Monday, May 30, 2011

Movin on up...

Grace made a big move last night which we are really hoping will help her to get moving on this recovery thing. The NICU has 4 rooms or bays with 9-12 beds per room. So there are alot of things going on each day, alot of noise alot of babies crying alot of family members and drs and nurses. She was also right next to the door and the sink. She was always so agitated. When the room got noisy, you could just watch her sats drop and her heartrate and blood pressure rise. I am so thankful for Grace's night primary, Jennifer because she got Grace moved into the isolation room last night! So she is in a room that has a door that could be  closed if need be and no other baby at all! It will be so nice for her to have some peace and quiet and I really think it will allow her to heal faster. It was somewhat an ordeal gettting her moved, since she has one IV pole, one ventilator, and one Nitric Oxide machine. As well as the isolette and she has a chest tube and all the cords and all the suction equipment. So she got a new vent and was bagged on the way over, it was just next door and one RT to push the Nitric, one RT to bag, one nurse to push the IV pole, one to push the isolette, one to hold the doors. And what was mom's job? When Grace got to the doorway of her new room, I picked her up and carried her into her room and to her bed. Having that girl in my arms is heavenly. I can't wait till she is finally extubated and I can hold her all the time. She was looking all around like she was thinking, what in the world just happened? I am in a whole new room! Then she promptly fell asleep and looked so peaceful. When I called this morning, she hadn't required any breakthrough sedation overnight! Huge since she had been so agitated lately that she had been requireing alot!
Grace started on feeds on Friday, and I thought she was tolerating them well and also thought that not tolerating them wasnt really an option since they are being fed straight into her intestines. But after 12 hours or so of feeds they were stopped. CDH babies in general have alot of reflx, vomitting, and retching. Grace at first was just doing alot of retching and then bile started coming up. They decided to stop her feeds and are trying again today. I (and a few nurses) think maybe she is just gagging on her tube which then causes anything that is pooling in her stomach to come up. I think that when she is extubated she is going to be much different. Speaking of extubation, really really hoping for sometime this week, at the latest early next week. She is doing great with vent and Nitric weaning, weve been able to make a change each day and not go back. She needs to have an IP of 15 to sprint again and extubate and her IP today is 16! woot! Her Nitric is 4 and should go to 3 tonight, and the original plan was to get Nitrc off before extubation but now they say that if she is ready to extubate but not ready to br off Nitric they will deliever the Nitric through Nasal cannulas. I cannot wait. I think I may cry when she is extubated!
The new room, a fan (she keeps getting hot so I got her a fan) and no tube will make for a much much happier Grace. Maybe with all these things, we can get her working on feeding and drug weaning and then get her home by fall!
On Friday I had the pleasure of meeting Noah and Carrie, Noah is a 4 year old CDH survivor and is just as cute as could be. It was so encouraging and nice to meet them, Carrie thank you so much for stopping by and chatting with me.

Thursday, May 26, 2011

Oh what a day...

Grace went down to surgery around 11 yesterday morning, actually on time! I was a little nervous when she left cuz she started desatting and raising her heartrate and, it's the  anesthesia team that transports her, none of which know her. So even though I know they are qualified professionals, I always like when someone who knows her is around. She made it down just fine though and about 2 hours after she went down, Dr. E called up to the waiting room to tell me he had gotten the Broviac and PICC placed and that she was doing well and no issues and they were going to start the Endoscopy. She got a double lumin PICC in her left leg and the Broviac is coming out of her chest, inserted into her subclavian. About 5 hours after she left, he came and told me that they were done. They put the scope down and discovered she had no Pyloric Stenosis and no obstruction and they attempted to place an NG tube that would go through her nose and bypass her . stomach into her intestine and he tried for an hour and a half to get it placed and it would not stay. Her stomach was very large and was a little malrotated. So he didn't want to do this, and I was hoping he wouldnt either but he reopened her repair site. The entire thing to move her stomach around and place  a G-J tube. I really really didn't want her to end up with one, but had thought I was ok with it if she had to have it, since she does need to start feeding. But now that she has it, I don't know I just feel awful for some reason. I hate how it looks and I just feel like it cannot feel good for her and I just worry so much about it coming out, especially when she comes home. The way this tube works is that she has one large tube, about the size of a large drinking straw coming out of her abdomen with a large plastic ring at her skin. The tube then has 3 ports at the end of it and right now, a cannister as well. They said she shouldn't always have to have the cannister attached. But the large ports she will.So inside the large tube are two other tubes. One is placed into the Jejunem, its quite long. Through the stomach into the intestines, this is the port that she will eventually feed through and hopefully we wont have any of the issues with feeding that we did before, since her feeds will be bypassing the stomach. The G tube portion is in her stomach to try to help get the air out and anything that she takes by mouth for comfort and practice that she cannot move to her intestines on her own.
GJ tubes are usually pretty long term, some kids have them for years and years and yet some only have them for a few months. I am going to stay hopeful and prayerful that she can get it out in months and not years. I hope and pray that we can just give her stomach more of a rest and maybe it will function better when she is not on such high high sedation. In 6-8 weeks she has to go back to the OR to get a button placed for it, on the outside. In 6 months she will have to have them change it out. Please pray she can amaze everyone and not need it in 6 months. I realize those are pretty outlandish hopes in terms of GJ tubes but I'm going to stick with them.
She rested alright after surgery but her heartrate and blood pressure were a little elevated. She became hysterical around 8 pm and just did not stop. Her heartrate was about 215 and her blood pressure was 123 and she was desatting intot he 70's, a few times even lower. Heartrate is supposed to be about 120 for her, bp of 70 and sats should be no lower than 90 for her but her norm is 100. She continued this for hours, even after they tried sedation and position change and suction. She got a blood gas and it was not terrible, not as good as it had been but not bad. So they did a chest xray which showed she had a pneumothorax, or a collection of air or gas that collects in the lung cavity also considered a collapsed lung. It was her left lung which obviously doesn't do alot of work for her but it's still functional and was affecting her. So at 2 am she got yet another chest tube. Her 3rd one in less than 2 months. It's smaller at the site of insertion though since the other two were for fluids and this one is for air so I suppose that is a plus. Her heartrate immediately started slowing and her breathing slowed and she stopped retracting so much and satting better. But when they did the xray a few hours later they saw the insertion of the tube was a little higher than the start of the pneumo and they might need to do another chest tube lower down.
While in the waiting room during surgery I read this passage over and over.
     "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 17 For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 18 So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal." 2 Cor
 I felt so good about how her outcome was going to be, I felt great about the fact that even though all indications have always appeared that she wouldnt thrive, that she will. I felt like this would be the begining of upward progress that we would fly after this that maybe we would be able to work on the things we need to in order to get her home, or even close to home. After staying with her until 3:30 am, after watching her be in pain and upset again it's hard to not lose heart.  I know, God is carrying her and I know beyond adoubt that His hands have not left her since she was born but I just wish she could stop suffering. It is so hard to see her be in pain, so hard to watch her cry and know there is nothing that will make her feel better. So hard to know that she has learned that people are mean and not good and that she associates touch with pain.
Please keep your prayers coming for Grace, pray that the pneumo goes away and she can get back to working on extubation and pray that she can start feeds and that all that will finally go smoothly and that when she is extubated she can actually learn to use her mouth the way she is supposed to. Pray that she can find comfort, pray that she knows how incredibly loved she is, by us and our families and friends and complete strangers, despite all the awful things she feels each day. Pray that her PPHN continues to be controlled, that it finally stops causing so much trouble and that they can get it so controlled that the can begin weaning her Flolan and get her completely weaned from the Nitric. She probably won't be weaned from Slindenafil when she starts it again but I've become ok with that. I've even become ok with her going home on Flolan, that is something that has been tossed around and one reason they wanted another Broviac. Pray that the g-j doesnt cause her any pain or discomfort. This girl has an amazing will and her strength is truly astounding. The thing about her, is that she really lives up to her name. She oozes grace, she does. When she is not uncomfortable or crying, when she is happy, she just makes you feel right, she makes you feel peaceful and she just shows love in an amaing way. I can't explain it really but I'm not the only one who's said it!

Wednesday, May 25, 2011


Prayers for Grace this morning as she is going to go to the OR again. They are going to first start out with new lines, a PICC in her left thigh and a Broviac on the right in her neck/collarbone area. Once those are in, if she is still tolerating well, they will scope her to see what is going on with her stomach. Yesterday they tried to place a tube around her stomach and into her intestines but they could not get it, and did not want to keep trying for fear of perforating something, so they stopped. They did inject Barium to be able to watch it to see what is going on and they watched the Barium fill her stomach and then just sit. When the stomach is filled, it should very quickly, within minutes begin to drain into the small intestine. One hour later they did another xray and found that some Barium did drain into the intestine, but a good amount was still in the stomach. So they know that her stomach can drain but not nearly as quickly or as well as it should. Why, they are not sure. So depending on what they find today, they may try to do another NG tube and bypass her stomach if they can, or they may place a J tube and G tube. Those would be directly inserted into her stomach to drain it and into her intestine to feed it. Her nose and mouth would be free of tubes and she would be able to start feeding. This is not at all what I had hoped for for feeding but if it is going to allow her to begin feeding and get off of TPN and Lipids and move forward then I am ok with it. It would not be an end to the prospect of oral feeding. I was told that as soon as she is extubated we will begin working on oral feeding, to get her mouth going. Even if she has the two tubes, if she decides she likes oral feeding, even if her stomach still cannot digest the food, she can take as much by mouth as she wants for comfort and practice if there is a tube there to drain it out.
I think that she will be so much more comfortable when she is extubated, which she is on her way to. She hates her ET tube with a passion and can throw a very big fit to show it. I am hoping that gettting her off the vent soon and getting her to be feeding with just allow her to take off, and progress.
Her ECHO showed that her PPHN was being controlled and they were very happy with it's findings. I am too.
Please pray that she has a smooth trip to and from and in the OR and that she is able to start taking some steps further in the right direction so we can get her home soon!

Tuesday, May 24, 2011

Tummy troubles

Feeding and issues with the stomach and intestines is often a very big issue for CDH babies, one that I had really really really hoped we could avoid. I had hoped maybe we could catch one break in this rollercoaster. It seems like everything that COULD happen with CDH has happened with Grace. Grace had an abdominal ultrasound yesterday and they did not see Pyloric Stenosis, so they said her stomach might just still need time adjusting to it's new home in the abdomen, so they wanted to place a new feeding tube. Usually the tube goes through the nose (NG) and then into the stomach, since being intubated and having never used her mouth for eating, she cant eat normally. Well in Grace's case they cannot put it into her stomach because obviously her stomach is not emptying into her intestines. So they wanted to bypass the pylorus and put the tube right into her intestines. They tried this morning and it does not appear to be in and flowing correctly. They are going give it a little while and then xray again to see if it is working or if there is an obstruction somewhere. Prayers would be much much appreciated that we can get the stomach/intestines thing figured out and she could begin eating and taking meds orally.
She is heading to the OR sometime this week to place a  new Broviac and PICC line, since the Femoral line in her leg was only temporary. It's not a huge procedure or anything but it's still a trip to the OR and still anesthesia. So pray please for that to go well.
Grace is getting very very tired of being intubated, she is very upset most of the time unless she is very sedated. They have started  giving her chloral hydrate, ketamine and methadone. In addtion to versed and fentanyl. I am very uncomfortable with the amount and types of sedation they are giving her, but at the same time do not want her to be upset and uncomfortable, since the more upset she is, the worse it is for her hypertension.
When they tried to place a PICC this weekend, she got extremely upset and they went up again on her Nitric because her blood pressure was very very high. The dr's recognize that she needs the tube out and will maybe be less irritated then, so they have gone up on her Flolan, the medication to try to relax her heart to help her PPHN in hopes that they can wean the Nitric and the vent and extubate soon. They would give her nasal cannnulas to deliver the remainiing Nitric until they can wean that. Hopefully htey can use her gut and begin Slidenafil again since it did work for controlling the PPHN.
Grace is obviously still doing better than she was a month ago, and much better than 2 months ago. A month ago she had just had her belly closed and 5 weeks ago she was still on ECMO. But she is not doing as well as we had hoped she would be at this point or that she could be.
She needs major prayers that her stomach issues could get figured out and resolved and that she could wean the vent and be extubated very soon and that when she is extubated she will be able to handle breathing on her own and not need reintubation. Pray that she could stop being given so many many drugs to keep her calm. Holding her is on hold because she gets so worked up over the transition from bed to arms and then from arms to bed just sends her into a fit. She had been able to have her top up and look around, be awake and tolerate the noise of the room, and is now back to a closed top because the noise and activity now bothers her again. Please pray that our sweet girl could begin to truly move forward.

Friday, May 20, 2011

The girl is a puzzle

It seems just as Grace gets figured out, she throws another curve ball at us. So they are pretty sure that all the fever and irritability and issues were caused by the Viagra, which has been stopped but now her pphn is not as controlled as it was and when she gets upset she has a hard time recovering. Her Nitric was bumped up to 15 ppm last night because she was having a hard time bringing her heartrate down out of the 200's. They decided yesterday morning that she could try feeds again, again at 1 cc per hour. She seemed to be fine for most of the day and then around dinnertime she just got very irratable and her belly was very puffy and hard. She was given a supository and put on her belly and her nurse was pulling air from her feeding tube, she had alot of air in her belly. Her feeds were stopped for two hours and restarted at only .5 cc. She still couldnt tolerate it. On Monday they will do an upper GI study to see what is going on. Please pray that she is just needing time and to start very slowly, not that there is an issue preventing her from feeding. Feeding is such a battle for CDH babies and one that I was really really hoping and praying would not be so huge for Grace. When she is not feeding she is very happy to be held. She got a bath last night and didnt seem to mind it at all, but afterwards I think her belly started huring because she got so upset. They made thier first vent wean today since last weekend when we went way back up on her settings. Hopefully her gasses continue to be good and she can keep her heartrate down and bp down and sats up. When she was upset last night she was desatting into the 50s which is not good! She's usually pretty good at satting between 95-100 with no shunting until last weekend! Grace had her first cranial ultrasound since coming off ECMO and it showed that the spots on her brain that they were concerned about bleeding were gone! If you don't remember the reason she came off ECMO was not because her blood gasses and stats were good, it was only because she started having so many spots on her brain that they couldnt continue because the heparin that thins the blood would have just continued allowing bleeds. Now they are not there! How wonderful!
Grace is so beautiful and is so strong, she has a will like I've never seen. I thought my boys were strong willed but I had no idea what a strong will was. She was on her belly the other day and she was moving her legs and body like she was trying to get up and crawl out of there, her surgeon said she'dhad enough of this place and was tyring to get going. I think so too! For being so heavily sedated, she can get moving amazingly.
CDH is very daunting, it is so much more complex than most people can understand, and even though I now know alot about it, its' more than I can understand at times. I research alot and know what all the facts say and I know that all the facts go against everything I want for my daughter. Sometimes it's hard to stay positive. But I was listening to the radio on the way up yesterday and I heard a story about a mans life. He said about his situation "I was letting the facts water down my faith" and it hit me that that's exactly what I was doing. To keep thinking of the things that could go wrong or the things that havent gone right or the things that we have to overcome still before coming home (tons!) because that's what all the facts say, well that's just wrong. I know the Lord is faithful always, I know that He can and will carry Grace through the hell she is currently living.  Even though she is not feeding yet and her pphn is not under control like it should be she is still doing amazingly well for how sick she was. I need to always remember that, He has already performed miracle after miracle for this sweet girl and He will continue to. A mother is supposed to teach her child things but Grace has already taught me more than I think I could ever teach her.
Please continue to pray that Grace would be able to continue to wean the vent and control her pphn and that we could extubate within the next few weeks. Please pray for her to be able to tolerate feeds soon, that the dont find anything big with the upper GI on MOnday and that if they find something that it would be an easy fix and she could still make it to oral feeding at some point. I still want so badly to nurse her at some point.

Thursday, May 19, 2011

Grace continued to have episodes of extreme irritability Monday night and into Tuesday morning and a fever. Tuesday morning I called Adam and told him that I really thought Grace would benefit from being held, she is after all a baby. Babies, especially our babies thrive on being held. Alot. Grace had been held for all of 90 minutes her entire life. So, Adam talked to her nurse and they got her out of bed and into daddy's arms. For the first time. He held her for about 4 hours and then I held her for about 3. In that whole time she never needed a PRN of anything and she didnt have any fits. She did have a small fever, but they do get warmer when being held, obviously. In that time, her dr's were doing thier homework. They think now that possibly, the fever, the rash, the inconsolable crying could have been caused by the Viagra. They think she might not have been absorbing it correctly, and they have stopped it to see if that helps. If it is as easy as it is the Viagra then great, we don't have to go back in to investigate her patch. BUT now they will have to find a way to control her PPHN since she cannot stay on inhaled Nitric. So her vent settings are still quit high and her Nitric is back at 10. No extubation anytime soon. She was upgraded to a larger ET tube today (breathing tube) so technically she was extubated, only to be reintubated immediately. This is the 3rd time she's had her tube changed out, and she's been intubated for almost 2 months.
She got her last chest tube removed, I hope she is more comfortable with that gone. But I really hope when they start feeding her ( not sure when that will be) her Chylothorax does not come back because then she will ahve to get another one.
Grace has to get 2 shots of Lovenox a day to try to help the clot in her leg. She will get them for the rest of the time she has the line in her leg and she hates them. She will likely look like she has chicken pox from all the red dots from the shot.

Tuesday, May 17, 2011

What is going on?

I talked with Grace's nurse this morning around 4 and she said that not only did her fever spike to 39.7 that Grace was just inconsolable, so upset like she's never seen her before. Kicking and thrashing and just crying and crying. It took 2 doses of Fentanyl, one dose of Versed and a dose of Benadryl and Tylenol to get her under control but that after they did that, her fever went down to 37.5 which is still high, its about 99 farenheit but it's more acceptable than 39. And she has been sleeping and ok since then. She also said her rash had come back but then went away again. She said she has no idea what it could be, and I'm still waiting to hear back from Adam to see what the surgeons thought when they rounded. Please pray that she could start feeling better and they could figure out what is wrong with her.

Monday, May 16, 2011

Giant leaps backwards.

*update* after typing all this out, Adam just called me to tell me her fever is back up to 39c. Right now they are just treating with Tylenol, I don't know what they plan to do.

I'm really growing tired of the CDH dance. Everytime I start to think we have this going in the right direction, every time I feel like maybe, just maybe I can handle this and we are going to be ok, we regress.
After a week of fevers and fussiness, and culturing everything everyday with nothing growing, it was decided that it just had to be a process of elimination. The first and easiest (though it actually wasnt) to eliminate was the broviac line and the picc line. As her surgeon said "her lines are like gold" they worked very well for delivering all meds she needed, drawing blood and blood gasses and giving her transfusions when she needed them whichis typically at least twice a week. So now she has a line that goes in through her groin that does not have as much acess as she had had before so she also will need to have a regular IV started each time she needs blood since hers falls out typically after about a day or less depending on where it is and how active she is. She moved her hand around so much while getting blood through an IV in her hand today that we thoguht it came out because blood started going everywhere, but she had just loosened where the line went in. The risk of the new line is that she could develop a blood clot in her leg, which of course she did. It seems like everytime we are told "this could happen" it does. Her leg also turned blue as soon as he started to put the line in, which he said he kind of expected. With some heat and elevation her leg went back to normal. She has not had a fever since the lines were taken out and her white cell count did start going down. It was very high before which is also an indicator that her body was fighting an infection. So they are thinking it must have been one of the lines, and hopefully we dont have to worry about infection again.
The bad news about all of yesterdays activities is that her body did not tolerate so much going on. Her blood gas immediately after was horrible and they immediately went up on her vent settings and Nitric. She was almost off Nitric and her vent settings were suitable for extubating and she was doing well breathing on her own and over the vent, they had anticipated the Nitric would be off tomorrow and then she would have an MRI and then they would Extubate by Friday. Now her vent has been turned up to where she was weeks ago and her Nitric is back up to 10ppm, they tried  a sprint and she did nothing, no breathing on her own at all. Her Slidenafil is not working anymore and she is shunting again and desatting when she is upset, which means that her pphn is no longer controlled. Needless to say she will not be extubated any time soon. She also has a blockage in her intestine so no feeds anytime soon either.  They also increased her Morphine and Ativan drips to 250. 
Im so tired of setback after setback after setback. I was really hoping to not spend 6 months there, but at the rate we are going it's quite possible. At almost 2 months I would have really hoped she was weaning sedation instead of going up on it, that she would working on feeding in some way instead of still only getting TPN and lipids, which also her triglycerides were up so they are only giving lipids intermitently so she is not recieving optimal nutrition. I would have hoped we could be holdinlg her and she wouldnt have any chest tubes and that she wouldnt be intubated. I feel absolutely terrible for her, she is miserable unless she is heavily sedated.

Sunday, May 15, 2011

Grace continues to spike fevers and be extremely uncomfortable and upset. She is inconsolable without sedation and this morning her fever was 39.7 which is 103.4. Nobody really knows what is going on with her and why this is happeneing. Everything they have cultured has come back negative and nothing is screaming infected. So they are concerened with it being one of her lines or possibly her patch from her repair or her gut, they just dont know. Right now they are placing a central line in her groin and removing her broviac and her picc line. This is not such a good thing at all, everything that goes through her lines she needs, she needed every acess they had and now they have to figure out how to deliever everything she needs through the one central line. If the fever does not stop and she does not settle down and it proves to have not been a line then they are jut right back to scratchign thier heads over this. Pray please for Grace to be ok, pray for wisdom for her doctors to figure out what is giong on with her.

Friday, May 13, 2011

One step forward and two steps back.

It seems with CDH or at least with Grace each time we move forward we then move backward. It's sometimes frustrating and I have to constantly tell myself to look at how far she has come, a month ago she was still on ECMO and not doing so hot.
So I mentioned we started feeds earlier this week, for the first time ever. Grace had never ever had anything in her gut (well for the last week she had had viagra but never food) because her intestines had been in a silo for so long and they can't feed while they are out and then they needed to give her time to get used to them being inside but almost immediately she presented with the Chylothorax so feeds could never start. It was not a surprise to anyone that Grace did not tolerate her milk. I noticed almost immediately that feeding made her very fussy and wiggly, which was attributed to what a weird new feeling eating must be for her. So feeds continued and they even upped her to 2 cc per hour. The way they determine if she is digesting it is to pull some back from her feeding tube to see if it's just pooling at the bottom and hers was not so everyone thought things were great. Her tummy got very swollen and puffy and it looked on xray like it was just air so again the thought was that she had gas, rightly so since she wasn't used to using her stomach and intestines. Finally she just got so fussy and so upset, that her feeds were stopped another xray was taken and her feeding tube was taken out and a repogle was put back in. A repogle is a tube through her nose or mouth that sucks out what's in her stomach. Immediately after placing the repogle she was draining bile. She put out about 70 cc of bile. Turns out she was not digesting her milk and she had a major upset stomach. Her feeding tube was higher than it should have been so thats why they were not getting the residual out.
So feeds were stopped about 24 hours after they were started and they are thinking of starting again tomorrow. She started stooling again so that's good, since one thought was that she may have had a small bowel obstruction.
 The other step back was that her chest tube had stopped putting out, so they were talking about taking it out. Huge because then Daddy can finally hold his baby girl! Well of course then it started putting out a ton. But they say it is not Chyle and xray does not show it accumulating around her lung and it's not affecting her breathing at all and they think without the chest tube her body would just reabsorb it. But they are leaving the tube in place until she can start feeding again to ensure that the Chylothorax does not come back. Please pray it does not.
 Yesterday and today Grace was "sprinted" on the vent. What that means is that they basically turn it off to see what she will do. They leave the oxygen on but nothing else. I was not there for it yesterday but was told she did good but wore herself out. That was for half an hour. Today I was there when they sprinted and it was for close to an hour and she did so well. She never dropped her sats and her lung volumes were great and steady and she only rose her heartrate at the end and that ended up being becuase she needed a diaper change. She does not like having and wet/dirty diaper. So they are weaing her Nitric still and she's doing very well with that and they expect her to be off early next week and hoping to extubate by end of next week.
 Grace will be getting a MRI next week and for whatever reason it makes me nervous so pray that it goes well and the results show nothing abnormal. The MRI will be of her brain to see what the bleeds they saw on ultrasound due to ECMO mean. Pray she has no damage to her brain.
Grace has been spiking fevers and nobody can figure out why, they've cultured everything and nothing is growing so they don't think she has any infections but she is on antibiotics to be safe. Tylenol brings it down but then it comes back about 24 hours later. She has also had a few bright bright red rashes and they arent sure what that's about either. They don't know if they are related or not. Please pray those go away on thier own or that the surgeons can figure it out. She is, as one person said, a puzzle.
She is up to about 9 pounds, which is about the birth weight of all the boys. We knew before she was born that she wasn't going to be as big as them and always talked about how different a tiny baby would be to take care of, but I guess it didn't matter anyway. I hope she gets the chest tube out soon and maybe she can actually wear some of her 0-3 month clothes.
Grace is in the mood to be extubated, whenever her position allows she tries to grab her tube. She has had her fingers wrapped tightly around it a few times. In due time she will be free of it, I'll bet she can't wait. The fits this child throws are crazy though, she is on a LOT of sedation still but her body is apparently used to it, her arms and legs get going like crazy and she moves her head all around, I cant imagine what her fits will be like when she is not drugged at all! She is fiesty for sure but I can't wait for her to throw fits at home:)

Wednesday, May 11, 2011

May 10 2011

May 10 2011 will be a day I will never forget. I can't believe what a good day it turned out to be! I wanted to update last night and then I fell asleep when I was putting the boys to bed!
I got to the hospital around 11 am yesterday and when I walked in, Grace was being suctioned which she hated and she also didn't have her repogle tube in her nose. The repogle draws out all the bile in her stomach since it is not being used to digest food. She had it out because her nurse was about to put a new tube down, a tube to FEED her!! And what did our wonderful team of surgeons decide to feed her? Breastmilk! A very little amount, 1cc per hour but what wonderful news! I hope she has been tolerating it!
A little while later her nurse came back to me and asked if I was going to be there all afternoon and I said I would for most of it. Then she said "do you have anything to you need to do for a few minutes?" and confused I said "Sure, I could find something to do if you need me to?" and then she said that Grace really needed a new bed, they are supposed to change out thier isolettes every 2 weeks and she's had the same one for 6 and while they changed it out, they were going to let me hold her for about an hour!!!! I couldn't believe it, so I ran to the bathroom and got a drink and came back to hold her!
Let me tell you, holding a baby who is intubated, with Nitric, has a chest tube and a healing incision and about 10 lines running from her is no small feat. Grace had a hard time settling down at first, she was pretty upset and then she would calm for a minute and then start up again. We suctioned her which did help but I think she was little gassy from feeding and then after I put her back down I discovered she had a dirty diaper and that probably was a big part of her problem! But after about 20 mins of trying to calm her down she fell right to sleep and looked so cozy sleeping in my arms. It was so amazing then. I am so so glad they let me hold her, 6 weeks was a long time! We have to wait for the chest tube to come out to hold her again but I'm thankful for the sneak peek:) It just felt so right to have her in my arms finally. She is so tiny compared to the boys, it's always been really hard to think about her size when she's always in the bed and looks huge compared to the other babies around her. She is such an amazing little girl!
I'm still not sure what her ECHO showed the other day, but it must have been pleasing because they are weaning her Nitric! Viagra must be working nicely with Flolan. Yay! The next steps would be to wean the vent, and wean the Flolan and she is most likely going home on Viagra. (Don't get too excited, home is still far far off!) At some point soon, I would love to start seeing a wean on her sedatives. I think she could handle it. Her drips were started out at 20 when she first admitted and are now up to 240, weaning will take awhile.
Oh how could I forget, Monday I also gave her a bath! I felt like such a first timer! I've been bathing kids and babies for 7 years and was so unsure of what to do! But she liked it and we lived through it! She did however kick over her tub of water, just kicked it right over all over the floor. Her acts of rebellion have gotten much tamer! I also worked with Dan more on stretching out her shoulders and arms, with some massage and she did not seem to like it much! Im sure it hurts at first.
She also lost her Art line, it fell right out and they are not putting it back in! It was an Artierial line which is like an IV but goes into an artery and it was continually monitoring her blood pressure and was used to draw her blood gasses from. Now they only check her blood pressure once and hour with a cute tiny little cuff!
So we had two days of great great news for Grace. I can't begin to tell you how happy I am and how encouraged I am by this weeks progress!!! Keep her prayers coming!!!

Sunday, May 8, 2011

6 weeks

Today Grace is 6 weeks old, I cannot believe it's been 6 weeks already and at the very same time I can't believe it's ONLY been 6 weeks. I have to admit that part of the reason the blog was not updated for so long was because I was having a hard time. Not Grace. She's been pretty stable lately. As each week goes on, I've been just dwelling on everything, and 6 weeks was starting to get me. 6 weeks is usually when you are leaving that sleep deprived haze of having a new baby, when life starts getting much closer to normal and my life is not going to ever go back to my normal. It will become a new normal and that's even pretty far off. My baby is 6 weeks old and I haven't held her yet except for those few precious minutes at birth. I've been dwelling on all of that, and letting it just get the best of me but today my mind was changed for me. You see, I am blessed to even have been able to hold her for those few minutes, I am blessed to have been able to sit by her bedside for 6 weeks, I am blessed to know I do have a future with her even if it is so much different than I wanted. I am blessed to be able to see her awake each day and to see her beautiful eyes and smiles. There's a baby in Grace's room who has been there for about a week or so, and though I don't know the specifics at all, I know the baby is  pretty sick. Today there was alot of activity in her corner and the parents were very upset and we could overhear talking and it does not sound good at all for them and my heart was breaking for this family and it really hit me how incredibly lucky and blessed we really  are to still have her and to know how far she has really come. One of the surgeons told us today that they see about 20 CDH's a year and about 3-4 of those are as severe as Grace. Wow. She is so amazing and such a little fighter.
 Last week Grace got one of her chest tubes taken out! It hadn't put anything out for days so they decided to remove it! One more chest tube to get out and it's holding time! The remaining tube though, needs some prayers. It is the tube draining the chylous fluid. The fluid that is coming from her lymph nodes. She was put on Octreotide for a 14 day course and was taken off at day 7 because it was not helping to stop the drainage or slow it down, for now it is just a waiting game to see if it can resolve itself. The last 36 hours it has slowed it's output so I really hope and pray it continues to do so. If not, it is possible she could need a surgery to go in and fix it.
 Grace started running a fever last night and was given some more antibiotics and tylenol and they took cultures to see if she might have an infection. Pray she does not. It could just be a virus or just simply that she ran a fever for a bit and we'll never know why but in a baby like Grace they don't want to take any chances.
 Grace had her first visit with the physical therapist, Dan. There's not alot he can do with her right now because she is still intubated and has a chest tube but it's a good thing that he can work with her because it means she is very stable and tolerable! It's also good because she is at a point where they are worried about things like muscles and range of motion rather than whether she will survive or not. So although we are taking such baby steps towards home, they are still steps towards home. So Dan thinks she's going to need alot of work with her shoulders and arms, which everyone knew already, babies should be able to bring their arms together at their chest's and Grace is quite frog armed. He isn't too worried about how her hips are and he said actually her head is not too horribly flat.
 Grace also had two baths, of course I missed them both. She is due for another tomorrow and they are supposed to wait until I am there to help. Oh, she also got her foley catheter removed so now we can change her diapers too! She is tolerating everything so much better than she was before. She used to raise her blood pressure and desat when she was touched, and repostioning her was terrible and now she doesnt mind. She might still get mad but she recovers on her own and quickly. She used to require numerous PRN's of ativan or Versed or Fentynal almost every hour sometimes and now she barely gets them.She is still on three sedative drips though.
 There are talks of extubating in the next few weeks, which I think would be so wonderful but I am not getting too excited until it happens! Right now Grace is on Nitric oxide which is delivered through the vent, so she will need to succesfully wean off the Nitric and keep her pphn controlled without it before we can try to lose the vent. She will have another ECHO tomorrow morning so hopefully the Flolan and Slidenafil are working well together to control her pphn and we can start the Nitric wean.
I am so proud of my little girl, she is doing such a good job getting through this. She has come a long way already but still has a long way to go but she is getting there.
Thank you all for the prayers, the kind words, and for all the help. We appreciate so much the people who are helping us through this. Keep the prayers coming for our sweet sweet girl.

Wednesday, May 4, 2011


Sorry it's been so long since I've updated! This will be short, but let me say Grace is doing well! I will post a more detailed update soon, but wanted to make sure to let everyone know she is ok! Grace has been doing very well since her surgery last week. She does not seem to be in as much pain as she was, that silo site was getting pretty sore and red and everytime she coughed or was suctioned it just looked so painful there. So glad she got it repaired. She is doing well with the vent weaning. Her blood gases have been coming back very normal. Everyone comments on how good she is looking! She is still on the Nitric, would love to see that weaned, and yesterday was started on Sildenafil which is actually Viagra to help with the PPHN. She is still on a full dose of Flolan. Ana, (one of her surgeons) says that she thinks Grace will be off the Nitric and the vent before they even begin weaning Flolan and most likely she will stay on Viagra for quite a long time. Please pray that when she has her next ECHO later in the week, it shows dramatic improvent in the PPHN. It has to improve. She has been able to wake up more and has tolerated the noises of the room so we have been able to have her top up and love on her more often. She loves it and so do we. When we kiss her she closes her eyes and smiles. It's very sweet. Thank you for all the prayers and thoughts, please keep them coming!