This child lives up to his nickname... Tank!

Frankie is such a tough, fighting little man. He was awfully sick this time last week and now he's his old self again! Thank God!

Frankie is officially on breast milk again! And, it's not fortified! At least not yet. They may start doing it again but I'm not sure yet. Frankie's goals so he can head back home will be to be at full feeds again and for us to ween his oxygen back down to a level that we can go home on. He is currently still on 2 liters. They wanted him to try eating again first before weening. They didn't want to do multiple things at once and then not know which one caused the issue.

Currently Frankie is on lasixs (water pill), his sildenifil (Viagra), Pepcid and his breast milk. Oh and his oxygen. They will ween down his oxygen and lasixs before we head out again. He is no longer on his tpn (iv nutrition) and lipids (iv fat) since he's taking a fair amount of breast milk. Right now he is running at 20ml/hr. They will increase that to 25ml/hr at 10pm. And then again to 30ml/hr at 10am. Holding steady at 30 if he can tolerate it. Fingers crossed. He's never had this much volume before.

He's been in a great mood the last few days! He's finally getting to eat again and seems to be pretty well recovered from surgery. I've tried to give him a bottle again but he has this learned behavior of "see a bottle... Cue tears!". So, we are working on it. I won't give up but I also don't want it to be a bad thing for him and in the future struggle even more to get him to eat.

We aren't sure if we are doing hernia surgery before we go or not. Ever since his intestinal blockage surgery, we haven't seen the hernia. Our nurse this evening is going to ask about it in early morning rounds. If he is getting surgery again we wanted to talk to them about how they will do anesthesia. I really would hate for Frankie to be intubated (on a ventilator) again. Especially for such a mine surgery. There is a possibility of them doing a spinal (like they did for my c section) instead. It's just something we will have to talk to them about.

I talked with the cardiologist yesterday about his asd. They don't usually perform surgery to repair it until the child is 4-5 years old. He said Frankie would be 2 at the earliest. That's a relief. And they do the surgery like a cardiac cath. Not by cranking open his chest. Another relief.

That's all for now! Everyone enjoy their new year! Love to you all!!!!

Day 10 of our second visit....

We have officially been back in the hospital for 10 days. In these 10 days, the three of us have gone on one hell of a ride! We went from, crap! Heading to the ER for dehydration, to oh shit! This is serious, to preparing ourselves to loose Frankie to watching him strive and totally kick his intestinal issues in the face! This kid is a rock star! We don't call him Tank for nothing!

As of today, Frank the tank is doing good! We are all impressed at how well, actually. He no longer has his replogle in. Thank goodness. That thing was huge! It was the tube that sucked the juices out if his stomach. Frankie has been successfully pooping! I never thought I'd get so excited about poop! He is now on Pedialyte. He is getting a continuous feed of it through an ng tube at the rate of 5ml/hr. I asked why we weren't bottle feeding and the surgeons want to just see how he does on the ng tube of Pedialyte for 24 hours. Introducing the bottle introduces air in the stomach and they don't want to do that yet. So, if he does well with this, we should be able to start him on breast milk tomorrow!

Frankie's sleeping schedule is finally getting back to normal again. He has slept pretty well the last 2 nights in a row. Let's hope he keeps it up!

Tank has lost some weight through out all of this. So, hopefully he takes breast milk well and we can fatten him up quicker this time. Eating shouldn't be as much of an issue as it was previously but we shall see!

We spent Frankie's first Christmas in the Nicu. Joe and I stayed here all day with him and opened his gifts with him. It wasn't the Christmas we had expected this year but we were happy he is doing well (most important) and we were happy to be in our second home with all our favorite nurses.

Frankie, Joe and I are truly blessed to have so many amazing people in our lives! From friends and family to nurses and doctors, we're so lucky! We hope that everyone had a great Christmas! And a huge thank you for all the prayers. It's so cool how they work!

I think that's it for now. Love to you all!

QUICK UPDATE

He's doing well! He is no longer on the ventilator, his catheter has been removed, is arterial line has been removed as well as an iv line, he's had a bath and is sleeping. Praying things stay well (we anticipate them to)! GO FRANKIE!

His face is irritated from the tape and he's still swollen but there's no more vent! Poor chubbers. He looks so beat up. They are giving him more meds through his iv to help remove some of the water that he is retaining. Love you all!

Crazy Gnarly Few Days....

Saturday the 17th was great, Frank the Tank acted no different. We had company over and went to bed around 11. Around 5am Frankie woke for his morning release. Well this morning it came from both ends. Frankie spitting up is nothing new. So common that I was given the go ahead to leave a little after 6 to run up to Peroria IL to buy a new tig welder. Around 730 Alex called me that he was still vomiting. She then called our old Docs at Children's and they told her to turn off his constant feeds for 4 hours and then turn them back on at half amount. So as the morning went on, the tank kept puking, first breast milk, then a water like substance and then a little after noon, blood. Alex got to the ER at Children's about 45 minutes ahead of me. Puking blood not good, being dehydrated also not good. Xrays were done and it was decided he just had a virus and to watch him in the hospital for 24hrs. I became worried about his hernia that we had visited about a few days earlier. I kept pushing for hernia surgery. To fast forward they found him to have an intestinal blockage and the backing up was causing the vomiting. First they pumped his stomach and his bladder to try and release pressure so hopefully it would fix itself. By this point the boy was in a lot of pain and hadn't eaten in 2 days. He would sleep for 10 minutes and wake up screaming. He was swollen, hurting and unhappy. The head surgeon didn't know what to do. There had never been a case like this or read about one. None of his colleges had either. They whole surgery was an unknown. It was to start as an exploratory and then they would correct as they went. There were so many concerns. Where was the defect? Was it multiple or single? Was it corrective? Could he survive the anesthesia with his pulmonary hyper tension? How could they cut without compromising the omphalocele? Was there a dead section that would have be removed? Was the intestine fused to the omphalocele membrane? If they had to compromise the omphalocele they would have to close it back up with a synthetic membrane which would promote infection. The surgeons expected him to survive the surgery but the future was unknown. About 3 hours prior to surgery I cut the gauze that wrapped around his body. He almost instantly started looking better. His swelling went down, his breathing got better, he woke up, and although never smiled, he was wide awake and aloud us to play with him. Surgery was planned for the end of the day so the surgeons could take their time. We sent poor Frankie to surgery hoping for the best. The best is what happened. They were able to cut in under the omphalocele and pull out his intestines. He had scar tissue on them. This was odd as he never had trauma or surgery to make these scars, but they were able to remove the scar tissue that was in essence cinching the intestines. They were able to do this without compromising the omphalocele or intestines. When they opened his up, they said it was almost pressurized the fluid that come out, so since the omphalocele was stretched they were able to put it all back into the omphalocele (not abdomen) and close him up. They had put him on a ventilator for this surgery since he was sedated. He is still on this now, but they are waiting to here back on a heart echo to see if his Broviac, which is a central catheter (IV) is placed correctly. If it is, they will start tpn (iv nutrition)and start weening him off the ventilator. He is swollen like a sumo wrestler now and is hard to see with 8 thousand things coming out of him. But this could be the break we need. If this scar tissue has been there since birth, then his could be the cause of all his vomiting. The intestines may have been cinched, enough to back it up, but not enough to shut it down. If that is the case, more than likely he will be able to tolerate his feeds better, and grow, grow, grow. There is a lot more to all of this, but I want to at least give everyone an idea of what is going on. Thanks for all the prayers and support of everyone. We think everything will be OK.

In the ER before we were admitted and knew the severity of the situation.

Just before surgery.

Another before surgery.

Very swollen and scary looking just after surgery. And on a ventilator.

Laying in bed after surgery. We are about to pull the vent now! Love you all!

Our second week home!

I started writing this on Wednesday but quickly got distracted with Frankie and we actually took a little trip to the ER at Children's. Let me start by saying that Frankie is okay! We went because of his hernia. He has had it for awhile but it was looking worse and we were concerned. I called newborn medicine and told them what was going on and they said to go to the ER and that they would let them know we were on our way. We saw the surgeon that we saw all the time in the Nicu and she said that since we could push it back up in there it was okay. I was concerned about the color of it, too. It doesn't look that color all the time so it's also not a concern at the moment. They were worried about the intestines being incarcerated and dying off. If that happens, it will be 100 times more difficult than a normal hernia. The surgeons wanted to wait and do the hernia surgery with the O surgery but I don't see that happening anymore. Since it is progressively getting worse, I see them doing the surgery before the O. We go to see the surgeons on Thursday, the 22nd at 8:50am. He will let us know what he wants to do and he will take a look at the O. I will keep everyone posted on the news from that appointment.

We aren't supposed to go see the cardiologist until the 24th of January. When I talked to newborn medicine today, I thought that it seemed like a long time away considering his PPHN is pretty "bad". She said that if I was concerned I could call and make the appointment sooner. He seems to be working a little harder to breath lately and it has me a little worried. It doesn't happen all the time but more so the last couple of days. I'm going to watch over him this weekend and call if necessary. Hopefully he's just having a rough day.

Frankie is continously gaining weight which is a plus. Hoping he keeps up the good growth so that he can outgrow this PPHN!

We seem to be in more of a routine now but some days are better than others. It's just so frustrating having him hooked up to all of this crap. I'm thankful to be home but I wish he wasn't hooked up to anything! I'm dying to just be able to scoop him up and take him wherever I want in the house without it being a big ordeal. And, I want to see his sweet face without shit on it.

So far, everyone has been doing really well with washing their hands and staying away when they aren't feeling well. I want to say THANK YOU for that and most importantly, Frankie's health thanks you! That being said, I still expect everyone to keep it up! :) Flu and cold season is only just beginning my friends!

We are looking forward to Frankie's first Christmas. We still aren't sure about how we will work all the family functions. It will be a last minute decision and we will let everyone know about it when the time comes.

 

We  were changing his face stuff. Look how beautiful! Wish he could look like this all the time!

I think that's all for now. If anyone has any questions, feel free to ask. Please keep the prayers coming to the little fella. We may be home but we certainly are still just in the beginning of this journey. Thankful for you all. Much love!

 Fighting his sleep, as usual!

 Chillin' in his Bumbo!

Our first week at home!

I can't believe we have already been home a week! It's such a great feeling. We feel like we are new parents all over again! We were so used to our routine and how things worked at the hospital and when we got home we have to find them all over again! We are still working on that. Frankie is adjusting well! He sleeps like a champ! Frankie falls asleep anywhere from 10-1130 at night and sleeps anywhere from 8-10am. Usually around 6am he wakes up making some major grunting noises, takes a big poop and goes back to sleep after I change him. I just feel bad for him because pooping isn't always an easy thing for an O baby!

A nurse will be coming twice a week for 2 weeks to do an assessment on Frankie. She will listen to him, look at him, weigh him. All that good stuff that they used to do daily at the hospital. After the two weeks is up she will be coming monthly to do it and to give him his RSV shot. Thank God for those! And thank God for insurance! Otherwise each shot would cost anywhere from $1,000-$3,000! The shot doesn't prevent him from getting it but it does protect him from getting it severely, if he does get it (hopefully not).

Frankie will also be getting therapy a couple times a week. The occupational therapist will help Frankie with everything from the waist up, including feeding. The physical therapist will help him with everything from the waist down including muscle tone. Each of them will come once a week.

When the nurse was here last night she said all looked and sounded well and he is now 9lb 2oz! Go Frankie! He was 8lb 12oz when we left the Nicu on Wednesday last week. She will be coming tomorrow again to assess him.

I am completely obsessed with keeping Frankie healthy, as I should be. :) So, here are some reminder...
1. Wash your hands.... with soap and water. It is what's best. Then you can use hand sanitizer after that.

2. Second and third hand smoke: People smoke, I get that. Here's my thing... if you do it and your clothes reek in smell of it, please do not hold my child. It affect on him and my biggest concern is the affect on his respiratory system.
Third-hand smoke can remain indoors even long after the smoking has stopped. Similar to low-level lead exposure, low levels of tobacco particulates have been associated with a higher prevalence of ear infections and respiratory symptoms, as well as cognitive deficits among children.

In short, the same chemicals that leave a stale cigarette odor on clothes and upholstery also can be swallowed, inhaled or absorbed through the skin of non-smokers. Smoke residue may linger for hours, days or months, depending on the ventilation and the level of contamination.

If you want to smoke, wear a jacket while smoking outside so that you can take if off before holding Frankie and please be sure to wash your hands. THANK YOU!

3. Wash your hands :)

Frankie's O is still looking great. It has made any more dramatic changes in size recently. We go to see surgery on 12/22 for them to look at it again and that same day we get his hearing test done. We don't see newborn medicine and the cardiologist until January.

That's all my crazy nonsense for now. Frankie is currently tooting up a storm next to me on the couch! I'm going to go take care of that. Love to you all!

Day 74-75: Frankie Felon Has Been Paroled!!!

Free at last, free at last thank God almighty we are free at last, but then again it is very bittersweet. The great people at Children's have truly changed our lives forever. They have become friends and family and we will miss them dearly. We fully expect to hear from and will be visiting them frequently. We also want to thank all of our friends and family that have helped us through this journey. Not only have you guys been there for us emotionally, you have helped us physically. Gifts and meals just to name a few.

So here is how it went down. Yesterday morning we had home health care drop by and drop us our oxygen. We were under the impression it would be an oxygen tank, it was not. It was a machine that filters the oxygen from the air and as long as we have electricity, we have oxygen. For when we are not in the home, we have portable tanks. Those tanks are roughly 18 inches long and 4 inches in diameter. At .2 liter flow, that bottle will last 11 hrs. Which they delivered to the hospital a little later.

We arrived at the hospital around noon and packed up our belongings. Met with doctors, therapists, nurses and other employees who had discharge items and others who just want to say good bye. We were done on the hospital end by 2, but had to wait until almost 4 to leave. We had to wait again for home health to come by the hospital and drop off our portable oxygen, constant feed machine, and our pulse ox  machine to measure his oxygen saturation. Like I said in the begining, it was very bittersweet, sure we want to bring Frankie home, but this is what we knew of his life and parent hood until about 24 hrs ago.

When we got home it was strange. First thing first, Frankie got a tour of the shop. Then I took him inside. There was a ton of unloading, unpacking, opening of items we had needed before, and settling in. We finally got to bed around 11. Frankie slept in a bassinet on Alex's side of the bed. Since I knew I would wake up every 5 minutes and have to sit up to see into the bassinet, I set up our video monitor. I was able to see the boy quite easily then. Frankie slept through the night and actually was still very tired at 8 this morning when we went to get up. Since Alex insisted on the boy being on her side of the bed, she did not get much sleep. Anytime he needed anything, she had beat me there. I.E. Diapers,  medicine, shut off or restarting the feeding machine, so on so forth. Not to mention nerves didn't help her sleeping either.

We got up this morning and took the Frank the Tank to meet his pediatrician to get a base line for if he has any trouble in the future. He does not like his car seat. We have egg crate foam that has a hole cut out to put his omphalocele through. Then towels are rolled up and put on either side of him to keep him from moving side to side in the seat. He does enjoy car rides, but hated the seat.  It was actually a tearful ride home from the pediatrician because he was so pissed about being in the seat.

We spend the rest of the day trying to get settled in. Putting things were we wanted them. I ended building a rack on the feeding machine tree to house the pulse ox machine too. Wires and a power strip make it less cluttered. We did give Frankie a bath, rewrapped the omphalocele, replaced his nose piece with a little but smaller one that came with the oxygen machine and retaped his face. While we had the tape off of his face for the new nose piece, his feeding tube slide out. I had to replace that, which I absolutely hate doing. It is the hardest thing in the would to cause this awesome little boy pain and discomfort. When he cries it makes me want to.

Besides that we just took it easy this evening. Ate some lasagna and watched TV. Alex and Frankie just went up to be and I am sure to follow them here shortly.

So we are home, Frankie sounds a lot louder in this quiet house, we more then even realized home much these nurses do to help us, while we were old pros at the hospital, we are learning it all over again. While we are happy as can be, we are scared to death.

P.S. Alex is upstairs and I have no one to proofread this, so it might read like pig latin. Also, we will do our best to update this blog as much as possible but without being bored out of our skulls at the hospital, it may be hard to find the time anymore.