Holding his own

Maxton has been hanging in there today. I called to check on him in the middle of the night and he was doing pretty good. He is on alot of support right now, which has them concerned, but he is maintaining his levels. His blood pressure looks good. In the middle of the night he wasn't splitting, which is a sign of pulmonary hypertension. His per and post sats were both in the high 90s. When we got there this morning; however, things weren;t looking all that great. His heart rate was in the 190s and his pre sats were like 80 and post were in the 50s. They decided to bump up his vent a little and things started to improve. Within about 30 mintues his sats were back in the 90s (pre) and 80s (post), with his heart rate in the 150s. When we left both sats were in the 90s or even 100. I called a few mintues ago to check on him and he has maintained things this afternoon and he has even tolerated a small bump back down on the vent. They are going to try to wean it a little more and hopefully he will also tolerate that.

As far as the brain bleed goes, I haven't really heard much about it today. They did an ultrasound earlier but since we left before the results we havent heard. I do know they haven't had to give him any blood products today so I am guessing it has not been continuing to bleed. They gave him some plasma yesterday so hopefully that did the trick.

We were told that little Hoss is the sickest baby in the unit right now, which was pretty hard to hear. I feel blessed that he is here and love every minute I can spend with him. I am hoping that he maintains himself today and continues to be able to tolerate the small weans. :-) Thanks for checking in on little Hoss and know that we feel so blessed by your support and prayers!

Pics

I decided that I had to come home and get some rest. I know Max will be trying to get some rest tonight too. He hasn't really had an episode since 5, so hopefully he will do okay tonight. We are planning on going to rounds in the morning so maybe we can get some more information tomorrow. Here are some pics of our little man from yesterday. :-)

Here is little man hoss right after birth before going to Children's



First family picture.



Little Hoss trying to get some rest.





Isn't he beautiful!!!!



Mommy and Max when I finally got to go check on him.

Another Update

Earlier today we were told that Maxton would definately be on ECMO and they got us to sign consent and everything. we were told the procedure would take an hour so when they called 30 minutes later and asked us to come back for a patient consult I about freaked out. I was half crying going back there and my poor "rock" of a husband looked like he was about to lose it. We thought the worse had happened.

I am not sure if what they have told us is neccessarily good news but he is not on ECMO at this time. Maxton has small bit of bleeding in his brain and it has increased slightly since yesterday so they decided that they cannot do ECMO on him at this time. Basically the docotr said that if they did ECMO today there would be a 5% chance that he would live but that he would mostly bleed out. They did tell us that that may change and he still may end up on ECMO but that it would be unlikely unless they thought death was certain. Pretty scary to hear that, let me tell you.

Luckily, in the 30 mintues between doing ECMO and then not doing ECMO they were able to get him stablized. His sats are still splitting. He has sats being monitored in two places and they would like them to be close together, within about 5 numbers, but Maxtons are 100 in one place in the 70s-80s in the other. He is now on a high oscilating vent which is working fairly well. He has had a couple of episodes since the ECMO talks but has been bagged and been able to recover. He is also on several new meds. His blood pressure seems to be somewhat stable. His pulse is fairly high, at around 160. (earlier it was like 220 so we will take 160!) They also had to put in another PICC line earlier as they have been sticking him all day trying to get him stable.

They also mentioned earlier that Maxton may have an infection because some of his liver readings were "off". The doctor said that they actually hope this is the case because that would explain many of the problems that they have had today. They have swithced antibiotics hoping that the switch will knock out any infection and help stabilize little man.

I cannot decide whether I need to go home and rest (Iknow I should) or stay here overnight in case something changes. I am leaning towards going home since we live like 20 mintues away, so if I do I will post some pictures. Thanks for praying for us and we appreciate everyone.

Keep Max in your prayers

Overnight I called a couple of times to check on Max and his sats were splitting, which is not good. Sometimes his oxygen is at 97 and sometimes in the 80s or 70s. This morning he had an "episode" and was pretty hard to get stabilized so I was trying to get discharged so I could come over here and be with him. Well, when I got here he had just had another episode and they were working with him to get him stable. Right now they are giving him some blood since some blood work showed he was predisposed to bleeding. They also talked with us about ECMO. It looks like he may be on it by this evening, obviously we are really hoping not but know that if that is what the doctors feel is best then we will be okay with it. They are also in the process of changing him to a different vent so hopefully that will help and he will become more stable. He is still either trying to breath over the vent or getting hiccups alot. When I was back there it looked like he had the hiccups so I asked and the RN told us that they have been trying to figure out if it is him trying to breath or hiccups all morning.. she said they just aren't sure. I think that is about all for now. I am officially discharged and will be over here for a while, but will hopefully be able to post some pictures of Maxton later today! Please keep him in your thoughts!
Ashley

Hangin in there.

I got to meet my beautiful son officially this morning around 4:30. I did see him after the delivery when I leaned up on the table to get a quick peak before they intubated him. He looked so pitiful at first. His heart rate had been kinda dropping the last few pushes and when he was born he was purple and his little mouth was open without any sound. At first I was worried he wasn't alive, but he pinked up and he was doing very well when I met him this morning. His blood gases were good. According to the doctor he is doing "great"... he said that twice, once when we spoke at 4 and once at 8, so I am assuming it is true. His sats were between 96-100 with the vent and he was really breathing over it. He is still trying to breathe over the vent. They have him on fentanyl but he is pretty stubborn and isn't wanting to rest too much. His pulmonary hypertension is doing well with the nitric oxide they are giving him.

I just saw him again about 30 mintues ago. They put a PICC line in this morning. They also had to add some dopamine for his blood pressure. Overall, they are still telling me that he is looking "great". I feel very relieved to hear this and am so glad to see him looking so well. Apparently the surgeons met this morning and think that if he continues to do this well they may do surgery on Saturday. I was very suprised to hear this and wasn't thinking about surgery talk at all.

Hopefully I will be able to get out of the hospital tomorrow. I am looking forward to going home and getting some rest and of course, coming back to see my little Hoss. He weighed 8 lbs 11 ozs last night and was 20 3/4 inches long. I appreciate all the prayers everyone has said and feel so lucky to have such a good support system. Plan to update tomorrow unless something happens tonight.

Maxton's arrival

First let me say this is Ashley's dad and we appreciate all the prayers and concerns for Maxton. May God Bless You. Maxton arrived in this world at 11:30pm 3-3-09. He weighed in at 8 pounds 11 ounces. As of this blog he was being examined. Everything went fine. Ashley is resting comfortably. I will update you tomorrow. Again from our family thanks for everything!

Reflections of an almost new Mommy :-)

So today I have been a bit of a basket case. I am very excited about finally meeting Maxton, but everytime he kicks I wonder if it will be the last one I feel. He hasn't been too active this last week. Earlier he had the hiccups and I was wondering if it would be the last time I felt them. Despite everything I have enjoyed being pregnant.

At my first appointment in July (7 weeks gestation) , I was told that my placenta had a bruise on it. The doctor was not too worried about but decided to do a follow up ultrasound in 4 weeks. At the follow up ultrasound at the end of August, I was told that the bruise had healed but that there appeared to be extra fluid around the babies neck. It was a Wed. and they had a follow up appointment with a high risk doctor scheduled for me for Thursday. I knew it must be serious if they had an appointment for me the next day. When I went in they tried to do a nuchal fold test, but Maxton would not show them the part they needed to see. Anyways, we were told that based on the pictures of the babies neck we were likely looking at either a Down's baby or a Turner's girl. The doctor was pretty certain that the baby would be a Turner's syndrome baby. Anyways, I opted to have a CVS based on this. The Fish results came back a normal boy, as did the final results. This was the beginning of Sept. I remember how happy we were. My husband high fived me so hard my hand swelled. We felt so blessed and excited.

Then about 7 weeks later in October I was told that the baby had a possible hole in his diaphragm. I came home and googled everything I could and found CDH. It was a Friday and my follow up was on a Monday. I had read tons of things about CDH and found that when I went to the appointment I knew everything the doctor had said. I knew before they told me that my baby would have CDH. I had a sort of peace about it that I felt God would only have given me if I had to face CDH.

Of course, Maxton has also been potentially diagnosed with coarctation of the aorta. It's been one heck of a ride. I must say since the coarctation appointment, I have mainly gotten good news, which has been good!

I really feel that Maxton will be a fighter. He has made David and I so strong and even though we are scared for him, we cannot wait to have him home with us and teaching us more about ourselves.

CDH has already changed my lives. I read other blogs and I cry with strangers who really aren't strangers at all. My family has grown by at least 50 people with the addition of just one child. I feel blessed to know this people and although I wish that I didn't have to deal with CDH and that I could bring my baby home on Thursday, I am so grateful to the mothers who have come before me and to those who are currently expecting. I always felt like I wanted to work with children with cancer.. that has been my dream job. My new dream job is to work with CDH families and babies and make lives better for the CDH community. Maxton isn't here yet, but I know my purpose in this.

Please continue to pray for us. Pray for Sky and Carla who lost their beautiful son, Joseph this past week. Pray for Charlie, Davis, Addison, Oakley and other CDH babies fighting to live as we speak. I love each of this families and though I may never meet them personally they have all touched my lives in ways I cannot explain. Tomorrow by this time, little Maxton should be here. We hope to update tomorrow night so be looking. :-)