OK Bad News...If There Is Such a Thing

Well the results from the brain ultrasound are in so I'll just cut to the chase. Kayley has a grade 2 bleed or intraventricle hemorrhage (IVH). Here are the list of grades:

• Grade 1 - Mild - The mildest bleeding that does not reach the ventricles.
• Grade 2 - Mild - Some blood enters the ventricles without enlarging them.
• Grade 3 - Moderate - A lot of blood in the ventricles that causes them to swell.
• Grade 4 - Severe - The hemorrhage occurs beyond the ventricles, in the substance of the brain.

I'll explain a little about an IVH. There is no way to stop them...only ways to lower the risk of them. Once a baby has it, there is no way to fix it. They can't just go in and drain the blood. It gets more severe with the amount of blood that enters the ventricles. Ventricles are chambers in the brain that store fluid that protects the brain and spinal cord. If a lot of blood gets into the ventricles, it can cause the fluid to stop flowing and the ventricles to swell into the brain substance. That's where it can damage brain tissue and lead to long term problems.

So obviously it's best to have no IVH's and that's what we were really hoping for. But, a grade 2 IVH was found. We are optimistic because of the low risk that this will lead to something severe. A lot of the Grade 1 and 2 IVH's just get absorbed back into the body with no long term affects. There is a small chance it could get worse, but babies usually show small symptoms when this happens. They could have trouble breathing, their head could swell, their blood pressure could be unstable, their blood gas tests could be abnormal, etc. Kayley so far has had none of these (see below post about her being a star). So again, we are optimistic. The next steps for this is to do another ultrasound after a while to see if the IVH is larger or smaller. Smaller is better but even if it is larger, it may not be a huge issue. In a book we have about premature babies, it says that even if it is larger, there is a small risk that they baby's good prognosis will change. We're going to go with that.

A lot of this information is from what we've read and what the nurses have told us. Tomorrow, we'll find out a lot more when we talk to the doctor doing the rounds.

The rest of the day brought on some progress. Since Kayle's blood gas test results continue to be right on track, her ventilator settings were lowered yet again. She is now only receiving 10 breaths a minute. She's regularly taking 50-60 per minute on her own. So, the doctor said this morning that tomorrow is the day when we try to take her off the ventilator again. She looks very ready. I think she's even trying to pull the tube out herself. Tonight, there were a couple times where she had a good grasp of the tube. The nurse had to constrain her arm so she quits doing that. Too bad I'm too slow with the camera. I didn't get a shot of it.

Kayley also received a Percutaneous Central Venous Catheter...right...that's what I said. Basically it's an IV that gets put in in her arm or leg and snakes up a vein close to her heart. It replaces the IV in her belly button that goes directly into an artery up to her heart. They do this because the one in her belly button can only last so long and is more prone to infection. The new PCVC can last a month or so. They run it up close to her heart so they can administer medicine more centrally. So now, she is down to just one IV in her belly button.

Lastly, Kayley received her first 3 feedings of breast milk today. The feedings are administered every 6 hours to begin with through a tube that is put in her mouth down to her stomach. The first feeding of 2 cc's was given to her at 8 am. At the second feeding around 2 pm, they first checked to see if there is any residual (processed breast milk still in her stomach) left from the first feeding. There was none. So, another feeding of 2 cc's was given. At the 8 pm feeding, some residual was found. So, they got rid of that and gave her another 2 cc's. If she doesn't push this feeding through, they may postpone the subsequent feeding. If she starts to handle these feedings, they start to up the amount and shorten the time between feedings. We are told it takes a few times to get her stomach moving. Again, feeding is one of those things that will take time. Until she handles breast milk through the tube, she will still be getting nutrition through the remaining IV in her belly button.

**The photos are just some miscellaneous shots from today. Stretching out. Feet. Hand.

Jaundice, Peacefulness, and Anxiousness for Tomorrow

I wrote in a previous post that Kayley is expected to have jaundice in the coming days. Well, that day was today. I woke up this morning to Kayley's triple strength lamp attached to her isolet (that's the medical term for "bubble"). The lamp is to help get rid of the high levels of bilirubin in her blood. This morning's test showed a bilirubin count of 10.6. I remarked to the nurse that the number didn't seem to high to me since Drew reached 18 after he was born. She quickly reminded me that Kayley wasn't born 8 lbs 8 oz like Drew and she's premature. Though this level isn't dangerous to her, it's high enough to act on.

So, Kayley lays in her isolet in the direct light of the lamp wearing her blindfold. And in NICU fashion, she receives routine tests to ensure her bilirubin counts are going down. As of 6 pm tonight, her count was down to 9.1. Although it's good that is going down, she will still need the lamp for awhile. Our night nurse informed us that when she gets down to 5 or so, the lamp will be weened off. Even then, the jaundice will surely not stay away forever. More blindfolding and lamps appear to be in Kayley's future.

Other than the jaundice, today has been a very peaceful day. Kayley has been a star. She has been very calm and restful. She is building the strength needed to cross the many bridges in her stay here at the NICU. One of the next bridges is to give another try at getting off the ventilator. We're still not sure when that will be, but given the very low settings on the ventilator and the amount she breathes for herself over it, the second attempt can't be far away.

So with the 3rd day almost complete, we look forward to tomorrow. It's a day that makes us very anxious. Kayley will have her brain ultrasound to check for brain bleeds. They are one of the many risks that come with being premature. Although she hasn't displayed any signs of a bleed, it is still very frightening. We won't get the official results for 24 hours. However, we are told that depending on the technician, we could receive some unofficial results soon after it is complete. So, let's hope and pray for good news and another bridge crossed in Kayley's journey.

**The photos are of Kayley in the isolet under the lamp, Kayley lying on her belly, and Kayley holding my finger. The last one is intended to show her size. Even though she is big for her age, she is still very small.

The Diaper Changing Machine

Even though Kayley is our daughter, we're still working up the courage to touch her. We're scared of hurting her or doing something wrong. Well, I owned up to my fear and said yes to the nurse's third offer to change Kayley's diaper. As you can probably imagine, it's a lot different than changing a full term baby's diaper and especially a lot different than changing Drew's. With Kayley being so young, there are some extra things to remember. You never want to lift her legs over the level of her head. That would cause blood to rush to her head causing pressure in her head and a higher risk of brain bleeds. Also, there are many wires and tubes that need to be worked around in order to not knock any of them loose. And last, even the super small diapers they have here are still too big for Kayley, so some folding needs to be done. With all this in mind, I successfully completed my first Kayley diaper change tonight!

Update on Megan

I received a couple inquiries on how Megan is doing so I figured I'd go ahead a let you all know on the blog. Megan had a c-section again as you all know. It wasn't a real easy one as Kayley was stuck. So, with all the pushing and pulling on Megan's abdomen, she was pretty sore. However, she's a pro at staying on top of her pain pills so that has helped out a lot.

On Monday after catching up on some sleep, the nurses made her get up and walk 3 laps around the nurses' station. It was slow, but she did it. She even got up again that night to walk 3 more laps. I think there was a little extra inspiration since Kayley is in the NICU and Megan needed to prove she could handle walking before she could come down.

Sure enough, Megan sent me a message Tuesday morning for me to come up and walk down with her to the NICU. She walked the whole way...which isn't a very short distance. Since then, she's been strong enough to do it on her own multiple times a day. So, I'd say she's doing very well.

She will either be discharged tomorrow or Friday. She actually wants it to be Friday so she can stay at the hospital in her room with Kayley just a floor away. Even though the couch in Kayley's room is good to sleep on, it would not be soft enough for someone who just had a c-section. And since she had a c-section, she cannot drive for 2 weeks. So, she wants to be here as long as she can so she doesn't have to depend on a ride to get down here. And since I'll be staying at the hospital, that would mean either I go get her or her mom brings her down.

Off the Ventilator!...And Then Back On.

Kayley's fiesty-ness along with her great blood gas and x-ray results told the doctor and respiratory nurse that Kayley could be moved to the normal ventilator that breathes like we do rather than the 600 times per minute. It's great progress. That move was completed before noon on Tuesday, June 10. Kayley did great and even seemed to calm down a bit. The new ventilator gave her 25 breaths to start. Kayley was allowed to do the rest on her own. The monitor showed she was breathing around 60 times a minute. That means she was breathing 35 times a minute on her own. The ventilator senses when she takes a breath so it does not attempt a breath the same time Kayley is performing one on her own. These things are amazing.

Kayley was steadily registering good results on her tests. This allowed the settings on the ventilator to be turned down, giving Kayley more power and eventually pushing the doctor and respiratory nurse to make the decision to take her off the ventilator completely. This is a huge step. She would still be on a machine called a CPAP though. It maintains pressure in her lungs to help keep them inflated. However, she would breathe all by herself. She also would need some caffeine. Caffeine stimulates the part of the brain that tells her to breathe.

So it was done. Kayley was taken off the ventilator around 5 pm and put on the CPAP machine. Initially, Kayley did very well. The respiratory nurse was very happy. Then after about 15 minutes, the nurse noticed that Kayley was struggling just a bit. After trying to stimulate her some more and suction mucous out of her mouth, she realized Kayley still wasn't performing as well as she was initially. The nurse practioner came in and tried to suction more with a bulb syringe and stimulate her breathin with a bag ventilator. Nothing was working. They couldn't waste any more time as Kayley's heart rate started dropping. They worked to get the tube back into Kayley's lungs so they could put her back on the ventilator. Megan and I just watched as Kayley was struggling to breathe as her heart rate dropped dangerously low. Needless to say, we were very scared.

Finally, the tube was back in and the ventilator was back on. Kayley's heart rate began to rise. She was going to be ok. This, they told us, is part of the roller coaster ride we were going to be on the next couple months. Just when it looks like nothing can stop her development, something like this can happen. We are very grateful that the follow up blood gas test and chest x-ray came back great. Kayley will be on the ventilator for at least another day. Hopefully the next go around goes a lot better.

Due to this episode, they cancelled the feedings of breast milk for today that Kayley was going to receive for the first time. They said that she had been through enough for today. They want her to rest. And that's what she is doing right now. She is nice and cozy in her little nest. The monitor that we all pay so close attention to shows great numbers. Kayley is minutes away from being through the first 48 hours. Let's hope this roller coaster ride isn't as bumpy as it was for that brief moment today that seemed like an eternity.

**The picture is from after Kayley was taken off the ventilator and before she was put on the CPAP mask. She is still dirty from the labor. Since she is still on the high end of being a small baby, she is under the small baby protocol. Among other things, this means she cannot be bathed for 1 week. Her hair is actually blonde.

The Fiesty One

Ever since we got Kayley back to the room, the nurses have called her fiesty. She can be as calm as can be but if someone starts messing with her (drawing blood, changing her diaper, etc.), she starts fighting with them. The arms and legs start going and she cries...or at least looks like she's crying. We can't hear anything yet because of the tube in her throat.

Every doctor and nurse has noticed it. She's been called fiesty at least 10 times. It's a good thing to be fiesty, but just not right now. The doctors and nurses want Kayley to rest as much as she can. Therefore, she receives a sedative to help keep her calm. Megan and I have even sprung into action. Premature babies like to be contained. We place our hands over her legs, arms, and head to contain her and keep her from moving too much. It's amazing how this works. She calms right down...only to become fiesty towards the next doctor or nurse to disturb her sleep.

The best thing about it is that she maintains a healthy heart rate and blood pressure during these times. They go up a bit, but nothing to get worried about. It's way better than the alternative. The nurses mention how good it is that her heart rate and blood pressure do not drop when they handle her. A lot of premature babies do drop causing more concerning situations.

So I guess Megan was right when she kept saying, "Your daughter is kicking me again!"

Tests....and More Tests

As you can imagine, Kayley is monitored pretty heavily. Along with the monitoring comes lots of tests. Just hours after arriving in our NICU room, Kayley's blood was drawn to measure her blood gases. This test measures ph, oxygen, carbon dioxide, and bicarbonate in her blood. These values help determine what settings the ventilator needs to be on and when the ventilator can be removed all together. The first test came back saying her carbon dioxide level was high. They adjusted the ventilator settings accordingly. Other than that, they were very happy.

Just after her her blood gas test, x-rays were taken of her chest. Her lung development is the most important at this point. That's why they gave Megan steriods while Kayley was still inside. Well, I guess they worked. They are very impressed with Kayley's lung development. They are very clear and nicely expanded. This also helps them decide if they should take Kayley off the ventilator.

After 12 hours, it was time for more tests. They drew more blood to measure all kinds of things...more things than I can remember. Among them was to measure her bilirubin levels to check if she has jaundice. That came back clear...this time. They suspect she will have it in the coming days. The other measure that was slightly off was her calcium level. The level was too low. To remedy this, the nurses had to insert another IV into Kayley's hand. They couldn't give it in her stomach IV because it doesn't mix well with what they were already giving to her. Anyway, I watched them put the IV in Kayley's hand. I'm pretty sure I was more hurt than Kayley. In the picture in the previous post, that's why you can see an IV in Kayley's left hand.

Since the 12 hour tests, Kayley gets the blood gas test 3 times a day..6 am, 2 pm, and 8 pm. She also has x-rays at least once a day in the morning. Both the x-rays and blood tests can be ordered at any time if they feel it is needed.

So that's all as far as tests go. Her brain ultrasound is scheduled for Thursday. We are very nervous for that one. It shows if there are bleeds in her ventricles. Those can be very dangerous if they are too large. We hope that everything comes back normal.