Monday, April 22, 2013

More milestones!

Jack continues to make huge progress each day. Last week, his heart rate was all over the board - 120, 150, 190, 100, 75, very quickly. Saturday we went to visit and were able to get a Family room, where all of the kids and my parents were able to see him at the same time. When we were in the Family room we watched his heart rate stay within a small range, 130-150, the whole time. It was amazing what a difference a day makes. Since then, he hasn't looked back.

Today we found out he 'graduated' from the teaching rounds to the regular rounds. When Jack was born, he was assigned to the teaching rotation, as Evanston is a teaching hospital. So each day, a group of 4-5 medical residents, plus a neonatologist, would assess Jack and discuss a plan for the day. He's now graduated, and is assigned to just a neonatologist and the head nurse. They stopped over today, and looked him over and said he's doing well. He was assessed and approved for circumscision, which comes near the end of their stay.

They changed his feeds from every 3 hours to every 4, and asked us when we want him to eat so that when he comes home he's on a good schedule (now only if they could potty train him while he's there, we'd be all set!).

Each day is more and more progress. He's still taking some of his feeds by nose, but at this point it is because they increased his volume today from 50 CC to 70 CC. Hopefully we're on the short track to coming home!

Saturday, April 20, 2013

Day 8

Jack is still in the ISCU, though he's made great progress this week. We've had a few steps back, which we expected and were prepared for. On Wednesday he finally got to take his first feed by bottle, and I got to feed him a bottle when we got to the hospital. I didn't realize it's so tricky to feed a preemie! Since he started he hasn't really looked back, and his feeds have gone from 5 mL on Wednesday to 40 mL last night. The goal is to get him to 60, and then keep him there while he gains weight. He takes most of it by mouth, and usually needs help with the last 10 mL which goes through his nose. He has to take it all by mouth before he can leave.

He's been gaining weight as well. He was 5 lbs. 15 oz when he was born, and as of Monday he was 5 lbs. 5 oz. Today he is back up to 5 lbs. 8 oz, so we're making progress.

On Thursday with the horrible rains, we weren't able to go down in the morning like we have been as the roads were flooded. I called midday to see how he was, and they had weened him completely from his oxygen flow, and moved him to the 'big bed' - the bassinetts that the other kids were in when they were born. However, since then he's had a bit of trouble keeping his temp up, so we're watching that closely.

Thursday night Will and I went down at dinner time, and we noticed his heart rate was doing weird things. He would dip to 75 and then go right back up, or go to 200 and come right back down. He did this through the night, so yesterday morning the doctors did an EKG to check his heart. They noticed some abnormalities, but the cardiologist from Children's that read it said it is just a normal arrhythmia, nothing to worry about. We continue to watch it closely. Our pediatrician has always been good about watching heart murmurs closely with the other kids so we'll be sure to keep in contact with her about this.

We're taking the kids down to see him today and tomorrow, and they are very excited. Of course we wish he was here, but he's in great hands at Evanston, and hopefully he keeps moving in the right direction. Keep the prayers coming, they are working!

Wednesday, April 17, 2013

Cha-cha-cha-changes!

So many things change so quickly in the life of a preemie. Jack has had an adventure-filled 5 days of life. He struggled to breath the first few days, and ended up on a machine called a SiPAP (similar, if not the same, as a CPAP). This breathed helped to make breathing easier so his lungs didn't collapse. This wasn't working as well as they'd hoped, so the doctors change the machine to actually give him a breath every few seconds, and this is the change he needed to get his lungs moving. By Monday night they took him off extra breath, and yesterday morning Will and I were there when they took him off the SiPAP altogether. They did put him back on oxygen, but it's just the nasal cannula, and they'll be working to wean him from that in the coming days as well.

With the removal of the mask, I finally got to do some Kangaroo time with him. Yesterday morning Will and I both got to snuggle with him for over an hour, and it was glorious. Will had to come home for baseball with Jake, so I went back down to snuggle more with my sweet boy. When I got there the nurse said she heard a little grunt and went over and he was just laying there, wide awake, looking around. So I got to kangaroo with him for a bit. However, his body temp didn't agree with that so much, so we had to wrap him back up and put him back in the warmer when I was done. Hoping today is easier and his body temp doesn't drop.

He also got his first feed yesterday, and did really well! It was through a tube in his nose, but that's ok. He'll get to the bottle. They may try the bottle today, depending on how he did last night.

The biggest change is that I got sent home last night :( I was not happy about it, I was prepared to come home today. But the doctor felt I was ok to go, and it was nice to surprise my babies this morning before they left for school. So today we start our 'new' normal, temporarily, filled with getting kids ready in the morning (though my parents, who have been such a blessing, are still here to help get them out the door in the morning), and then heading to the hospital to spend time with the little man for a while. I can't wait to see his beautiful eyes and snuggle with him. I'll post pictures later, I'm too tired right now to try transfer them from my phone to my computer :)

Monday, April 15, 2013

Jack, Day 4

Today started slightly better, though as of our last visit, was no better but no worse, than yesterday. When Will and I went to visit Jack this morning, his eyes were open and he was very calm, just looking around. His blood gasses through the night showed the need to change his SiPAP slightly, in essence 'giving' him a breath every so often while the oxygen was pumped into his lungs. In doing so, his oxygen levels were able to be lowered, and he calmed a bit.

 We spent quite a bit of time with him, as he looked around in wonder. It was amazing. However, when we visited later in the day, he was very agitated again, and his eyes were closed. I'm glad we were there when he was calm and alert. He slept fitfully today it seems, though during our last visit before dinner, he was calmer again, and his breathes were less rushed and less dramatic.

We're headed back up there within the hour; I'm hoping they will let me 'kangaroo' with him again tonight. I was able to do so last night for an hour and when I was holding him he was very calm, snuggled in, his heart rate was down, and his pulse ox was better. There are 3 numbers they look at on a constant basis - heart rate, pulse oxygen, and heart rate.  His heart rate settles and remains at a nice level when we are touching his skin or talking to him. His pulse ox, which is something we've monitored with Jake when he has his cough or pneumonia, needs to be above 85%. When we are touching his skin, or last night when he was with me, he remains about 98%, sometimes down to 95%, but always at a good level (When Jake is sick, the doctors become alarmed when he is below 93%, and we have our own pulse ox meter to keep an eye on it).

The heart rate, they want lower. I haven't figured out the 'magic' number yet, but I know that when I had him last night it was in the 90's and 80's, which is less than what he is when he is agitated - in the 130's sometimes. This means his body is working really hard, and that's not good.

Hopefully when we get up there tonight they will give us the OK to kangaroo. It will depend on how he's done in the past few hours. The nurses during the day kept telling is it depends on how he is later, but based on how he did earlier today the answer would be no. The doctor this morning wanted him to turn a corner today breathing-wise. At this point we're on a wait and see basis, but the timeline is ~72 hours after birth he should be able to regulate his breathing.

He is regulating his temp at this point, which is good. If he can keep that up, and get this breathing under control, then we have one challenge left - eating. For now, please continue to pray that he gets the breathing figured out, and we can get off of the SiPAP ASAP.

Sunday, April 14, 2013

Jackson William is here!

Jackson William Martino made his debut on Friday the 12th at 10:44 a.m.  Getting him here was quite the feat, which ended up being a bit more involved, and more of a miracle, than what we even were expecting. Will and I arrived at the hospital and proceeded with everything we were told to anticipate. The Interventional Radiologist was my least favorite part, though he was one of the most important. He didn't put me under any sedation, besides a local anesthetic, so putting in the balloons was extremely painful for me, and I was thankful when it was done. I don't remember much of the day after that. Jackson was born at 10:44, and Daddy, Grandma, and Papa got a quick peek at him before they brought him up to the ISCU (Infant Special Care Unit). He was 5 lbs. 15 oz, and 18.5 inches long. Will got to see him and spend some time with him on Friday through the day.

Throughout the process, we've asked for prayers that we made it through safely and that there were no major complications, including bleeding, and that my placenta didn't go through to my uterus (percretta). When the doctors went in, they saw that my placenta was indeed through my uterus, though thankfully hadn't reached my bladder. However, it was at the most serious of the 3 levels of accrete.  Yet thankfully there was no bleeding. In addition, the doctor said that my uterus was so bad - it looked so bad, and was in such bad shape - that he was shocked it hadn't just ruptured at some point during my pregnancy, just exploded. I read about this with one other case, and I am so thankful that this didn't happen, since this, as I'm sure you can imagine, would have been fatal very quickly. We are also very thankful that I only needed one unit of blood after the surgery - the balloons worked, and even that unit was a prophalactic one, just in case. It wasn't critical, but was given to be helpful.

Friday for me was a blur, but Saturday I was in much better condition. Jack, not so much. He's still struggling to breath. They say this is to be expected, though for as big as he is, they didn't expect it to be as rough on him as it has been. He is struggling to breath, is on a CPAP, and is under close watch. I finally got to hold him for the first time this morning, and tonight we'll go back up so I can do Kangaroo care with him - this is skin to skin contact. When I held him this morning it seemed to calm him down tremendously, and he tried to open his eyes a bunch of times, unlike other times Will has been up there.




The kids got to come see him yesterday. Mia was terrified. She's her mommy's daughter, such a worrier and always very concerned. The boys were fascinated.  They are having fun with Grandma and papa at our house, and we are so thankful for their help. We are also so grateful for everyone's prayers. Without you, we wouldn't have made it this far. I feel fairly good today, walking much better, and most of my 'attachments' have been removed so I can move around more quickly. Please continue to pray for Jack, that his breathing recovers on his own without being intubated, and that we can move to the next level of recovery - eating. He is maintaining his temp fairly well on his own, which is a blessing in itself. Keep the prayers coming!

Monday, April 8, 2013

34 weeks

It's hard to believe we made it to 34 weeks, and even harder to believe the baby will be here in less than 4 days. We had our last ultrasound on Friday, and it was the best one I think we've ever had. It's amazing what you can see in ultrasound; I was able to see him stick his tongue out, make faces, and even open his eyes! It was incredible. Below are some pictures from the ultrasound.

Even harder to believe was that Chunky Monkey baby gained 2 lbs in 2 weeks. He was weighing in at 5 lbs 14 oz. So theoretically, by the time he comes, this premature little guy will be almost 7 lbs - less than a pound less than what his brothers and sister weighed. We won't know until he gets here, but hopefully this will help to put him in the best possible situation to fight and get out of the NICU.

We met with the last specialist last week, gynecological oncologist. Though this is not cancer, not even close, the oncologist are the most highly experienced surgeons within the hospital, having dealt with the most complex cases possible. The doctor we met with was extremely reassuring, and gave us a lot of really good information. He also shared that they had done an emergency case just that morning, with a woman whose water broke and she was bleeding and it was an emergency. Thankfully, we are not in that scenario, and hopefully will not be.

So barring any unforeseen circumstances, we will arrive at the hospital Friday morning. My surgery is scheduled to start at 9, and hopefully won't last more than a few hours. Mr. Jack should be in the NICU and evaluated by early afternoon, and hopefully WIll gets to get a quick peek right after he is born. We'll share pictures as soon as we are able to. Based on my poor response to anesthesia, I am certain I won't be up for visitors on Friday. Saturday is a possibility, but it depends on my pain level and how Friday went. Remember that no one can see the baby without Will or I, and no one can see him without a whooping cough shot. I'm hoping I get to see him on Saturday. Please pray that all goes well, and that Jack comes out and gets it all figured out quickly. If he doesn't, we're prepared for that too, but he's done everything his own way, so we're hoping that trend continues.

Sunday, March 24, 2013

19 days and counting

It's so hard to believe that in 19 days we will be a family of 6! We had another doctor appointment on Friday, including a growth scan, non-stress test, and then a regular appointment. We've been doing weekly non-stress tests due to having some heart rate surprises during our appointment 3 weeks ago, when he dipped during a regular check. Since then he's been fine, but just in case we go in each Friday for an NST, fluid check, and appointment.

During Friday's growth scan we were shocked that he weighed in at 3 lbs 15 oz - a good surprise. At this rate, we expect him to be over 4.5 lbs when he arrives. The bigger, and the fiestier, the better! I also got my pertussis shot. Which leads me to the most important update - if you are not current on your pertussis shot (whooping cough), you will not be able to see the baby. Not at the hospital, and unfortunately not at our home. The risk to a baby is so high, and it's compounded immensely for a premature newborn with a family history of asthma. Unfortunately we cannot take this risk. If you have any sign of a cold at all, even just a stuffy head we ask that you wait to come see him until you have been symptom free for several days. Again, it's just not a chance we can afford to take.

We've gotten more info on how things will go during the delivery, and my surgery, what to expect for duration (4-6 hours, if not more), etc. I will probably be in the hospital for a week, though if all goes really well (please pray for this!), I could be home in 4-5 days. Jack will stay until he is able to eat, breath, and maintain his temperature on his own. We expect this to happen within 2 weeks after he is born, assuming he is cooperative. Cooperation hasn't exactly been his thing thus far :)

We will keep the blog updated as much as we can with updates, pictures, etc.. We appreciate everyone's assistance, offers for assistance, and prayers. There are still so many unknowns, which is scary, and incredibly hard for me as a planner. I think I've planned everything I can, and have prepared everything I can with one small exception; letters to the kids. I have to do this yet before the baby comes. Please pray for them, and for me, that the stress and fear of the unknown in the next 2.5 weeks doesn't become so overwhelming.

The kids are completely unaware of the complications for me. They are aware that Jack will be in the hospital for a few weeks, and that he'll be very tiny. As we get closer we may share some limited information with the boys, based on what they can understand. We may also not have them come visit until Sunday, until I am in better condition and not so 'scary'. Please don't mention any of the risks, or once you know how I am, any of the scary parts to them.

We have another appointment this Friday, for an NST and ultrasound and doctor visit. Then we meet with the gynecological oncologist, who will do the hysterectomy, on the 2nd, and one last appointment with our MFM doctor on Friday the 5th. I can't believe we're this close!

Friday, March 8, 2013

One turns into 3

Today we had another checkup for baby J. We were supposed to have 2 important appointments Tuesday, but thanks to Mother Nature, we had to reschedule. So today we ended up with a prenatal appointment and an appointment with interventional radiology. During our prenatal appointment, the baby's heartrate was lower than the doctors would have liked at one point, which resulted in a trip for an NST (non-stress test). They sent us down to meet with Interventional radiology, and then back upstairs we went.

The meeting with IR was informational. We learned that the day of the delivery, we'll first go to IR. They will put me into a twilight sedation, and insert two balloons into my groin blood vessels, so they can cut off blood flow to the uterus after the baby is delivered but before the hysterectomy. Then they will send me upstairs to surgery for the delivery. I will then be fully sedated, baby J will be delivered, and they will continue on with their business.

The NST went well. We got to have another ultrasound prior, to measure fluid. We'll now have weekly ultrasounds and NST. Mia was with us, as she wasn't feeling so hot today, and she got to see the baby. He was moving around again, and we got some great pictures and more video of him moving his arms and yawning and stretching. She thought it was pretty neat. The NST wasn't overly exciting, it went well and that's all we can ask for at this point. However, our one hour appointment turned into a three hour appointment, and the one appointment we were supposed to have today turned into 3 appointments.

Next Monday I have another appointment with yet another surgeon. Friday is our NST, which will be interesting as I will have all 3 kids with me since they all have dentist right before that. and from here on out it's weekly appointments.

Please pray that the other kids recover from everything (we had the stomach flu last week, to the point Joe was in the ER to get fluids. All finally recovered by Thursday of last week, and now Mia's got some other bug that is giving her a fever and a sore throat). We need everyone healthy so we can get ready for this baby to come in five short weeks!

Friday, February 22, 2013

27 weeks 5 days - 6 weeks til Baby Day!

Today was a big day for doctor appointments - the whole week was. Jake had 2 appointments Monday for this cough that just won't leave him alone, I had an appointment Monday with the urologist who will help with my surgery, and with the endocrinologist yesterday and we had 3 appointments today at Evanston. The urologist (who looks a lot like Aaron Rodgers; it's a shame I will only have to see him once more and it'll be while I'm asleep :)) was very reassuring. He has done this procedure 8-10 times in the past year, and has done this at both Evanston and Northwestern - our top 2 choices. He noted that both handle the procedures the same way, which I was happy to hear.

Today we met with our doctor, had an ultrasound, toured the ISCU (Infant Special Care Unit), and met one of the neonatologists. Our doctor noted that all looks to be on track. We discussed the pain I continue to have on my right side, and the new Braxton Hicks that are now accompanying it. We're watching it at this point, but unless there is bleeding, we just wait and see.

The Ultrasound was really great today - we got to see him stretching, and got a great picture of his face. He looks like a 'real baby' now, and not so much like a 'monkey' like Mia thought at our December appointment. He was 2 lbs. 9 oz. today, so he's gained almost one lb. since our last appointment.

The neonatologist gave us a lot of information, mostly reassuring. The baby will be delivered at 34 weeks 5 days, assuming he follows the rules - something he hasn't done to this point. Assuming he does follow the rules, he will be just over 4 lbs. when he is delivered. Babies that are born at this age, called late preterm babies, are considered 'feeders and growers'. The first thing they will want him to master is breathing. At this age, he should only need a nasal canula, or possibly a mask to breathe. Once he has that down, we'll work on eating. If he needs it, he'll have a tube down his nose to his belly to help him eat, but he'll be offered a bottle at every feeding. Once he masters the eating and breathing, at the same time, we'll see if he can maintain his temperature. When he accomplishes all of these things, he can come home. Now for the good news - usually babies master all of these things in tandem between 35-36 weeks. So hopefully, he's only in the ISCU for a week or two! It will all depend on him, and his motivation. He's pretty feisty right now, so we're hoping that's an indication of things to come. Of course, if he comes earlier, none of this is relevant.

We got the downlow on the different floors of the hospital, the rules of visiting the ISCU, and what to expect while we are there. Overall, another good appointment. We go back on the 5th to meet with the interventional radiologist and the gynecological oncologist, who will handle the surgery.

video
I'll leave you with the video they gave us - Baby Jack stretching.

Monday, February 11, 2013

Placenta Accreta - we made it to 25 weeks!

We had another doctor appointment on Friday. This was the first appointment in Evanston, as all others have been in Gurnee, so this was a whole new experience for me. I was impressed by the team - they have assigned me a nurse who will see me each visit, and they are arranging for me to see a specialist, or more than 1, per visit when I am there. At this point it appears we only have 5 more doctor appointments before baby comes. The perinatologist was there, and I was able to ask her some questions in terms of what we should prepare for with baby J coming at ~35 weeks. She said that it will really depend on him, but that 35 weekers have a lot less issues than babies that come earlier than that. The biggest concern we will need to be prepared for is breathing - he will most likely be on a nasal cannula (air) or a face mask; there should be no need for a breathing tube. Once he has that mastered, we'll focus on his eating and his ability to maintain his body temp. If we are lucky he won't be in the ISCU long, maybe just a few weeks. However, we're preparing for him to be there up to 6 weeks.

As you may know, the issue that is causing all of this trouble is Placenta Accreta (http://americanpregnancy.org/pregnancycomplications/placentaaccreta.html). Because of the risks associated with the PA, we are seeing a specialist through Evanston Hospital. We are blessed to have 2 of the top 15 hospitals in the country within an hour and a half from us. The #5 in the country, Northwestern, is in downtown Chicago. They deliver over 1000 babies per month, and only see one case of this per month. Evanston is #15 I believe, and they deliver 3-4 of these cases per year. Because of the high risk of complications, we are making a lot of plans, as far in advance as we can.

We were very blessed to have this discovered at our 20 week ultrasound - the risks of life-threatening complications are significantly higher if not discovered until later, or not discovered at all. Right now, the following precautions are being taken:
- The urologist, gynecological oncologist, and interventional radiologist will all be in the room, as well as blood from the blood bank. There is high risk that there will be some damage to the bladder, so the urologist will be there to assist. Because of the complexity associated with the hysterectomy during pregnancy, the GO will handle the surgery once the baby is delivered. The IR will handle placement of different medical devices to help reduce bleeding prior to it starting. However, I've been advised that I could lose up to half of my blood.
- Baby J will be delivered at 34 weeks, so there is no risk of my body going into labor. If my body were to go into labor, the risk for hemorraghing is very high, and thus a huge risk we aren't going to take.
- The Perinatologists will be in an adjoining delivery room, to immediately take him and work on him if he is sleepy. He'll then camp out in the ISCU (NICU) for the next sevearl weeks.
- We see the doctor every 2 weeks right now, and then weekly come approximately 30 or 32 weeks.

In continuing to feel blessed, we've had an amazing offer to organize a blood drive on our behalf. I spoke with the doctors about this as well, and they gave me some information so we can begin to set this up. I will share more information on this when it is available. (thank you Diane!!!). People have asked if I can donate my own blood in advance. I've been told yes, but it wouldn't be enough to meet my needs during the surgery.

Our next appointment is set for 22 February. We will have another ultrasound, and have a tour of the ISCU. We will then set up all of the appointments moving forward, including those with the specialists I mentioned above. I was able to meet with the social worker this past week as well and she addressed a number of my questions and concerns.

This is a very scary situation for us, as you can imagine. Given the limited number of cases it's hard to find others who have gone through this to relate to. We haven't told the kids anything about the risks to me, obviously. We're working on how to tell them that their brother will be in the hospital for a while - since we don't know how long, we are trying to figure out what is best. The social worker was great with that information as well. We appreciate your continued prayers.

Monday, January 28, 2013

I thought this may be the easiest way to keep everyone informed of how things are going with the pregnancy, and once baby J arrives, how to keep everyone updated on his progress. First I want to say we appreciate everyone's support as we continue to learn about and prepare for the pregnancy with the accreta. We had another appointment today with our Maternal Fetal Medicine (MFM) doctor through Evanston. She was very reassuring, and though they handle fewer of these cases per year than Northwestern (Northwestern sees one per month, Evanston sees several a year), the plans for treatment are similar and both doctors were good, so we have decided to deliver at Evanston. It's closer to home, so when J is in the NICU, it won't take quite as long to get down to see him or get home to the other kids.

She mentioned that if we had friends and family who want to donate blood, there will be an opportunity for that. We'll know closer to the delivery, and will let everyone who is interested know at that time. She mentioned that I will need blood, it's just a matter of how much. They will prepare as much as possible by having a gynecological oncologist (due to surgical expertise), urologist, interventional radiologist, and the NICU team onhand. J will be delivered between 34-35 weeks, depending on how he is doing, and how I am doing. During today's visit he looked great. He was moving all over, and had his hands (and feet) up by his face most of the time. He's measuring right on track, with no concerns for him at this point.

The doctor confirmed the prior doctor's plan for delivery, specialists, and planning for a hysterectomy, as this is the safest route for me. We now see the doctors every two weeks and will adjust plans and timelines accordingly after we see how J does and how I am doing. Until then, prayers are appreciated that things continue to go well, that I don't need bedrest, and that there are no complications.