December 17th: Appointment Down

Janessa had her ICARE appointment yesterday. It went very well! Janessa weighed 13lbs 14oz which is more than 2lbs from last months appointment which is very impressive! They were concerned that she wasn't gaining any weight from the TPN, which that is what it seemed like, she was 11lbs 5oz for three months straight! At November's appointment we got the okay to start feeding her rice, fruits, & veggies. It seems very coincidental that as soon as we started feeding Janessa a variety of food more often she started putting on the pounds! So they decided to increase her feeds and they would work with her lab work with me. So she eats her baby rice, and food three times a day, apple juice, and formula twice a day! So hopefully we will continue to put on the pounds!

Even though Janessa's bilirubin is down, her liver enzymes are still high, but I was ensured they are coming down, slowly but for sure, so our hope is to possibly get her off the liver list when she gets a bit older! As she ages she will have less TPN time and more feeding times which is great for her liver! We found the main problem to this problem awhile back with her lipids, and they put her on omegaven which has HELPED a lot!

Everybody is really impressed with Janessa. Her OT is amazed that she can feed herself, and her doctors are amazed she is doing so well despite this horrible prognosis of her condition(which I didn't believe from the start)!

Hopefully next month we will see more improvements and maybe finally cut her TPN down to 20 hours! But we shall see! Up next now is Christmas, which we are very happy Janessa is well(knock on wood), and we can enjoy it with our families!

Thanks for reading
 Marybeth

December 13th 2010: A Snowy Snowy Day

We have been having crazy amounts of snow lately, it's been ridiculous, luckily Janessa is doing so well, and there has been no needed trips to Pittsburgh! She does have an appointment this Thursday, which we are anticipating will go well!

We haven't had many problems with Janessa except for frequent ostomy leaks. Her ostomy seems to leak every single day, and it's really irritating her skin! We have tried everything, so hopefully at children's thanks to a TPN friend of mine we will be able to talk to a stoma nurse about what we can do about her ostomy problems. Janessa's potassium keeps running on the low side as well. Even though they don't seemed concerned about it because it isn't at dangerous levels it's concerning to me a bit! Hopefully they won't let this go again until it's too late and she's in children's for an electrolyte imbalance.

I guess there isn't much else to say, she has been having weekly OT and PT meetings, and has doing very well with them. It's still just a mystery why Janessa hates standing on her feet, hopefully this problem will elevate itself soon! Thank you all for reading!

Marybeth

December 2nd 2010: Slow, But Well

Well. Everything has been really quiet lately, and I must say I am very happy about that. Janessa yesterday had her first session with her occupational therapist to make sure her eating was up to par(This is for when she gets her transplant she'll know how to eat). The OT was very impressed with her oral skills. She was pretty surprised because most kids who don't eat lose the ability to do so, and don't want to. We keep Janessa on a great feeding schedule.

At 10 AM Janessa gets a formula bottle
At 2  PM Janessa gets rice cereal, she loves apple flavored
At 6  PM Janessa gets a fruit or veggies
At 10 PM Janessa gets another bottle.

She does really well with this, of course she gets really small amounts because she can't absorb, but she does love to eat, and we are so happy about this =]. We have a physical therapist coming in tomorrow to evaluate Janessa. She doesn't seem to want to stand on her feet or even attempt to sit up on her own, a common thing most 7 month old babies are doing. So hopefully we can get Janessa working on those things! We have been putting her in her bouncer as well, she seems to like that, and will bounce a little in it.


Other than that, things have been slow, and Janessa has been doing great. Happy & Healthy as can be!

November 16th 2010: It's been awhile

Not a lot has been going on with Janessa. She has been doing extremely well with everything! We haven't been to children's since September(Knock on wood) and we haven't had any line troubles! We had a doctor appointment on Thursday, it was her intestinal care appointment. She goes to these appointments monthly, and luckily this time I got to speak with the doctor I prefer to speak with!

We discussed a number of things there. We finally got an increase in her antibiotic(It's a big thing with her so she doesn't get infections). We also are allowed now to feed Janessa fruits & veggies to keep up with different flavors and textures(Yay to that)!!!! But the big thing they are concerned with is that Janessa is NOT gaining any weight, but then again she isn't losing any either. Janessa has been stuck at 11 pounds some odd ounces for the last three months! Which isn't ideal. Janessa we know doesn't move anything from her stomach into her intestine, so when we drain her we see what she eats come back out. So increasing her feeds would be no good. Janessa is also on a high concentration of sugar, so right now she is actually maxed out at 22% sugar(The average is 5 - 12.5%). They can't increase her fats either because she is on a protocol.  It seems really weird that she isn't gaining weight, they think all her sugar is just not giving her calories and comes straight out her urine.

There is a few things they are considering. They are considering trying a motility medicine to help move stuff through, they don't know if it's going to work or not, and the other dreaded option is putting her TPN back up to 24 hours a day =(. So hopefully she'll start putting on the pounds!!

Other than that Janessa has been wonderful. She got her pictures taken yesterday and they are beautiful. She also got a new bouncer to play with, and is doing well with it, we got the line to work with it as well(The best we can anyways). We are hoping to stay happy and healthy with Janessa. Thank you all who read her blog!

Marybeth.

October 25th: Happy As Pie

Janessa has had an amazing week. Her line site looks great, she is free of fevers, urine looks wonderful, she is just doing so good! We had a new nurse today come in and do the lab draws, she did a pretty good job, and Janessa really enjoyed her. The nurse was so impressed with Janessa's progress and was complimenting on how good she is doing!

So we finally got occupational therapy set up! Janessa will be focusing on eating so when she gets her transplant she will be able to! She loves to eat anyways, but they just want to make sure she will continue to do so since she only gets a small amount of formula. Janessa has been having a little bit of physical strength troubles lately. She is very tiny only 12 pounds, and doesn't have the muscles to pull herself up yet in a sit up position. We are going to have some physical therapists come in and work with her on that so she reaches her milestones promptly or at least attempt to.

Not much else has been going on. I still haven't recieved the MRI results yet, they just don't want to call me back =/ ! I also have a concern with her antibiotic and why they haven't increased it yet. I have a bunch of calls to make on that one! Lets hope someone calls me back.

Other than that, I'm going to enjoy my healthy and happy Janessa just how she is!

October 21st:: Anger & Scrap Books

So Janessa two days ago had a HORRIBLE day. She screamed, she cried, she went crazy all day all night and for the life of me I could not figure out why. Nothing consoled her at all, she was just miserable. I couldn't imagine what it was, she had nothing in her tummy because I drained it, her line site looked good, and there wasn't a hint of a fever(as usual). She was just not having a good day.
At 7 the next morning she started screaming again, and I though "Oh no what am I going to do all day with her screaming like this?" luckily Caleb took her for a car ride and she slept until about 11 and was amazingly fine the rest of the day, and she is doing great today as well. It was such a mystery on why she was crying so much that night. It's hard to help a special need baby who doesn't eat or even urinate for that matter. Sometimes she just might be miserable, and now I need to realize that.

So on a more positive note, I printed a bunch of Janessa pictures from birth and up yesterday. They are beautiful, so now I plan on making my scrap book, but I need supplies! Pink paper, little odds and ends, glue gun, etc to make it look amazing! I have the book itself I just need the supplies. So hopefully today or tomorrow I'll get some, and can start it with the whole pregnancy theme, and so forth.

Lets all hope Janessa remains well and has no more all day crying fits.<3
Marybeth

October 17th: New Discoveries

So Janessa Janee's line looks pretty good. There doesn't seem to be any sign of infection anymore, since she doesn't have a fever what so ever! Her loop once again started to come out today. There are two grip locks on and stat lock and it still manages to come out! When this happens I put the tubing across her tummy, it makes it more secure until the next week when I can do a dressing change and correct the loop. This is going to be rough especially when she starts crawling around, and it'll only be a matter of time, since Janessa is almost six months old!! Seems like yesterday I first found out I was pregnant with her, time sure does fly. It makes me sad to see my daughter starting to grow up and get big, but its also a joy knowing that she is a fighter and will continue to fight this battle of MMIHS which she is doing so well with! She is napping right now, so it's a perfect time to blog about her, good thing I did all the cleaning this morning!!

Anyways, as yins know winter is coming up, and with winter here in Pennsylvania it means extreme cold and miserable days. Well I have a problem keeping her warm with a central line, and keeping it protected from her pulling it. So I know another mom has bought these for her TPN baby, and I so want to get them for Janessa to keep her warm in the winter!!

So here is a link to them  The Little Leg Warmers!! They would be so cute with her, and I could put a hoodie on and a onesie without any line troubles!!!
Also 77kids has a infant section for infants 0 - 18 months and the clothes are so adorable, they are made by American Eagle. I think I found my clothing wear to tell santa for Christmas!!
American Eagle Baby Hoodies <--- They have such adorable clothes!!

I am honestly happy to say despite Janessa's condition and abnormalities in her life at least she is staying healthy and we are not always hospital bound!!
Well I'll keep this updated if anything new happens, hopefully we'll get our MRI results, I think I'm going to call tomorrow and find out how they went.

xoxo Marybeth.

481c274c-1f96-4d56-84d8-44bff09f5628

1.03.01

October 14th 2010: Unsure of this

Janessa had an ICARE appointment(Intestinal care). It went extremely well today. Dr. Squires came in and I haven't talked to him since Janessa was only a few days old. He seems to be happy with Janessa's progress, but still Janessa is not gaining much weight, she is just so tiny. They kept her feeds and TPN time the same so hopefully eventually we'll get her down more!! Her omegaven increased and everyone was just so happy with how she looked today, it was amazing. So we are good in that department until next month, now I'm just waiting for the MRI results to come back.

Janessa's line has been looking a little funny to me. It has been draining for the last few weeks now, but for two weeks it always drains a bit(a yellow brown color), but it's continuing to do so today, and its a bit pink around the site, it looks irritated rather than infected, but I'm not sure. So we called the GI doctor on call to see what they thought(if we should bring her in or not). They said it would be fine until they talk to the team tomorrow because she has NO FEVER, and isn't any fussier than usual. I just don't know what to think. She is on antibiotics for UTI's but I don't know if the antibiotic would contribute to any of this, at least it should help a little unless if she does have a line infection it's resistant to it(but then she would have a fever for sure). I guess we'll just see tomorrow and keep a watch on her temperature.(We do it rectally when she may have something wrong like an UTI or possible line infection which she has had neither in 6 months). I guess I'll wait until tomorrow unless she spikes a temp(it's at 97.9 now).

I'll keep this updated.
Marybeth.

481c274c-1f96-4d56-84d8-44bff09f5628

1.03.01

October 12th 2010: MRI

Well Janessa's line won't keep a loop in it. There is something up with this new line!! I have two griplocks on and a stat lock and the loop still wants to move, its just all a pain trying to keep a baby from pulling their central line out.

Anyways, Janessa had an MRI last Friday. Urology set it up to see if that is why her bladder won't contract. They are worried she may have a tethered cord which may affect her walking on day. Luckily for us they can treat it with surgery and her walking ability will be fine!! Phwwww!! Janessa looked horrible after the event. They put her under general anesthesia for the procedure and was she groggy afterward, and tired. She does pretty well with the anesthesia which is always a good thing!!

So Thursday Janessa has an ICARE appointment. I have a series of questions to ask them. Concerning transplant, her g tube output, and TPN related questions. But anyways hopefully all is well. Janessa is doing great, and we are happy in our nice new home!!

October 5th 2010: So recently at five months old.

Janessa has been doing pretty well! We went all the way through August, and September without any admissions to Children's! Her line sight looked great, she stayed infection free, and grew like she normally should.
During the two months though Janessa had five line breaks, all were fixed until the fifth one, it was the last of her line left and they had to replace it. So Janessa was put as an add on and got her new line. Now the line is in place and functioning fine. We are having problems with the loops though, they don't seem to want to stay in, and with a moving baby it's the hardest thing in the world to keep a line in. One inch of movement and it doesn't work, so you got to keep it secured.

Our recent problem now is that Janessa's tummy keeps filling up with stomach fluid causing her to throw up if we don't drain it out in time. As you know nothing moves in Janessa's stomach, so it causes anything that goes into her stomach to just sit there and not go through the intestine which it should. If it fills up too much then she throws up. We have to drain her stomach for a half hour after every four hours, and even sooner if her stomach is distended and she is irritated. So now we're working on why is this happening all of a sudden and what should we do?

I've noticed that Janessa's bile doesn't relate to the formula feeds, there is a large amount either way with or without formula put in.

Janessa's liver numbers have also went down with the new lipids she is on "Omegaven" and it works wonders! Janessa's bilirubin was at a 15.8 which was very high for only being on TPN for a month and a half(that was from the soy bean lipids they were using). Now her bilirubin as at a 1.29, and her liver is functioning so much better!! We are so happy about this, this saves her poor little liver from any damaged caused by the old lipids she received IV

My plan is to keep this more updated for now on, to be more specific with Janessa details.

xoxoxoxoxoxo Marybeth,

July 28th 2010: 3 Months & 6 Days Old

I never update this, so tonight I decided to. We finally brought Janessa home on June 6th 2010. It was a very happy day for us, to finally be as a family. The adjustments were a bit difficult, but I wouldn't trade them for the world to have my baby home. On June 22nd, Janessa was put on the transplant list for a liver, stomach, pancreas, small intestine, and colon. We were having a lot of problems with the lipids in her TPN. They were causing horrible liver damage, and her coloring was becoming more, and more yellow everyday. Finally they put her on a lipid called omegaven, which is made of fish oil, so her liver has been improving =]. Janessa has been hospitalized a few times through out June, and July for central line problems, mostly from her pulling them out, or being mispositioned internally. We had one central line infection scare, but the cultures came back negative. She is at the hospital tonight, tomorrow she will be home, her electrolytes went out of whack, and her potassium dropped to severe levels. Luckily they got it at a good level, and she will remain on 22 hours of TPN which was adjusted from 24 to 22 hours a few days ago.

Out next step, is keeping Janessa healthy, and waiting for the transplant call, and having a normal healthy baby that can eat<3

I'll try to keep this updated more, with recent events, usually I just post them on facebook, and forget about this.

May 22nd 2010: 1 Month Old

I know I don't update this too much, not a lot has changed with Janessa, but I'll go through what all has happened so far!

During our final few days at children's they attempted to feed Janessa some breast milk to see if she could tolerate it. She wasn't able to, but they wanted to try again at a later date. Janessa was released from the NICU, and put in a regular room. She made a little friend there by the name of Bryan!! I'll post a picture of the two!!

they sure are cuties!

Janessa was released from children's, and Caleb and I are now with her at this place called the children's home! Here we are learning to do her TPN, and the rest of her care. We have everything basically complete right now, and Janessa is doing great!

During our stay here, Janessa has peed more frequently, but we still have to cath her every three hours. Also a few days ago they started the feeds again on Janessa and so far she has been tolerating them, and loves them! We are hoping we can increase the volume of formula, we will see!! Her condition is basically trail and error.

Also to my knowledge next week she has an appointment with the GI doctors, and they are going to start her on omegaven(a different type of lipid which is infuzed into her TPN) it's suppose to save livers from damage.

Right now all we are waiting for is the nurse care to be set up at night(12 hours a night) so Caleb and I can get some sleep!!(The catheter is the problem with Janessa it has to be done every 3, so you wake her up, do it, and spend 2 putting her back to sleep) After the nursing is set up we get to go home!!

:) keep praying for Janessa, and keep following, I'm going to update this more often!!

May 3rd 2010: 11 Days Old

Janessa Janee Peck was born April 22nd 2010 at 12:29PM. Janessa weighed 8 pounds 9 ounces, and was 19 3/4 inches long! Our journey through out this pregnancy has been a rough one, and it continues to be so! Janessa has officially been diagnosed with MMIHS. Luckily for Janessa her lungs and heart are outstanding, and her kidneys only have slight damage, they have amazing numbers with no reflux. Her vitals are really good, and she seems to have no other problems than what the MMIHS caused.

Janessa right now is on TPN 24 hours a day. She has a stoma bag, and we have to catheterize her every three hours since she can't contract her bladder to push pee out! We are going to have a rough road ahead of us, and a lot of hard times in the upcoming future.

Right now Janessa is facing a battle, a difficult one. The nutrition that is going into Janessa(TPN) can cause severe liver disease, and infection can get into the line very easily, so everything we do must be very sterilized.

Some babies don't get affected by the TPN as bad as other babies, many have great livers at four or five years old and have been on TPN since birth, others start showing signs of liver disease at 6 weeks!

We are hoping to be able to trickle feed Janessa some breast milk, it reduces liver disease in babies! But right now her bile is not clear enough, but it is showing signs of improvement!! :) Janessa may need a transplant of her small bowel/stomach. We are hoping she doesn't need one in her liver as well...

All we ask for from everyone is to please keep praying for her, and keep her in your thoughts!! Please pray that she will have a chance at growing up, and will pull through this disease despite what literature states about it.


Janessa should be coming home in about 2 weeks!! :)

April 20th 2010: 37 Weeks Gestation

I know I don't update this often due to the fact I don't have many appointments, and I'm still pregnant. The plan right now at Magee is to induce me at 39 weeks(so that is two weeks away). I noticed I didn't update the information on the pediatric surgeon either so I will start with that.

At about 34 weeks we talked to a pediatric surgeon at Children's hospital in Pittsburgh. Our hope was really brought up at the time, he stated he worked with babies who had this condition(MMIHS) and the prognosis wasn't as poor as literature stated.(A lot of the doctors base this disease off of the literature they read since they never seen it themselves). He stated what would happen during Janessa's first year of life, and how the transplant situation would work! He sounded very hopefully, and Caleb and I started to grow stronger over as what he said really enlightened our spirits, and our hopes.

Yesterday at Magee hospital I thought originally I was just getting a check up, and they were going to plan my inducement date, but it ended up after that I was talking with both a perintologist and neonatologist, and they gave me prognosis statuses of how Janessa most likely would turn out in the end. It really was a big hope killer as the neonatologist stated how she did not think Janessa was going to make it, and she explained different decision options with us.

First if the baby comes out breathing, and what not(she most likely will labor shouldn't affect the baby so much) if we wanted to do to do a comfort care plan or basically do the TPN plan to stabilize her. The comfort care plan was not to hook her up to TPN or anything and watch her day by day. Basically from my understanding of the disease, without TPN the baby will starve, and have chronic diarrhea, and most likely won't make it past two weeks. The other plan will prolong her life while she will be receiving nutrition through TPN, and she will be passing her urine and what not through catheters. How the neonatologists stated that procedure is what upset me, she basically stated the baby would be suffering, and in pain(seems odd if the job of the doctor is to make sure she is in less pain as possible through the procedures, like surgery, you don't get cut without being numb or what not).

Caleb and I made a decision on that this morning, and we are going to try the second method, if Janessa starts to go into a state where her organs are all shut down, and she is put on life support we will let her go freely, but why wouldn't we try if she can get the surgery one day(Hopefully).

I talked to many mother's recently with babies who have had conditions similar to this, or exactly like this. It has been a big help in our support, and what not to keep on fighting through this. We are hoping that Janessa will be a strong girl, and will hopefully be a candidate for a new organ. The mother's also stated that they could have their doctors who have been recently experienced in this talk to our doctors, but I want to wait until Janessa is born to see how this is.

In all honesty, all I can think of doing is leaving this in god's hands. If Janessa is suppose to be here, she will be here, but if not, it is an act of god, and for whatever reason it is his decision to take her to heaven. Please keep praying for her to have a chance with Caleb and I, I feel faith and hope are what will pull her through this!! I thank you all for praying, and thank you all for keeping her in your thoughts, it means the world to me. I'll surly update this as soon as I find out more information. Janessa is kicking right now, probably because I have the beatles on, she is so special to us, and we will always have faith, and hold on to her through the good and the bad.

Thank you all, especially the mothers who told me their stories, and helped me through such a difficult time.

- Marybeth 

March 31st 2010: 34 Weeks And 1 Day Gestation

Recently I moved back to Pennsylvania, since everything is more specialized here, and there is a lot more support. I drive here was long, but in the end hopefully it's worth it. Recently after our trip from Philadelphia we had a few more ultrasounds. One amniotic fluid and bladder fluid was drained, and the doctor mentioned the darker tint in the fluid, which meant she had the ability to pass mecolium. It sounded very positive to us.

Today I went for my first appointment at Magee hospital, it seemed like a repeat of everything that was already said, but a bit more in depth. The neonatologist told us the plan for Janessa after her birth. She mentioned that Janessa's birth will probably be an induced labor a 39 weeks, and then she will be evaluated fully at Magee hospital. Depending on her condition she may be sent straight to Children's hospital of Pittsburgh, or will be with me at Magee until I'm discharged. It all depends on how she is fighting through this. After that will depend on her condition, and what not.

It has been really hard, and stressful these last few weeks. I wish something like this would not have happened, but I have to stay strong so Janessa stays strong. Please keep her in your thoughts and prayers for this is in god's hands now, and, only he can decide her destiny in the long run.

I will update this after my talk with the pediatric surgeons on Friday at Children's. Please keep her in your thoughts and prayers. God bless you all. <3

March 14th 2010: 31 Weeks And 5 Days Gestation

Last Thursday we left for Philadelphia to have specialized tests ran on Janessa to get a better idea of what her condition may be. They had two diseases that Janessa may be experiencing. The MMIHS or Cloaca. Well the tests showed that Janessa most likely has MMIHS, but an official diagnoses won't be made until after Janessa is born. Of course MMIHS is a very rare disease, and in a lot of cases can be fatal to infants, but it was never really mentioned that Janessa wasn't going to make it. The process of MMIHS will be that after Janessa is born she will have to be put on a TPN, and a couple other tubes such as a catheter, and one for any fluid in her GI tract. The good news is that Janessa does have polyhydramnions(which is excessive amniotic fluid surrounding her) That is good because it developed her lungs and heart really well, also there is a less chance of renal damage in her. The reason for her having that, rather than oligohydramions is that her bladder is releasing fluid, but she doesn't have the smooth muscle development to push out her pee(which that muscle may develop as she ages). Another good thing is that in the MRI and ultrasound they noticed she had a bit a fluid running through her small bowel and intestines which is a very positive advantage to her. 


We are leaving on the 25th to move up to Pennsylvania. Janessa will be c sectioned at Magee women's hospital, then immediately transported to Children's hospital of Pittsburgh. Within a year, if Janessa can withstand the TPN, she will be a candidate for multivesticular surgery(Surgery of the intestines, liver, etc). If she is unable to feed they will do it earlier. Hopefully Janessa will one day be off the TPN, and we be a normal little girl. :) 


We have to keep strong, and keep her in our thoughts and prayers. Janessa will be in the hospital for a long time after birth(At least 7 months). She will need all the love and hope she can get!! Thank you all for doing so already, we really appreciate it! <3

March 6th 2010: 30 Weeks 4 Days Gestation

Janessa is kicking as usual right now, it's hard to believe that our baby may even have such a disease as this. Right now we are just doing as much as possible with her in the womb. We are still heading to Philadelphia on the 11th of March to have specialized tests done to see what they think and consider. We got chromosome tests back last Wednesday at our appointment, the Doctor said that there could already be renal damage to her, one of her protein results came back fairly high. I really hope that Janessa is doing okay in there, and not in any pain.

I recently received an email as well from Children's Hospital in Pittsburgh about what they work with, and the evaluation process. Our plan is to most likely have her flighted up to Pittsburgh since it's more specialized than down where we are. We are hoping for the best for baby Janessa! A lot of people on facebook, and family have been keeping her in their thoughts and prayers! We thank you so much for that, and hope you continue to do so for our little girl :). Today I read about a little boy named Samuel who is 9 months old today, and is doing amazing, he has MMIHS as well, and the blog post gave me so much hope and inspiration, I wanted to thank them for that hope that they gave me, and I will always keep hope and prayer with their son as well.

We have another appointment on the 10th with Dr. Evans, I guess we will see how well she is doing. We love our little girl so much! We hope that everyone keeps her in their thoughts and prayers. God bless you all.

Marybeth.