Blessings

There's so much more to beware of with a cdh child than we ever imagined. My brain in on overload. Not only is it possible for their repair to re-herniate but cdh kids are known to have hearing loss and vision loss. With Liam having been on ecmo it makes chances of hearing and vision loss go up. Its somthing that is progressive so even though his hearing and eye sight are perfect now doesn't mean he wont have the loss later in life. If he catches a cold or virus it could land him back in the hospital. He'll have respitory issues for the rest of his life. I just talked to one of his doctors here at UCSF and the results of his MRI came back. Liam does have a bright spot. It could be healing or it could be something that will affect his motor skills and cognitive skills. There just doesn't seem to be one thing I can just not worry about. It's going to be a hard, challenging, long road ahead of us. It's a good thing we have God on our side. I'm dealing with all the stress of being here for 6 weeks. Of feeling lost and having everything thrown at me. It's a very overwhelming situation to have a high risk infant. This whole thing has given me post tramatic stress syndrom. The one thing I know with all my heart and soul is that if I had been given the choice of not having Liam at all or go through what we've gone through with him I would without a doubt choose to do everything exactly the same. I love my little Cherub. The awesome news is Liam has been off nasal canula since yesterday and we get to take him tome tomarrow. I have cried countless times. After 6 weeks of being here I am more than ready to be going home and to have my family truely together. It's a miracle that Liam has over come so much in such a short time. Most cdh kids are in more a minimum of 6 months. God has blessed us in so many ways. Now I know why they call cdh kids cherubs, they are gifts from God. Little angels.

36 hours straight :)

We walked our 3 miles to UCSF from the Ronald McDonald House this morning to see Liam. I felt fine when we left. We took a detour so Lanie could show me the carosel at the Golden Gate Park and we rode it once. She loves it, which is funny because we have never been able to get her to ride on anything that moves. We got to the hospital just in time for Liam's 12pm feeding. I changed his diaper, fed him and held him for awhile. Thats when I started feeling really bad. My back started hurting, my knee was throbbing and I started having sharp pains in my legs. I thought if i ate I would feel better so we went to the cafeteria. I didn't feel any better and thought it best to leave so I could rest. So we walked our 3 miles back to the house. I was in absolute pain, could hardly walk by the time we got back. After a nap I called to check on Liam. He's still taking all his full feeds by bottle and doing great. They also moved him yet again, back to the west wing to bay 1 this time. When I asked why they told me it was for staffing purposes. Because Liam has to be fed every 3 hours by bottle the nurse cant divide her attention. In the north where he just left the nurse's attention was divided for 3 babies, all of which have the same feeding time. Now his nurse's can concentrate on him and we get to see alot of his same nurse's he had before. I think it's a good thing since before they orders were written that he was to take every feed via bottle and not to put in a ngtube, the night nurse's didn't bother to wake him to feed him like they were supposed too. He's gone 36 hours now bottle feeding. Thats amazing considering he's only been doing it a week now. He has no eating issues and is still gaining weight. They didn't lower the liters of his nasal canula today because they didn't want to rock the boat since he only started all feeds via bottle yesterday. I'm sure he will continue to do good and will be home before we know it.

Feeding is going great

Liam was able to do 3 feeds from a bottle yesterday. It's exciting because he's going beyond the doctors expectations. His nasal canula was also lowered to 2 liters of room air yesterday morning. This morning around 7am he decided he didn't need his gtube anymore for feeding so he pulled it out himself. Cindy talked to one of the head NP's and suggested that they do a trial and let him do all his feeds via bottle instead of putting back the gtube. I was able to bottle feed him 4 times today before having to leave. The orders are to continue bottle feeding through the night. So the nurses will actually have to work tonight instead of letting him sleep through the night. The doctors, nurses and ocupational therapist are amazed with him. They said that this wasn't normal protocal for CDH babies because they usually have feeding and breathing issues but their letting Liam call the shots on this one for once. I also talked to them about the nasal canula. They told me that there was no set time for weining and every case is different but generally they leave each setting on for 48 hours before lowering it again. When they get to 1 liter they sometimes leave it instead of removing the nasal canula just until their sure the baby has the hang of feeding and isnt breathing too rapidly while feeding. They don't think that will be an issue for Liam because he has gotten the hang so quickly and easily. I keep expecting a set back. I know he is doing amazing and it is shocking but I cant help to expect one. I dont want to get my hopes up and atleast this way I wont be heartbroken when he does have a set back. It also makes the progress that much more exciting. Liam is a fighter and he will fight to the end. I thank God every day for making him such a strong little guy and I know that this will only make him stronger.

Feeding

Liam has had a busy few days. Yesterday morning we walked in to see that Liam had been moved to the North wing in ICN. We had no warning so we walked into the West wing where he had been and were met halfway to his bed by the NP. It was one of those happy sad moments. Happy becaise the move means he's doing really good. Sad because there are nurses we wont see again and because we were just getting used to our new spot. We were thrilled to find out Liam's primary was able to follow him to the north wing. With her being an ECMO nurse chances of her being able to follow were slim depending on the situation in the west wing. Then yesterday Liam also got switched over to the nasal canula. It was an exciting day. We were so thrilled. Ofcourse I was nervous and worried that it wouldn't go well and he would have to be put back on the CPAP. It's been about 36 hours now and he's doing great. He also started bottle feeding monday. They started out with half an ounce monday and feeding once a shift. He did great. Has a great suction and no gagging. Yesterday was also great. Today at noon Liam drank just shy of an ounce out of the bottle. It was really awesome. Then tonight at 6p we actually got to put him on my boob and try to breast feed. It was a miserable failure for both of us. My milk wasnt comming out fast enough for him so he didnt like it. Latching on wasnt a problem at all. When we switched to the bottle he ended up eating his full feed out of the bottle. They didnt even have to use the feeding tube. They changed the bottle feeding orders from once a shift to twice a shift. What aggrivates me is that the night shift isnt bothering to wake him up to bottle feed him. He actually sleeps thorugh the night and is the easiest baby they have so they dont want to have to work with him. The only thing they do with him is wake him up at the 6 hour mark when they change his diaper and half the time he doesnt even wake up. I know we only have a few steps left before we can go home but those few steps could be our set back. I'm still praying for the best.

One Month

Liam turned one month today and it was a big day for us. That fact that he survived so many odds to actually make it to be one month old. Undiagnossed CDH babies don't usually have a chance to make it because the first thing the doctors do when they are born is try to make them breathe. With CDH babies they need to be intubated and paralized as soon as possible until they can go through the repair surgery. Babies with CDH also need to be born at a hospital that specialize in CDH. Unfortunatly there is only one on the west coast. Liam had to be Life flighted to UCSF after they finnaly figured out what was wrong with him. Most CDH babies don't survive the transport. Then he had to be put on ecmo as a last resort to save his life. Let me tell you when I was at kaweah delta hospital and I got the call saying he was sicker than he should be for a baby with his condition and that the only thing left was ecmo I was upset. Upset and mild to how I reacted. After I gave permission I broke down and was hysterical. My heart rate was off the charts and they had to give me meds to calm me down. Most babies don't survive ecmo. What Liam has been thorugh already in his one month, what he has survived and overcome is a miracle of God. I am so thankful he's come as far as he has and I just pray we get many many many more years with him. Liam is going to be switched from the cpap machine to the nasal canula tonight or tomarrow. That is a very huge step. We also get to try bottle feeding tomarrow. Its going to be a big big day. I put Liam in one of my favorite onsies today. It said "Mommy's New Man" on it. It was newborn and still swollowed him. He's getting some chubby rolls finnaly and its adorable. I can't wait to see his chubby little cheeks and kiss them. Thank you all for wishing little Liam a happy one month bday and know that his one year were going to have a huge party.

Eventful day

It's been a big day for Liam. His cpap was lowered from 6 to 5 and is stable and showing no signs of a colapsed lung. He was also moved into a crib today like a big boy. He weighs about 6lbs 9oz now. I love that we can put his own clothes on him now and hold him whenever we want. It's such a huge blessing for us. Sunday is his 1 month birthday and for his birthday/moving into a big boy crib we bought him a crib mirror by sassy so he has something to look at and talk to. He also has a mobile on the way from home as well as a huge load of cloathing and blankets because i just can't wait to dress him up. We're supposed to start bottle feeding monday so thats a plus. Aunt Rose, Uncle Cliff and little Stephanie are comming up to visit us and meet Liam for the first time. It'll be a great visit. Like a typical mom even though he's in good hands, I'm worried that something might happen. He has never been on cpap of 5 before and were pretty scared. I called the hospital last night after we got to the Ronald McDonald House and again tonight. I just couldn't help it. Things can go from great to very bad in a very short time for babies with CDH and there are so many unknowns. Hopefully all the research studies their conducting will lead to answers one day and we'll know what causes this and how to prevent it. Today has felt twice as long as its been and Im so glad its over.

Testing my Limits

I feel like I'm being tested today. I'm stressed over Liam even though he's doing fine right now and Lanie and Justin seem to be trying to push every button I have right now. My patients flew out the window early this morning. Every little thing is just irritating me. I keep praying God will help me through this and help me to get calm and collective again. Liam however is doing just fine. Dr Keller said he's doing really good and his xray this morning looked fine there was no change in his lungs so their not colapsing. She decided to leave his cpap set on 6 for another 24 hours and wait until tomarrow to lower it to 5. Then the plan is to leave him on that for a few days and if all goes well switch to the nasal canula. If he handles the nasal canula well and gets feeding through a bottle and putting on weight he gets to go home. But that's getting ahead of our selves because that process may sound short but can take a month or more depending on how Liam handles it. I have to say that I am very happy that the doctors aren't trying to push him too fast and past his limits. I thank God everyday for that. God had blessed our little family and he has a reason for everything. If it wasn't for Liam being born with CDH we wouldn't have met the great people we've met since being here. If it wasn't for CDH we wouldn't even have known about it or been able to help raise awareness for it. Don't forget to vote daily to raise money.

Sweetness

Things are looking good. Dr Keller said we were going to wait to wein down Liams pressure and concentrate on getting him stronger so his lung doesn't colapse again and so he won't have to have the surgery to take his right side diaphram lower. I'm great with that decision. I don't want to push him past his limits and think he really does just need some time to get stronger. I know it's like were in a holding patern now but I'm ok with that after having his lung colapse twice. I'm taking the time to enjoy the little things like changing his diaper and having him pee and poop all over, him spitting up on me, all the smiles and all the cries. I never thought before all this that I would ever enjoy or look forward to hearing my baby cry. It is the best sound in the world. Being able to have Lanie in the room and visit with him is a blessing. She sings to him and talks to him and even made up a story for him. I can't thank God enough for what he has given me. It may not have been what I wanted but I wouldn't change it for anything. I've learned not to take for granted the little things.

Vote for CDH Babies

First thing yesterday morning I just had to get to the hospital to hold my son. We rushed there, walked in the room and I sat down to hold Liam. As soon as Sue put him in my arms I started crying. I held him for a good hour before I could put him back thanking God for every moment we get with him. Every memory we get to make with him. I don't question God, but I do pray that the research studies I signed Liam up for will one day give us answers. We need to know why this happens andhow to prevent it. I would never wish this on anyone. The parents and children that have gone through this deserve answers. You can help by going and voting for CDH babies to help raise money. Just go to the Vote For CDH Babies Facebook page and it'll tell you how you can help. Every vote counts.

Traggic Loss

A family we have come close to in our stay here at UCSF has lost their little cherub sunday august 7th. My heart goes out to the parents as well as the big brother she left behind and the family. Please add them to your prayer list. It's so hard to witness. I know God has a plan and a reason for everything. It doesn't stop the greif. To watch another CDH babies struggle for life and not survive just hits so close to home. You always have it in the back of your head that it could be your own child. I gave my condolences and my goodbyes to the parents and kept it together as best I could. If somthing like this doesn't humble you then nothing will. I have learned to be thankful and to celebrate every little mile stone Liam has through all of this because you really never know if your going to have more. You never know when you hold your baby if it will be the last time or when you hear them cry it'll be their last cry. These babies are miracles from God and their lives change lives. I know Liam's life and his struggles have changed mine. Life is so short and their are too many curve balls you need to celebrate life, every little bit you get.

A Critical Mistake

The doctors noticed that our cherubs right lung (his good lung) was slightly colapsed again yesterday. When I went in to visit him I noticed they went up on his oxygen and pressure and were going up again as I was standing there. I asked what was going on and the nurse explained that our baby was having some trouble breathing then proceded to tell me that they took an xray of his lung that morning and it looked alittle inky and they were waiting for the doctors to decide what they were going to do. I was so upset. We were making progress again just to be shuved back. As I'm standing there looking between my struggling baby and his machines I noticed something they completly missed. I called the nurse over and said "You guys have been messing with his machine giving him more pressure and oxygen but you didn't think to check his tubing?" and I showed him how the tube providing oxygen and pressure was pinched closed in the side of the bed. The look on the nurse's face was all I needed to know that was a bad thing. It just made me matter so I complained. The tube spent most of the night and morning like that and with all the people that attend my son no one noticed. That's just plain neglegance and told me that the night nurse and day shift nurse he had didn't hardly do anything with him because if they had moved him enough the cpap mask he has and the tubing would have pulled giving away that it was stuck. So because the nurses nor the respitory therapist that work the machine didn't notice my sons lung slightly colapsed and would have completly colapsed if I had not noticed. So yes I am very very upset. Once I unpinched the tubing within minutes my sons stats went up and the oxygen and pressure went down. His xray this morning showed his lung had reinflated and he looked great. I wish they same nurses I know and trust could watch over him 24-7 and he not have to have alternates every now and then. Believe me, I am noting everything because that small mishap on their part would have sent my son back to having to be intubated and the situation could have been bad. I learned a very valuable lesson that just because their nurses doesn't mean their exactly qualified or trustworthy for taking care of my son. Questions should always be asked and if the nurse doesn't know the case they shouldn't be allowed to work with the patient. The nurse he had last night and today didn't know hardly anything. Everytime I asked a question it was "um I don't know" or "Oh we didn't tell you?". It's absolutly rediculous and appaling to know they let someone like that work with such critical babies.