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Homecoming

Jordan is home! It took longer than expected to get her discharged (which should have been expected) but at the end of the day we have our little girl home. It was about a seven hour ordeal and the big girls were very good ... for most of it. The last 30 minutes of the car ride home Reagan had a full on screaming fit, which continued for most of the next 2 hours as we were trying to get Jordan settled in and fed.

We are feeling a little scatter brained at the moment and the reality of the work ahead has really sunk in, at least for me. I think I need a nap already.

Rylee is fascinated with the new baby in the house and enjoyed petting Jordan's head while I fed her. This is going to be lots of fun. More fun when we don't have to feed them every 3 hours, but I find it to be worth the lost sleep.

Madison should be home on Monday. I don't see any reason at this point that there will be any more delays for her. The only reason she is not home today is because the doctors wanted to see how she would do without O2. If they had left her alone, like Jordan, I am sure that she would be home now too. I don't fault the doctors, but it is a little frustrating. I think that I am having a harder time leaving Madison at the hospital than I did leaving both there initially.

I will post some photos when I get a bit more time. (maybe next year...Ha ha ha ahhhhh)

Today is the day

I started that last post yesterday and got interrupted. But today is the day, at least for Jordan. We are supposed to pick her up around 1 p.m. Kari is very pleased, as am I. I feel the need to go get her now, before they change their minds.

The doc says that Jordan would have come home tonight but she has a fever. Actually both girls have a fever of around 101 most likely due to the immunizations. Assuming that was the reason for her fever, and the fever subsides, the doctor's are discharging Jordan tomorrow morning.

Kari is out stocking up on formula and a few other last minute items and says that now she is excited. I hope we haven't gotten our hopes up (again) for nothing. We were trying to rope the some friends into watching the "big girls" when we go to pick up Jordan but have not had any luck so far. I guess it will be a family affair.

Madison should be coming home on Monday. I guess the work really starts now.

I did manage to get time off from work, but they are not being gracious about it. I would have thought that since their biggest philanthropy is "The March of Dimes" that I would get a little more understanding. Every time I talk to the chief it is as if he has never heard of me. I feel like I am getting a guilt trip even though I am allowed this time off per the federal family leave act. I am quite disappointed at the the way I have been treated. However, I am getting what I want, just not with the smile that I was hoping for. (Sorry to vent there, I just had to get that off my chest.)

Any day now

I saw the girls last night. Madison is off oxygen again. However, she had an A and B while I was there, so I am guessing that she gets another 5 days for misbehaving. We have not spoken to the doctor this morning, but I think that we may be able to bring Jordan home tomorrow. We (or at least I am) on pins and needles and waiting for the doctor to call to give us the sleep study results is killing me.

Madison is now 5 lbs. 9 oz. and Jordan is 4 lbs. 12 oz. It is really amazing how fast they grow.

Kari just told me that she is not on pins and needles and that she doesn't think they will be coming home tomorrow. I guess we will see.

I will now go stare at the phone till the doctor calls.

What do we do now?

I just had to share this story that Kari related to me. Yesterday Kari was visiting the girls and as she was holding Madison she was watching a young Indian couple preparing to take their first born home. Their nurse was busy feeding another baby at the time and the conversation went something like this: (you have to imagine this with a heavy Indian accent.)

Indian Father: Do I bring the car seat back up here?

Nurse: No, you just needed it up here for the training.

Indian Father: So I put it in the car?

Nurse: Yes.

Indian Father: Then how do we get the baby to the car?

Nurse: We will put your wife in a wheelchair and she will hold the baby.

Indian Father: Then I take the car seat out to put the baby in?

Nurse: No, the car seat stays in the car.

Indian Father (with a slightly terrified look): What do we do when we get home?

Nurse (to the other nurse): Will you finish feeding this one so that I can help them?

While I did not see this exchange, I got a pretty good laugh out of it. I could just picture the expression on his face. I can picture it because I know that I have had that exact look on my face. And It is nice to not be the novice anymore.

So far we are still on track for bringing the girls home on Friday. Assuming Jordan's sleep study goes well and Madison continues with no A's and B's.

Kari is feeling skeptical. I think that it might actually happen.

We still need another oxygen machine for Madison and we have not heard from those people yet. However, we did get all of their prescriptions filled. It took the pharmacist two trips to the back to bring it all to the counter. We've got caffeine, Diuril, potassium, sodium, iron, vitamins, Reglan, Ranitidine, and a few others that I have forgotten. We could open our own pharmacy here. This should be interesting I can't even remember to take my own vitamins. Some of these are once a day, some are every 8 hours, some are every 12 hours, some are to be mixed with formula, and some are given directly. We are going to have to be more organized that we are now.


Madison sleeping like a log.













Jordan in new warm jammies.










It is really a bummer to see them both back on oxygen. I guess it seems like more of a set back that it really is, but it was so uplifting to see them without those darn hoses.









This is the first time that either of use has held both girls at the same time. I was a bit surprised that they let me hold them both. There is still big concern about infections spread from one to the other. In Level 3 we weren't even allowed to hold them both on the same day (when we were doing kangaroo care). I think that Kari was a little bummed out that she didn't get to hold them both together first and I can't blame her for that. To tell the truth, with all the rules, it just had not occurred to me to ask to hold them both until tonight. I can't wait to get them home, where nobody can tell me what to do with my own kids.

Breakdown!!!!

My husband told me to let it out, to let it go, I'm having a hard time doing that. I state facts and not feelings. He has been though so much. He didn't know if his girls were going to live, and he had me to worry about. Not only seeing his girls rushed out and intubated he had to see me get blood transfusions. And he saw what I thought was having a heart attack. I had had heart issues before, but none like I had in the hospital. The test results were inconclusive. So I guess I have been holding a lot in. Anyway as some of you know, the girls were suppose to come home Tuesday or Wednesday.... not happening. Jordan choked on milk and had 3 A's and B's in a row. Madison had an A (apnea) during her sleep study. Five more days optimistically. Hubby is so good talking to the doctors, he says optimistic but next week maybe and they say yes. I know they don't know... but damn-it why get out hopes up!!!! I know that at the beginning they said due date, which is Sept. 7th... Don't raise my hopes up too soon! They shouldn't even be here yet!I know they are doing tremendously for there situation, but I want them home now!!!!!!

You can not know how traumatic it is to leave the hospital with no baby let alone babies. It kills you inside and its getting to me. My husband is right... we have them on layaway. I'm ready to pay the bill, but they won't take it!

This just sucks!!!!! And I'm mad at the world!!!!!

Whatcha thinkin

Since we are not emailing the updates anymore, we are kind of missing the feed back. Please feel free to add comments or Kari has added the "chat box" on the right hand side of your screen. Just type your name in the first box and you post in the second.

Kari went to see the girls tonight. Chad, Jordan did a "Cannon", you remember the drive back from Ouray? It was quite a mess. Jordan weighs 4 lbs. 8.6 oz and is 17.5 inches long. She has had no more problems so far. Which lends credibility to my "going down the wrong pipe" theory. She is down to 28.5 degrees on her Isolette and if she doesn't have any problems tonight she will be in a crib tomorrow.

Madison is OVER 5 LBS. She is now 5 lbs. 4 oz. and 18.5 inches long. No apnea or Bradycardia today.

Both girls get their echos and kidney ultrasounds tomorrow. Eye tests will be on Tues.

Kari was a little down earlier. It is amazing what holding those babies does for her attitude.

We can't wait to get them off lay-away.

Fun with animals



"I have found that the dogs do funny things when I shine the flash light around."


















"They run around and make lots of noise."














"It makes me laugh this hard."


















"Those dogs are my pals."












Reagan the feral feline wrestling champ Vs. Rascal the shedder.

















"I wait in my corner till the bell and then I come out fighting."


















"I go for the take down early. I know that this cat doesn't have a chance."













"I always pin that cat in less that 10 seconds."













"That cat knows who is boss."





Hurry up and wait

We really thought that at least one girl would be coming home during the middle of this week. I have been trying to balance optimism with realism and trying to prepare myself for set backs. It hasn't worked. I was sure that we could bring one home this week.

We spoke with Dr. Stafford on the phone today and both girls are still having issues. Jordan had an episode last night. Well, three episodes actually, while feeding. I am guessing that she just got some milk "down the wrong pipe" and hope that she will still do well on her sleep study. Jordan got her last couple of meals last night through a tube and she is back on O2 for the time being. They also decided not to put her in the crib yet, with all the other issues they thought that she had enough to deal with.

Madison had another Apnea during her latest sleep study. They won't have the official results for a day or two but I am not expecting it to show a stellar performance.

At any rate, nobody is coming home till at least the end of the week. And I think that the end of the week would be very optimistic. I don't expect that the girls will be ready till at least next week or maybe longer.

I know that the doctors are not trying to get our hopes up and then dash them back down, but it sure is frustrating.

Today Madison is having her sleep study do over. Tomorrow Jordan is doing her sleep test...hope she studied.

Monday both girls get an echocardiagram to check their lungs. Last time Madison's was clear, and Jordan's had a little bit of lung disease left. Also both girls are getting an ultrasound on the kidney function.

Tuesday both girls are getting their eyes checked again. Last time Madison was good, and Jordan had mild to moderate ROP.

They will both be getting their vaccines. Both are just on oxygen for just feeds. Both are eating well. Jordan likes to be cozy, so I need to bring in footed pj's. I did laundry last nite and realize we need more pj's under 6#'s. I had bought 6 and realize this is only 3 for each girl and with Madison having reflux I could be doing laundry 24hrs a day.

And hopefully...Tuesday night or Wednesday both girls will be coming home. That's the plan Stan!

Thank you Cannon and Logan for the wonderful Happy Birthday message. Thank you momma, can't wait to see you and Papa Wayne Saturday. Thank you wonderful hubby, for calling and remembering. Thank you Meesh! Don't work to hard tonight. Thank you Grandmom and Papa, the blue tooth conversation was a bit spotty, talk to yall tomorrow.

Yesterday, I got trained on the apnea machines. Very easy. And today they set up Jordan's oxygen at the house.

Jordan is now 4# 1.8oz and off her oxygen!!!! Wouldn't ya know it... She is doing very good. Now we are just waiting for her to be weaned down on temperature, so she can go into a crib.

Madison is 4# 13.3oz and has had no A's or B's. They gave her an extra shot of caffeine.

The doctor hasn't called yet, so not sure what they are focusing on next. Mark gets home around 11pm tonight, so I will head to the hospital when he gets home.

That's about all I know right now, will update tomorrow morning.

Madison's sleep study came back and it was not good. She had 173 desaturations (desats - the percentage of O2 in her blood drops below about 90%) over the six hours of the sleep study. The doc said they sometimes see as many as 30 or 40 and she was shocked to see so many. Obviously these were not long enough or bad enough to set off the alarms, but disturbing none the less. They don't think that it is reflux and are planning to up her caffeine dosage and put her back on O2. Her average saturation is 96%, which is good and they hope that with the increased caffeine she will not need the oxygen. Madison will get another, longer sleep study in the next few days.

Jordan will not be coming home on Friday. She is still in the incubator and has not had her sleep study done yet. The sleep studies are read by pulmonary specialist over at Texas Children's and it can take awhile to get results back. Even if the study comes back "good" it will take some time. The temperature in the incubator has to be slowly reduced to make sure that she can control her own temperature and that takes time. When she can control her temperature she will be moved to a crib.

The doctor was still pressing for discharge on Friday, but when I told her that I was sceptical and that I needed to give my employer notice she said maybe over the weekend. The reality is that they just don't know yet, but want us to be ready.

I knew this was going to happen and it still feels like a complete downer. It is times like this that I have to remind myself how well they are really doing and we were told at the beginning not to plan on bringing the girls home until their due date at the earliest.

Jordan is ahead by a nose now. The doctor said today that Jordan may be ready to come home on Friday. Madison, who has been doing better from the start, is still having A's and B's and we don't know when she will be released. At any rate Kari and I, with the "big girls" in tow are heading downtown for training on the apnea monitors tomorrow morning. I think that training will be for the portable monitors and on Thursday people are supposed to show up with all the home equipment. I am off to Mexico tomorrow afternoon and will miss the training on Thursday. It didn't occur to me till tonight that it might be a requirement for me to be there on Thursday. I guess we will find out.

I fed both girls today and they are both eating well. Boy, are they getting big in a hurry. Jordan's blood transfusion went well and they think with this last one that they may be able to take her off the oxygen soon. Jordan should be moved to a crib tonight, instead of the incubator. Although she is coming along very well, I find it hard to believe that she will be home on Friday. She still has to have a sleep study done and Madison still hasn't gotten the results from hers. So I will be pleasantly surprised if Jordan actually comes home Friday.

The big bind for me is when to use the family leave. I should be able to move my vacation but all the rest of the time I take off will be unpaid. So this "they will come home this week...no, they will come home next week." has been a little frustrating. I need to give the chief pilot a little heads up, but don't want to lose out on pay if the girls are not going to be coming home.

Kari spoke with the doctor yesterday and yes, the delay continues. Maybe next week for the home coming. Maybe Madison really doesn't want to leave her sister at the hospital. Again we so badly want them to come home, but want them to be ready.

On the home front all is well. The two big girls are growing like weeds. Reagan is really developing. She has started to utter a word here and there. It seems fitting that "airplane", said with her little index finger pointed at the sky, is one of the first.

Rylee has become good at opening doors and is an early riser (not a good combination for us). Fortunately, she isn't able to open the doors leading outside yet. She likes to get up before anyone else to empty the kitchen drawers and unload the book cases. This morning I woke up to a breakfast bar being stuck in my eye. She can get into the pantry but has some trouble with unwrapping those tasty treats. It is nice when she climbs into bed with us, at least for the first 15 minutes, until she starts squirming. It is not so nice to wake up to a distant crashing sound somewhere in the house. I like to think that we have the house pretty kid proof, but this little girl continues to amaze me with her ingenuity.

Another lesson learned, Rylee should not be allowed near the pool pump without close supervision. At some point yesterday, while we were playing in the back yard, she adjusted the valves so that all the water in the jacuzzi would be pumped into the pool. This morning the jacuzzi was as dry as a bone. No harm done, but it was a bit of a shock.

Kari and I were struck this evening by how lucky we have been. As we reviewed the last couple of weeks and some of the conversations that we have had with different doctors, it hit me that we could have easily lost both of those little girls.

Kari saw Dr. Ritter, the doctor who delivered the girls, last week and he was very pleased that the twins were doing so well. He indicated that he had been concerned about weather or not he had made the right decision to take the girls out that early. At that point the girls future, at least in his mind, was very uncertain. For the record, we think that he did make the right choice.

I went to visit the girls yesterday before work and chatted with some of the nurses while I was feeding Jordan. We got on to the subject of how lucky we felt and how scary it was having the girls in the level 3 NICU. I related the story of little Ollie who lived next to Jordan and how I didn't think that he survived. One of the nurses confessed to being there when the little guy passed away. We had suspected that he was gone, but to know for sure was a bit of an emotional blow. Kari and I became attached to him in that short time, prayed for him lots, and really hoped that he would pull through. I feel terribly sad for his family and also very fortunate that our girls didn't run into any major complications.

I want to thank everyone again for all the prayers. I know that they helped. I feel that we are past the point of any life threatening complications and are just waiting for the girls to grow a bit more. It has been a bit frustrating. At first it was hard to believe that we were going to be able to bring Madison home. Now that we have come to grips with the fact that we are and soon, the delays are troubling. Madison is still having some trouble with the apnea. Although, some of the episodes have been caused by the doctors lowering her oxygen, during feeding, to see if she was ready to go without. We are not yet sure if these count toward the 5 days that she must be apnea free before going home.

The last I heard from Dr. Stafford on Saturday was that Madison should be able to come home early this week and Jordan toward the end of the week or maybe next week. They will both be on monitors for the apnea/ Bradycardia and Jordan on oxygen. Madison will likely require oxygen only when feeding.

Keep your fingers crossed that it will be soon and that we wasted our time taking that CPR class.

Madison














Jordan














Jordan's hand with Dad's ring. I should have taken this shot before they got so big.













Madison is doing much better on the reflux meds. The doctor is going to do her sleep study this weekend. We are one step closer to bringing her home. She is now 4 lbs. 11oz.

Jordan is low on Hematocrit witch may be part of the reason that she is still breathing so fast. Last night she was breathing too fast to be bottle fed. I guess that I kind of expect two steps forward and one step back at this point. She may need to have another blood transfusion before she goes home. She is now 3 lbs. 13 oz., two pounds bigger than at birth and almost to the four pound mark. It is nice to see her doing so well.

We are still hoping to bring them home together, but I think that Madison will be ready first. Madison may be ready next Tuesday.

We have found a pediatrician that we are comfortable with after a couple of interviews. I think that we will be pleased with this one. The first doctor that we interviewed had an office that was so filthy I thought that I may need a tetanus shot just for walking in there.

Reflux is good news

Madison had a G.I. exam today. They put some dye in her milk and then took an Xray to see if she had reflux, as they expected. She does, and that has been causing her to have the A's and B's. Now they are giving her Zantac to control the reflux and estimate that both girls will be able to come home on next Tuesday or Wednesday. Madison now weighs 4 lbs. 6.9 oz.

Jordan is up to seven bottles and will likely be getting nothing but bottles tomorrow. She is now 3 lbs. 11 oz. The doctors have kept her O2 at 100% so that she can spend her energy growing instead of breathing.

The medical equipment company should be showing up soon to set up all the oxygen and monitors. We have interviewed one pediatrician so far and have a meeting with another one tomorrow. After a two hour class, that provides about 20 minutes of information, Kari and I are fully trained in infant CPR. I think that we have most of the bases covered and can't wait to have our girls home.

Instead of hiring a nurse, I have decided to get a set of scrubs to wear around the house and start billing the insurance company for my time.


Mom with Madison



















Madison























Jordan












Dad and Jordan

Last night after our CPR class Kari and I stopped by the NICU to see the girls. We didn't have much time to spend since our neighbor was looking after Rylee and Reagan for 4 hours already and we needed to head home. The results of the latest eye exams where taped to their beds. Madison has no problems, but Jordan has "mild to moderate R.O.P."

R.O.P. is retinopathy of prematurity. This means that the blood vessels in Jordan's eyes have not developed correctly. The abnormal vessels can block out light and damage the retina by pulling on it, possibly even causing the retina to detach from the wall of the eye. I have learned that 50% of babies with a birth weight between 750 and 1000 grams, like our girls, get R.O.P.

The good news is that most cases of R.O.P. spontaneously cure themselves by three to four months after the due date. Some cases require corrective lenses before the first year and some require surgery.

So we are disappointed that Jordan has another issue to contend with, but optimistic about the outcome.

Setback

I just spoke to Dr. Stafford. She says that Madison doesn't want to go home without Jordan. Madison had another A and B this morning. They have been reducing her caffeine and don't know if this episode was a fluke or if she still needs the caffeine. At any rate, Madison will be in the NICU for at least 5 more days.

Jordan still needs to drink more bottles and control her temperature enough for the open crib. The doctor thinks maybe by next week she will be ready to come home. I guess I should not hold my breath. There could be more setbacks.

Over all I am very pleased with how the girls are doing and I know that they will be home before we know it.


The last couple of days have been very busy. Kari and I have been trading off going to the NICU. Because of my schedule and the shift change schedule at the hospital we have been keeping some odd hours. Kari didn't get home till 3:45 a.m. on Friday morning and I tried to let her sleep as long as possible before going to the hospital and then off to Honduras. I just got back in this evening and had a few minutes with my wife before she was off again. Since I got here at 9:30 p.m. Kari left at around 10:20 p.m. so as to arrive just before the shift change ends at 11:45 p.m. Tomorrow I am off to L.A. but should be back in time to avoid the shift change when I go down after work. Maybe we can get on a daylight schedule next week. We are trying to be there for as many of the bottle feedings as we can. It seems important to us right now.

As you know, Jordan got her first bottle on Friday. I was very pleased with how well she did. However, I was a little disappointed that I did not get to feed her. They called and said that if we wanted to feed Jordan her first bottle that we needed to be there by 2 p.m. I drove like a maniac (not really...just a few mph over) to get down there in time and then the therapist, after getting me into a gown and sitting me in the chair as if I would feed Jordan, proceeds to feed my daughter for the first time and says that they have to give the first bottle to make sure that the baby can handle one. It probably doesn't sound like a big deal, but it was quite a let down. I guess I was feeling a little of the "Don't tell me how to raise my kid" feeling. I think by now I can handle feeding a baby a bottle.

I just want to take my kids home and not have anyone else poke and prod them for a bit.

Quick post...very tired!

Jordan had her first bottle today, she took 31cc's in 11 minutes and did great!

As of last night Madison weighed in at 4# 3.4oz and Jordan 3# 4.8oz.

We have CPR classes scheduled on Tuesday and we are stocking up on diapers!

Hip Hip Hooray!

I am so over the moon shaking like a leaf in a Texas wind.

I just got a call from the girls doctor. Madison will be coming home the middle to the end of next week! She is now on 6 bottles a day. She has been taken off oxygen since noon yesterday. They stopped her caffeine and hopefully she will manage without it. Otherwise she may come home on caffeine. She (both girls) will be coming home on apnea monitors. (Thank God) They will call and set up delivery and training tomorrow or Monday. Mark and I will have to take infant CPR this week. Madison is now 4# .6oz. Wow! We need to get a great pediatrician (the neonatalogist will help us with that this weekend), carseats ready, oh my mind is racing!

Jordan is now 3# 4.2. Doctor wants her to keep her energy to grow so he is holding off on bottles at this time. Her breathing rate has slowed down to a likable level. So we just need her to feed and grow. I'm thinking she is about 1 1/2 to 2 weeks behind Madison, maybe less.

I am just so darn excited and nervous. We thought things have been crazy, and I'm realizing it is just beginning! Luckily Mark is scheduled to be off Monday thru Friday. We have a lot to do!

Jordan pulled her feeding tube out and almost choked herself last night. Even thou it is taped in place, if you give it a good yank it can come out. She had pulled the tube up until the tip was at the back of her throat and we suspect that her last feeding went into her throat instead of her stomach. At any rate, it was a good thing that she was on her side instead of on her back.
The nurse who saw this had just come on duty and was a little concerned that the previous nurse had not noticed it. She said that she would follow up with the charge nurse to make sure that it doesn't happen again.
This was the first time that I held Jordan with out her CPAP and it sure was nice. She seemed to like it too. Her heart rate slowed from about 160 to about 135 the whole time I was holding her. She looked very content.

Well I got the lawn mowed, but didn't get to the hospital till very late. However, I made it just in time to feed Madison. It doesn't seem like feeding your kid with a bottle would be a big deal, but it sure is a big step. The nurse says that she has never seen a preemie at this stage do so well with the bottle. (Our kids are exceptional, right?) Madison is getting chunky. She just broke the 4 pound mark.

Kari got home from the hospital around midnight and had gotten her second wind. That always seems to happen to us after we get to hold the girls. It makes it hard to get back on schedule the next day.

Jordan was too hot to hold (sounds like a song title). Her increased temperature was causing her rate of breathing to increase and so Kari was not able to hold her last night. Apparently the only people allowed to adjust the temperature in the Isollette are the doctors and so Jordan was forced to sweat it out until one showed up. Kari said that it helped when Jordan was placed on her back. However, when she is on her back she tends to pull off all of the leads for the monitors to which she is connected.

Kari says that it is really nice to have them in Level 2. They are situated right next to one another and she could at least look at Jordan while she was holding Madison. The other nice thing about Level 2 is that you can hold your children for as long as you want. In Level 3 you get 30 minutes only, to prevent them from becoming over stimulated. Although, I always thought that they looked more relaxed when we were holding them.

Madison continues to do really well. Kari says that the little pig guzzled down a whole bottle in 5 minutes. I think that she may be ready to come home very soon.

We continue to pick up interesting tips from the NICU staff. Last night Kari learned from one of the nurses that if you are having trouble getting a burp all you have to do is stroke the top of her head. That causes her to relax and the burp comes right out. Kari says it works like a charm. She also found that a binky in the mouth gets rid of the hiccups.

I am happy to report that Rylee and Reagan have learned teamwork. While I have been typing this they quietly let themselves into Reagan's room and completely unloaded Reagan's dresser. There was not a thing left in any drawer. It is amazing how much stuff fits into one dresser.

8/6/2007

I just got off the phone with Dr. Stafford and she has moved Jordan to Level 2. As with Madison the move is in status only at this point and she will be moved to the Level 2 NICU when there is an opening. This means that the girls will stay together, at least in the same nursery if not the same pod. That may not mean much to them at this point, but it sure makes Kari and I happy. It just seems right that they should stay as close together as possible. It will be difficult for us if we get to bring one of them home and leave the other at the hospital. It is likely that we will bring Madison home first, but you never know.
Jordan has not had a bottle yet because she is still breathing too fast. They X-rayed her lungs again and she still has some fluid. The doctor says that if she continues this way that they will start her on more diuretics on top of the ones that she is already getting. She may also be suffering from the lung disease that is associated with premature birth and/or scaring of the lungs from being on the ventilator when she was born. This should all be resolved with time.

Madison is doing really well. She is now getting three bottles per day. If she continues to finish them in less than 15 minutes (she has been finishing in 7 - 10 minutes) they will increase the bottle feeds by one per day until she is eating solely from bottles.

On the home front Kari got the SSI application done today and so we should have Medicade to help out with what our insurance does not cover. This is a relief since we keep getting letters from our insurance company saying "You may owe this amount to your service provider." And some of the amounts are jaw dropping. I would guess that we (the insurance company)will have spent at least one million dollars per child by the time we are done with this.

Rylee and Reagan are doing well. We have been working on "sharing" and have found that it is not a natural human behavior. We have also been working on "not pushing your sister down" and have found that this is a natural humane behavior.


I believe the one with daddy was taken Aug 1st.
The other was taken last night.

When I went in this morning, Miss Jordan was already off the cpap. She's beautiful! Of course I forgot the camera. As of this afternoon, she was doing well with the nasal cannula. Doctor said she may be ready to try to bottle feed in a few days.

I got to feed Madison her bottle today. She did excellent! Finished her 33cc's plus some extra in ten minutes and gave me a good burp. They think she will be able to take more feeds by bottle soon, since she is doing so well.

Look Ma, No Tubes

Great News!
Madison drank out of a bottle for the first time last night. She did great, finishing 32 cc in 10 minutes with no problem breathing at all. They will still run a tube down her nose to her stomach for further feedings. She will only get one bottle per day until she is strong enough for more. I guess they get tuckered out easily at this stage. She is now 3 lbs 11.4 oz. And to top it all off, she gets to wear clothes now. I can't tell you how happy we are with her progress.
Unfortunately I did not get to feed her that first bottle because another little girl was having heart surgery and the NICU was closed while that was going on. (I heard the doctors tell the parents that it went well and their daughter is as pretty on the inside as she is on the outside. I suppose that is comforting, but I am glad nobody know how our girls look on the inside.)
Jordan has broken the three pound mark. She is now 3 lbs 1 oz. I don't know if that is a major medical mile stone, but it sure is a major physiological mile stone for me. She will be off the CPAP some time today.

Jordan weighed in last night at 2lb 13.5oz. She is still eating 24cc's every three hours. The doctor called today and said they will try to take her off CPAP in a few days. She has been a very good girl with no A's or B's.

Madison was dressed in a hat, t-shirt, and blanket last night and they lowered her isolette warmer to see if she can maintain her own body temperature. As of this afternoon, she is maintaining well. She will also start bottle feeds. Her first try is tonight @ 8pm. Daddy will be there for it, although he doesn't know it yet. He gets in from Vancouver soon, and he will head to the hospital from the airport. I'll have him take more pictures.

Wanted to add a note about the older girls as well.

Reagan is cutting two more teeth, and doing very well with only minor fussing.
Rylee decided to expand her art mediums. She found sharpies! And she found they color very well on cabinets, walls, and herself. Luckily, momma found that baking soda paste took it off the cabinets and walls. I'm still working on her skin, although I have gotten it faded quite a bit.

More tonite or in the morning after Mark's visit.


Madison is officially a Level 2 "grower and feeder" even though she has not been moved upstairs to the level 2 NICU because it is full. She now weighs 3 lbs 10.2 oz. and has had no A's and B's since the 24th. She has been put on diuretics because of a little fluid in the lungs. The fluid was causing her respiration to go up to higher than normal levels.

Jordan is doing well also and we hope that she will be off the CPAP soon. She was down to 21% O2 last night (room air) and if she stays there for awhile with fewer A's and B's she can move up to the nasal cannula. It is much nicer to hold the girls without the CPAP. You almost need three hands to keep the prongs stuck in her nose and her head in a position that is not cutting off the air supply.
She had her PIC line (central line - the IV that went to the large vessel near her heart) removed. That is another big step.

Now they both need to continue to breath well and learn to suck, swallow and breath at the same time. Once they are getting 8 feedings from a bottle and can maintain their temperatures they will be ready to come home. It is anyones guess how long that will take. Some babies get it right away and some take weeks or months to figure it out.

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


Did you ever wonder how the mothers of premature babies are chosen?
Somehow, I visualize God hovering over Earth,
selecting his instruments for propagation
with great care and deliberation.
As he observes, heinstructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew.
Forrest, Marjorie, daughter. Patron Saint, Celia.
Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles. "Give her a preemie."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a premature baby a mother who
knows no laughter? That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown
in a sea of self-pity and despair.
Once the shock and resentment wear off, she'll handle it.
I watched her today. She has that sense of self and independence
so rare and so necessary in a mother.
You see, the child I'm going to give her has a world of its own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles.
"No matter, I can fix that. This one is perfect
She has just the right amount of selfishness."
The angel gasps, "Selfishness?! Is that a virtue?"
God nods.
"If she can't separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time,
she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--
ignorance, cruelty, prejudice--
and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel,
his pen poised in the air.
God smiles.
"A mirror will suffice."


Daddy and Jordan Lane 7~27~07
25 days old


Madison Kate 7~27~07
25 days old

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