Saturday, July 26, 2008

Monday is the day~

Just had round with Cardiology...definitly going home monday...have to take infanct CPR and Ethan has to have some tests but then we will be going all the way home. Tuesday Ethan will go to his local pediatrician (used to be a pediatric oncologists for St. Jude's so he's very good and the cardiology team knew him by name)to get him up to speed and get his fist check up. I can't beleive we are actually getting to take him home!

A great night.

Ethan did beautifully last night. He slept a lot more and is eating like a little piglet. He hasn't had to have his NG tube put back in because he is doing so well on his own. We are looking at a Monday discharge. Before discharge we have to take infant CPR and Ethan will need his newborn hearing screen and yet some more bloodwork. Autumn, to answer your question, they will let us go all the way home. It is only after surgery that they want us to stay within an hour from the hospital. That means that I will be able to sleep in myh bed and use my bathroom...it is amazing the things that you look forward to. I may stay with Katie until Thursday though because I have an incision check with Dr. Kirshon on Thursday at 2:30p. I don't really want to have to drive Ethan to Houston and back in one day three days after discharge. Plus he will have a follow up visit down here sometime the end of the week. We are going to blaze a trail between Lufkin and Houston. Older kiddos are heading out with Richard, Mimi and Paw Paw to the beach in Galveston this morning. Hopefully rounds will happen before they leave so we can get plans set for Monday.

Friday, July 25, 2008

Feeding Tube

Ethan pulled his feeding tube out by himself by accident this afternoon. The pediatrician reccomended we keep it out to see how he does with his feedings. I'm very please to report that he has taken every drop offered to him since the bottle before the tube came out. This means that they will watch his feeds for the next 48 hours, do his newborn hearing screen on Monday morning (only because they don't do them on the weekends) and get Richard and I CPR trained and we will most likely be coming home on Monday. I see the light at the end of the tunnel. Right now he is sleeping like an angel and Richard and I are going to fix some sandwiches and microwavable bowls of soup. I'll continue to update as long as the WIFI doesn't frizz out on me. I'm elated but exhausted...just like every other new mom I know.

Ethan ate a whole bottle!

Ethan just finished eating an entire bottle by himself without help from the NG tube! We are looking forward to being able to go home as soon as he can eat without the tube entirely. We are no longer in the NICU but have been moved to the cardiology inpatient floor to be monitored and learn how to eat. Cardiology met with us a few days ago. His anatomy is the same as they saw on fetal echo, with the exception that they found all four pulmonary veins (thank you for your prayers) Instead of each vein being connected to the heart, they are coming together to form one vein and then draining to the heart. This called a conflusion of the pulmonary veins. This makes him work a little harder but will not require immediate surgery. When he has his open heart, they hope to do a full repair but will have to wait until they are in there to see if they can move his aorta to where it won't obstruct the valves. A full repair will mean a four chambered fully functional heart...and it will be a repair not a band-aid like the other option is. If they can't move the aorta like they want/need, they will do at least two surgeries and he will have a single pumping chamber in his heart. Ultimately, these procedures (called a Fontan) will fail and it will require further repair or a heart transplant. We are again having to take a leap of faith that Heavenly Father is in charge and will be able to be with the surgeons to complete a full repair. Again, your prayers are needed and being felt. We have seen the miracles that come when people of faith unite in prayer. I'll try to be a little better about posting. The WIFI in the hospital has been real ornery about posts the last few days.

Sunday, July 20, 2008

Meet the Family

Today Ethan met his big sister, Elise, and big brothers, Craig and Nolan. I was so happy to see my kiddos all together. Elise was really happy to see and hold Ethan. Craig just wanted to see "his baby" and Nolan, well, Nolan looked at him and picked his nose. If that isn't love I don't know what is. I am so thankful to my family for watching out for and taking such good care of my older kids while I am taking care of Ethan. The boys have returned to Lufkin with Mimi and Paw Paw and Elise is having a big time with her Aunt Katie. They went to Fudruckers for dinner tonight and I don't know if I'm going to be able to convince her to come back home!

I know I have mentioned that Ethan has reflux and has started eating through the aid of an NG tube in his nose. Today was a rough day with his eating. He will barely nurse, so we let him as long as he will, then try to bottle feed, then the rest goes down his NG tube. My other kids were such good eaters that to have one that is having a hard time is something that I never thought I would encounter. Everyday he is getting stronger and we are going to take this stay in the NICU one day at a time until he is ready to come home. I will be discharged in the morning and hopefully will get a room (they are extremly limited and given by priority on a daily basis) at the Ronald McDonald House just down the hall from the NICU. It has been such a good sabbath. Not a whole lot of quiet time, but what I managed I made sure that HEavenly Father knows that I am aware and completely grateful for the blessings he has sent to us in the past few days and months. Richard and I are also grateful for all of our friends and family that have supported us during this time. Your prayers are felt and we are so greateful for you.
Our first family photo. Wow...a family of six! It's going to take a while to get my mind wrapped around that!
Elise was so proud of her littlest brother. She looks so grown up...if you look close you can see her temporary tatoo from Chuck e Cheese.

I had to put this picture on here. Ethan has about two 30 minute really "awake" times a day and I happened to catch him in one when I went down to feed him around noon. I picked him up and put him on my shoulder and he lifted his head on his own to look around. Richard happened to have the camera out and caught the best picture. It even shows his little old man wrinkles on he forehead!


Saturday, July 19, 2008

A good couple of days...

Ethan with his new NG tube...and without his IV...that's right, he has both hands free...
Mom holding Ethan. I am still swollen and sore, but so happy that I can go downstairs and hold him whenever I want!

Yesterday Ethan had an upper GI to test for malrotation of his bowels...He DOES NOT have it! WOOHOO!!! This is incredible news. This means that we do not have to watch one thing on our laundry list of things we have to look for. The Neonatal/Cardiology team came by for rounds this morning and gave me the news and, smiling very very big, told me that if he did not have any problems eating then we could go home the early part of next week...as if a couple of days from now...to grow for surgery. No sooner had that been fed then Ethan threw up a feeding. The upper GI showed evidence of reflux and it has become evident that he has it. They placed a NG tube so he could better tolerate feedings and we could keep a closer track of how much he is eating. This will delay his release but to be talking about releasing him from the hospital two days after he is born is unreal to me. We have received so many blessings that I keep forgetting some in "thank you prayers". He has been upgraded to NICU level two which means that I can change his diaper and pick him up when I want instead of when the nurse tells me I can. He has surpassed everyone's best expectations up to this point. Thank you guys for your prayers, fasting, and thoughts. I know for a surety that this is why Ethan is having such good reports and making such wonderful progress. Sunday is sibling visiting day and my older kids (especially Elise) is ecstatic about finally getting to come see their little brother.

Thursday, July 17, 2008

Ethan's blessing and Neonatal Team video




While I wasn't present for Ethan's blessing we did tape record it and I am looking forward to hearing it soon. We couldn't put him in his special outfit but he did wear his hat that Mimi made and will let him wear his blessing outfit the first time he goes to church...in a couple of months. He should stay little enough to fit into it for a while. The video is of Ethan's neonatal team starting his IV and talking to Richard. I have had so much fun with this blog. It is such a blessing to get to send this information out from the hospital. I love modern technology! I also have put my favorite picture of Ethan taken...so far...I'm sure there will be more to come. He just looks so peaceful and angelic. What a blessing! Also, Elise, Craig, and Nolan should be able to visit their little brother on Sunday...can't wait to have my whole family in for a picture...

video

Ethan's here!!!




Ethan arrived at 12:48 pm today. He weighed 6 lbs 13 oz and was 19 3/4 inches long. We were trying for a vaginal delivery but my blood pressure was dropping (thanks to a wonderful epidural) and Ethan was not handling labor well. His heart rate dropped dangerously low so we proceeded to a c-section. I was scared but a wonderful nurse stayed with me and kept me calm until the section was underway. I'm finally in my own room. The hospital is terribly busy so I didn't get into my room until after 5:00.




I am so grateful that everything is going as well as it is. Ethan was pink and crying at birth. After a quick check over by the neonatology team, I got to hold him for about 5 minutes. The cardiology team was with him all afternoon and we should get the results from the tests they ran soon. As of now, Ethan is breathing room air with a pulse ox of around 85. He has required no medications. I feel so blessed by my father in heaven. I know that He is watching out for us. The spirit was strong in the delivery room and has given me feelings of peace all afternoon. Your prayers and faith are helping to sustain us so please continue your prayers or add us to them. Things couldn't be going better for Ethan right now. I can't wait to get to go downstairs to see him.




I was able to hold down some ice chips and apple juice and will be able to eat something at midnight. They will also take out my catheter so that I can get in a wheelchair to see Ethan. I am going to see him in just a few hours!

Wednesday, July 16, 2008

Tomorrow's the day

No picture today, but I did go see the perinatologist this afternoon. We are now officially scheduled for induction tomorrow morning. We are hoping to leave for the hospital about 3am. Dr. Kirshon stripped my membranes about 2:30 this afternoon (not pleasant and I don't highly recommend) and up until about 7pm nothing had changed. It is now almost 8:45 and contractions are starting. No regular labor pattern yet but it will happen soon. With any luck we will have to go to the hospital sooner than the induction is set for. More to come soon...

Wednesday, July 9, 2008

Everyone else...


My eight year old was watching me look at the internet the other day and wondered why I would have a blog without her and her brothers in it. Now that I think about it, this is our family's journey, not just Baby's. I am posting a picture that was taken in early December of 2007. We used it for Christmas. I also hadn't gained any baby weight yet so I don't feel competely grossed out when I see it. Elise is my eight year old, Craig is four, and Nolan is two (and belly laughed in every picture). Anyway, thanks for all the support you guys have given in the past few months. Keep it up! Your prayers are the only thing that keeps me going some days.

Saturday, July 5, 2008

Ethan James


I wanted to start this blog before Baby James is born. He was diagnosed with severe heart defects when I was 18 weeks 2 days pregnant. His amniocentises came back normal. He has Heterotaxy Syndrome, Dextrocardia, Transposition of the Great Arteries compounded with a single ventricle outlet and an Atrioventricular Septal Defect. His surgeon said that when he is born the cardiology team will determine if he has sufficient blood flow to the lungs and to the heart. If he doesn't, he will require immediate surgery if it is possible to correct. We are hoping that he doesn't require this surgery. He will have at least one open heart surgery and more likely he will have three or more before he is four years old. I will update this blog when he is born to let friends and family know of his updates. My scanner is not working so hopefully we can get some pictures straight from the camera.

Update: Richard was able to scan the ultrasound photo. We have more recent ones but this one turned out the best!