4 Weeks At Home

Today we went for a walk outside together as a family. It's so nice to see everyone and feel good to be outside of hospitals. Amber continues to be well. She has lots of gas, not sure if it's because she has a MIC-KEY button or because we started using probiotics (they both happen on the same day), she is crying two to three times a day trying to pass it for about 20 minutes, its so sad.

This past week we saw the Endocrinologist, someone from his office will call to make another appointment for a special stress test that takes 3 hours. This will tell us if Amber will need hormone supplements or not. We also went to our first swallow therapy but didn't do much work, someone from their office will call to make a schedule for the E-Stem therapy. It will be twice a week and after a while we will redo the swallow study. It seems that I go to appointmets, wait to see a doctor who tells me I need to wait to see someone else. Anyways the important part is that she is home and growing... she is 10 lbs 2 oz, drinking 85 cc every 3 hours. I took inventory of the breastmilk the other day, I only have enough for about one more month :-(

This week we have our first set of vaccines and another follow up on her eyes, thank you for all your prayers, thoughts and positive energy. A special thank you to Moms Club for their assistance through the Mother2Mother fund, we appreciate the way they stepped up to give us a hand. I continue to thank God for Amber, for my family, and for all of you our friends. We pray that each of you are blessed each day, how we are blessed.

New Family Picture

3 Weeks Later.

As Amber naps, Kyana & Taylor wrestle in the living room and Kurt & I think how grateful we are to be home together. I know you all want to know how Amber is doing but know that life is hectic so you wait for the blog... I will do my best to write new posting every Sunday, even if it's just a few pictures so you can check on Monday. You can always email, call or text but I don't promise I will always be able to respond right away.

From head to toe, this is how Amber is doing:

Neurology - we have an appointment in September, for now we just need to keep up with her physical therapy and see how being at home helps her. There is nothing we can do, just wait.

Opthalmology - Went to LA, her right eye has scar tissue so we need to add dialation drops twice a day and put a patch on her left eye for an hour a day to help exersice the right eye. We are going to try to keep our follow up appointments in Orange with a different doctor until it's time for her lense replacement when she is older. They might prescribe contact lenses should know more soon.

ENT (Ear, Nose and Throat) - We have to keep an eye on her left ear because it might collect fluid, have a follow up appointment in September, but she can hear out of both. Her nose is good but due to the narrow right nostral passage way we also need to keep an eye on it. Swallow therapy was due to start last week, therapist had to go out of town so we are starting on Tuesday this week.

Cardiology - Will keep seeing her once a month. He just switched her medications (decreased) and did some blood work. Potassium seemed high and gluten was very, very low but they felt it was not conclusive since gluten was so low she should have been in a sleep coma. Went in for a quick EKG all is well, next appointment in August.

Endocrinology - Appointment on Monday will probably do more blood work and hopefully find out she doesn't need any hormonal supplements.

GI (Gastro Intestinal) - change her G-tube to a MIC-KEY button, much easier for her to be held without the g-tube hanging down. We plug in the feeding tube into MIC-KEY then unplug when done. She is a little more gassy but we are dealing with it. Her anus still has what they call a "fisher" which is causing her to bleed or have blood in her diapers. It doesn't happen often, we are putting an ointment as a barrier to help it heal. Dr increased her feeding from 75cc to 85cc so from a little over 2 ounces to almost 3 ounces. She eats every 3 hours, no matter what... I forgot how many diapers baby use in a day.

Pediatrician - She will get her first set of vaccines at the end of July.

We had our first family walk on Friday night, she was awake the whole time looking around and taking in all that refresh RSM air. Thank you for all your prayers and good thoughts.

Almost 5 Months

Amber will be 5 months tomorrow (07/10) we have a cardiology appointment and I will update with her current weight. She is doing well except for a minor blood in her stool that could be cause by strain from pooping. On Sunday she had little red blood spots in her morning poopie diaper but nothing the rest of the day, then same on Monday and Tuesday. But on Wednesday it was in all her poopie diapers, needless, to say without getting too disgusting she’s ok just a little cut in her bottom. It should go away on it’s own but we will discuss it with GI on Monday. Today we saw the eye doctor. All is going well with her sight. Her right eye is a little lazy so we will be doing a patch over her left eye one hour a day to make it work and we are back to eye drops twice a day. Overall she is doing well and the girls just love her. Kurt and I continue to get little sleep. Kyana will start Vacation Bible School on Monday, while Taylor will start her summer program at the Montessori school to prepare her for Kindergarten in September. My mom will continue to come on Monday and/or Tuesday while my in-laws go home on Monday for a much needed break from all their wonderful help. It will be interesting to see how I handle life at home with three kids by myself during the day.

Thank you for keeping Amber in your prayers and in your hearts, please continue to pray for things to reveal themselves as we learn more about her brain, her physical situation (g-tube for feeding, eye sight, blood in poop, oral therapy and physical therapy) and of course her heart. Also keep these babies in your prayers too: Molly, who had 1 of 3 heart surgeries and it home trying to gain weight. Graciella, who had her heart surgery last week, was extubated, is doing well and has down syndrome. Mikey, whose mom had to go back to work after taking 6 months off to take care of him, he still needs 2 more heart surgeries and has liver problems. Milagros, who just had her 2nd heart surgery and should be going home soon to wait for her 3rd surgery. I hope you enjoy the updated pics…take care and God bless you.

One Full Week

We still have not beaten our record nine days at home but so far all is going well. Amber is enjoying being home, playing with the girls but most of all being carried. I can't stop holding her every chance I get but I have to wrestle her from my mom or mother-in-law because they like to hold her too. Not to mention Kyana and Taylor are always asking to hold her too.

She eats via g-tube 75 cc every 3 hours which means a little over 2 oz every 3 hrs. She gets some type of medicine each time she eats too (Lasix, Diuril, Sodium Chloride, Multivitamin, Prevacid and Simenthicone - meds to release fluid, replenish electrolytes and prevent gas/acid). I take her for a little sun out in the backyard and for her doctors’ appointments. Her first set of vaccines are scheduled for the end of July.

We have to follow up with Neurology, Geneticist, Ear/Nose/Throat specialist, Endocrinologist, Cardiologist, regular Pediatrician, Gastro Intestinal specialist and Opthalmologist. Then physical therapy and oral therapy… I have to take a breath here, oh wait that would be it :-). The Cardiac Surgeon has signed off on her which is one less person I need to follow up with unless her cardiologist feels we need to for some reason. Well as promised I hope you enjoyed the updated pictures.

Little Sleep... little time... good problem to have

So I've been told... what's going on? We don't want to call you and bother you but we don't know how things are going. I am happy to say that little sleep and little time are good problems to have. It means there's a baby at home :-)

She is doing well, we are still trying to learn how to make her comfortable and keep her happy. For the most part she is but every now and then she has her moments of being restless. I am sure it's totally normal baby stuff but for us is a little uncertain. So we are trying to relax and let it run it's course, she settles, we settle and everyone sleeps... or what I call nap because we are up again to feed, change, etc... I will add more soon and include some pictures.