Sunday, May 29, 2011

Home sweet home...

Yup that's right Blake arrived home on Friday 5/26/2011... exactly 9 months to the day that he took life via IVF. Not many people can say that. My original due date was this past Monday 5/23/2011, so he came home "right on time".  He is loving life and enjoys keeping Mommy and Daddy awake from 12am - 3am nightly. He's not a screamer and is content 24-7, he just likes to "talk"...other then that he sleeps well at night and pretty much has to be woke up to eat after 9 pm. We get some good wake times with him throughout the day too. So far his favorite hobby is snuggling and checking out the animals. We had our first visit with our home health nurse today and she gave us a good report, he is still gaining weight and all of his measurements are on track. He's now 19 1/2 inches tall and 8lbs, 9ozs! Oh and he took a massive pee all down my shirt today when I was carrying him over to the sink for bath time.

Addison is settling in well at her temporary home too. Hopefully it wont be much longer before she joins her brother at our home.  Doctors are saying she will need surgery and a g-tube for her reflux. We are hoping that this will take place in the next week so that her Daddy can be there and not have to miss much more time from work because he wants to be home with us when she is finally discharged. She is still wowing her medical team and is offically 7 lbs, 3 ozs! My how far we've come. Today they moved her in to her own "private" suite. Due to her testing positive for MSSA/MRSA she is in isolation. Originally she was rooming in with another little guy with the same situation but they had some space and moved her into her own room so things won't be so crowded when we visit. Our first visit with Blake was though and cramped but we managed. Hopefully our next visit will go better.

I thought NICU life with two babies at the hospital was hard, but I am pretty sure this is harder (or atleast presents its own challanges). We will figure it all out though and I am sure the minute we get the hang of things Addison will be home and we will be adjusting all over again.

Thursday, May 26, 2011

Closing a chapter...

Well this is it, one chapter is ending as another is beginning. Addison has offically been transferred to her new home (that we are now calling  "The Big U"), I must say for such an "upscale" hospital the cliental is anything but "upscale" or "classy", with the exception of Addison of course. And this time tomorrow night I will be getting ready to wake up and feed one little boy named....BLAKE. That's right, little man is coming home!

I am currently hanging out here at the "old" NICU spending Blake's last night here with him and completing monitor training. Then it's home to catch a quick cat nap, wait for the oxygen people, catch another cat nap...maybe go buy Blake his swing (because let's face it, I can't hold him 24-7 regardless of what he thinks) and once Daddy get's off of work we will be driving to our "home away from home" for the past three months and picking up our son. Words cannot even begin to express the feelings we have right now.

It is so hard to be sitting here and not seeing Addison to Blake's right and being able to hold her while he sleeps and vice it is a one or other deal for now. Sigh... but we'll get there. I swear I cried more today then I probably had all this time. Maybe it was just time to get it all out.

As the doctor and nurse practioner made their rounds this morning, I made sure to snap pictures to save for the babies. Dr. K was the doctor who spent more then the first 48 hours with her and did everything he could think of to keep her thriving. And ofcourse their's V or "Aunt V" as well like to call her, she too shares a special bond with Addison. I can't tell you home many gray hairs she must have because of our little girl.

We've had our share of ups and downs and the staff here has seen us at our best and at our worst, but we've made it and here we are...

Our journey is far from over and it a lot of ways it is just beginning. While Blake will be home with us tomorrow, Big U will begin running test to see if our little girl can bottle feed and decide if she will need a G-tube as well as when possibly they may do the surgery to repair her cleft palate. As always thank you for your continued prayers these babies are proof in the power of prayer.

Tuesday, May 24, 2011

Big changes...

Let's see...first and for most Blake is now officially 8 pounds! Holy Moly! And Addison (better known as Peanut) is now 6 pounds 14 ozs.

The last time I wrote that they were actually saying the word "discharge" in the same sentence as Blake. Well ladies and gentleman, it's official Blake is coming home this Thursday. I personally have been a roller coaster of emotions, I am so happy that he is finally coming home but yet it's bittersweet because we are leaving Addison behind temporarily.

And let me just tell you, over all I have not been impressed with the hospital's disorganization and I am even more disappointed in the insurance companies. For starters I asked the hospital more then once if they had our updated phone numbers to give to the heart monitor and home oxygen people "Yes, yes." I was assured. Well guess what...WRONG! Today after the nurse practitioner scheduled all of these follow up appointments and such that Blake will be needing, I ask again to clarify because now 24 + hours later, I STILL have not heard from the heart monitor and home oxygen companies. Want to guess why? Yup because they don't have the right phone number...Which presents a valid point...IF THERE WAS AN EMERGENCY, WOULD YOU HAVE BEEN ABLE TO GET A HOLD OF ME?????? So after giving my phone number to the babies' nurse, asking several times if things have been was still not done...EPIC FAIL!

To make it better some fool in the insurance office neglected to submit authorization to the primary insurance and went straight to the secondary insurance, which I might add is being a tool and does not see reason for Blake to have oxygen at home until Sunday even though he is coming home Thursday. Oh and when I called the primary insurance to get the ball rolling...they inform me that they didn't even know the twins were still in the NICU! They haven't gotten a claim since they were born! F-A-B-U-L-O-U-S! What winners I tell you. So I guess I know how I will be spending my coming days, trying to clean up someone elses mess. This is, in between bottles and diapers and of course running to visit Addison.

In Addison news, they suddenly decided that they were going to not wait until Monday to transfer her but instead do this on Thursday, the same day her brother comes home. Um, gee thanks. Talk about a lot to handle, and the worst part is it's not a urgent situation so it could have waited at least a day. I am trying to look at it from a positive stand point...Neither Jake nor I will be able to accompany her in transit (stupidest rule EVER) and will have to wait over an hour for confirmation that she has arrived/be able to see her. So Blake's homecoming will be my diversion. But seriously, could they have given me a second to breath and absorb?

I also found out today that they tried to bottle feed her. Why I have no clue what so ever and I am not even sure if they used the special nipples they were talking about because of her cleft palate. I tell you never in my life will I be so glad to get away from this hospital. And what's sad is that the NICU is full of some pretty great nurses, but it's just so disorganized and the lack of communication between parents and staff is astounding. If their is another child in our future I can assure you I will not be going back there.

Please as always continue to pray for us, we are closing one chapter and beginning another. With a little luck this chapter will be shorter and less eventful and will lead to a much bigger and happier chapter in our lives.

Saturday, May 14, 2011

Three months old!!!!!

Yup that's right our precious miracles are 3 months old today....boy how time flys. Not a whole lot of new stuff going on... Blake is still off oxygen except for when he eats and they are working on a decrease in Addison's cannula flow now, but other then that they are thriving... Blake is now 7lbs 8 ozs and Addison is 5 lbs 12 ozs. (In the words of our fav. Doc...Addison's life saver, literally, Dr. Kapoor "They've come a loooonnnnngggg way!)

Thank you for all the continuted prayers and we are looking forward to having our babies home with us soon...(fingers crossed)

Blake at Birth
Blake 1 month old
Blake 2 months old

Blake 3 monts old

Addison at Birth
Addison 1 month old
Addison 2 months old

Addison 3 months old

Sunday, May 8, 2011

Happy Mother's Day

Wow, my first Mother's a some"one" other then the puppies. To two beautiful, happy, miracle babies. How lucky am I? Pretty darn lucky if you ask me.

Today consisted of a nicely prepared breakfast from Jake the Grouch (yes he was a grump this morning, but eventually turned back into his normal mellow self). Rounds with Dr. Alex (one of my favorites, who spent a month as the babies' attending), where we got a fairly good report and he also offered some insight on our precious Addison's upcoming "events". Dr. A is also a Neo at the hospital where she will be transferred (he actually "belongs" to them, but fills in at our current hospital), so he has a bit more of an understanding of how their NICU works and their protocol. Followed by an afternoon nap, a beautiful card from Jake and the babies, spaghetti dinner (homemade by hubby himself) and a return visit to the NICU where we gave Addison a bath and fed Blake...and where I received one of the most precious Mother's Day gifts ever, clay footprints of the babies in a sea shell. One of the nurses does that every year for the mom's, I couldn't be more lucky, and even more so because both of the babies cooperated enough to let her stick their feet in the clay. (I will add a picture of the footprints later once I find my digital's around here somewhere.)

And now for some baby news...

Good news, is he honestly believes that Addison will not need the surgery to help with her reflux and that she has a very good chance of out growing it while we "wait" until she is of an appropriate age/weight, etc to further discuss it...Bad news, is that he thinks this reflux will buy her another 7-8 weeks in the NICU. He did however caution us to take that with a grain of salt because he does feel she may darn well prove his theory all wrong and get wind of her brother coming home and change her tune. Dr. A, is someone we've grown to trust immensely...he was the doctor who actually sat down and talked us through our decision to put Addison on steroids to get her off the ventilator. And honestly I love it when a doctor who has saw "the good, bad and ugly" comes back because I feel like then we get a real interpretation of how far they have come and how well they really are doing. That being said, she will still MOST LIKELY need the surgery for the cleft palate, but that won't be for a good 3-9 months depending on various things, most of which we won't know until she is seen by the specialist.

Blake is now on .3 liters on the regular cannula and the plan is to take him off of it tomorrow. He has taken every bottle now for the past 24 hours and if he keeps that up for a few more days...BYE BYE FEEDING TUBE!!!!

Thanks to the night nurse last night Addison decided to cooperate with Mommy for Mother's Day and let me enjoy some snuggle time with her, that actually lasted longer then 5 minutes before she decided to hold her breath and start to turn gray (but hey at least it wasn't that pretty shade of blue she likes to try sometimes.) And they are planning to possibly moving the feeding tube back into Addison's stomach tomorrow. Please send us some prayers that her reflux well stay under control and that hopefully we can start bottle feeding (and that she will tolerate all of that.)

To all the Momma's out there, I hope your day was I am off to get some rest so I can be at the hospital in time for rounds tomorrow.

Friday, May 6, 2011

Yet another bump in the road...

And yet more proof that our NICU journey is far from over...

We got news today that Addison will be transferred to a different hospital once her brother is discharged. (I am glad that they will be keeping them together for now.) She has a cleft palate and severe reflux, either problem can create issues all their own, together it's making for one miserable baby. So what does this mean?

Right now all we know is that the plan is to start next week by trying to move her feeding tube out of her intestine and back into her stomach and see if she tolerates it. (They have already started her on an antacid to help.) If she tolerates that then we may escape any further treatment for the reflux. And then there is the bottle feeding...because of the cleft palate it may not be an option, but we will have to see. As we have learned from day one, everything seems to be a wait and see game. It is very possible that we could escape any treatment, BUT (and that's a very big BUT) the Neo doesn't think it will be able to go untreated, surgery for the cleft palate seems almost inevitable. (And my research points to the same conclusion.) In the meantime I will pray for a miracle and we will get thru this one day at a time.

As for Mr. Blake...yeah he's planning a jail break. Rumors are starting to fly that little man may be on his way home. We have reached a point where we are able to attempt a bottle at every feed now so if he can take a bottle full time, that feeding tube is coming out and he will be one step closer to coming home. From there he has to be 5 days Brady free and pass his car seat test. He is back on 1 liter regular cannula, which is something that he could come home with, but the plan it to try and take that away too this weekend. Right now they are saying he may just need the extra help with the oxygen while eating and could come home with it for that purpose only, but they are promising to work with him and see what he really needs.

Oh and it gets better.... DADDY GAVE HIS FIRST BATH!!!!! Yup you read that right, Jake bathed both babies for the first time last night and tonight! He did a great job and the babies enjoyed every minute. He also feed Blake half of his bottle tonight and got a burp out of him!

It's all bittersweet. They have come so far and we are so very proud. But all of this is overwhelming and I will admit, in the beginning (when I was pregnant) I never thought I'd come home one baby at a time. I know that Ms. Addison won't be far behind, but this is soooo not how I planned it. Please keep those prayers coming, we know we wouldn't have made it this far without all the support.

Sunday, May 1, 2011

Slow but steady...for the most part.

Ok so first off...Blake is now 6lbs. 2ozs. and Addison is 4lbs. 14ozs. And both of them have outgrown their preemie clothes (this is a happy/sad moment for me, some of those outfits were pretty damn cute but I am glad they are growing), Addison can still fit in a few of them, but she has some length on her which makes it difficult.

The past three weeks we have seen three doctors rotate thru, each with their own mission for the babies. The end result...slow but steady progress. Addison is now back on the High Flo Cannula at 4 liters and Blake WAS on a regular flo cannula at 1 liter (note: Blake's cannula settings were at the "I can come home on O2" point.) I say WAS because suddenly when we went back for a visit tonight they said he was "pulling" and breathing rapidly (I have to admit, I wasn't convinced though). This could have something to do with the cold that he seems to have caught from somewhere...but the end result was blood work, xray, putting him back on High Flo at 3 liters (which seems a bit drastic to me) and stopping his bottle feedings (after just increasing to twice a day). His blood work came back normal, so now we have to wait until rounds tomorrow to see where we will go from here.

It's very frustrating right now because the Neo who was on last week, mentioned that often times doctors tend to treat x-rays and not the patient, his lungs may "look" one way, but how is he truly behaving? This is also the same doctor that set him to "outgrow" his diuretics because she thinks he is stable enough. In the back of my mind I can't help but wonder who's right in all of this. The Neo that's on this week is the one who was actually in the delivery room with me, so she knows how far they have truly come (which leads me to believe that she may be more cautious and unfortunately hold progress back.) I am really hoping we can get him back down to at least 2 liters and resume bottle feeding tomorrow, Blake enjoys it as much as I do...

Speaking of the bottle feeds...yeah um, Blake has officially taken 3 whole entire bottles and he is so stinking cute about it... When  it's time to burp, I've barely got the bottle out and he burps and is smacking his lips and rooting for more, and when it's gone he looks for refills. (He gets that from Daddy... lol)

Other then being on High Flo, there have been no real changes for Ms. Addison. They started her on Prevacid today for her reflux so hopefully we can being working on bottle feeds and OG (rather then OJ) feeds with her.

I also have to say I am a little disappointed in the nursing staff today, both babies got x-rays tonight. Blake's feeding tube was pushed in WAY to far and was in the beginning of his intestine while Addison's was in her stomach rather then in her intestine where they wanted it (that's the OJ tube)...which could explain her recent increase in Brady episodes due to reflux. They are supposed to be checking placement of these tubes every three hours at a minimum, so how in the H3LL did they miss that? (This will be a point of discussion in rounds tomorrow for sure).

So for now, I think I have covered it to bed I go.