.

I have been able to hold both of them and at least once a day I have held them both together. Today I put them check to check and it was so precious.

My children have been amazing. Lindsey and Tucker have been doing a great job from what I have been told keeping up with the house and taking care of Melissa. Josiah has been helping out some too. Shelby and Cade came in today to stay with the kids at home so I don’t have to worry about them. Kelly is trying to figure out how to juggle work (he doesn’t have anymore time off of any kind until Jan 1st), being at home, and being here.

Thank you to everyone for all your support and prayers. We have been so very blessed by all of you.

December 11, 2009

They are both doing great. I will try and tell you a little about what is going on with each one since we got here and how they are doing now. Medical spelling is not my strong point but I’ll try.

Suprise, surprise, surprise, we had them at home as things moved so quickly. I had my concerns as they were so early but we were also having a very bad snow storm and by the time I figured out were weren’t going to make it I figured it was much better they be born in the controlled environment of home then in the car in a snowstorm. Thankfully they both did great until we could get to the hospital.

He had issues breathing from the get go. When we got here his oxygen stats were down to 68% and CO was over 50% They tried oxygen on him and that did nothing so they put him on a C-PAP. Because of his early arrival his lungs were not fully mature. Luckly they were mature enough that they did not need to put him on a ventalator and give stuff to mature them. He did great on the CPAP. The CPAP uses some pressure to help get the oxygen into the lungs and to keep them from collapsing. He was on room air with the cpak still within about 12 hours of us being here. 24 hours later they put him on just a cannula in his nose still with a little pressure. We are hoping with as well as he is doing to have him off all breathing helps with in the next 24 hours. He is off antibiotics as his cultures came back fine. They with held feeding by mouth since preemies are more prone to and issue with the digestive track as it is paper thin. They can get gang green and die. Luckily we are now using breastmilk only to feed them so the chance that that will happen is 10x less then if they were getting formula only and 4x less then if they were getting formula and breastmilk. He is receiving his feedings by tube. His appeared to not have a suck for the first fews maybe because of being early or maybe because he is tired. The suck reflex is one of the last things to develop on a baby before birth. I was able to put him to the breast yesterday and he did open up and latch all three times and by the time of the last feeding we even has some sucking motions! He did suck on my finger for several minutes last night as well and his tongue movement is what it should be. It will still be a little bit before we will be able to full feeding though as he gets tired very easy. Billirubin of course is elevated to be expected so I’m guessing they will put him on a light today. All in all he is doing awesome.

I will update you on her as soon as I can get back on.

December 9, 2009

On Dec 8th 2009 we added two more members to our family. We had twins 6-8 weeks early. We had a baby girl and a baby boy. We do not have names for them yet. We did not know we were having twins. The ultra sound only showed one baby. My water broke and I had them within about two hours. This was a shock to us on so many levels as we have never had a preemie baby before, we had two, and my labors in the past have been between 24-48 hours. The birth went very well.

Both babies are currently admitted into the NICU at Avera McKennan Hospital. Baby boy’s lungs are not fully developed and so they have him on C-PAP which he is doing very well on. We are very greatful that he did not need to be put on a ventilator. Baby girl is on an IV and they are concerned about the thikness of her blood. She also has a heart murmur that they are not concerned about. They are both a great size. He was 4lbs 12 oz and she was 5lbs 4oz. They were both about 18in long. She has a good suck and I am hopeful that she will be nursing soon. His suck seems to not be developed fully yet which will make feeding a little more difficult.

Click on the thumbnails to see a bigger picture!

They are thinking we will be here 3-7 weeks mostly for feeding issues. We will try to keep you updated.