Pulled out her gastrostomy tube

28/2/08 This morning i woke up at 5 15am. I thought something was wrong with Skyla. I had a feeling something had happened, so i rang down to check on her. They said she had a desating episode at midnight and that at 5am this morning, the cheeky little girl decided to pull out her gastrostomy tube. (the new one in her belly). It was being held in with a little balloon at the end of the tube that has filled with a bit of water. She actually managed to pull it out, balloon still inflated through her tiny little hole in her belly. The nurses said she let out a little cry. By the time the nurse got to her she was happy and smiling. She is so cheeky. 2hours later it was inserted again. It was pretty red and swollen. They gave her some morphine incase it hurt her but she didnt even flinch. Since then the feeds have stopped as the hole is now abit big and it is leaking. She is back on TPN and LIPIDS for 48hrs as they are hoping the hole will reduce in size, otherwise they may have to insert a larger tube or re operate and make another hole for the gastrostomy. Hopefully it wont come to that. Tonight she decided to drop her heart rate to 51 and desat to the low 80s. Its just one thing after another with our little girl. When she is good, she is great and when she is misbehaving, she really misbehaves. Her xray the other day showed she has pretty crappy lungs. Its the chronic lung disease and she has pulmonary hypotension. They said its pretty bad, but i am hoping that because she is still young, her lungs will continue to grow and get stronger in time. They did say when we eventually get to go home she may have to go home on oxygen for a bit. That scares me a bit but if its a way to get her home then thats just what we will have to do.

Our smiling Skyla

She starts smiling about 15seconds into the video. Sorry, its sideways. Its the way i took it on my phone.

Blood transfusion

25/2/08 Skyla had a few episodes of desats throughout the night, but had a pretty good day today. One desat this morning at about 10am and thats it. Mind due it was a big one. Her sats read 48% but it was probably more in the 50% mark. Her lips were definately blue. It lasted about 25min. They did bloods today and her Hb was 7.8, so tonight she will be having a blood transfusion. Her 6th one i think. We had visits today from play therapy, they bought her in a tiny maracca. She shook it a bit. She didnt want to let go of it. It was funny. We also had visits from the physio people. We are trying to get her to face to the right as her head is pretty flat on the left side, but she just makes her way back to the left. Cheeky girl she is. She also had an echo on her heart today. Because of her VSD the blood is shunting a bit which doesnt really help her desaturations that she has. I come home tonight so hopefully she will have a great night. Her gastrostomy tube was leaking a bit today so they stopped her feeds all day until the surgeon came round. He tightened it a bit then the feeds were started again. Only at 5ml p/hr. They will up it every 4hrs. Oh forgot, we weighed her today and she now weighs in at 3.83kg. But because of the gastrostomy she is probably about 3.7kg and she is 53.5cm long. My son Blake was 3.7kg born and 52cm long. So by that Skyla is still the size of a newborn at 4 1/2 mths old. She is getting there, slowly but surely.

Not a good few days

22/2/08 I came down this morning and Skyla was still very unsettled. At 1pm the Drs decided to start her on some phenebarb to relax her a bit. This seemed to work really well. She had a good rest which was great. We took out her NG tube today. YAY, finally no more tubes in her nose. Its the first time ever without a tube in her nose. Its only taken nearly 19wks. Look everyone, no tubes

23/2/08 Skyla had a few desating episodes throughout the morning. We decided to take her off the cpap today. She was so happy. She was even smiling. It was good to see. She stayed awake for a bit then decided to go to sleep. She slept for about 3 hours. She just had the blow over of oxygen til she woke up then we put the nose prongs on her. They started putting gastrolite down her gastrostomy tube today. She coped really well, and absorbed it. Tomorrow they will start her back on her formula. She is on Elecare 30cal. I spoke to the head of ICU today and he thinks we are gonna be in hospital for at least another few months or maybe even longer. So the way we are going, we wont have our little home until she is probably 6 or 7mths old. Maybe even longer.

24/2/08 Skyla dropped her sats a few times today. 50% sats mind due. Her lips were blue. They had to give her some Midaz to calm her down today. It worked instantly. One minute she was crying and the next she was quiet and floppy. It scared me cause i didn't think it would work instantly, but it did. She was put back on cpap again. Skyla started back on her feeds today. 5ml to begin with then increase by a ml every hour. Hopefully she will be at full feeds soon so that we can have her central line taken out. I them cause she always gets infections from them. So hopefully it will be out in a day or two.

Extubated this morning

21/2/08 Skyla was extubated this morning and put straight on oxygen nose prongs. She was very unsettled and dropping her sats. This went on for a little while so they decided to put her back on cpap. That just seemed to make her worse. She then had a few bradys. She dropped her heart rate to 51 at one stage. It was pretty scary. I was hoping that once this operation was over with, she would stop all this desating. So much for wishful thinking. Her lungs are still abit wet, and she does have the pulmonary hypotension too so that doesnt help much.

Plan to extubate already

20/2/08 Skyla was still abit unsettled today. They did how ever manage to wean her vent down alot. They also weaned her morphine down from 50 to 20 and also weaned down the midaz. Not that they helped her much as she is pretty immune to it all as she has pretty much been on morphine for about 13wks of her life. She is now 18 1/2wks old. So hopefully we can get her off it asap as she does get withdrawals. They plan to extubate her tomorrow. I wasnt expecting this so soon but its great news. I was expecting her to be on it for atleast a week, so the sooner the better, just as long as she is ready. She is very swollen in the face today. Her eyes are very puffy too. She has these beautiful Angelina Jolie lips. They are so cute. Her top lip is swollen for her lip tie that they cut yesterday in her op. Other than that she had a great day. They didnt worry about an arterial line. As long as her sats are ok and being on the vent they can monitor her CO2. They will probably do a gas in a day or two just to make sure. So hopefully she will have a great night tonight and be extubated tomorrow. Fingers crossed.

Not a good night

20/2/08 Skyla had her operation yesterday. She went in a 2pm and came out at 6pm. They did the gastrostomy, fundoplication, toungue tie, she also had a top lip tie and they found that she also had a large hiatus hernia. The surgeon said it was successful which was great. She remained stable throughout the op. Over night she had a tough night though. She was very restless. Skyla had to be heavily sedated. She has had a heap of morphine, midaz, rock, presidix (not sure of spelling) and valegan and she is still fighting it. Skyla has been splinting her chest, dropping her total volumes on the vent, dropping her sats and she had an xray this morning. Her lungs are very wet. They tried to put an arterial line in her last night a few times and have also tried a few times this morning with no luck. They will try again today after the drs rounds. I just hope my little can keep fighting. The pictures are of my brave little girl post op. The other is her huge hospital file and she is only 19wks old.

Operation Today

19/2/08 Today is Skylas big day for her fundo and gastrostomy operation. They will also be releasing her toungue tie. She may have to go back on the nitric machine as she wont be able to have her sidenifil for her pulmonary hypotensin through her peg for a few days till her stomach is back to normal. She was a very good over night. Her last episode was at 10:30am yesterday morning, but she did put a little show on for her surgeon last night when he came to see her. She vomited twice. Cheeky she is. She hadnt vomited all day. Thankfully she didnt desat with both vomits. I think she will be on the ventilater for a few days to a week. Hopefully not too long cause she gets very lazy on the vent, and lets it do all her breathing. Skyla is 4th on the list for her op today.Her surgeon has decided to do an open cut as she is still pretty small, 3.58kg. So she will be back on the morphine and midaz to keep her pain free and nice and relaxed after the op. He will go through her old diaphragmatic hernia scar. He said he may have to make it a little bit bigger though. The surgeon said roughly 1pm today. Hope it all goes to plan and she is smooth sailing through her operation. I will try and update tonight after the operation.

what a bad week

17/2/08 What a bad week my little girl has had. Over the last week she has had 27 episodes of reflux and desats. They range from 10min to hours at a time. Most desats are in the 60s and 70% sats. Her worst one was 49% sats. We had to bag her to get her up. It was horrible. She was blue. They tried to then put her back on cpap but as they would take the bag away and try to put cpap on she would desat to the 50% sats. Twice she did this. It was very scary. This particular episode lasted for 1hr 35min. We ended up just giving her the blowover of oxygen until she settled. Thank god they didnt put her back on cpap. She absolutly hates it. It would have made her so much worse. The plan is fundoplication, gastrostomy, LBO and toungue tie operation on tuesday 19th feb. Only two more days and then hopefully my little girl will be on her way to getting her home for the first time. I just hope she doesnt have too many more episodes. She had 7 today. She gets so exhausted. She now weighs in at 3.58kg. She is slowly getting up there. We are now day 126 in hospital. 105 of them in ICU.

Having a bad day

7/2/08 Well today started out pretty good until 10am. We took Skyla off cpap this morning for her bath. Just as we put her in her bath the blood sisters came to take her blood. She decided to leave a lovely package in the bath so while we refilled the bath they took her blood. It took them 3 attempts. She was screaming. They ended up just doing a heel prick. I cant stand it when they dont get her first go. Anyway after that we gave her a bath. She loved it. She then started to work really hard with her breathing so we had to put her back on cpap. My little girl absolutely hates the mask. She dropped her sats to 65-70. Her pretty pink lips went a horrible colour and she went mottled. I hate seeing her like that, she was gasping for breaths. This lasted for about 30min. She got to the point where she is just so exhausted she just goes to sleep. This happened on 4 occasions today. This would have to be the worst day she has had in a long time. The lowest i seen her sats today was 59%. Her lips were blue. At 4pm the Drs decided we try take her off cpap and just use the nose prongs. This seemed to work. She was really settled and calm. I think she even smiled a bit today. She has never really smiled for us. It has only been with wind. It was really nice to see.

Pics Of Skyla

Finally a date set for operation

4/2/08 Wow how time has flown. My little girl is now nearly 4mths old. She has come so far in her short little life. We weighed her on Saturday 2nd Feb and she weighed 3.19kg. Over the last 2wks she hasnt put on any weight at all. They decided to up her milk to 21mls per hour and upped her calories to 28. We weighed her today and she is now 3.24kg. The heaviest she has ever been. If she doesnt start putting on weight they will go up to 30cal in a few days. We finally have a date for surgery. Not till the 19th Feb. Its 2 wks away but atleast we finally have a date. She is still having reflux episodes. The other morning she dropped her sats to 54%. Skyla loves scaring us to death. She just gets so upset. She is still on cpap but every now and then they take her mask off to give her little face a break. When its time to go back on she really gets upset and drops her sats. We are still in icu, hopefully we will stay here till after her operation. They expect her to be on the ventilater for up to a week, so then maybe a week after that we will be able to go to the ward. Since she was born we have had 4 ICU admissions and 3 ward admissions. This next surgery will be her 3rd operation. Skyla then will need her coarctation repaired again, her cleft palate and then open heart surgery for her VSD. So 4 more operations including her one on the 19th left for my little princess. She has to be the toughest little girl i have ever known. Im so lucky she is a little fighter.