PRAYERS please

Goodness, this is going to be a quick info filled update. Currently I am sitting in the hospital on bedrest. I called the hospital yesterday stating that I was having diarrhea and vomting and that I had a bad headache. They had me come in and did labs mostly just to appease me. But the labs came back bad, and then I had a big discussion with the doctor about how the baby isn't viable yet, and if I am already getting PRe-eclampsia or HELLP, the only resolution is to terminate this pregnancy. We have notified our prayer warriors and people have been praying. I ask that you do too. This mornign my liver tests were better than last night, but still not normal. And my platelet counts had dropped by about 30 points, but are still within the normal range. So at this point they are thinking that it probably isn't HELLP syndrome, but we will continue to watch the labs. Please be praying for this little miracle baby, and for our whole family. For wisdom for the doctors and for us. And for this baby to defy all the odds, and at the end of this, for not one person to deny how amazing God is:-)

I stink at this....

Officially pregnancy and I are not getting along. I have been feelingn like I was probably dehydrated for a couple of weeks, but nothing absolutely terrible and the OB's didn't seem at all concerned about it. Well after our marathon day in Boston on friday, I was feeling pretty terrible that night. I couldn'tkeep anything down. I contacted my doctor and she said she would meet me in the morning to give me IV fluids. They had a HORRIBLE time getting the IV in, it took them 9 attempts!!! They were going to send me up to the hospital but I begged them to just do it there. So thankfully they finally got the IV in. I needed 3 liters of fluid before I could even pee.
By their scale in the office I have lost 24 pounds in the last two months! By my scale at home I have lost 18lb. I just can't tolerate much in the way of food when I am pregnant. It makes me so mad. I get these crazy cravings for something that I know is going to taste absolutely fabulous. And then it comes right back up:-( YUCK!!! I am feeling like this time hasn't been as bas as with Sam and Sophia. I was doing IV fluids like every few days for weeks with them. Thankfully I am fifteen weeks now and this is hopefully coming to the end. With both Sam and Soph this severe nausea and vomiting stopped between 17 and 18 weeks. SO hopefully I am almost there.
I look like a bruised pin cushion! But thankfully I feel a little better and have some more energy today. I unfortunately didn't go to church as I am still feeling kind of crummy. But am hopeful that I can really recup some energy today.

After 3 weeks!!!!

After 3 weeks my handsome little guy FINALLY made it back to preschool today. The teacher seemed kind of nervous, as was I. But I know that God will protect him and that if I keep him out until all things are well and healthy he might never get there. He is feeling fabulous, he hasn't had any bloody noses the entire weekend, and like I said GOD WILL PROTECT HIM!! So I have a very happy little guy on my hands tonight, he had a lot of fun playing with his friends today. Tomorrow we are having another playdate with friends we haven't seen in a while, then we are heading into Childrens for his IVIG. And then wednesday another playdate. I am so thankful that God has placed so many wonderful people in my life, and in the lives of these kiddos:-)
In other news I did another shift at the hospital last night. It is hard to believe it has been six months since I hurt my back. And even harder to think that I may never get back to the baseline that I was at before. It is hard doing (in my opinion) NON-NURSING nurse work. I mean what I am doing is still important, but it isn't at all what I have in mind when I think of a nurse. And so I am struggling with "this new normal" and praying that soon I will get back to the place in which I can work in a setting at which I feel fulfilled and where I feel God calling me to go.
I also had a doctors appointment for myself today. I went to a specialist and got some information regarding my medical health as well as future medical decisions. I am surprised (in a good way)/ and disappointed in the results shared with me today. I know God knows and His plan is perfect so now we will just be praying for God's will in this situation

Sleep Apnea

Oh my goodness this sleep apnea is kicking my butt. After getting the results of Sam's sleep study last week, and definitely realizing that the surgery is needed because the apnea is "moderate to severe" I have become more anxious about it. Throw in this recent illness, and the CONSTANT alarming from his monitor last night and I am exhausted.
I spoke with his doctor this afternoon and she called down to Children's Hospital to see what the ENT on call recommended. His recommendation was to admit Sam to the hospital and to see if his oxygen level is affected by his episodes. So we will be heading into the hospital shortly after I pack a bag for Sophia, Sam and I. Thankfully I have wonderful friends who are willing to take care of our little princess:-)
I guess depending on how the sleep goes tonight at the hospital will determine what the next course of action is. If he requires a lot of oxygen and they are unable to maintain his oxygen level, then we will be transferred to Boston Children's either during the night or tomorrow. At this point I am not even sure what to pray for. If I pray for him to have a bad night so that they do the surgery sooner, then that means we will be in the hospital or at least away from home for Christmas, if I pray for him to have a good night, then they will continue the surgery out where it is scheduled and we will have a couple more weeks of misery...
I must add how blessed I feel to have such wonderful people supporting us through this time. Although I feel completely overwhelmed and stressed out, God continues to fill my path with people who just give of themselves so selflessly and bless us so richly. The wonderful couple who are taking Sophia for us tonight, are supposed to be going away to Cape Cod tomorrow, they are totally willing to change their plans to help us take care of Sophia. Thank you guys you are such a blessing!!!

Romans 8:37 (NIV) No, in all these things we are more than conquerors through him who loved us.

Trying to have the right attitude

So I am struggling with a bad attitude this week. :-( I was so hurt and disappointed when we asked someone for help this week, so that we would have someone to watch Sophia while Sammy was in the hospital, and when this person said no, it made me furious, not to mention was so hurtful. I keep telling myself not to question others choices, but it is so hard sometimes. I know that if someone said to me could you watch my baby, while my older child is in the hospital for a couple hours, I would do whatever I possibly could to help. So it is hard for me to understand when people won't help when it is so obviously needed. But all that aside this has reminded me this week that God has filled my life with some amazing friends and family that are willing to help. And I am so incredibly blessed.
In His perfect timing as always, after we learned that we still needed to find someone, a friend called and heard how upset I was by my voice, and said hey why don't I take her. What a blessing! And so it was perfect. Sophia had a wonderful time, and I was able to not be concerned about her knowing that she was being loved on completely.
On this journey with Sam, we have just been blessed so richly wish so many people that give of themselves so selflessly. Another friend when she heard I was looking for someone for Sophia, also offered. God has filled our lives with some amazingly wonderful people, who love us and are willing to do whatever they can to help. I am just so touched by so many. And I have to focus on that, I just have to...
Onto the rest of the story, so Sammy and I went up to the hospital (which by the way, since it was our local hospital and our pediatrician) he was super excited about, another tremendous blessing:-) Anyways we got up there and he got all hooked up to the monitors and we watched movies. He had more than 40 alarms in about a half hour time frame! I said to the pediatrician in the morning, see this is why I don't sleep! He had 3 episodes where he stopped breathing for more than 20seconds, and many more episodes where it was less than twenty seconds. The doctor seemed suprised at how many there were. She asked when we would be going back to see his doctor at Childrens and when she heard that it wasn't for two weeks, she decided she was going to contact him herself. Not sure what her thoughts/plans are....I am kind of hoping that we have a concrete plan in place by next week. I am praying that sometime soon we will be able to sleep at night without having our hand on his chest to make sure he is still breathing.

IVIG friday:-(

I must say that this friday was one of the worst IVIG days EVER!!! It was a fiasco from start to finish. It was a terribly long day. We got there and they called in an anesthesiologist to start his IV. It was literally a bloody mess. I ended up going home (less than 5 minutes away) since my friend was there to change my bloody clothes, and get a clean outfit for Sam. RIDICULOUS, we both had to have wardrobe changes after a doc starts an IV.
Next the crazy medicine was NOT there for hours. We were supposed to start at 8am, and the medication didn't arrive until almost 1pm. Needless to say it certainly was a long day. I think just the tension and stress of the day made my back just throb.
Each time we have the IVIG they check Sam's liver enzyme levels. One of the side effects of the IVIG is that it can elevate the liver enzymes, which it has been doing. It has always been mild, but this time some had been slightly worse, and some slightly better. I am thankful that some of the levels are better, and praying that they will all get better.
In GOOD news Sam weighs 35lb 8oz!!! He has been doing really well in the last two weeks or so with eating! It is so wonderful to have him eating well, and feeling hungry and having a desire to eat without having any negative side effects. He has been on the protonix for a few weeks now and it seems to be doing very well to help him:-)
I have only one pic that I took. My little sister gave SAm a Nintendo DS and he thinks it is the coolest thing ever, I cringe to see him use it. But I guess occasionally is ok.

IVIG, ENT and a WEDDING!!!

ENT:
Yesterday we went in and saw the ENT at Children's. It was a great appointment. They are hoping that we won't have to take out the adenoids. His nose/sinus' looked really good. His ears had no fluid in them. We will go back in december to make a decision, I guess a huge piece of that will be whether he has any sinus infections between now and then...
IVIG:
We came in for IVIG today at Heywood. It certainly has not gone as smoothly as I would have hoped. After multiple attempts for the IV, they called the anesthesiologist in to place it. He got it in on the first try, but it was a very bloody IV start. Sammy got pretty upset about this, especially because it got on his socks.
My baby brother is getting married tomorrow!!! I am so excited and can't wait. His fiance' my future sister is so wonderful and we are so thankful to be adding her to the family. Sophia is the flower girl and I can't wait for that either. BUSY BUSY BUSY!
Have a blessed weekend!!!

It's done!!! 8-)

Phew yesterday was an exhausting day! They had us go in for the scope, and they placed an IV (which by the way a male placed and Sam did not like this at all:-( Poor kid, I think was afraid of him). They gave him an IV dose of a medication called Amicar to help him clot. So that when they did biopsies he wouldn't bleed. The medication worked wonderfully, and he had NO bleeding!!! Thank you Lord!
They did two different biopsies and we should hopefully have those results by sometime next week. They are testing for a variety of things, the one thing I am wondering about is whether he does have some allergic inflammation in there. If he does, then I think they will recommend us going through allergy testing again, since it has been so inconclusive in the past. We shall see....
My brother, SIL, my sister, and a friend all flew in from Florida yesterday and came right up to the hospital to see us. It was such a great distraction for us. Sam had a blast playing with them.
Here are some pics from hte other day that I didn't get to post...

Sounds more complicated than expected....

The most recent time we were at the hospital, over the winter. Just hanging out and taking a nap


Posing with one of the nurses. He has them ALL wrapped around his finger8-)


Talking to Daddy on the phone last year when he had the scope done that lead to us really knowing that he had a bleeding problem...


Since we couldn't go play outside, Meme' took him for a ride on his IV pole8-)


Thrilled to pieces with his clear diet: He was so excited to eat as many popsicles as he wanted

Had a lengthy conversation with the charge nurse where Sam will be having his endoscopy on tuesday. She was confirming with me the details of the plan, and going over the hematologist's plan to pre-medicate Sammy for the procedure to help prevent hemorrhaging. Only I wasn't informed of this plan until this nurse discussed it with me. She also wondered if Sam would be staying overnight just to be observed which makes sense but I didn't even think about this, and GI doc didn't mention anything about staying over, so I am not sure what the plan will be now. If they are going with the hematologist medication plan we have to go in a couple of hours earlier so they can give him the medication via IV, if they don't then we just have to go in an hour prior to the procedure. Sam of course doesn't mind staying over in the hospital, he thinks it is kind of fun. As seen above in the old picture:-)
I am thankful that I will be able to stay with him until he is asleep, so at least he won't be afraid or feeling alone. And they allow me to be with him before he wakes up so I will be there when he opens his eyes. They will be intubating him which always makes me nervous but I know that God will be with him through it all.
It is so strange, this emotion of fear. I know that God has called me to not be afraid. But talking with this nurse tonight has certainly made me anxious. She kept asking me all these different questions about each body system and since the last procedure there have been several new issues that have arisen: the difficulty regulating his body temp, the increased bleeding, the difficulty with swollowing with gagging/vomiting, the apneic and bradycardic episodes....
Trying to F.R.O.G- Fully Rely On GOD!!!! Ps. 22:8 - He trusted in the Lord, let Him rescue Him; Let Him deliver Him, since He delights in Him!

Potty Training Chronicles Day Five and Heywood IVIG

Sammy and Carol (at his birthday party)

Today was NOT a good potty day! Sam had his IVIG today at Heywood, and therefore Sophia was with a friend. She didn't go on the potty once while there.:-( I am disappointed but oh well.
Sammy did well today with the IVIG. Nurse Carol was there and he just loves her. He went running down the hall and jumped into her arms, it made me so nervous, since her due date with baby number 3 is tomorrow, and I was afraid that she would get knocked over. She got the IV in on the first try, the labs were drawn easily. Sam complained all day that he didn't feel well, and actually stayed in the bed all day. He said he was so sick everywhere. He had a period where both his temp and heart rate increased but then they normalized again. I am not sure what will happen with the IVIG, if we will end up switching brands or something else.
Poor little guy stayed in the bed all afternoon, but when my sister Deanna got there he totally perked up and climbed all over her for a few minutes. Hoping that whatever is brewing will be averted since we got the IVIG today.

Heywood Hospital

We had Sam's third treatment for IVIG yesterday at Heywood. It went really well. They got the IV in on the first try, and one stick for the labs. Sam had fun playing with our nurse Chris and had a snack, watched a movie, and then fell asleep

Sleep Study

Preliminary results: NO CENTRAL SLEEP APNEA!!!
WE are rejoicing in this wonderful news. We will see the ENT this week and will come up with the plan for his tonsilectomy and adenoidectomy.
WE go for IVIG treatment number 3 tomorrow at Heywood. Please pray that all goes well. When we talked to his immunologist he gave me a number to be able to call in case anything is weird tomorrow since it is the weekend. And he also asked me to call him on monday to let him know how things went. It is so nice to have doctors like that.
We had a blast painting today with the kids over with Alex. I forgot to bring my camera though. :-( By the end of painting all the kids were stripped down to their undies and they all needed a tub.:-) Sam actually rolled in it! All in the name of fun:-)

Heywood Hospital

Sam wanted to monitor his Ninja Turtle

Last night Sam and I spent the night in the hospital so that they could monitor his breathing, oxygen and heart rate. The monitor was going off frequently throughout the night stating that there was low heart rate, or low respiratory rate or none, and his oxygen level.
What the preliminary results showed was that during the 6.5hrs that they were monitoring him asleep that his oxygen level dropped 29 times! I am not completely sure what the ramifications of this are. I know that our primary was going to call Children's and discuss these results with them. I know that there will now be more testing and more appointments but I am not completely sure of what exactly all of that will be.
WE go to Children's tomorrow and at that point will hopefully be devising a plan to follow regarding the tonsils/adenoids, as well as now this respiratory stuff. So again please keep him in your prayers

Heywood IVIG Take 2

Well we had our second round of IVIG at Heywood yesterday. The IV start was easy thankfully. One attempt. The actual drawing of blood proved to be difficult and led to me getting very irritated with the lab tech. I ended up apologzing and she kept saying that it was ok, but I was furious. They ended up poking himm 3 times for the blood and there was no need for it.
But it went well. He did his typical IVIG routine, as far as eating more than normal and getting irritable. His vitals stayed relatively perfect while we were there for the most part. But the last temp of the day was up an entire degree from the baseline temp, and then when we got home a little higher (even with Tylenol) and then today he spiked to 101.7. I placed a call to our PCP and she wanted me to just keep an eye on him, but also wanted me to let dr Baxi know.
The initial phone call that I had with the triage nurse led to them paging him and within about 15minutes I was calling them back. He started to have some respiratory symptoms while we were sitting at the dinner table and hten was crying and pointing to his throat saying that he had a tooth ache. He was then clearing his throat and making some weird faces. When I called the nurse back she paged the MD right away and he called me within five minutes. After having a lengthy conversation we are not sure what happened with Sam regarding this, whether he is coming down with a virus, whether something he ate affected his throat, whether he has like the beginning of strep throat or something, or wheter it was a reaction. So for now we will just watch him, and I am supposed to let him know how he is in the morning.
During this conversation he also talked about (AGAIN) the possibility of Sam having his tonsils out. So I have to make that appointment tomorrow to see an ENT specialist. One more thing.....

Feeling Nostalgic...

You know these last two weeks have been such an emotional roller coaster for me. I have been so anxious about Sam, and what the future will hold for him. I know that I should not be anxious as God is in total control and His plan is way better than mine, but nonetheless seeing Sam have such low energy and being so ghostly pale has been a constant reminder that there is something very wrong with my boy. And so all this thinking has gotten me to start looking at some of his old pics, so I decided to share some of my all time favs with you... Sam you are an amazing miracle and bring such joy to my life. I thank God for you each and every day. I learn patience, and deeper love, self-sacrifice, and selflessness. You teach me how to love deeply and completely. My precious first born son, I love you from the depths of my sole. May you always know that (we love you!!!)

Your first trip to the CAT/CR and the IVIG that has changed your life


Out like a light at Childrens.



Learning to walk


Excited that you are going to be a big brother


Swimming and making all kinds of silly faces


I think you wore more cake than you ate at your 1st birthday party


Davis Farmland with your friend Catherine


4th of July with Dasanee Shari


Sleeping peacefully, on one of many hospitalizations


Beautiful smiles that melt my heart


First trip down the slide


Cool dude sunglasses just like Daddy


Sweet Cheeks:-)


Your first Christmas, after being discharged on the day before Christmas Eve


First trip to get Apples and Pumpkins (now a yearly tradition)


Little tiny miracle baby shortly after birth


My ABSOLUTE favorite NICU picture, so awake and alert

GI bleed:-(

Sam's back in the hospital as I write this:-( Yesterday he had a large diarrhea stool at church, then came home and Grandma and Papa were watching him when he had a large stool in his pull-up which was red and kind of like jello. I called Children's and they had us come to the local ER to make sure he was stable. I came and waited FOREVER in the ER, and when they finally saw us they found that his blood count had dropped about six points:-( So here we are waiting to see what his blood work will show this AM, and to see if we will transfer to Children's as inpatient or if we will be discharged and then go down outpt. While we were waiting in the ER he spiked a temp to 101.9, and this is 3 days post IVIG. Please continue to pray for him, that God will heal him and give the doctors wisdom

CRAZY!!!

Well today Matt had a job interview and left around 8:15 or so this morning. Shortly after he left I heard from the doctor and she wanted me to go up to the hospital to have some blood work drawn. So I am totally stressing about that, since my double stroller is completely drenched from having to change the tire and hasn't had enough time in the sun to dry out. How am I going to bring them both to the hospital by myself without a stroller. Well Matt's Uncle Danny called and asked me to bring Sammy over to see the excavator again, and when he heard I had to go up to the hospital he offered to watch him. What a blessing. So I drop Sam off and go up to the hospital with Sophia, while there and waiting for the blood work and stuff, Matt calls to let me know that his car broke down!!!!! Aaaagghhhh!!! Feels like the mess of this week is never going to end.
Thankfully Ron was in Worcestor and picked Matt up so I didn't have to go get him. But the car is completely done. No possible way to fix it, so now we have to go get another vehicle. I ended up meeting my doctor up at the hospital and so we are working on figuring out this whole problem, so hopefully I will at least start feeling better and then the rest of the craziness will get better too.

Bad Day

Ever had a day when you get out of bed and just wish you could just lay back down and pull the covers over your head? THat was my day today. I got out of bed with a pounding headache and just did not want to go to work. I then was getting ready for work and Sam had an explosion of diarrhea (AGAIN!!!) So MAtt and I quick cleaned him up and I headed out to work. I called the doctor about the migraine as I was told to if it continued to get worse. I thought she would tell me what I can take and that would resolve it. Because I am nursing and because of all the liver problems in the past with pregnancy: Nope, I had to go in.
But prior to my appointment I went to JCPenney with the baby that I am taking care of for private duty and her mom. Matt had dropped off Sophia to me, and so we went to the mall. The two babies, and two mommies. On the way there I got a flat tire. Did I mention torential downpours and my already terrible tires?!?!? So here I was with a pounding headache a crying baby and a flat tire. I knew Matt's aunt and uncle were in Leominster so I called them. Uncle DAnny to the rescue!!! He came and fixed my tire so then I drove over to get all new tires on the car.
Then drove to the doctors appt and she didn't know what to do. She is going to talk to another doctor and get back to me tomorrow. I am thoroughly frustrated with this whole situation. I can't get pregnant again right now (well I probably could seeing how birth control hasn't worked twice:-) but don't want to now). So I am so limited in what to do and because of the HELLP syndrome and nursing I am even more limited. Oh well hopefully tomorrow we will figure something out.
Meanwhile these are some pictures from Sam's adventures with Uncle Danny, Auntie TeeTee and NeeNee. He has a blast with them and they do all kinds of fun stuff together. They are also getting ready to replace a septic system, so they have the equipment in their yard. Can you guess what Sammy wanted to do? Yup play on the equipment. He had a blast, there and everywhere else they took him

Thankful to Boston Children's Hospital

Have I said recently how blessed we are to have Children;s Hospital? Today was Sam's transfusion. Everyone greats us and treats us like family. They had balloons and a gift for Sam since it was just his birthday. I said how I had some concerns with Sam and they called the immunologist while I was there so that he knew what was going on and I didn't have to go through the answering service. They gave us a private room (instead of a room with multiple cubicles for several patients) so I could feed Sophia. They are just fantastic there.
Sam did wonderfully. He didn't even flinch when they started the IV. He just played with the toys and watched the Cars movie for the first time while they were getting his IV started. When they were all done he said "thank you"
Mom came with me and my best friend Chantal met us there. THanks to them I am still sane. And then it was downpouring on the way home and we were hydroplaning because the tires were bad. We prayed and God kept us safe. It was quite the ride home as I had a pounding headache, it was pouring, and Sophia was screaming her little head off. So our next purchase will have to be for some new tires.

Miracle baby survives surgery

I feel like I am failing this baby already. After being admitted, the Dr did an ultrasound of my liver and gallbladder, and has now decided that that is why I am so sick. The surgeon has said that the baby is malnourished and starving as I am so malnourished from all the vomiting. I didn't know, I thought that this was all morning sickness. They said that I need to have my gallbladder out, so at 17weeks and 3 days that is what I did.
And of course our little miracle baby survived, although we were warned that there was a real possibility that I would go into labor with the anesthesia meds, but thankfully I didn't. This poor baby has been through so much already.
I actually know that I felt the baby move after the surgery, it was like it was telling me "yeah mom I am here and I am still okay." With all of the surgery and stuff I have now found out that we are expecting a BOY!!! WE are so thrilled, we would have been just as thrilled with a girl as well.