Slow but Sure

ALL A BLUR

The past couple of weeks have seemed a bit crazy. If the doctors are right little Blakelee has been medicated enough to not even remember a thing about it!! She is doing much better than she was to start and we are glad she is doing as well as she is. She had her MRI on Tues May 3 and there was no sign of infection, but the docs wanted to talk to Mandi & Russell in person the next day about the findings :( Needless to say we spent a nerve racking night waiting to hear. All that worrying for nothing!!! The doctors said the pockets they had seen were only normal fluid, not puss and they saw one small vessel that had broke but was so small and not active so they didn't anticipate it would ever affect anything!! YEAH!!! She has been put on a gentler ventilator that only picks up the breaths that she doesn't breath. They have removed her arterial line out of her little forearm. No IV's except her pic line in her neck which is small. Back up to about 30 ml of milk every 3 hours. She is on some sedation & pain meds until they take the vent out then she will just have 1 more week of amoxicillin to finish out. At some point they will repeat a spinal tap to make sure infection is totally gone. She is doing remarkably well, I guess we just want her to be all better right now and she is taking her own sweet time ;) Now we just want Mandi to get feeling better. She went yesterday to the doctor and has bronchitis, she hasn't been able to go back to see Blakelee since Friday the 29th of April :'( The doctors hope by Sunday afternoon Mandi will be well enough to get back to see the babe & back to being the great mom she is!!!! Oh I forgot to mention last night in the night Blakelee decided she was tired of that old vent tube and pulled it clear out!!! Sadly she had to get a new one right back in . Tough little nut!!!

4/26/11 Pee, Girlie, Pee

Lets Never Do This Again

Early Saturday the 23rd, Mandi & Russ recieved a call from the NICU. Blakelee had several A& Bs and she was fussy around midnight. Not acting like herself at all. They ran labs and performed a spinal tap, they knew something was up probably an infection. Around 8 am when Mandi and Russ got to the NICU they had intubated and put Blakelee on the oscillating ventilator, which she hadn't been on since she was first born, and at that time only for a couple of hours. Her body was in extreme distress. They were having a hard time controlling her heart rate and blood pressure. They immediately put in an arterial line in her hand so they could monitor her blood pressure heart rate accurately. She still had her pic line in her neck so they had already began a wide range of antibiotics. Her soft spot on her head was some swollen, that and other signs pointed to spinal meningitis! Spinal meningitis is a condition that causes swelling and inflamation in the lining of the brain and spinal cord. Hers they later determined was caused by the same strep b infection she had before. Today, April 26th she is still a very sick little girl, but this afternoon she is showing some improvement. Her 02 settings are much lower, she is showing signs of wanting to breath on her own. They have weaned her off her blood pressure medicine and she is tolerating that well. She is moving some even with the sedation they have been giving her for comfort and also to keep her calm and so she will never remember any of this. The doctors told us this morning, she isn't any worse so that was the good news for the day. They have done ultrasounds on all of her organs to see if there is a spot the infection could have seated itself and laid dormant after the first time. She will be on antibiotic treatment for atleast 21 days to make sure they clear her of the infection. They will repeat a spinal tap when she is feeling better to check on that infection. They attempted 2 times yesterday but her little body was dehydrated on the inside and swollen extremely on the outside as you will see if we can get a picture to post. Again we know she will get better from this and look forward to more good days ahead!!!

The Calm Before the Storm GOOD FRIDAY

Mandi & Russell had such a good day Friday the 22nd! They had been able to visit Blakelee and she was in an open crib! That has never happened before and that brought all kinds of exciting and fun things. Among those were dressing her in pajamas for the first time, holding her as long as they wanted, being able to basically take care of her by themselves! The only thing medically was really having a nasal canulla with oxygen flowing in and her feeding tube. They enjoyed that all day with only one time about 4:00 pm of her having a small A & B. It was the greatest day so far!!

4/9/11 Slightly Swollen, but still a Sleeping Beauty

Poor girl, IV in each arm, ventilator taped in mouth and no feeding tube :'(

4/2/11 Sleeping Blakelee-The Calm Before the Storm

Notice all she has is a white feeding tube in her mouth and a

nasal cannula giving her a little extra oxygen

30 Day Roller Coaster

Wow, where to begin? Moved from room 3 to room 1. The lower the number the higher level of care is needed. On Tues. March 15 the doctors decided with everything in place ( pic line, ventilator, arterial line which was monitoring blood pressure) that Blakelee was well enough and needed to have the PDA surgery! The surgical team came over from Primary Children's and in a 45 min procedure went through a small incision(small for us) in her back between 2 ribs and clamped the little vessel and with a few stitches close it up. She did marvelous!! The week that followed she recovered and was able to start eating again, taken off the ventilator and put on cpap. Moved into room 2 where 1 nurse was to 2 babies, where room 1 you have 1 nurse for 1 baby. March 24, Grandpa Hogan and I decided we should go check on her before we left on our cruise on Mar 25, Mandi at this time had gotten sick and had to go home and wasn't able to see the babe for about 2 weeks or so ;( Blakelee was doing so well, she was up on her feedings, very few a&b's and the sweetheart of a nurse knew how hard it was for this grandma to go away for 10 days so SHE LET ME HOLD HER!!! Now remember I had only gotten to touch her with my finger like maybe 2 times before this so this was AWESOME!!! We felt so much better leaving and she did great while we were gone. Came back Sat Apr. 2, ran up to see her and Mandi and Russel were also able to go see her that night. She had been moved into room 6, just had a nasal cannula for extra oxygen, no ivs at all! She was still doing wonderful she had grown a lot since we were gone and looked like a perfect miniature chubby baby!!! No a&bs for like 2 weeks straight!!!! Everything was perfect! Thursday Apr 7, Mandi gets a call Blakelee in the night had had some a&bs, her tummy was swollen and she had a lot of left over food in her tummy when they would go to feed her again. Not Good! They were leaning toward an infection in her tummy, started antibiotics, drawing blood, put her back on the cpap to help with breathing. By Fri Apr 8, moved into room 4, she had a grade 4 a&b, (back on the ventilator) ,they had determined from xrays she had the necrotizing enterocolitis we had heard about when she was little, in her tummy, read in the Feb posts and it will explain this. By the afternoon we also knew she had developed strep B infection in her blood, and also an infection developing in the crud in her lungs. She was one sick baby, and scaring all of us to death!! Monday Apr 11, brings much better news! She is feeling much better! Blood work shows the strep has cleared and if stays clear she'll go off those antibiotics in a few days. Her lungs and breathing have improved and they will start trying to wean her off the ventilator AGAIN. Her tummy xray this morning was good enough if she keeps improving by Friday they should be able to start feeding her again. She had been up to 33 ml every 3 hours before getting sick so she will start missing that in a hurry and be sad again : ( They have also been able to almost eliminate the morphine and they have had to give her to control the pain and also the sedative to control her vitals. Her vitals would plummet when they would even touch her let alone change her diaper or draw blood. So thankful she is doing better, and as I sat with her and listened to the nurses talk and sing to the other babies I know she is in good hands and some very special people work in that NICU!!

Weekend Review

Let's see if I can patch together what has happened since the last post.

On Saturday morning Blakelee had 4 IVs. They were giving her nutrition, 2 antibiotics, and then the medicine to close the PDA. She got a blood transfusion on Saturday morning as well and that seemed to help things a lot.

 

The medicine that they give her to help close the PDA is kind of like ibuprophen and constricts the tissue. Well it worked on her kidneys and pretty much shut them down. In the picture above she is quite swollen from all the fluid build up. She's a little chubber. They started giving her lasix to help with the fluid and Mandi said last night that she wasn't quite so chubby. Before Saturday was out though she had an IV in each hand, one in the foot, one in the leg, one in her forehead and one behind her ear. 

They did a 3rd spinal tap on Saturday and it came back clear so they were able to stop the antibiotics and start feeding her a little.

Sunday morning they were able to put in a PIC line IV and were able to remove all the other IVs except the one behind her ear. I guess Saturday night the left lung was having trouble staying inflated but was much improved Sunday morning. As of Sunday afternoon she just had the pic line in her forearm and the arterial line in her leg. They are feeding her 3 mil every 3 hours. 

They will let Blakelee rest for the week and probably check the end of the week to see if the PDA had closed. They are upping her feedings today and starting to wean her off the vent. Long week for the babe, I hope this next week is calmer for her.

Back on the Vent

They put Blakelee on the ventilator this morning. She had another grade 4 A&B early this morning. Rather than continue to ride the roller coaster they put her on the vent. This way she can rest and not fight to keep her stats up. They were going to do another spinal tap this morning because the one they got the other day had too much blood in it. They are going to hold off on that now and just let her rest.

I'm not sure why they let me update this blog because I seem to forget so many things. Yesterday they started medicine to treat her open PDA.

"The Patent Ductus Arteriosus (PDA) is a blood vessel that connects the main vessel leading to the lungs to the main vessel of the body. When babies are in the womb, this blood vessel is open because babies aren't using their lungs to breathe so it allows most of the blood to bypass the lungs and go to the rest of the body. Once babies are born, the blood vessel will gradually narrow and then close after a few hours or days. In preemies, especially those who have had respiratory distress syndrome, the blood vessel may stay open."

  

When they did the heart echo on Tuesday they found that the PDA was still very open. Yesterday they started giving her the medication to hopefully close it. Today they started a second IV of the medicine, so now she has one in her hand and one in her leg. They will do another heart echo tomorrow and see if any progress has been made to close the PDA. Although they don't think that the open PDA is causing the severe A&Bs it is something that needs to be taken care of. If the medicine doesn't work in closing the PDA they will talk about surgery. We should know more after the echo tomorrow.

Please keep our little one and her family in your prayers. This part isn't being very fun.

*PS - They still won't feed her until this is all figured out. Super Sad, she loves her food and she hasn't eaten since Monday.

4 Steps Back

On Monday Blakelee weighed 2lbs 3oz. Today she weighs 1lb 15oz.

I forgot to mention in the last post but on Tuesday when she had her episode they stopped feeds. I asked the nurse if they worried about Blakelee losing weight and she assured me that they didn't because they were still giving her nutrition through the IV. Well, I'm just gonna say it, SHE IS A LIAR. I mean that in the kindest way possible.

Now people, I can gain 2lbs on any given day so I just don't see the problem. All she needs is 2 pieces of toast with peanut butter and jelly and a glass of chocolate milk every morning. For lunch we could get her a bacon cheeseburger from Apollo Burger. Then a chicken chimichanga from Joe Bandidos for dinner. It works great for me.

So can we get some extra prayers for this little one to gain some weight. Kind of sad and discouraged this morning hearing about dropping below the 2lb mark. She is doing great with the breathing. Nothing really conclusive on the tests yet and we hope they will start feeding her again this afternoon.

Super Naughty

Blakelee had her first super naughty day yesterday. SCARY.

Grandma Ho never calls me at work unless there is something wrong. So when she called me yesterday morning I knew we had some trouble. Blakelee had two level 4 A&B's yesterday morning. Level 4 means that she wouldn't start breathing on her own or with stimulation so they had to use a bag to resuscitate her.

The doctors and nurses are just so great. Blakelee was immediately put on 2 antibiotics. And then they went to work trying to figure out why it happened. She had all sorts of tests during the day, x-rays, heart echo, spinal tap, blood tests, and urine samples. Most of the tests take 24 hrs to get results back so hopefully we will know today. Blakelee is back on the c-pap but just very low oxygen. The c-pap just puts a little force in the air to remind her to breath. She is totally stable right now. Even this morning they said that she had one small A&B during the night but other than that did really well.

I will update again when I know more.

My most exciting visit with Great Auntie Tara :)

Little Miss Blakelee is doing so well right now. As of today they have moved her to room 3! This also means that Mandi and Russell are able to hold their baby girl twice a day (once every shift) for up to 30 minutes as long as her vitals stay good during the holding. She also weighs 2 lbs. 3 oz. So now she has made it past her birth weight and 2 lbs 2 oz. Good job Blakelee and we hope you continue to gain weight quickly :) They have upped her feedings to 18 ml every three hours so that is great.

Mallary and I were able to go up and visit on Friday. I got to put my hand on her back but she really didn't act like she liked it so I stopped. It is so unbelievable to touch a baby that small. Any baby brings a tear to my eye, but it is just remarkable to be able to be close to such a sweet baby straight from heaven. When I went back the second time Mandi was able to hold her skin to skin again. She is so content when Mandi is holding her. She is pretty wiggly when she is in her bassinet. The nurse told Mandi that she should do skin to skin all the time because the baby's vitals do so well when she does. Oh but Miss Blakelee was being a little naughty when I was in there. . . Her food had just gone through her feeding tube and she started to have an A&B. I was not thinking that these were as scary as they soon proved to be. Basically what happens is the baby gets tired and forgets to keep breathing. The nurse came over when Mandi said that she was having one and tried to adjust the baby's position to fix the problem. When I looked at her tiny little face it was turning red and then to a darker purple color. I was FREAKING OUT!

The nurse then took the baby from Mandi to stimulate her breathing. She would adjust her oxygen and take big deep breaths and baby girl just didn't want to do it. Finally after being unwrapped and having her back patted and her chest rubbed she came out of it. I was so happy to see her numbers go back up to what is normal for her. It had to have been 2 minutes and I was shaking and about to cry the whole time. So so scary and Little Miss Blakelee should never do that to me again! Mandi was completely calm but I could tell the nurse was a little flustered over how long it was taking her.

This is a quote I found, "A baby is an angel whose wings decrease when her legs increase."
I truly think that Blakelee is such a special baby. Such an angel, and although I know she is here now I think she spends quite a bit of time still wrapped in our Heavenly Father's arms while she continues to get strong and grow. We are so thankful for the blessings that Blakelee and her mommy and daddy have received so far. We continue to pray that all will be well and that all she does exciting from now on is getting bigger :)

* Also on a side note, Mandi had a horrible toothache and had to have some dental work done while she is out there. It's so great that they could take care of it right there in the hospital.

Love, Your Great Auntie Tara

Update Tuesday 3/1

Blakelee is doing so well. She weighs 2 lbs even right now. That is down an ounce from yesterday. She is still doing the A&Bs.

I got to go spend the afternoon with Mandi & Blakelee yesterday. I haven't been there since she was born. You can look at the pictures but they just don't do justice to how small she really is in real life. It was shocking to see her again. The video below shows Mandi touching her so you can kind of get an idea of how tiny she is.

She just wasn't very comfortable and was moving around a lot. Miss Blakelee was being kind of naughty while I was there. First she pulled the temperature probe off, then a little while later she pulled the feeding tube out. Naughty naughty. I'm sure she used up too much energy doing all of that. The little stinker can now lift her head up and turn it over.

Feedings are 17 mil right now and she is doing so great on them, she is able to digest all of it. The nurse said on a 17 mil feeding she can maintain the weight she is right now. As they gradually add more to the feedings she will be able to gain.

Now for the best part of my visit. I was able to touch little Blakelee. OH MY GOOD GRACIOUS. She was laying on her back with her little hands on her chest. I put my hand over hers and just held her there for a minute. It literally took my breath away, I was scared and excited. She is just such a little miracle and to hold that in your hand is just incredible. I can't wait until Mandi & Russ get to hold her and kiss her. It doesn't sound like they will have to wait much longer. It's so hard to be there with her and not pick her up and snuggle. 

We probably won't update everyday now. Thankfully there isn't a lot to update about.

Sunday Update 2/27

Blakelee did great through the night. They are removing the tube from the tummy. Going back under the lights and going up to 12 ml on the feedings.

Quote from Mandi's facebook 2/26 :

"Well my baby is a week old today. She gained 1 oz since yesterday So she is 2 lbs 1oz right know. When I was changing her diaper and doing the temperature, the nurse told me that I could hold her when she was changing the bed. I held her she is so tiny it was a great moment I love that little girl!"

Saturday Night Update 2/26

The nurse just said the tummy is shrinking. They won't even do an x-ray tonight. If she is doing this well tomorrow morning they will take IV out of the belly button.

Blakelee will be on minimal O2 and no IV at all. If all continues as is they may upgrade her to Room 2 at the first of the week and hopefully just eat and grow for a couple months.

Thank you all for your prayers, they're working.

Pictures And Videos From The Past Week

Birthday Girl

Hard to believe that Blakelee is one week old. I thought it would be fun to share with you a funny story from the morning she was born.

Let me set the stage. It had been a very tense 24 hours. Even though things had gotten so much better for Mandi once she got the epidural it almost made us more nervous because then she wasn't able to feel things changing. Then the doctor warned us that with such a tiny baby Mandi wouldn't need to be dilated to a 10 in order to have her. What????? Immediately the image of Mandi sneezing and birthing this babe came into my mind. We became hyper-sensitive to any move that Mandi made. We were constantly asking her, "Is anything wrong, different, strange?"

So there we were Saturday morning and Mandi gets a strange look on her face. We ask what is going on and she says that she feels "wet". Of course Grandma Ho and I run over there, through back the blankets to see what we can see. Poor Mandi didn't even have a chance to be modest. Before I can even get a good look at things Merralee says, "Ahhhh somethings coming." She goes running to the door, throws it open and yells down the hall that we need help in here. We were down the hall around the corner from the nurses station and I knew that probably no one had heard her, so I went running down the hall until I found a nurse and I yelled at her that we needed help, we were having this babe. I run back in the room followed by nurses and doctors who start checking Mandi.

Turns out we were a little over zealous in our evaluation. No, no baby was coming just then, her water had just started to break. We now believe that what Grandma Ho thought was the baby was pro. bably just Mandi's butt cheek. Good times, good times. That really got our blood pumping I tell you. We weren't too far off though because little Miss Blakelee made her appearance about 30 minutes later.

*If sharing this story doesn't get me blacklisted from updating this blog I'm not sure what's gonna do it.

Now for this morning's update, from Grandma Ho:

I talked with Blakelee's nurse Lisa this morning and she had a really good night.  No A&B's since yesterday.  They did put a feeding pump on her feeding tube, which will still feed her same 10 ml, just slowly over 30 min instead of draining all at once into her tummy.  Her tummy has been a little swollen yesterday and today so they did an x-ray this morning to check for a POSSIBLE condition called necrotizing enterocolitis.  Again they are just monitoring her for this but a swollen tummy is a symptom.  Necrotizing enterocolitis is the death of intestinal tissue. It primarily affects premature infants or sick newborns. Necrotizing enterocolitis occurs when the lining of the intestinal wall dies and the tissue falls off. The cause for this disorder is unknown. However, it is thought that a decrease in blood flow to the bowel keeps the bowel from producing mucus that protects the gastrointestinal tract. Bacteria in the intestine may also be a cause.  They will continue to monitor her tummy size and check with x-rays as needed.  We're hoping it is nothing and she just inherited her Grandma Ho's belly!!  Otherwise she is doing remarkably well and even as we have worried about our little one, we are grateful for our blessings as we overhear the problems of some of the other tiny ones that are there. As of last night she weighed in at 2lbs even. Baby Blakelee picked a wonderful mommy & daddy to come to and they are doing such a good job!!!!

Friday 2/25 11:30am

Neonatologist says everything is GOOD!!

Brain ultrasound came back CLEAR, no bleeds. YAHOO.

They are taking her off the lights for the day.

Tummy Time

Update Friday Morning 2/25

Everything is good this morning. No A&B's in the night, YAY!!!. She is down to 1 1/2 liters of oxygen. Her digestion is a little slow. She is still on the lights.

They weighed her again last night and she is holding steady at 1lb 15oz.

Note to all you slackers who read this blog: We want some comments. Don't make me turn this blog private.

A word from Grandma Ho

 Blakelee's Diaper

Well, back on the lights for a while but that's okay. Oxygen still good at 2 liters. If they ever take her up to 5 liters that's when they might put her back on the c-pap to force air but so far so good. Aunt Sherri & Uncle Steve stopped in to visit for a bit. Mandi going home to lay down for a bit. Surprising even how tired I get just sitting and I have to remind her she did just have a baby it's okay to rest. She is doing a great job with everything!!

Thursday Morning Update 2/24

I was only able to talk with Grandma Ho for a minute this morning. Everything is still looking really good. They did the head ultrasound this morning and should get those results this afternoon. One of the biggest concerns with such a tiny baby is a bleed in the brain. Stimulation and activity can cause them to have a bleed. That is why they try not to touch her anymore than they have too. Pray for good results.

Blakelee has been taken back down to 2 liters on the oxygen. She has been turned on her tummy to help with her O2 stats.

I believe Merralee said that she is on 6mil for each feeding right now. When she was weighed last night she was 1lb 15 oz. She must get the losing weight gene from Russell's side of the family because our side of the family has never had a problem gaining weight. They tell us that it is normal to lose weight at first. They will start weighing her every night now.

Wednesday Afternoon Update 2/23

Everything is still stable.

She is on 4 liters of oxygen to hold of the A&Bs. (Apnea & brachycardia - low breath & heart rate). Blakelee is still just on the nasal cannula, which is fantastic.

I thought that 4 liters sounded like a lot but Grandma Ho says that the nurses don't act like it is. She did say that it has been upped from 2 liters to 4 though.

I know that Grandma Ho mentioned it on Facebook and I didn't put it on here. The doctor said that there is always a certain honeymoon stage with these babies. So even though she is doing so well we know there will be bumps in the road. We are just so grateful for the blessings so far and continue to pray for many more.

We are already so in love with little Blakelee and are praying for her constantly. Mandi we are so proud of the way you are handling all of this. Russell I am so grateful that Mandi has you, thank you for being so good to her. You are already a terrific dad.

Love,
Aunt Gina

Wednesday Morning Update 2/23

Report coming from Grandma Ho.

Babe did well through the night. Did have a couple a+b times where she forgets to breath then they give caffeine. They expected she would have more of these than she has had. So still doing great. She will normally have these when she gets tired doing something she shouldn't be doing.

Both eyes are open today a little here and there.

Tuesday Morning Update 2/22

Grandma Ho reports that they were able to talk with the neonatologist this morning. He says Blakelee is doing excellant for a 26 weeker. She is basically breathing air with as much oxygen as we do. He also said that the steroids that were given to Mandi along with Mandi's stress during labor were good for the babe's lungs. She is still under the lights.

Monday Morning Pictures 2/21

Another Monday Update 2/21

Just got an update from Grandma Ho (Hogan, but isn't it funner to say Ho?)

Blakelee is a little jaundice so they have turned on the lights. They have upped the oxygen a little and given her a little caffeine to help her breathing.

She is still doing very very good.

Monday Morning Update 2/21

I think that I might have left out some information in the last posts.

They believe the placenta was infected and that is why all of this happened. The placenta looked really bad and smelled worse. It had started to tear apart.

After the baby was born she was only on the ventilator about 2-3 hours. They put her on a c-pap machine to force a little air into the lungs. She is doing so well this morning that they have removed the c-pap and she is on just a regular nasal cannula. Wow, she is doing so amazing. They also started to feed her yesterday.

More Baby Pictures

Ohhhhh, Aunt Gina just got to go see her. Yay, yay, yay. I went with Russell and let me tell you he is one proud daddy. He was so cute telling me everything about his baby girl. Her name is Blakelee.
Here are some new picture. Lots of black hair and just perfect.

Baby Madsen Pictures

 

 

Update #2 2/19

She is here. 10:07 and she weighs 2lbs 2 oz. Mandi is doing great. We don't know much about baby right now.
We will post a picture as soon as we can.

Mandi Update 2/19

Ok, instead of trying to call a gazillion people to keep them updated about Mandi and babe we are going to try and update this blog for everyone.
Let's talk about how we got here. Mandi went to the Roosevelt hospital Thursday night about midnight because her back hurt so bad. When she got there she was dilated to a 1. By morning she had progressed to a 3. They sent her by Air Med to the U of U hospital. She was in a lot of pain but no contractions were showing. In the late afternoon they gave her an epidural and that was such a relief for her.
Mandi is just 26 weeks along and they estimate the baby weighs between 1.5 and 2 pounds. They think that she probably has an infection and if so it would be better for the baby to be out in the world. About midnight last night things calmed down. She hadn't dilated past a 5 in several hours so we left her to go get some sleep. They turned the epidural off so that she would be able tell if anything changed.
About 6 this morning we got the call that she had dilated to a 6 and the docs had decided that she is just going to have to have this babe today. It is almost 10am now. She is dilated to a 7 and although leaking fluid the water hasn't broken completely. She is on pitocin now and moving right along. I can tell that Mandi is nervous but is doing so well and being so brave.
I will try to update often but who knows. Please pray for them. This baby is tiny.