Thursday, April 29, 2010 8:29 PM, EDT

Poor Elizabeth had a bad day! She hasnt been able eating enough with the bottle and the doctors were concerned that she wasnt getting enough nutrition so they decided she needed to have the feeding tube put back in. It took her nurses 4 tries, and then went to radiology and a dr took forever to get it in place. She was not very happy and neither was I!!!
They want her to get fed through the tube but we will continue to try and feed her with the bottle as well that way we are sure she is getting enough calories and nutrition to help her grow and keep her lungs growing/recovering.  Physical Therapy stopped by today and showed me some things to work on with her, to hopefully get her back on track developmentally, with holding her head up and learning to roll over. Still waiting on what the next step is, home or Cinncinati first. Hopefully we will know something soon.

Wednesday, April 28, 2010 12:12 AM, EDT

Elizabeth has been eating from the bottle since yesterday and seems to be doing ok with it, we worry alot that she may still aspirate so we are very particular about feeding her. Apparently you cant mix cereal with breast milk so the mixture she gets to eat now is: breastmilk, the neosure formula to add calories, and a gel substance to thicken it. They removed the feeding tube from her nose today, so one less thing one her! And a room finally opened up so we got moved out of PICU.

Monday, April 26, 2010 3:07 PM, EDT

Elizabeth had her swallow study earlier, she did aspirate on just thin liquid but when they added something to make it thicker she did well. So she can start having bottles again but the milk has to be thickened with cereal so that she doesnt aspirate and we have to give her breaks to make sure she is remembering to breath and swallow. So every 10 sucks we have to let her take a short break and then she cant eat for longer than 20 to 30 mins at a time, just to make sure she doesnt aspirate anything. She fell asleep as soon as the test was done, so she hasn't gotten to take a real bottle yet but I know she is ready too as soo as she wakes up!!! They will leave the feeding tube in her nose for a little while until they are sure is will do well with the bottle, but hopefully they will be able to take that out soon.  And she is down on her oxygen again to .8.
   They are ready to move us out to a regular room but the hospital is full right now so no rooms available for us, so we are in one of the SMALL rooms inside PICU for right now, but hopefully they will get a room for us later tonight or in the morning.
    Still waiting for her pulmonologist to stop by so we can disucss the Cinncinati trip and see what else needs to happen here before she can be discharged.

Sunday, April 25, 2010 11:35 PM, EDT

Just got home from visiting Elizabeth, and WOW does that child have a temper :)  Could it be the combination of two red headed parents???
    We think that she has been so fussy lately because she is realizing that she hasnt had a bottle in quite a while, even though she has the feeding tube she still doesnt really ever feel "full". They have scheduled her for a swallow study sometime tomorrow to see if she can take a bottle again, so hopefully that will go well and it will help comfort her to be able to eat "normal" again. We think that we will start discussing the Cincinnati trip tomorrow as well with the doctors and start getting a plan together for travel/appointments and a timeline for when we will be going. Other than that nothing new, she is doing really well down to 1.5 liter oxygen and keeping her oxygen saturation at 100%. Hoping to get some new pictures to post tomorrow.

Sunday, April 25, 2010 7:22 PM, EDT

Little late on updating, but Elizbeth was taken off nitric and CPAP yesterday and is back on a regular nasal cannula. She is doing well, wants alot of attention when she is awake for sure!

Friday, April 23, 2010 8:16 PM, EDT

Elizabeth is doing well today, continuing to wean off nitric and wean down on oxygen on CPAP.
 Wanted to let everyone know that they were possibly going to need the room we were staying in so we went ahead and "moved out". So we will not be in that room if you decide to stop by to visit.

Thursday, April 22, 2010 10:03 PM, EDT

After meeting with the Doctors our PLAN for now is: wean her off the nitric if possible lowering by 1 level every 4 hours if that works she should be off late Saturday sometime. Then she can try to wean off CPAP after shes off the nitric and hopefully go back to just a nasal cannula. They want her to get well enough to come out of PICU and go back to the floor to be monitored until she is ready to go home. Then they want us to make the trip to Cinncinati for evaluation and another CT Scan for the specialist in the lung disease to check her out and possibly see someone else to evaluate her pulmonary hypertension.
  I forgot to mention earlier that today marks her 1 month stay in the hospital (again).  Even though the past month has been unbelievably hard on all of us, I am grateful that at least we now have a diagnosis for her problems and are working towards treatment. She has been through so much and continues to show us just how much of a fighter she is!! Her personality is really starting to show, the nurses say that she is spoiled, she cries out if she wakes up and no one is standing by her bed :)
And she wants you to hold her pacifier in her mouth for her, good thing that glow worm is a good prop for it.
We hope all of you know how grateful we are for your support, help, and concern. We still have a long road ahead of us!

Thursday, April 22, 2010 3:04 PM, EDT

Elizabeth is still in PICU and still on the cpap machine. They have weaned her O2 requirement from 100 down to 45 and she is doing well with it. Still weaning thepain/sedative meds, getting sildenafil for the hypertension and the steriods they started yesterday.  Her feeding tube came out earlier so they had to re-do it and she did really well keeping her saturation up without having to increase her oxygen while they did it. She is still on 10 on the nitric but they may try to start weaning her down on it again. We got to hold her for a little while today and she seemed to like that. We have a meeting in a little bit with the pulmonologist, cardiologist and NICU doctors to discuss "the plan" and make sure we are all on the same page. So no real new news today other than requiring less oxygen, so hopefully that means the steriods are working for her.

Tuesday, April 20, 2010 1:35 PM, EDT

Elizabeth did not respond well to the high flow oxygen, so she was moved to the next intervention of CPAP (continuous positive airway pressure) which is the same type of machine she was on in NICU when she was first born. They also had to put her back on the nitric oxide to get her stat up, as soon as they hooked up the nitirc she responded immediately to it and her saturation level started going back up! Which is great because the next step would be going back on a ventilator. They have started her steriods again and gave her a dose of lasix (diuretic) to help get any extra fluid off of her. She is resting and no longer struggling to breath.
Thanks for all the support and concern!

Tuesday, April 20, 2010 10:49 AM, EDT

Over the past two days Elizabeth hasn't been able to keep her oxygen saturation level up, and her oxygen has been turned up alot. She went from being at .8 to 3.5 liters. The doctors decided this morning it would be best to put her back in PICU so that she could be put on a high flow oxygen mask and to start another dose of steriod treatment for a few days. The pulmonologist said that he had been in contact with the speicalist in Cinncinati about her case, and the recommended course of treatment is to do the short bursts of steroid treatment as needed, but to wean her off when the steroids start taking effect. The steriods help her with being able to keep her levels up but also keep her lungs from growing as well as the need too. The pulmonologist has gotten an official confirmation on her diagnosis and she does have Pulmonary Interstitial Glycogensis, with a different variant. Basically since she also has heart problems (pulmonary hypertension) the disease she has is slightly worse. But is still a good diagnosis. It will just take time for her lungs to regrow the tissue. So as of now we dont know how long she will be in PICU or the hospital. She wont be able to take a bottle for a while either, so they will continue to feed her through the tube in her nose.  We are disappointed about this "set-back" but we know that eventually she will be much better and be ready to go home.

Saturday, April 17, 2010 11:31 PM, EDT

I created a "Team" Page for anyone interested in doing the March of Dimes walk. If you would like to particiapte please feel free to Join Team Elizabeth Wren... There is no cost to do the walk but you can make a small donation if you wish to the March of Dimes.

http://www.marchforbabies.org/team/t1435061

Thursday, April 15, 2010 11:19 AM, EDT

Elizabeth is doing great today! Shes smiling and seems pretty happy. We will be getting moved to a regular room outside of PICU at some point today, defiantely a step towards going home. Still waiting on the speech pathology people to come by to evaluate her and then schedule the swallow study before we try to feed her a bottle. Hoping that will happen today or tomorrow since not much gets accomplished on the weekend around here :)   Shes stilling being weaned off the pain medications, and now off of all the monitors except for the oxygen saturation one, which makes it alot easier to hold her. Her body movements are still very slow which could be from all of the medicines she has been on or her development could be a little slowed due to low muscle tone, so they will be monitoring that for a while even after we leave the hospital.
Matt and I have both returned to work, trying to get some type of schedule down. We are so grateful for all the help that everyone has given us and for those who have helped take care of Elizabeth while we work. Hoping to get her home really soon! Will post our new location later today.

Tuesday, April 13, 2010 11:02 PM, EDT

ELizabeth is doing soo good! We got moved into a private room within the PICU. So we are able to stay the night with her now and can do more as far as taking care of her ~AKA we get to change the diapers~ :)  They plan to decrease the amount of her steroids over the next 4 days to completely wean her off of them. And they have started decreasing the dose of morphine and ativan to continue to wean her off. She only showed a few withdrawl symptoms today which is good, means that the step down medicine is working for her. And if all goes well they should be able to take the central line IV out.  She only cried a few times today and smiled a whole lot! She will be in PICU for a few more days and them probably moved to a regular room until she is ready to go home.

Tuesday, April 13, 2010 10:13 AM, EDT

Elizabeth is doing good this morning, sleeping. They have her down from 2 liters of oxygen yesterday to .8 today. We got to hold her for a little while last night but she was very fussy. She tries to cry but since the ventilator was in so long her throat is raw and it makes her "voice" very hoarse so all she does is squeak. She has been smiling ALOT. Still waiting for the swallow study to be scheduled so they can see if she is able to take a bottle, but that should be later today or tomorrow. Once she is off the pain meds and able to take a bottle she will be able to go home.

Monday, April 12, 2010 1:42 PM, EDT

Elizabeth has been OFF the ventilator for almost 2 hours!!! She was smiling when we came back in the room after they took her off of it. Hopefully she will continue to do well throughout the day and we will get to hold her later this afternoon. No other big changes are planned for her today. They plan to start weaning her off the steriods tomorrow and decrease the pain meds. And she will have to have a swallow study done before we can start trying to feed her with a bottle again.

Thanks to everyone for your support an encouragement today has definately been a big step for her.

Monday, April 12, 2010 10:39 AM, EDT

THE PLAN FOR TODAY: They are going to take her off the ventilator sometime this morning!!!!! The Dr said it will take about 4 hrs to see if she will do ok without. And they will wait till then to start feeding her again too. She seems to be doing ok with the medication to keep her from having withdrawl symptoms today. We are anxious to see how she does, and hopefully get to hold her once all the tubes are out!

Sunday, April 11, 2010 6:59 PM, EDT

Still off Nitric today! And continuing to wean the rate/pressures on the ventilator. They stopped her sedation medication Versead and the pain medication Fentanyl. Because these drugs are highly addictive she has been going through withdrawls today, they are weaning her off of them by using Morphine and Ativan which they are giving her now through the feeding tube in her nose. The "plan" is to stop feeding her in the morning and start giving her IV fluids. Then just give her a little bit of pressure on the ventilator but let her breath totally on her own and if that goes well they should be able to take the her off the ventilator. But that all depends on wheter or not they decide she needs to do the Cath Lab on her heart, if they decide to do the Cath then she will stay on the ventilator until that test is done. So its still kinda up in the air until tomorrow morning. I will update as soon as we know something tomorrow.
   We could definately see some of the withdrawl symptoms today but they gave her more medicine to help keep her comfortable, even though she was having a rough time she still managed to smile for us a couple of times! We can't wait to be able to hold her again.

Saturday, April 10, 2010 2:36 PM, EDT

Elizabeth has been off Nitric since 5 Am this morning! They have also started weaning her rate and pressure on the ventilator. The doctors are meeting on Monday to disscus her and try to decide if we need to do a Cath Lab on her heart again before they take her off the ventilator or if that is something that can be done later as an outpatient procedure. They need to do the Cath Lab to get a better measure of the pulmonary hypertension. So its been a good day for her so far, hopefully they can keep weaning the ventilator today and tomorrow and then we should know Monday when they plan to take her off of it.

Friday, April 9, 2010 4:43 PM, CDT

Elizabeth was moved down to 5 on the Nitric oxide this morning around 545 and then down to 1 around 11. She did well for most of the day but  around 4 pm, again her oxygen requirement and saturation levels did not stay where they needed to be so she was cut back up on the nitric to 5. On the upside she is still lower than where she was yeterday, so maybe tomorrow there will be more progess.  Other than that nothing new happened today. She was awake alot more during the day and seemed comfortable considering all the machine she is hooked up too.
 We want everyone to know how much we appreciate you checking in on Elizabeth and for the comments left in our guestbook. It means alot to us and I hope to print all of this one day and put it in Elizabeth's baby book so that she knows how much she was loved and cared about by everyone!

Thursday, April 8, 2010 9:13 PM, CDT

For anyone interested here are some links to learn more about Elizabeth's lung disease:

http://www.cincinnatichildrens.org/health/info/chest/diagnose/pig.htm

Thursday, April 8, 2010 4:20 PM, CDT

Elizabeth had a pretty rough morning, they got her down to 5 on the nitric oxide during the night and this morning she started running a fever and they took alot of blood for the genetic testing so she had to be turned up on her oxygen and the nitric was moved back up to 10. Since she had a fever they took alot of blood and urine cultures to check for any type of infections she may be getting and also went ahead and started her on antibiotics just in case. The result from those tests wont be back for a few days. Since they took quite a bit of blood for the genetic test they are now planning to give her a blood transfusion (her 2nd one since being in PICU). We were also told that the plan to start a 2nd medicine for the hypertension wont be started, it would be best to wait and see if she can wean on her own or possibly increase the Sildenafil instead, so we will see. Other than that no new news today, she is still opening her eyes and moving around some but they are trying to keep her sedated and pain free so she sleeps alot. The pulmonologist is waiting on a response from the specialist in Cinncinati about the lung disease to see if any more treatment needs to happen or if it will just take time for her lungs to regrow the damaged tissue.

Wednesday, April 7, 2010 12:16 AM, CDT

An attempt to wean off nitric again today, and again Elizabeth just wasnt having it! They weaned her from 10 to 5 this morning and she lasted about 6 hours before her levels just dropped and she had to be put back up to 10 on the machine. So a new plan was devised, she will start a new medication called Bosentan tomorrow to be used with the Sildenafil to hopefully help with the pulmonary hypertension. At this point we still dont know how much of her problem is related to the lung disease or how much of it is the pulmonary hypertension. This new medicine will take days to get into her system before we will be able to try and wean off nitric again.     They have also decided to add more fortifier to her milk to increase the caloric intake in hopes of gaining more weight. A genetic couselor was also called in to look at the different variables in her condition just to see if there could be something the doctors are missing.

Tuesday, April 6, 2010 12:09 AM, CDT

Today they attempted to wean her from the nitric oxide, she was at 20 the machine, the went from 20 to 10 to 5 to off. Leaving the setting at each level for 15 minutes to see if she tolerated it well. She did well for about 3 hours and her O2 levels began to drop and she required more oxygen to keep up. The doctor put her back on the machine but at a level of 10 with a plan to try again tomorrow to wean her off. She has to be able to come off of the nitric oxidie before they can wean her off the ventilator. It was a very disappointing day but still progess was made since her nitric level was decreased by half.

Monday, April 5, 2010 12:13 AM, CDT

They stopped the paralyzing medication today, so that Elizabeth is able to wake up and move a little bit but is still heavily sedated and getting pain medication. Since she is no longer paralyzed she is able to start breathing on her own along with the machine. She looks so sad and confused when she opens her eyes, we are hopeful that she will be able to come off of the machines soon!

Sunday, April 4, 2010 12:05 AM, CDT

Elizabeth's last large does of steriod treatment ended today with no major changes in her status. She is still on the ventilator, she has improved a little bit she is able to wean to lower oxygen levels on the vent and keep her saturation level up. They had decided to continue giving her steriods but at a much lower does due to the fact that steroids lower her immune system so much. Her dose of Sildenafil was been increased to max recommeded dose and no major changes have been seen from that. She continues to gain weight very slowly so they have started adding Human Milk Fortifer to the breastmilk she gets in order to give her more calories and hopefully help her gain some weight.