Feb 13, 2010
The babies are doing great. They have passed their due date and should officially be here now. They are two months old already-where does the time go? Tayla is 8lbs 15oz and Ben is 8lbs 1oz. Tayla is getting all of her food by nursing. She has been doing this for some time. I think we only needed to use bottles for the first couple of weeks we were home. Their strength amazes me. Tayla is stronger the Ruben but they both can support their entire upper bodies including their heads-Amazing! Melissa still doesn’t have that much control of her body. They love to be near each other and even have special sounds for communicating with each other-it is so sweet. We are loving the new additions to our family.
January 10, 2010
We are adjusting to being home. I will be trying to play catch up for some time. The kids are in love and fight over who gets to hold the babies. Ruben is nursing like a champ and gaining nicely. Tayla is nursing better but we still need to give her part of her food by bottle as she still is not transfering the milk as well as her brother. We have doctors appointments on Tues and it will be our first outing. I am not looking forward to it as we will be gone most of the day. We also will be going to Children’s Care to finish getting Melissa’s new wheelchair fitted to her.
January 4, 2010
We are going home!! We should be gone by lunch time. They are both doing great.
January 3, 2010
It is looking like we are going home tomorrow!!!!!!!! Ruben has been eating all by mouth since 6am yesterday. He got his tube out today and has been eating well since. We are rooming in tonight. Speaking of rooming in he just woke up and need to eat. Tayla is with us too.
I will not be able to update very often when we get home as we do not have internet at home and we will be trying not to go anywhere when we go home.
January 2, 2010
Tayla has been discharged! I will still be able to stay in the rooming in room in the NICU with her. I can take her out of the NICU and bring her back in as long as we do not leave the hospital and no one holds her.
Ruben has taken the last 6 out of 9 feeds by mouth. I am hopeful if he follows what Tayla did that by tomorrow he will be taking all of his food by mouth.
I was told that it was -28 degrees this morning at 3:30am. Wow I hope it is warmer then that when we bring the babies home.
January 1, 2010
Tayla is still rooming in with me! She is still taking all of her feeds by mouth. She has woken up over the last day and wants to be held. I will love it when I am able to just be with my babies and not have to go three floors down get my food without my babies.
Ruben continues to improve. It makes sense that Ruben would be behind Tayla since he had the respitory issues that she did not have. I can’t remember how many feeds he took by mout in the last 24 hours but he did take the last two for sure. He is taking at least 50% of his food by mouth. Unlike Tayla who is getting most of her food by a bottle Ruben is getting most of his food by nursing.
It is looking more and more like we will be going home within the week!
Kelly and the kids came down tonight it was good to see them.
December 31, 2009
Happy New Year! We have some things to celebrate. Tayla is still eating all of her food by mouth. She has been rooming in with me since last night. She gained 3 ounces over night! She had just maintained her weight for the two nights before that. She is now up to 5lbs 10oz.
Ruben is up to about half of his feeds by mouth. H took two full feeds in a row today that was very exciting. I’m very hopeful that in the next few days it will become full feeds all the time that is how it happened with Tayla. He broke the 5lb mark tonight. He is 5lbs 1/2oz.
We are so close to going home yet it seems so very far away. My Josiah called me last night sobbing that he couldn’t sleep because he missed me soo much. I know all the kids at home feel the same way. Home is not coming soon enough even though it is at least now in sight.
Thank you to every one who has been so wonderful during our almost month long stay here.
December 30, 2009
Tayla and I are rooming in! She had her feeding tube taken out today. She had been taking all of her feedings by mouth for a day and a half. We are rooming in in a special room in the NICU so we are close to Ruben.
Ruben has taken three complete feedings by nursing in the last 24 hours. Most of his other feedings he has taken at least part of it by mouth. One of his feedings he took 70cc. he needs to take at least 48cc. He was a big eater for that feeding. Then he woke up early for the next feeding and took 34cc the next time. For those of you (which I’m sure is most of us) there are 30cc in an ounce.
December 29, 2009
We are well on our to going home! Tayla tookthe last six feeds all by mouth. She has been doing great since yeasterday. We are talking about doing what they call ad-lib tomorrow to see if she wakes herself up and regulates her feedings. If she does a good job usually it is about 24-48 hours until a baby goes home. Ruben slept most of the day but took a full feed by nursing! We tried using a bottle with him but he seems to do better nursing. So we will stick to nursing for him. Tayla on the other hand is taking most of her feeds by bottle and doing quite well with it.
The kids came down again tonight and it was good to see themagain as I didn’t get to see them much yesterday. Shelby got to feed Tayla tonight and she was amazed at how small the babies are compared to Cade. Although it wouldn’t take much for any baby to be smaller then her baby as he is 16lbs at 3months old.
December 28, 2009
One good thing about writing every day I always know what the date is. Since I haven’t looked at a calander in over three weeks.
The babies had a good day today. Tayla took about five complete feedings by mouth and the rest she took at least part of by mouth. Mostly through using the bottle but she did have one time today that she nursed and took 20cc her feeding right now is 50cc. Ruben took a bottle for the first time today. Today was the first time that he had enough energy to try something else after he nursed. The last several days if he is awake he will take about 20cc nursing before being tube fed. His biggest number so far for nursing is 26cc and his feeding right now is 46cc. They both seem to be beginning to get it!
They continue to gain Ruben is 4lbs 13oz and Tayla is 5lbs 7oz.
If we continue on the path with continuing to feed so well I dare hope that we will be coming home this weekend.
Shelby and Cade are leaving for home I guess today as it is after midnight. For those of you who are going to yell at me for not being in bed I just got done feeding babies and I still have to pump. Shelby had planned on leaving on Christmas so that Clint, Cade, and herself could spend Christmas together unfortunately that huge snow storm kept her from being with her husband. Not to mention that the snowstorm knocked out the power at their house so they had no powder, no heat, and a water pipe broke so they didn’t have any water either. They have everything back now. Shelby does have to go home as she is going back to work on the 4th of Jan. I hope that she will have enough time for the three of them to settle back into life before she has to go to work. Thank you Shelby for being with the kids that last two weeks!
December 27, 2009
The babies did a great job waking up and eating today. Tayla took over half of all of her feedings today by mouth. We are to a good start. I’m hopeful in just a hand full of days we will see them eating all by mouth. That is what I have seen of most of the premiees when they get it they get it and quick.
The family was finally dug out today and they will be coming to see me tomorrow! It has been almost two weeks since I have gotten to see the kids. I can’t wait.
December 26, 2009
We are just hanging out. Nothing new to report. I’m just waiting for them to wake up and eat which I am told is how it happens with premiees. Ruben was 4lbs 10 1/2oz last night an ounce and a half away from birth weight! Tayla is still 5lb 4oz we are assuming that it is because she was weighed on a different scale the night before. That’s ok she still put on 3oz the night before!
December 25, 2009
Everyone has been wonderful with our family at home. Thanks to some wonderful neighbors our children will get to enjoy Christmas. Thank so much to Bob and Melody and to the Marsceau Family!
I don’t have much to report as far as the babies go. Tayla is back to birth weight. Ruben is still gaining slow and steady. He gained another oz last night so he is up to 4lbs 7oz. They took Tayla off the Billi lights today-all of them. They are still continuing to take part of their feeds by mouth. It seems like it is going to take forever before they are eating all by mouth and we are going home. We all need to be back together again soon. We have been here for 18 days already.
December 23, 2009
Looking at the picture of me with them I am trying to figure out where I put them. Yes, I was big but, was I really big enough to fit them both in me? Yes, I still look that tired. I am averaging about 5-6 hours of sleep a night 45min-2hr at a time. Part of the time I am sleeping in the NICU as it is so far from my room to the 3rd floor NICU that it is too hard for me to wake up and walk that far. Surprisingly, I am doing ok physically.
The storm has hit. I keep hearing more and more snow fall totals that they are calling for us to get. The last I heard was 14-20 inches! Our family will not be together for Christmas. This is very hard for me as I’m sure you all know I don’t leave my kids.
Ruben and Tayla continue to gain slow and stedy. Ben is 4lbs 6oz and Tayla is 5lbs 1oz. They both did great feeding by mouth today. Ruben took over half of 3-4 of his feeding by breast and a couple of them he finished by finger feeding. Tayla does great at the breast but she doesn’t seem to transfer any milk. She took as much of her feeds by finger feeding and bottle as Ruben did.
I’m sure many of you are wondering about the whole PKU thing. Ruben’s came back fine Tayla’s is slightly elevated. The NICU docs are freaking out about it and I’m telling them it is no big deal (which the specialist who we have worked with in the past and came and consulted with me is on the same page as I am) That doesn’t seem to matter the NICU docs think Tayla is going to die. Unfortunately the specialist is out of town for the next week so it is making dealing with the NICU docs very challanging since they seem to think I’m just a dumb mother. Yep, dumb mom who now has five children with the same thing. With only 1in 16-20 thousand getting PKU and even less getting what my children have most doctors have never seen it or will never see it the whole time they are in practice. There is so much misconception about the difference between PKU and what my children really have which is the varient form called Hyperphenyalanimina (sp?) They do not get the high levels which are what cause the issues. For the most part they just need to be monitored. Breastfeeding is best as it has a much lower level of Phenyalanie (sp?) This is the amino acid that builds up in the blood.
Tayla billierubin is still up in fact it is going up. She is still within normal range we just need to make sure that we don’t pass that. So she is back on a billi light along with the billi blanket. Hopefully when they repeat her level on Christmas it will be way down and she can finally be off the lights. We are assuming that her levels continue to be high because of her high hematicrat. Basically she has more red blood cell to break down.
Keep us in your prayers. Pray that they continue to take their feeds by mouth, that Tayla’s pku level stays low, and that Tayla’s billirubin goes down, and that we get home very, very soon! Also continue to pray that I say healthy.
December 22, 2009
Tayla and Ben are up in weight Tayla is 5lbs and Ben is 4lbs 5oz. Tayla and Ben both took a full feeding by mouth today! Tayla took over half of the next two feedings by mouth. We are syringe feeding and we did use a bottle with Tayla today. They are still getting my milk. We need to be home and it looks like the only way that will happen is if they get rid of the feeding tubes. The whole family was hoping that we would at least be able to spend Christmas together at the hospital but with the blizzard of the decade looming it is not looking very promising. What are the odds I would go into premature labor out of the blue in a snowstorm and then we would have the blizzrard of the decade for Christmas. Really, I need to write a book our life never ceases to amaze me.
December 21, 2009
It looks like we will be here for Christmas. The docs said no way to going home. In fact they are saying another two weeks. I still don’t feel like they are giving me a good reason. From what I understand the babies issues are nothing a home health nurse can’t handle.
They are both doing so well. I don’t know how we can justify keeping our family seperated, stressing me out, and the cost of being here. I am feeling very discouraged today. How do you deal with Christmas in a stituation like this with all our other children? Shelby needs to leave soon then what? When did family centered care get replaced by liability concerns?
December 20,2009
This was day 12 here.
Well, keep us in prayer. Our primary doctor and the admiting NICU doc are meeting tomorrow to decide if we can go home early. Even if they agree we still have the issue of getting home health care which sounds like it could be a little bit of a concern.
The babies are doing great. They are both still gaining. Tayla is up to almost 4lbs 15oz and Ruben is up to almost 4lbs 5oz. They seem to take turns with everything-weight included. She’ll gain an oz or two in a day when he’ll only gain a 1/3 of an oz and then the next day it will switch and he’ll be the big gainer and she’ll be the little gainer.
They are both nursing well today. Ruben woke up for almost every feeding to nurse. I’m not sure if they are getting much of anything as transfering the milk is usually an issue for premiees. Although there were several times today that I know each one of them was swallowing milk. They both finger fed today and took about 5cc well. I am hoping that maybe they can get strong enough to take the rest of their feeds by syringe instead of a tube. This hope will take a little time and if I’m lucky in the meantime they will just wake up and nurse which is normal for a premiee to just get it one day.
Being here is getting harder and harder. Since they were move to the 3rd I am sleeping on a recliner for part of the night as it is so far for me to come down at night for feedings. I’m really surprised that I am sleeping as well as I am in the NICU since it is never quiet with babies crying and bells constantly going off. I have been at every feeding since they started getting food the day after they were born every 3 hours 24hours a day. It would be so much easier if I could get comfortable near them.
The kids haven’t gotten to see them since they were born which has been very hard for all of us. At least they got to see them on their birthday. I’m not sure if they hadn’t seen them at all that they would be taking not being able to go into the NICU as well as they are taking it. The kids are troopers but they are fading and need their mama and their new siblings home.
December 19,2009
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.
December 18, 2009
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.
December 17, 2009
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.
December 15, 2009
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.
December 14, 2009
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.
