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7/10/2007

At this point I can't remember who I have given out information to so here is an update for everyone.
Sorry to the family members who have not been kept up to date. It has been a little crazy and we have been a little distracted.
Kari and I went to the Hospital on the 2nd because she was going into labor again for the third time. On the third we expected the doctor to perform another decompression (drain the excess amniotic fluid). At the ultrasound the doctor told us that twin "A", that is Madison, was decompensating (her heart was working so hard that it was starting to slow down and might give out) and the babies needed to come out. In less than an hour we were in the operating room and the girls were born at 9:49 (Madison) and 9:51 (Jordan).
The twins at this point were 30 weeks old and not able to breath on their own. They were stabilized, intubated (had a breathing tube stuck down the throat) and moved to the NICU (Little baby intensive care). They are both doing fairly well at this point. However, there have been some ups and downs and will likely be more to come. It was disturbing to see my offspring lying in a tiny bed with more wires and tubes running to them than my computer. I didn't get a real good look at their faces till about the third day when they removed the breathing tubes and gave them oxygen through the nose.
Jordan, who was 1 lbs. 13 ozs. needed two blood transfusions and still seems to be struggling more than her larger sister. She had not been able to digest any milk until yesterday and the doctors were afraid that she had an infection, which earned her a spinal tap among other things. Jordan seems to be doing better now although she still has a heart murmur and the doctors have not ruled out surgery. Madison was 2 lbs 4.8 ozs. has had a somewhat easier time. The doctors were concerned about her kidney function (the Kidneys had been overworked along with her heart due to Twin to Twin Transfusion Syndrome) and they thought that they might have to drain the fluid from around her heart (from the decompensating thing) but it looks like she has absorbed it and is doing well. Madison is eating more and gaining weight quickly. Her urine output is up and the doctors are less concerned with her kidneys. Both girls had a bit of Jaundice but are both doing better in that respect as well.
Meanwhile, Kari was spending five days recovering in the hospital (she needed a blood transfusion also) and I was running back and forth between her room and the NICU to deliver information. I brought Kari home on Saturday and we have been driving downtown everyday. Leaving the twins at the hospital while we went home was one of the hardest things that we have ever done. It looks like Madison and Jordan will be in the Hospital till late October or early September. (The rise in gas prices were only an annoyance till now.)
It has been an emotional time so sorry for those should have been called but were not. And thank you all for all the prayers that you have been sending up for us.
7/12/2007
Thanks everyone for all the support, prayers and well wishes. It is nice to know that we have so many people praying for our little girls.
Both girls are doing well and gaining weight. Madison is still "eating" better than Jordan. They are fed milk/formula through a tube and the nurses measure how much has been digested every three hours.
Jordan's temperature has been a little on the low side and so we have not been able to hold her yet. She is now off the antibiotics and her cultures have been negative for infection. I guess that spinal tap wasn't necessary after all. However, I can't fault the doctors for being overly cautious. I have learned that the blood/brain barrier is very thin in children this age and any infection can easily spread to the brain and spinal cord (Meningitis). At the last ultrasound of her heart they saw that the Ductus (the valve that connects the umbilical cord to the circulator system) had not closed. They said that it was intermittently open and that they were not going to treat it (with surgery) at this time. I am not sure when the next ultrasound will occur but I hope they find that valve has closed by itself.
One of the doctors has ordered an EKG on Madison to test for Wolff-Parkinson-White syndrome (we had to look that up on the internet). Basically it is two electrical pathways through the heart instead of one. This can cause tachycardia (High heart rate). We have not heard the result of the EKG yet and don't know what it will mean if she has it. From what I read on the net, some people have it and it causes no problems and some need surgery to correct it. That surgery entails destroying some of the heart tissue with high frequency radio energy to break the abnormal electrical pathway. (It makes my head swim to think of it.) But we don't even know if she has that yet.
We are trying to be positive and have every reason to be, but are also trying not to set ourselves up for disappointment if there are complications. We have seen several babies wheeled out of the NICU on their way to surgery and it is sobering. The staff doesn't share information about other babies and so we can only guess at what the problems were and hope that doesn't happen to our girls.
More information will be forthcoming.

Mark


7/14/2007
We finally got some information regarding the EKG after three days. One of the doctors called and told us that if anything had turned up in the EKG the cardiologist would have called back right away. The doctor we spoke to tonight in the NICU was surprised that they even ordered that test in the first place. Apparently when they do an ultrasound of the heart they use a three lead EKG to make sure that they see the heart beating at the same time the electrical signal is telling it to beat. The three lead EKG is not very accurate for diagnosing and for some reason they thought they should have the 13 lead EKG done. At any rate it looks like we got a little worked up over nothing. Right now both girls are doing very well and I am sure that the prayers have helped. They are both tolerating their feedings better and are up to 5CC every 3 hours. Both girls have surpassed their birth weight which is great. Jordan is still having trouble controlling her body temperature and has be "demoted" from the isollet (incubator) back to the warming table. She was too cold to come out to play tonight but Madison got to snuggle with Mom for about 30 minutes. (This does wonders for Kari...I hope it is doing as much good for Madison.)
We had a little bit of a scare last night. At 2:30a.m. we got a call from the hospital. It is never good news at that time of night. But the nurse had picked up the wrong chart and was trying to reach the Young family. That is the little boy, Ollie, who we saw carted off to surgery the other night. His warmer is parked right next to Jordan's.
We saw Ollie tonight and he didn't look very good. His whole tiny body was swollen up like a balloon. The NICU staff is unable to share information about other babies so we don't know what he had surgery for or how he is doing but it looked like he could use some prayers too.
Right now we are on a bit of a high because the girls are doing so well but the doctor cautioned us that there will be "bumps" in the road ahead. We are trying to not get too high or too low. But right now:
Eating well
Gaining weight
No bleeding in the brain (Which I guess is not uncommon with kids this young.)
Blood pressure is good
Both on less than 30% O2
No Apnea/Bracardia (nurses call it A's and B's and it means forgetting to breath and I'm not sure about the spelling) since the 10th
Pray for smooth sailing ahead.

M


7/21/2007
Just got home from seeing the girls.
I got to hold Madison tonight for about 45 minutes. I think I could have stayed there all night. Her little noggin is so small that I can almost fit my thumb and index finger around it. Also this is the first time I have really taken a good look at her while she wasn't wearing a hat. Boy she has a lot of hair.
Madison has broken the 3 pound mark and is no longer on the CPAT (that is the two big hoses taped to nose). Instead she is wearing the much more comfortable nasal canula (not sure if I spelled that right). She is now eating 18 cc every 3 hours. She is starting to look like a real baby.
Jordan, while still not doing as well as Madison, is doing pretty well. The last x-ray of her lungs shows much less fluid. They are keeping her on the diuretics a bit longer as a precaution. She is now getting 10 cc of milk and seems to be digesting it with out too much problem. We didn't get her weight this evening. Hopefully it is going back up. The doctor was a little concerned that she was losing weight. Kari and I think that the diuretics might have something to do with that.
Kari didn't get to hold Jordan as long as she would have liked. Ollie, Jordan's next door neighbor required some sort of procedure and Kari had to leave the pod.
Please give up some extra prayers for Ollie. I didn't think that he could look any worse than he did last week, but he does. He must be swollen to twice his normal size. It is heartbreaking to see that little guy struggling for life. Again, they don't tell us what is going on with other babies but the nurse told Kari that he is Very sick.

M

7/25/2007

Just got done with a trip and went to visit the little ones. They were being fed and I was just too tired to wait around to hold them tonight. (I felt a little guilt about that, but I did get up at 3:30)
Madison continues to do really well. They have removed her PIC line (the IV that went to the larger vessels next to her heart) so all her nutrition is from milk now. She is up to 27 cc per feeding and continuing to gain weight. The doctor says he has no major concerns at the moment. He says the risk of Necrotizing Encolitis go way down at 34 weeks and we are almost there. They get their eyes tested next week.
Jordan is doing well also. She is up to 16 cc per feeding and still has her PIC line in for extra fluids. She is doing well enough that they have discontinued the lipids (fat) that they were using as a supplement.
I missed writing down their weights tonight but they are both gaining.

M

7/28/2007
Great news! Madison is doing really well and the nurse expects her to be moved to the level 2 nursery in the next 72 hours. She now weighs 3 lbs 7.2 oz. She is back on the nasal cannula (that is a big step up from the CPAP) and has had no A's and B's. The little piggy is getting 31 cc per feed and they should start bottle feeding soon.
Jordan now weighs in at a hefty 2 lbs 9.7 oz. Down slightly from last weigh in but we are not discouraged. She is up to 19 cc per feed, which is a "full feed" for her weight. Preemies should get 150 cc per kilogram.
I held both girls tonight and that sure does help to lift the spirits. I can't wait till Jordan is off the CPAP. It is difficult to keep the prongs in her nose while you are holding her. It sure will be nice when I can hold my kids without being tangled in a rubber jungle of hoses and wires.

M


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